THE OFFICIAL PATIENT’S SOURCEBOOK
on
J AMES N. P ARKER , M.D. AND P HILIP M. P ARKER , P H .D., E DITORS
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ICON Health Publications ICON Group International, Inc. 4370 La Jolla Village Drive, 4th Floor San Diego, CA 92122 USA Copyright Ó2002 by ICON Group International, Inc. Copyright Ó2002 by ICON Group International, Inc. All rights reserved. This book is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without written permission from the publisher. Printed in the United States of America. Last digit indicates print number: 10 9 8 7 6 4 5 3 2 1
Publisher, Health Care: Tiffany LaRochelle Editor(s): James Parker, M.D., Philip Parker, Ph.D. Publisher’s note: The ideas, procedures, and suggestions contained in this book are not intended as a substitute for consultation with your physician. All matters regarding your health require medical supervision. As new medical or scientific information becomes available from academic and clinical research, recommended treatments and drug therapies may undergo changes. The authors, editors, and publisher have attempted to make the information in this book up to date and accurate in accord with accepted standards at the time of publication. The authors, editors, and publisher are not responsible for errors or omissions or for consequences from application of the book, and make no warranty, expressed or implied, in regard to the contents of this book. Any practice described in this book should be applied by the reader in accordance with professional standards of care used in regard to the unique circumstances that may apply in each situation, in close consultation with a qualified physician. The reader is advised to always check product information (package inserts) for changes and new information regarding dose and contraindications before taking any drug or pharmacological product. Caution is especially urged when using new or infrequently ordered drugs, herbal remedies, vitamins and supplements, alternative therapies, complementary therapies and medicines, and integrative medical treatments. Cataloging-in-Publication Data Parker, James N., 1961Parker, Philip M., 1960The Official Patient’s Sourcebook on Celiac Disease: A Revised and Updated Directory for the Internet Age/James N. Parker and Philip M. Parker, editors p. cm. Includes bibliographical references, glossary and index. ISBN: 0-597-83263-3 1. Celiac Disease-Popular works. I. Title.
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Disclaimer This publication is not intended to be used for the diagnosis or treatment of a health problem or as a substitute for consultation with licensed medical professionals. It is sold with the understanding that the publisher, editors, and authors are not engaging in the rendering of medical, psychological, financial, legal, or other professional services. References to any entity, product, service, or source of information that may be contained in this publication should not be considered an endorsement, either direct or implied, by the publisher, editors or authors. ICON Group International, Inc., the editors, or the authors are not responsible for the content of any Web pages nor publications referenced in this publication.
Copyright Notice If a physician wishes to copy limited passages from this sourcebook for patient use, this right is automatically granted without written permission from ICON Group International, Inc. (ICON Group). However, all of ICON Group publications are copyrighted. With exception to the above, copying our publications in whole or in part, for whatever reason, is a violation of copyright laws and can lead to penalties and fines. Should you want to copy tables, graphs or other materials, please contact us to request permission (e-mail:
[email protected]). ICON Group often grants permission for very limited reproduction of our publications for internal use, press releases, and academic research. Such reproduction requires confirmed permission from ICON Group International Inc. The disclaimer above must accompany all reproductions, in whole or in part, of this sourcebook.
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Dedication To the healthcare professionals dedicating their time and efforts to the study of celiac disease.
Acknowledgements The collective knowledge generated from academic and applied research summarized in various references has been critical in the creation of this sourcebook which is best viewed as a comprehensive compilation and collection of information prepared by various official agencies which directly or indirectly are dedicated to celiac disease. All of the Official Patient’s Sourcebooks draw from various agencies and institutions associated with the United States Department of Health and Human Services, and in particular, the Office of the Secretary of Health and Human Services (OS), the Administration for Children and Families (ACF), the Administration on Aging (AOA), the Agency for Healthcare Research and Quality (AHRQ), the Agency for Toxic Substances and Disease Registry (ATSDR), the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Healthcare Financing Administration (HCFA), the Health Resources and Services Administration (HRSA), the Indian Health Service (IHS), the institutions of the National Institutes of Health (NIH), the Program Support Center (PSC), and the Substance Abuse and Mental Health Services Administration (SAMHSA). In addition to these sources, information gathered from the National Library of Medicine, the United States Patent Office, the European Union, and their related organizations has been invaluable in the creation of this sourcebook. Some of the work represented was financially supported by the Research and Development Committee at INSEAD. This support is gratefully acknowledged. Finally, special thanks are owed to Tiffany LaRochelle for her excellent editorial support.
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About the Editors James N. Parker, M.D. Dr. James N. Parker received his Bachelor of Science degree in Psychobiology from the University of California, Riverside and his M.D. from the University of California, San Diego. In addition to authoring numerous research publications, he has lectured at various academic institutions. Dr. Parker is the medical editor for the Official Patient’s Sourcebook series published by ICON Health Publications.
Philip M. Parker, Ph.D. Philip M. Parker is the Eli Lilly Chair Professor of Innovation, Business and Society at INSEAD (Fontainebleau, France and Singapore). Dr. Parker has also been Professor at the University of California, San Diego and has taught courses at Harvard University, the Hong Kong University of Science and Technology, the Massachusetts Institute of Technology, Stanford University, and UCLA. Dr. Parker is the associate editor for the Official Patient’s Sourcebook series published by ICON Health Publications.
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About ICON Health Publications In addition to celiac disease, Official Patient’s Sourcebooks are available for the following related topics: ·
The Official Patient's Sourcebook on Appendicitis
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The Official Patient's Sourcebook on Autoimmune Hepatitis
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The Official Patient's Sourcebook on Bacteria and Foorborne Illness
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The Official Patient's Sourcebook on Barrett's Esophagus
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The Official Patient's Sourcebook on Cirrhosis of the Liver
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The Official Patient's Sourcebook on Constipation
·
The Official Patient's Sourcebook on Crohn Disease
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The Official Patient's Sourcebook on Cyclic Vomiting Syndrome
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The Official Patient's Sourcebook on Diarrhea
·
The Official Patient's Sourcebook on Diverticular Disease
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The Official Patient's Sourcebook on Fecal Incontinence
·
The Official Patient's Sourcebook on Gallstones
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The Official Patient's Sourcebook on Gas
·
The Official Patient's Sourcebook on Gastritis
·
The Official Patient's Sourcebook on Gastroparesis
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The Official Patient's Sourcebook on Hemolytic Uremic Syndrome
·
The Official Patient's Sourcebook on Hemorrhoids
·
The Official Patient's Sourcebook on Hepatitis a
·
The Official Patient's Sourcebook on Hepatitis B
·
The Official Patient's Sourcebook on Hepatitis C
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The Official Patient's Sourcebook on Hiatal Hernia
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The Official Patient's Sourcebook on Hirschsprung
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The Official Patient's Sourcebook on Indigestion
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The Official Patient's Sourcebook on Inguinal Hernia
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The Official Patient's Sourcebook on Intestinal Pseudo-obstruction
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The Official Patient's Sourcebook on Irritable Bowel Syndrome
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The Official Patient's Sourcebook on Lactose Intolerance
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The Official Patient's Sourcebook on Ménétrier
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The Official Patient's Sourcebook on Pancreatitis
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The Official Patient's Sourcebook on Peptic Ulcer
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The Official Patient's Sourcebook on Porphyria
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The Official Patient's Sourcebook on Primary Biliary Cirrhosis
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The Official Patient's Sourcebook on Primary Sclerosing Cholangitis
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The Official Patient's Sourcebook on Proctitis
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The Official Patient's Sourcebook on Rapid Gastric Emptying
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·
The Official Patient's Sourcebook on Short Bowel Syndrome
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The Official Patient's Sourcebook on Ulcerative Colitis
·
The Official Patient's Sourcebook on Whipple Disease
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The Official Patient's Sourcebook on Wilson's Disease
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The Official Patient's Sourcebook on Zollinger-ellison Syndrome
To discover more about ICON Health Publications, simply check with your preferred online booksellers, including Barnes & Noble.com and Amazon.com which currently carry all of our titles. Or, feel free to contact us directly for bulk purchases or institutional discounts: ICON Group International, Inc. 4370 La Jolla Village Drive, Fourth Floor San Diego, CA 92122 USA Fax: 858-546-4341 Web site: www.icongrouponline.com/health
Contents
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Table of Contents INTRODUCTION...................................................................................... 1 Overview ....................................................................................................................................... 1 Organization ................................................................................................................................. 3 Scope.............................................................................................................................................. 3 Moving Forward............................................................................................................................ 4 PART I: THE ESSENTIALS ............................................................................................................. 7
CHAPTER 1. THE ESSENTIALS ON CELIAC DISEASE: GUIDELINES........ 9 Overview ....................................................................................................................................... 9 What Is Celiac Disease? .............................................................................................................. 11 What Are the Symptoms? ........................................................................................................... 11 How Is Celiac Disease Diagnosed?.............................................................................................. 13 What Is the Treatment?............................................................................................................... 14 The Gluten-Free Diet................................................................................................................... 15 Example Foods............................................................................................................................. 16 What Are the Complications of Celiac Disease?.......................................................................... 20 How Common Is Celiac Disease? ................................................................................................ 20 Diseases Linked to Celiac Disease................................................................................................ 21 Dermatitis Herpetiformis ............................................................................................................ 21 Additional Resources................................................................................................................... 22 Points to Remember..................................................................................................................... 23 More Guideline Sources .............................................................................................................. 23 Vocabulary Builder...................................................................................................................... 32
CHAPTER 2. SEEKING GUIDANCE ....................................................... 37 Overview ..................................................................................................................................... 37 Associations and Celiac Disease .................................................................................................. 37 Finding More Associations ......................................................................................................... 42 Finding Doctors........................................................................................................................... 44 Selecting Your Doctor ................................................................................................................. 45 Working with Your Doctor ......................................................................................................... 46 Broader Health-Related Resources .............................................................................................. 47 Vocabulary Builder...................................................................................................................... 47
CHAPTER 3. CLINICAL TRIALS AND CELIAC DISEASE ........................ 49 Overview ..................................................................................................................................... 49 Recent Trials on Celiac Disease................................................................................................... 52 Benefits and Risks........................................................................................................................ 54 Keeping Current on Clinical Trials ............................................................................................. 57 General References....................................................................................................................... 58 Vocabulary Builder...................................................................................................................... 59 PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL ........................... 61
CHAPTER 4. STUDIES ON CELIAC DISEASE ......................................... 63 Overview ..................................................................................................................................... 63 The Combined Health Information Database .............................................................................. 63 Federally-Funded Research on Celiac Disease............................................................................. 73 E-Journals: PubMed Central ....................................................................................................... 86 The National Library of Medicine: PubMed................................................................................ 87 Vocabulary Builder...................................................................................................................... 88
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Contents
CHAPTER 5. PATENTS ON CELIAC DISEASE ........................................ 95 Overview ..................................................................................................................................... 95 Patents on Celiac Disease ............................................................................................................ 96 Patent Applications on Celiac Disease ........................................................................................ 97 Keeping Current .......................................................................................................................... 97 Vocabulary Builder...................................................................................................................... 97
CHAPTER 6. BOOKS ON CELIAC DISEASE............................................ 99 Overview ..................................................................................................................................... 99 Book Summaries: Federal Agencies ............................................................................................. 99 Book Summaries: Online Booksellers ........................................................................................ 104 The National Library of Medicine Book Index........................................................................... 106 Chapters on Celiac Disease........................................................................................................ 110 Directories ................................................................................................................................. 118 General Home References .......................................................................................................... 119 Vocabulary Builder.................................................................................................................... 120
CHAPTER 7. MULTIMEDIA ON CELIAC DISEASE ............................... 125 Overview ................................................................................................................................... 125 Video Recordings....................................................................................................................... 125 Bibliography: Multimedia on Celiac Disease............................................................................. 126 Vocabulary Builder.................................................................................................................... 129
CHAPTER 8. PERIODICALS AND NEWS ON CELIAC DISEASE ............ 131 Overview ................................................................................................................................... 131 News Services & Press Releases ................................................................................................ 131 Newsletters on Celiac Disease ................................................................................................... 140 Newsletter Articles .................................................................................................................... 141 Academic Periodicals covering Celiac Disease .......................................................................... 147 Vocabulary Builder.................................................................................................................... 148
CHAPTER 9. PHYSICIAN GUIDELINES AND DATABASES ................... 151 Overview ................................................................................................................................... 151 NIH Guidelines ......................................................................................................................... 151 NIH Databases .......................................................................................................................... 152 Other Commercial Databases .................................................................................................... 158 The Genome Project and Celiac Disease .................................................................................... 159 Specialized References ............................................................................................................... 163
CHAPTER 10. DISSERTATIONS ON CELIAC DISEASE ......................... 165 Overview ................................................................................................................................... 165 Dissertations on Celiac Disease................................................................................................. 165 Keeping Current ........................................................................................................................ 166 Vocabulary Builder.................................................................................................................... 166 PART III. APPENDICES .............................................................................................................. 167
APPENDIX A. RESEARCHING YOUR MEDICATIONS.......................... 169 Overview ................................................................................................................................... 169 Your Medications: The Basics ................................................................................................... 170 Learning More about Your Medications ................................................................................... 171 Commercial Databases............................................................................................................... 172 Contraindications and Interactions (Hidden Dangers)............................................................. 174 A Final Warning ....................................................................................................................... 175 General References..................................................................................................................... 175 Vocabulary Builder.................................................................................................................... 176
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APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE ................... 177 Overview ................................................................................................................................... 177 What Is CAM? .......................................................................................................................... 177 What Are the Domains of Alternative Medicine? ..................................................................... 178 Can Alternatives Affect My Treatment?................................................................................... 181 Finding CAM References on Celiac Disease ............................................................................. 182 Additional Web Resources......................................................................................................... 188 General References..................................................................................................................... 194 Vocabulary Builder.................................................................................................................... 195
APPENDIX C. RESEARCHING NUTRITION ......................................... 197 Overview ................................................................................................................................... 197 Food and Nutrition: General Principles .................................................................................... 198 Finding Studies on Celiac Disease ............................................................................................ 202 Federal Resources on Nutrition................................................................................................. 205 Additional Web Resources......................................................................................................... 206 Vocabulary Builder.................................................................................................................... 212
APPENDIX D. FINDING MEDICAL LIBRARIES.................................... 215 Overview ................................................................................................................................... 215 Preparation ................................................................................................................................ 215 Finding a Local Medical Library ............................................................................................... 216 Medical Libraries Open to the Public ........................................................................................ 216
APPENDIX E. YOUR RIGHTS AND INSURANCE ................................. 223 Overview ................................................................................................................................... 223 Your Rights as a Patient............................................................................................................ 223 Patient Responsibilities ............................................................................................................. 227 Choosing an Insurance Plan...................................................................................................... 228 Medicare and Medicaid ............................................................................................................. 230 NORD’s Medication Assistance Programs............................................................................... 233 Additional Resources................................................................................................................. 234 Vocabulary Builder.................................................................................................................... 235 ONLINE GLOSSARIES ............................................................................................................... 237 Online Dictionary Directories................................................................................................... 245 CELIAC DISEASE GLOSSARY.................................................................................................. 247 General Dictionaries and Glossaries ......................................................................................... 264 INDEX.............................................................................................................................................. 266
Introduction
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INTRODUCTION Overview Dr. C. Everett Koop, former U.S. Surgeon General, once said, “The best prescription is knowledge.”1 The Agency for Healthcare Research and Quality (AHRQ) of the National Institutes of Health (NIH) echoes this view and recommends that every patient incorporate education into the treatment process. According to the AHRQ: Finding out more about your condition is a good place to start. By contacting groups that support your condition, visiting your local library, and searching on the Internet, you can find good information to help guide your treatment decisions. Some information may be hard to find—especially if you don’t know where to look.2 As the AHRQ mentions, finding the right information is not an obvious task. Though many physicians and public officials had thought that the emergence of the Internet would do much to assist patients in obtaining reliable information, in March 2001 the National Institutes of Health issued the following warning: The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading.3
Quotation from http://www.drkoop.com. The Agency for Healthcare Research and Quality (AHRQ): http://www.ahcpr.gov/consumer/diaginfo.htm. 3 From the NIH, National Cancer Institute (NCI): http://cancertrials.nci.nih.gov/beyond/evaluating.html. 1 2
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Celiac Disease
Since the late 1990s, physicians have seen a general increase in patient Internet usage rates. Patients frequently enter their doctor’s offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding patients through sound therapies. The Official Patient’s Sourcebook on Celiac Disease has been created for patients who have decided to make education and research an integral part of the treatment process. The pages that follow will tell you where and how to look for information covering virtually all topics related to celiac disease, from the essentials to the most advanced areas of research. The title of this book includes the word “official.” This reflects the fact that the sourcebook draws from public, academic, government, and peerreviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on celiac disease. Given patients’ increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-ofcharge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. Since we are working with ICON Health Publications, hard copy Sourcebooks are frequently updated and printed on demand to ensure that the information provided is current. In addition to extensive references accessible via the Internet, every chapter presents a “Vocabulary Builder.” Many health guides offer glossaries of technical or uncommon terms in an appendix. In editing this sourcebook, we have decided to place a smaller glossary within each chapter that covers terms used in that chapter. Given the technical nature of some chapters, you may need to revisit many sections. Building one’s vocabulary of medical terms in such a gradual manner has been shown to improve the learning process. We must emphasize that no sourcebook on celiac disease should affirm that a specific diagnostic procedure or treatment discussed in a research study, patent, or doctoral dissertation is “correct” or your best option. This sourcebook is no exception. Each patient is unique. Deciding on appropriate
Introduction
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options is always up to the patient in consultation with their physician and healthcare providers.
Organization This sourcebook is organized into three parts. Part I explores basic techniques to researching celiac disease (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other patient networks dedicated to celiac disease. It also gives you sources of information that can help you find a doctor in your local area specializing in treating celiac disease. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with celiac disease. Part II moves on to advanced research dedicated to celiac disease. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on celiac disease. When possible, contact names, links via the Internet, and summaries are provided. It is in Part II where the vocabulary process becomes important as authors publishing advanced research frequently use highly specialized language. In general, every attempt is made to recommend “freeto-use” options. Part III provides appendices of useful background reading for all patients with celiac disease or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with celiac disease. Accessing materials via medical libraries may be the only option for some readers, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing patients with celiac disease.
Scope While this sourcebook covers celiac disease, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that celiac disease is often considered a synonym or a condition closely related to the following: ·
Celiac Sprue
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Gluten Enteropathy
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Gluten Intolerance
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Celiac Disease
·
Nontropical Sprue
·
Sprue
In addition to synonyms and related conditions, physicians may refer to celiac disease using certain coding systems. The International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) is the most commonly used system of classification for the world’s illnesses. Your physician may use this coding system as an administrative or tracking tool. The following classification is commonly used for celiac disease:4 ·
579.0 celiac disease
For the purposes of this sourcebook, we have attempted to be as inclusive as possible, looking for official information for all of the synonyms relevant to celiac disease. You may find it useful to refer to synonyms when accessing databases or interacting with healthcare professionals and medical librarians.
Moving Forward Since the 1980s, the world has seen a proliferation of healthcare guides covering most illnesses. Some are written by patients or their family members. These generally take a layperson’s approach to understanding and coping with an illness or disorder. They can be uplifting, encouraging, and highly supportive. Other guides are authored by physicians or other healthcare providers who have a more clinical outlook. Each of these two styles of guide has its purpose and can be quite useful. As editors, we have chosen a third route. We have chosen to expose you to as many sources of official and peer-reviewed information as practical, for the purpose of educating you about basic and advanced knowledge as recognized by medical science today. You can think of this sourcebook as your personal Internet age reference librarian. Why “Internet age”? All too often, patients diagnosed with celiac disease will log on to the Internet, type words into a search engine, and receive several Web site listings which are mostly irrelevant or redundant. These 4 This list is based on the official version of the World Health Organization’s 9th Revision, International Classification of Diseases (ICD-9). According to the National Technical Information Service, “ICD-9CM extensions, interpretations, modifications, addenda, or errata other than those approved by the U.S. Public Health Service and the Health Care Financing Administration are not to be considered official and should not be utilized. Continuous maintenance of the ICD-9-CM is the responsibility of the federal government.”
Introduction
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patients are left to wonder where the relevant information is, and how to obtain it. Since only the smallest fraction of information dealing with celiac disease is even indexed in search engines, a non-systematic approach often leads to frustration and disappointment. With this sourcebook, we hope to direct you to the information you need that you would not likely find using popular Web directories. Beyond Web listings, in many cases we will reproduce brief summaries or abstracts of available reference materials. These abstracts often contain distilled information on topics of discussion. While we focus on the more scientific aspects of celiac disease, there is, of course, the emotional side to consider. Later in the sourcebook, we provide a chapter dedicated to helping you find peer groups and associations that can provide additional support beyond research produced by medical science. We hope that the choices we have made give you the most options available in moving forward. In this way, we wish you the best in your efforts to incorporate this educational approach into your treatment plan. The Editors
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PART I: THE ESSENTIALS
ABOUT PART I Part I has been edited to give you access to what we feel are “the essentials” on celiac disease. The essentials of a disease typically include the definition or description of the disease, a discussion of who it affects, the signs or symptoms associated with the disease, tests or diagnostic procedures that might be specific to the disease, and treatments for the disease. Your doctor or healthcare provider may have already explained the essentials of celiac disease to you or even given you a pamphlet or brochure describing celiac disease. Now you are searching for more in-depth information. As editors, we have decided, nevertheless, to include a discussion on where to find essential information that can complement what your doctor has already told you. In this section we recommend a process, not a particular Web site or reference book. The process ensures that, as you search the Web, you gain background information in such a way as to maximize your understanding.
Guidelines
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CHAPTER 1. THE ESSENTIALS ON CELIAC DISEASE: GUIDELINES Overview Official agencies, as well as federally-funded institutions supported by national grants, frequently publish a variety of guidelines on celiac disease. These are typically called “Fact Sheets” or “Guidelines.” They can take the form of a brochure, information kit, pamphlet, or flyer. Often they are only a few pages in length. The great advantage of guidelines over other sources is that they are often written with the patient in mind. Since new guidelines on celiac disease can appear at any moment and be published by a number of sources, the best approach to finding guidelines is to systematically scan the Internet-based services that post them.
The National Institutes of Health (NIH)5 The National Institutes of Health (NIH) is the first place to search for relatively current patient guidelines and fact sheets on celiac disease. Originally founded in 1887, the NIH is one of the world’s foremost medical research centers and the federal focal point for medical research in the United States. At any given time, the NIH supports some 35,000 research grants at universities, medical schools, and other research and training institutions, both nationally and internationally. The rosters of those who have conducted research or who have received NIH support over the years include the world’s most illustrious scientists and physicians. Among them are 97 scientists who have won the Nobel Prize for achievement in medicine.
5
Adapted from the NIH: http://www.nih.gov/about/NIHoverview.html.
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There is no guarantee that any one Institute will have a guideline on a specific disease, though the National Institutes of Health collectively publish over 600 guidelines for both common and rare diseases. The best way to access NIH guidelines is via the Internet. Although the NIH is organized into many different Institutes and Offices, the following is a list of key Web sites where you are most likely to find NIH clinical guidelines and publications dealing with celiac disease and associated conditions: ·
Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm
·
National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines available at http://www.nlm.nih.gov/medlineplus/healthtopics.html
·
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK); guidelines available at http://www.niddk.nih.gov/health/health.htm
Among these, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) is particularly noteworthy. The NIDDK’s mission is to conduct and support research on many of the most serious diseases affecting public health.6 The Institute supports much of the clinical research on the diseases of internal medicine and related subspecialty fields as well as many basic science disciplines. The NIDDK’s Division of Intramural Research encompasses the broad spectrum of metabolic diseases such as diabetes, inborn errors of metabolism, endocrine disorders, mineral metabolism, digestive diseases, nutrition, urology and renal disease, and hematology. Basic research studies include biochemistry, nutrition, pathology, histochemistry, chemistry, physical, chemical, and molecular biology, pharmacology, and toxicology. NIDDK extramural research is organized into divisions of program areas: ·
Division of Diabetes, Endocrinology, and Metabolic Diseases
·
Division of Digestive Diseases and Nutrition
·
Division of Kidney, Urologic, and Hematologic Diseases
The Division of Extramural Activities provides administrative support and overall coordination. A fifth division, the Division of Nutrition Research Coordination, coordinates government nutrition research efforts. The Institute supports basic and clinical research through investigator-initiated This paragraph has been adapted from the NIDDK: http://www.niddk.nih.gov/welcome/mission.htm. “Adapted” signifies that a passage is reproduced exactly or slightly edited for this book. 6
Guidelines 11
grants, program project and center grants, and career development and training awards. The Institute also supports research and development projects and large-scale clinical trials through contracts. The following patient guideline was recently published by the NIDDK on celiac disease.
What Is Celiac Disease?7 Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate a protein called gluten, which is found in wheat, rye, barley, and possibly oats. When people with celiac disease eat foods containing gluten, their immune system responds by damaging the small intestine. Specifically, tiny fingerlike protrusions, called villi, on the lining of the small intestine are lost. Nutrients from food are absorbed into the bloodstream through these villi. Without villi, a person becomes malnourished--regardless of the quantity of food eaten. Because the body’s own immune system causes the damage, celiac disease is considered an autoimmune disorder. However, it is also classified as a disease of malabsorption because nutrients are not absorbed. Celiac disease is also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy. Celiac disease is a genetic disease, meaning that it runs in families. Sometimes the disease is triggered--or becomes active for the first time--after surgery, pregnancy, childbirth, viral infection, or severe emotional stress.
What Are the Symptoms? Celiac disease affects people differently. Some people develop symptoms as children, others as adults. One factor thought to play a role in when and how celiac appears is whether and how long a person was breastfed--the longer one was breastfed, the later symptoms of celiac disease appear, and the more atypical the symptoms. Other factors include the age at which one began eating foods containing gluten and how much gluten is eaten.
Adapted from The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK): http://www.niddk.nih.gov/health/digest/pubs/celiac/index.htm. 7
12 Celiac Disease
Villi on the lining of the small intestine help absorb nutrients.
Symptoms may or may not occur in the digestive system. For example, one person might have diarrhea and abdominal pain, while another person has irritability or depression. In fact, irritability is one of the most common symptoms in children. Symptoms of celiac disease may include one or more of the following: ·
Recurring abdominal bloating and pain
·
Chronic diarrhea
·
Weight loss
·
Pale, foul-smelling stool
·
Unexplained anemia (low count of red blood cells)
·
Gas
·
Bone pain
·
Behavior changes
·
Muscle cramps
·
Fatigue
·
Delayed growth
·
Failure to thrive in infants
·
Pain in the joints
·
Seizures
·
Tingling numbness in the legs (from nerve damage)
·
Pale sores inside the mouth, called aphthus ulcers
·
Painful skin rash, called dermatitis herpetiformis
·
Tooth discoloration or loss of enamel
Guidelines 13
·
Missed menstrual periods (often because of excessive weight loss)
Anemia, delayed growth, and weight loss are signs of malnutrition--not getting enough nutrients. Malnutrition is a serious problem for anyone, but particularly for children because they need adequate nutrition to develop properly. Some people with celiac disease may not have symptoms. The undamaged part of their small intestine is able to absorb enough nutrients to prevent symptoms. However, people without symptoms are still at risk for the complications of celiac disease.
How Is Celiac Disease Diagnosed? Diagnosing celiac disease can be difficult because some of its symptoms are similar to those of other diseases, including irritable bowel syndrome, Crohn’s disease, ulcerative colitis, diverticulosis, intestinal infections, chronic fatigue syndrome, and depression. Recently, researchers discovered that people with celiac disease have higher than normal levels of certain antibodies in their blood. Antibodies are produced by the immune system in response to substances that the body perceives to be threatening. To diagnose celiac disease, physicians test blood to measure levels of antibodies to gluten. These antibodies are antigliadin, anti-endomysium, and antireticulin. If the tests and symptoms suggest celiac disease, the physician may remove a tiny piece of tissue from the small intestine to check for damage to the villi. This is done in a procedure called a biopsy: the physician eases a long, thin tube called an endoscope through the mouth and stomach into the small intestine, and then takes a sample of tissue using instruments passed through the endoscope. Biopsy of the small intestine is the best way to diagnose celiac disease.
Screening Screening for celiac disease involves testing asymptomatic people for the antibodies to gluten. Americans are not routinely screened for celiac disease. However, because celiac disease is hereditary, family members--particularly first-degree relatives--of people who have been diagnosed may need to be tested for the disease. About 10 percent of an affected person’s first-degree
14 Celiac Disease
relatives (parents, siblings, or children) will also have the disease. The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications. In Italy, where celiac disease is common, all children are screened by age 6 so that even asymptomatic disease is caught early. In addition, Italians of any age are tested for the disease as soon as they show symptoms. As a result of this vigilance, the time between when symptoms begin and the disease is diagnosed is usually only 2 to 3 weeks. In the United States, the time between the first symptoms and diagnosis averages about 10 years.
What Is the Treatment? The only treatment for celiac disease is to follow a gluten-free diet--that is, to avoid all foods that contain gluten. For most people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage. Improvements begin within days of starting the diet, and the small intestine is usually completely healed--meaning the villi are intact and working--in 3 to 6 months. (It may take up to 2 years for older adults.) The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve. A small percentage of people with celiac disease do not improve on the gluten-free diet. These people often have severely damaged intestines that cannot heal even after they eliminate gluten from their diets. Because their intestines are not absorbing enough nutrients, they may need to receive intravenous nutrition supplements. Drug treatments are being evaluated for unresponsive celiac disease. These patients may need to be evaluated for complications of the disease. If a person responds to the gluten-free diet, the physician will know for certain that the diagnosis of celiac disease is correct.
Guidelines 15
The Gluten-Free Diet A gluten-free diet means avoiding all foods that contain wheat (including spelt, triticale, and kamut), rye, barley, and possibly oats--in other words, most grain, pasta, cereal, and many processed foods. Despite these restrictions, people with celiac disease can eat a well-balanced diet with a variety of foods, including bread and pasta. For example, instead of wheat flour, people can use potato, rice, soy, or bean flour. Or, they can buy glutenfree bread, pasta, and other products from special food companies. Whether people with celiac disease should avoid oats is controversial because some people have been able to eat oats without having a reaction. Scientists are doing studies to find out whether people with celiac disease can tolerate oats. Until the studies are complete, people with celiac disease should follow their physician or dietitian’s advice about eating oats. Plain meat, fish, rice, fruits, and vegetables do not contain gluten, so people with celiac disease can eat as much of these foods as they like. Examples of foods that are safe to eat and those that are not are provided below. The gluten-free diet is complicated. It requires a completely new approach to eating that affects a person’s entire life. People with celiac disease have to be extremely careful about what they buy for lunch at school or work, eat at cocktail parties, or grab from the refrigerator for a midnight snack. Eating out can be a challenge as the person with celiac disease learns to scrutinize the menu for foods with gluten and question the waiter or chef about possible hidden sources of gluten. Hidden sources of gluten include additives, preservatives, and stabilizers found in processed food, medicines, and mouthwash. If ingredients are not itemized, you may want to check with the manufacturer of the product. With practice, screening for gluten becomes second nature. A dietitian, a health care professional who specializes in food and nutrition, can help people learn about their new diet. Also, support groups are particularly helpful for newly diagnosed people and their families as they learn to adjust to a new way of life.
16 Celiac Disease
Example Foods8 Following are examples of foods that are allowed and those that should be avoided when eating gluten-free. Please note that this is not a complete list. People are encouraged to discuss gluten-free food choices with a physician or dietitian who specializes in celiac disease. Also, it is important to read all food ingredient lists carefully to make sure that the food does not contain gluten. Breads, Cereals, Rice, and Pasta9 Serving size: ·
1 slice bread, 1 cup ready-to-eat cereal, ½ cup cooked cereal, rice, or pasta; ½ bun, bagel, or English muffin
Recommended foods: ·
Breads or bread products made from corn, rice, soy, arrowroot corn or potato starch, pea, potato or whole-bean flour, tapioca, sago, rice bran, cornmeal, buckwheat, millet, flax, teff, sorghum, amaranth, and quinoa
·
Hot cereals made from soy, hominy, hominy grits, brown and white rice, buckwheat groats, millet, cornmeal, and quinoa flakes
·
Puffed corn, rice or millet, and other rice and corn made with allowed ingredients Rice, rice noodles, and pastas made from allowed ingredients
·
Some rice crackers and cakes, popped corn cakes made from allowed ingredients
Foods to omit: ·
Breads and baked products containing wheat, rye, triticale, barley, oats, wheat germ or bran, graham, gluten or durum flour, wheat starch, oat bran, bulgur, farina, wheat-based semolina, spelt, kamut
·
Cereals made from wheat, rye, triticale, barley, and oats; cereals with added malt extract and malt flavorings
·
Pastas made from ingredients above
2001, the American Dietetic Association. “Patient Education Materials: Supplement to the Manual of Clinical Dietetics,” 3rd ed. Used with permission. 9 6-11 servings each day 8
Guidelines 17
·
Most crackers
Tips: ·
Use corn, rice, soy, arrowroot, tapioca, and potato flours or a mixture instead of wheat flours in recipes.
·
Experiment with gluten-free products. Some may be purchased from your supermarket, health food store, or direct from the manufacturer.
Vegetables10 Serving size: ·
1 cup raw leafy, ½ cup cooked or chopped, ¾ cup juice
Recommended foods: ·
All plain, fresh, frozen, or canned vegetables made with allowed ingredients
Foods to omit: ·
Any creamed or breaded vegetables (unless allowed ingredients are used), canned baked beans
·
Some french fries
Tips: ·
Buy plain, frozen, or canned vegetables and season with herbs, spices, or sauces made with allowed ingredients.
Fruits11 Serving size: ·
10 11
1 medium size, ½ cup canned, ¾ cup juice, ¼ cup dried
3-5 servings each day 2-4 servings each day
18 Celiac Disease
Recommended foods: ·
All fruits and fruit juices
Foods to omit: ·
Some commercial fruit pie fillings and dried fruit
Milk, Yogurt, and Cheese12 Serving size: ·
1 cup milk or yogurt, 1½ oz natural cheese, 2 oz processed cheese
Recommended foods: ·
All milk and milk products except those made with gluten additives
·
Aged cheese
Foods to omit: ·
Malted milk
·
Some milk drinks, flavored or frozen yogurt
Tips: ·
Contact the food manufacturer for product information if the ingredient is not listed on the label.
Meats, Poultry, Fish, Dry Beans and Peas, Eggs, and Nuts13 Serving size: ·
2-3 oz cooked; count 1 egg, ½ cup cooked beans, 2 tbsp peanut butter, or cup nuts as 1 oz of meat
1/3
Recommended foods: ·
All meat, poultry, fish, and shellfish; eggs
12 2-3 13
servings each day 2-3 servings or total of 6 oz daily.
Guidelines 19
·
Dry peas and beans, nuts, peanut butter, soybean
·
Cold cuts, frankfurters, or sausage without fillers
Foods to omit: ·
Any prepared with wheat, rye, oats, barley, gluten stabilizers, or fillers including some frankfurters, cold cuts, sandwich spreads, sausages, and canned meats
·
Self-basting turkey
·
Some egg substitutes
Tips: ·
When dining out, select meat, poultry, or fish made without breading, gravies, or sauces.
Fats, Snacks, Sweets, Condiments, and Beverages Recommended foods: ·
Butter, margarine, salad dressings, sauces, soups, and desserts made with allowed ingredients
·
Sugar, honey, jelly, jam, hard candy, plain chocolate, coconut, molasses, marshmallows, meringues
·
Pure instant or ground coffee, tea, carbonated drinks, wine (made in U.S.), rum
·
Most seasonings and flavorings
Foods to omit: ·
Commercial salad dressings, prepared soups, condiments, sauces and seasonings prepared with ingredients listed above
·
Hot cocoa mixes, nondairy cream substitutes, flavored instant coffee, herbal tea, alcohol distilled from cereals such as gin, vodka, whiskey, and beer
·
Beer, ale, cereal, and malted beverages
·
Licorice
20 Celiac Disease
Tips: ·
Store all gluten-free products in your refrigerator or freezer because they do not contain preservatives.
·
Remember to avoid sauces, gravies, canned fish and other products with HVP/HPP made from wheat protein.
What Are the Complications of Celiac Disease? Damage to the small intestine and the resulting problems with nutrient absorption put a person with celiac disease at risk for several diseases and health problems: ·
Lymphoma and adenocarcinoma are types of cancer that can develop in the intestine.
·
Osteoporosis is a condition in which the bones become weak, brittle, and prone to breaking. Poor calcium absorption is a contributing factor to osteoporosis.
·
Miscarriage and congenital malformation of the baby, such as neural tube defects, are risks for untreated pregnant women with celiac disease because of malabsorption of nutrients.
·
Short stature results when childhood celiac disease prevents nutrient absorption during the years when nutrition is critical to a child’s normal growth and development. Children who are diagnosed and treated before their growth stops may have a catch-up period.
·
Seizures, or convulsions, result from inadequate absorption of folic acid. Lack of folic acid causes calcium deposits, called calcifications, to form in the brain, which in turn cause seizures.
How Common Is Celiac Disease? Celiac disease is the most common genetic disease in Europe. In Italy about 1 in 250 people and in Ireland about 1 in 300 people have celiac disease. It is rarely diagnosed in African, Chinese, and Japanese people. An estimated 1 in 4,700 Americans have been diagnosed with celiac disease. Some researchers question how celiac disease could be so uncommon in the United States since it is hereditary and many Americans descend from European ethnic groups in whom the disease is common. A recent study in
Guidelines 21
which random blood samples from the Red Cross were tested for celiac disease suggests that as many as 1 in every 250 Americans may have it. Celiac disease could be underdiagnosed in the United States for a number of reasons: ·
Celiac symptoms can be attributed to other problems.
·
Many doctors are not knowledgeable about the disease.
·
Only a handful of U.S. laboratories are experienced and skilled in testing for celiac disease.
More research is needed to find out the true prevalence of celiac disease among Americans.
Diseases Linked to Celiac Disease People with celiac disease tend to have other autoimmune diseases as well, including: ·
Dermatitis herpetiformis
·
Thyroid disease
·
Systemic lupus erythematosus
·
Type 1 diabetes
·
Liver disease
·
Collagen vascular disease
·
Rheumatoid arthritis
·
SJÖGREN’S syndrome
The connection between celiac and these diseases may be genetic.
Dermatitis Herpetiformis Dermatitis herpetiformis (DH) is a severe itchy, blistering skin disease caused by gluten intolerance. DH is related to celiac disease since both are autoimmune disorders caused by gluten intolerance, but they are separate diseases. The rash usually occurs on the elbows, knees, and buttocks.
22 Celiac Disease
Although people with DH do not usually have digestive symptoms, they often have the same intestinal damage as people with celiac disease. DH is diagnosed by a skin biopsy, which involves removing a tiny piece of skin near the rash and testing it for the IgA antibody. DH is treated with a glutenfree diet and medication to control the rash, such as dapsone or sulfapyridine. Drug treatment may last several years.
Additional Resources For more information, contact: American Celiac Society 59 Crystal Avenue West Orange, NJ 07052 Phone: (973) 325-8837 Email:
[email protected] Celiac Disease Foundation 13251 Ventura Boulevard, #1 Studio City, CA 91604-1838 Phone: (818) 990-2354 Email:
[email protected] Internet: www.celiac.org Celiac Sprue Association/USA Inc. P.O. Box 31700 Omaha, NE 68131-0700 Phone: (402) 558-0600 Internet: www.csaceliacs.org Gluten Intolerance Group of North America 15110 10th Avenue, SW., Suite A Seattle, WA 98166-1820 Phone: (206) 246-6652 Email:
[email protected] Internet: www.gluten.net National Center for Nutrition and Dietetics American Dietetic Association 216 West Jackson Boulevard, Suite 800 Chicago, IL 60606-6995 Phone: 1-800-366-1655
Guidelines 23
Email:
[email protected] Internet: www.eatright.org Gluten-Free Living (a bimonthly newsletter) P.O. Box 105 Hastings-on-Hudson, NY 10706 Phone: (914) 969-2018 Email:
[email protected]
Points to Remember ·
People with celiac disease cannot tolerate gluten, a protein in wheat, rye, barley, and possibly oats.
·
Celiac disease damages the small intestine and interferes with nutrient absorption.
·
Treatment is important because people with celiac disease could develop complications like cancer, osteoporosis, anemia, and seizures.
·
A person with celiac disease may or may not have symptoms.
·
Diagnosis involves blood tests and biopsy.
·
Because celiac disease is hereditary, family members of a person with celiac disease may need to be tested.
·
Celiac disease is treated by eliminating all gluten from the diet. The gluten-free diet is a lifetime requirement.
More Guideline Sources The guideline above on celiac disease is only one example of the kind of material that you can find online and free of charge. The remainder of this chapter will direct you to other sources which either publish or can help you find additional guidelines on topics related to celiac disease. Many of the guidelines listed below address topics that may be of particular relevance to your specific situation or of special interest to only some patients with celiac disease. Due to space limitations these sources are listed in a concise manner. Do not hesitate to consult the following sources by either using the Internet hyperlink provided, or, in cases where the contact information is provided, contacting the publisher or author directly.
24 Celiac Disease
Topic Pages: MEDLINEplus For patients wishing to go beyond guidelines published by specific Institutes of the NIH, the National Library of Medicine has created a vast and patientoriented healthcare information portal called MEDLINEplus. Within this Internet-based system are “health topic pages.” You can think of a health topic page as a guide to patient guides. To access this system, log on to http://www.nlm.nih.gov/medlineplus/healthtopics.html. If you do not find topics of interest when browsing health topic pages, then you can choose to use the advanced search utility of MEDLINEplus at http://www.nlm.nih.gov/medlineplus/advancedsearch.html. This utility is similar to the NIH Search Utility, with the exception that it only includes material linked within the MEDLINEplus system (mostly patient-oriented information). It also has the disadvantage of generating unstructured results. We recommend, therefore, that you use this method only if you have a very targeted search. The Combined Health Information Database (CHID) CHID Online is a reference tool that maintains a database directory of thousands of journal articles and patient education guidelines on celiac disease and related conditions. One of the advantages of CHID over other sources is that it offers summaries that describe the guidelines available, including contact information and pricing. CHID’s general Web site is http://chid.nih.gov/. To search this database, go to http://chid.nih.gov/detail/detail.html. In particular, you can use the advanced search options to look up pamphlets, reports, brochures, and information kits. The following was recently posted in this archive: ·
Living Healthy with Celiac Disease: Getting Started Source: Exton, PA: Anaffect Marketing. 1998. 36 p. Contact: Available from AnAffect Marketing. 115 Andover Drive, Exton, PA 19341. (610) 524-1253. Fax (610) 524-0656. E-mail:
[email protected]. Price: $5.95 plus shipping and handling. Summary: Celiac disease is an illness characterized by an abnormal small intestinal mucosa caused by a permanent intolerance to gluten, the protein found in wheat, rye, barley, and oats. Removal of gluten from the diet results in improvement of clinical symptoms and full recovery of the small intestinal mucosa. This booklet is designed to help people newly diagnosed with celiac disease or parents of children recently diagnosed
Guidelines 25
with the disease. A wealth of basic information to simplify the learning process about the disease and the gluten-free (GF) diet is provided. Specific topics include symptoms, diagnosis, consequences if the GF diet is not followed, screening of family members, incidence, specific foods to avoid, grains for which the gluten content is uncertain, safe additives, GF brand names, and problems with children at school and with snacks. The resources section lists books and cookbooks, newsletters, shopping guides, mail order GF food and nonfood companies, pharmaceutical companies, national associations, support groups, and Internet resources. A separate booklet available from the same resource provides recipes for a GF diet. ·
Celiac Disease Source: Studio City, CA: Celiac Disease Foundation. 1994. 4 p. Contact: Available from Celiac Disease Foundation. 13251 Ventura Boulevard, Suite 3, Studio City, CA 91604-1838. (818) 990-2354. Fax (818) 990-2379. Price: Single copy free. Summary: Celiac disease is a digestive disease in which damage to the surface of the small intestine is caused by the ingestion of food products that contain gluten or similar proteins that are present in wheat, rye, oats and barley. This brochure, written in a question-and-answer format, presents introductory information about celiac disease. Topics include the course of the disease, other related disorders, the symptoms of celiac disease, the causes of celiac disease, and the diagnosis and treatment of celiac disease. In addition, the brochure introduces the objectives and activities of the Celiac Disease Foundation.
·
Celiac Disease: What is It? Source: Mississauga, Ontario: The Canadian Celiac Association. 199x. 4 p. Contact: Available from Canadian Celiac Association. 6519B Mississauga Road, Mississauga, Ontario L5N 1A6. (416) 567-7195. Price: $0.15 each (members), $0.20 each (nonmembers); shipping and handling: $1.50 for orders up to $10, $3 for $10.01 to $30, $5 for $30.01 to $50. Summary: This patient education brochure presents basic information about celiac disease, along with information about the Canadian Celiac Association. Topics include the symptoms of celiac disease; the diagnosis of celiac disease; treating celiac disease with a gluten-free diet; and the role of genetics. The brochure concludes with a discussion of the objectives and activities of the association. A list of the chapters of the Canadian Celiac Association, as well as the contact information for the central branch, is included. Also included is an order form for
26 Celiac Disease
publications, pamphlets, a videotape, and other materials available from the association. ·
Celiac Disease: Myths Versus Facts Source: Mississauga, Ontario: The Canadian Celiac Association. 199x. 2 p. Contact: Available from Canadian Celiac Association. 6519B Mississauga Road, Mississauga, Ontario L5N 1A6. (905) 567-7195. Price: $0.50 each for members, $1 each for nonmembers; plus shipping and handling. Also available in French. Summary: This patient education brochure presents common myths about celiac disease, along with accurate facts on that subject. Topics covered include the incidence of celiac disease in Canada; the diagnosis of celiac; the procedure of intestinal biopsy; celiac disease in children; the gluten-free diet; adding gluten back to the diet; the relationship between celiac disease and dermatitis herpetiformis; and medical complications of celiac disease. The brochure concludes with a brief overview of celiac disease, its symptoms, and the use of a gluten-free diet to treat celiac disease. A list of the chapters of the Canadian Celiac Association, as well as the contact information for the central branch, is included.
·
Celiac Sprue: Clinical Aspects and Patient Realities Source: Seattle, WA: Gluten Intolerance Group of North America. 1991. 5 p. Contact: Available from Gluten Intolerance Group of North America. P.O. Box 23053, Seattle, WA 98102. (206) 325-6980. Price: $1.50; plus shipping and handling. Summary: This brochure addresses the clinical aspects and patient realities of celiac sprue. Written in a question-and-answer format, the first half of the brochure covers a definition of celiac sprue; clinical symptoms and abnormal blood levels of nutrients as a direct result of celiac sprue; the variation in malabsorption; diagnostic tests, including a biopsy of the small intestine and response to a gluten-restricted, gliadin-free diet; treatment options; related immune disorders; risk factors for malignancies; the psychosocial impact on patients who have lived undiagnosed for a long period of time; and how the health care provider can best assist patients. The second half of the document, written for patients, provides support and referral information; recommendations for starting a program to manage the disease; suggestions for a simple diet plan; and ideas for locating support groups. The brochure is in the format of type-written, standard size pages, with no illustrations.
Guidelines 27
·
For the Parents of Celiac Children: Celiac Disease in Children and Teens Source: Omaha, NE: Celiac Sprue Association/United States of America. 1990. 2 p. Contact: Available from Celiac Sprue Association/United States of America, Inc. (CSA/USA). P.O. Box 31700, Omaha, NE 68131. (402) 5580600. Price: Up to four copies free. Summary: This general information brochure presents basic information for parents of children newly-diagnosed with celiac disease. Topics covered include a definition of the disease, how to find gluten in food and food products, common symptoms of celiac disease, the diagnosis of celiac sprue, and present treatment (diet therapy) for celiac sprue.
·
Celiac Sprue Source: Omaha, NE: Celiac Sprue Association/USA, Inc. 199x. 4 p. Contact: Available from Celiac Sprue Association/USA, Inc. P.O. Box 31700, Omaha, NE 68131-0700. (402) 588-0600. Price: Up to four copies free. Summary: This brochure describes the history, causes, symptoms, diagnosis and treatment of celiac sprue, an intestinal malabsorption disorder caused by gluten, a protein found in certain grains. Detailed information is provided on each aspect of the disorder and particular emphasis is given to the broad range of symptoms that can result when vitamin, nutrient and mineral absorption is impaired. Changes in the gastrointestinal tract found in patients are discussed and shown to be reversible when gluten is eliminated from the diet. Information on membership and other resources of the Celiac Sprue Association is included.
·
Gluten Intolerance Group of North America: Serving Those with Celiac Sprue and Dermatitis Herpetiformis Source: Seattle, WA: Gluten Intolerance Group of North America. 199x. 2 p. Contact: Available from Gluten Intolerance Group of North America. P.O. Box 23053, Seattle, WA 98102-0353. (206) 325-6980. Price: Single copy free. Summary: This brochure describes gluten sensitive enteropathy (GSE), a group of hereditary immune system disorders that includes celiac sprue (CS), dermatitis herpetiformis (DH), and transient gluten intolerance. In these disorders, protein fractions in wheat, rye, oats, and barley set off a
28 Celiac Disease
chain of events that leads to tissue damage. The brochure describes the symptoms of these disorders, diagnosis, and treatment options, which primarily involve the institution of a gluten-free diet (avoiding wheat, rye, oats, and barley). The author emphasizes that proper substitutions can make the diets of persons with GSE varied and appealing. Combinations of rice, corn, soy, and potato flours are used to make cookies, pasta, cakes, and breads. The brochure lists immune system disorders associated with celiac sprue and DH, including type 1 diabetes, systemic lupus erythematosus, Sjogren's syndrome, scleroderma, autoimmune chronic active hepatitis, Graves' disease, Addisons' disease, and myasthenia gravis. The brochure also describes the Gluten Intolerance Group of North America, an organization that offers assistance to persons with celiac sprue or dermatitis herpetiformis through publications, outreach programs, local chapter support, advocacy, funding of research, and increasing awareness of these diseases. The brochure lists some of the publications and videotapes available from the organization. (AA-M). ·
Washington Area Celiac-Sprue Support Group Source: Bethesda, MD: Washington Area Celiac-Sprue Support Group. Contact: Available from Beatrice Newell. 7425 Democracy Boulevard, Bethesda, MD 20817. (301) 365-6261. Summary: The Washington Area Celiac-Sprue Support Group was organized in 1982 for persons with an intolerance to wheat, rye, oats, and barley, requiring a gluten-free diet. A gluten-intolerant person must maintain a gluten-free diet, which affects the whole family, particularly when the patient is a child. Thus the support group is open to families of patients as well as the patients themselves. Physicians, dietitians, and nutritionists address the groups, and members share information and personal experiences.
·
Greater Philadelphia Area Celiac-Sprue Support Group Information Packet Source: Flourtown, PA: Greater Philadelphia Celiac-Sprue Support Group. 1994. [166 p.]. Contact: Available from Greater Philadelphia Area Celiac-Sprue Support Group. 6318 Farmar Lane, Flourtown, PA 19031-1308. (215) 836-7518. Price: $20.00. Summary: This information packet contains a wealth of materials to be used as a guide in following a gluten-free diet and in finding the sources for purchasing gluten-free foods. Included in the packet are brochures
Guidelines 29
from organizations related to celiac disease; fact sheets about gluten-free foods; fact sheets about food additives; diet and meal planning information; information about monosodium glutamate; names and addresses of companies that manufacture and/or distribute gluten-free food; numerous recipes; a fact sheet on glucose intolerance; lists from a number of major manufacturers delineating which of their foods are gluten-free and which are not; and a chart outlining the grass family in which the gluten-gliadin fraction is found. The cover letter to the packet notes that the information was gathered by volunteers and is meant to be used as a guide only. ·
Celiac Sprue: Patient Resource and Information Guide Source: Seattle, WA: Gluten Intolerance Group of North America. 1991. 15 p. Contact: Available from Gluten Intolerance Group of North America. P.O. Box 23053, Seattle, WA 98102-0353. (206) 325-6980. Fax (206) 8502394. Price: $5. Summary: This patient resource and information guide provides basic information about celiac sprue. After an introductory section, the author discusses diagnosis, treatment options, potential long-term problems encountered by people with celiac disease, and sources of information for related disorders, including the information clearinghouses of the National Institutes of Health. The handbook presents seven recipes: xanthan gum bread, cranberry orange nut bread, easy blender mayonnaise, Mexican cornbread, 'Almost' graham crackers, picnic chocolate chip cookies, and apple cake. The handbook concludes with two indexes, to volumes 14 and 15 of the Gluten Intolerance Group (GIG) newsletter. A final section provides pricing information and order forms for GIG materials and membership.
·
CSA-20 Source: Omaha, NE: Celiac Sprue Association/United States of America. 1990. 170 p. Contact: Available from Celiac Sprue Association/United States of America, Inc. (CSA/USA). P.O. Box 31700, Omaha, NE 68131. (402) 5580600. Price: $6 includes shipping and handling. Summary: This information packet, distributed by the Celiac Sprue Association, contains twenty articles or book chapters related to celiac sprue and/or to dermatitis herpetiformis. Topics include immunological aspects of gluten intolerance, toxocity mechanisms of wheat and other cereals, complications of celiac sprue, liver and duodenal involvement in
30 Celiac Disease
celiac sprue, the use of vitamin D, gluten-sensitive enteropathy and infant nutrition, intestinal physiology, pediatric considerations of celiac disease, and the pathophysiology and diagnosis of malabsorption. The bulk of the articles are from the late 1980s.
The National Guideline Clearinghouse™ The National Guideline Clearinghouse™ offers hundreds of evidence-based clinical practice guidelines published in the United States and other countries. You can search their site located at http://www.guideline.gov by using the keyword “celiac disease” or synonyms. The following was recently posted: ·
Management of Crohn's disease in adults. Source: American College of Gastroenterology.; 2001 March; 9 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 2028&sSearch_string=celiac+disease
·
Practice guidelines for the management of infectious diarrhea. Source: Infectious Diseases Society of America.; 2001 February; 21 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 2017&sSearch_string=celiac+disease
·
Surgical treatment of pancreatic cancer. Source: Society for Surgery of the Alimentary Tract, Inc..; 1998 June 3 (revised 2000 Jan); 3 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 1399&sSearch_string=celiac+disease
Healthfinder™ Healthfinder™ is an additional source sponsored by the U.S. Department of Health and Human Services which offers links to hundreds of other sites that contain healthcare information. This Web site is located at http://www.healthfinder.gov. Again, keyword searches can be used to find guidelines. The following was recently found in this database:
Guidelines 31
·
Celiac Disease Summary: A Celiac Sprue support group defines this genetic disorder in simple detail. Patients and others interested in learning more about this affliction will find this online information useful. Source: Celiac Sprue Association/United States of America, Inc. http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=2169
·
Dermatitis Herpetiformis Summary: An online definition of this disorder, a known complication of celiac disease that is characterized as an itchy skin eruption distinguished by the formation of small papules or vesicles. . Source: Celiac Sprue Association/United States of America, Inc. http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=2571 The NIH Search Utility
After browsing the references listed at the beginning of this chapter, you may want to explore the NIH Search Utility. This allows you to search for documents on over 100 selected Web sites that comprise the NIH-WEBSPACE. Each of these servers is “crawled” and indexed on an ongoing basis. Your search will produce a list of various documents, all of which will relate in some way to celiac disease. The drawbacks of this approach are that the information is not organized by theme and that the references are often a mix of information for professionals and patients. Nevertheless, a large number of the listed Web sites provide useful background information. We can only recommend this route, therefore, for relatively rare or specific disorders, or when using highly targeted searches. To use the NIH search utility, visit the following Web page: http://search.nih.gov/index.html.
PEDBASE Similar to NORD, PEDBASE covers relatively rare disorders, limited mainly to pediatric conditions. PEDBASE was designed by Dr. Alan Gandy. To access the database, which is more oriented to researchers than patients, you
32 Celiac Disease
can view the current list of conditions covered at the following Web site: http://www.icondata.com/health/pedbase/pedlynx.htm.
Additional Web Sources A number of Web sites that often link to government sites are available to the public. These can also point you in the direction of essential information. The following is a representative sample: ·
AOL: http://search.aol.com/cat.adp?id=168&layer=&from=subcats
·
drkoop.comÒ: http://www.drkoop.com/conditions/ency/index.html
·
Family Village: http://www.familyvillage.wisc.edu/specific.htm
·
Google: http://directory.google.com/Top/Health/Conditions_and_Diseases/
·
Med Help International: http://www.medhelp.org/HealthTopics/A.html
·
Open Directory Project: http://dmoz.org/Health/Conditions_and_Diseases/
·
Yahoo.com: http://dir.yahoo.com/Health/Diseases_and_Conditions/
·
WebMDÒHealth: http://my.webmd.com/health_topics
Vocabulary Builder The material in this chapter may have contained a number of unfamiliar words. The following Vocabulary Builder introduces you to terms used in this chapter that have not been covered in the previous chapter: Adenocarcinoma: organization. [NIH]
A malignant epithelial tumor with a glandular
Alimentary: Pertaining to food or nutritive material, or to the organs of digestion. [EU] Anemia: A reduction in the number of circulating erythrocytes or in the quantity of hemoglobin. [NIH] Antibodies: Proteins that the body makes to protect itself from foreign substances. In diabetes, the body sometimes makes antibodies to work against pork or beef insulins because they are not exactly the same as human insulin or because they have impurities. The antibodies can keep the insulin from working well and may even cause the person with diabetes to have an
Guidelines 33
allergic or bad reaction to the beef or pork insulins. [NIH] Antibody: An immunoglobulin molecule that has a specific amino acid sequence by virtue of which it interacts only with the antigen that induced its synthesis in cells of the lymphoid series (especially plasma cells), or with antigen closely related to it. Antibodies are classified according to their ode of action as agglutinins, bacteriolysins, haemolysins, opsonins, precipitins, etc. [EU] Asymptomatic: No symptoms; no clear sign of disease present. [NIH] Atypical: Irregular; not conformable to the type; in microbiology, applied specifically to strains of unusual type. [EU] Biopsy: The removal and examination, usually microscopic, of tissue from the living body, performed to establish precise diagnosis. [EU] Calcification: The process by which organic tissue becomes hardened by a deposit of calcium salts within its substance. [EU] Collagen: The protein substance of the white fibres (collagenous fibres) of skin, tendon, bone, cartilage, and all other connective tissue; composed of molecules of tropocollagen (q.v.), it is converted into gelatin by boiling. collagenous pertaining to collagen; forming or producing collagen. [EU] Condiments: Aromatic substances added to food before or after cooking to enhance its flavor. These are usually of vegetable origin. [NIH] Convulsion: A violent involuntary contraction or series of contractions of the voluntary muscles. [EU] Democracy: A system of government in which there is free and equal participation by the people in the political decision-making process. [NIH] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Dietetics: The study and regulation of the diet. [NIH] Endocrinology: A subspecialty of internal medicine concerned with the metabolism, physiology, and disorders of the endocrine system. [NIH] Fatigue: The state of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced efficiency to respond to stimuli. [NIH] Fats: One of the three main classes of foods and a source of energy in the body. Fats help the body use some vitamins and keep the skin healthy. They also serve as energy stores for the body. In food, there are two types of fats: saturated and unsaturated. [NIH] Gastrointestinal: Pertaining to or communicating with the stomach and intestine, as a gastrointestinal fistula. [EU] Glucose: D-glucose, a monosaccharide (hexose), C6H12O6, also known as dextrose (q.v.), found in certain foodstuffs, especially fruits, and in the
34 Celiac Disease
normal blood of all animals. It is the end product of carbohydrate metabolism and is the chief source of energy for living organisms, its utilization being controlled by insulin. Excess glucose is converted to glycogen and stored in the liver and muscles for use as needed and, beyond that, is converted to fat and stored as adipose tissue. Glucose appears in the urine in diabetes mellitus. [EU] Gluten: The protein of wheat and other grains which gives to the dough its tough elastic character. [EU] Hematology: A subspecialty of internal medicine concerned with morphology, physiology, and pathology of the blood and blood-forming tissues. [NIH] Hepatitis: Inflammation of the liver. [EU] Ingestion: The act of taking food, medicines, etc., into the body, by mouth. [EU]
Intestinal: Pertaining to the intestine. [EU] Intestines: The section of the alimentary canal from the stomach to the anus. It includes the large intestine and small intestine. [NIH] Lupus: A form of cutaneous tuberculosis. It is seen predominantly in women and typically involves the nasal, buccal, and conjunctival mucosa. [NIH]
Lymphoma: Any neoplastic disorder of the lymphoid tissue, the term lymphoma often is used alone to denote malignant lymphoma. [EU] Malabsorption: Impaired intestinal absorption of nutrients. [EU] Malformation: A morphologic defect resulting from an intrinsically abnormal developmental process. [EU] Molasses: The syrup remaining after sugar is crystallized out of sugar cane or sugar beet juice. It is also used in animal feed, and in a fermented form, is used to make industrial ethyl alcohol and alcoholic beverages. [NIH] Mucosa: A mucous membrane, or tunica mucosa. [EU] Myasthenia: Muscular debility; any constitutional anomaly of muscle. [EU] Neural: 1. pertaining to a nerve or to the nerves. 2. situated in the region of the spinal axis, as the neutral arch. [EU] Osteoporosis: Reduction in the amount of bone mass, leading to fractures after minimal trauma. [EU] Prevalence: The number of people in a given group or population who are reported to have a disease. [NIH] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]
Guidelines 35
Seizures: Clinical or subclinical disturbances of cortical function due to a sudden, abnormal, excessive, and disorganized discharge of brain cells. Clinical manifestations include abnormal motor, sensory and psychic phenomena. Recurrent seizures are usually referred to as epilepsy or "seizure disorder." [NIH] Spectrum: A charted band of wavelengths of electromagnetic vibrations obtained by refraction and diffraction. By extension, a measurable range of activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU] Sulfapyridine: Antibacterial, potentially toxic, used to treat certain skin diseases. [NIH] Toxicology: The science concerned with the detection, chemical composition, and pharmacologic action of toxic substances or poisons and the treatment and prevention of toxic manifestations. [NIH] Ulcer: A break in the skin; a deep sore. People with diabetes may get ulcers from minor scrapes on the feet or legs, from cuts that heal slowly, or from the rubbing of shoes that do not fit well. Ulcers can become infected. [NIH] Urology: A surgical specialty concerned with the study, diagnosis, and treatment of diseases of the urinary tract in both sexes and the genital tract in the male. It includes the specialty of andrology which addresses both male genital diseases and male infertility. [NIH] Vascular: Pertaining to blood vessels or indicative of a copious blood supply. [EU]
Seeking Guidance 37
CHAPTER 2. SEEKING GUIDANCE Overview Some patients are comforted by the knowledge that a number of organizations dedicate their resources to helping people with celiac disease. These associations can become invaluable sources of information and advice. Many associations offer aftercare support, financial assistance, and other important services. Furthermore, healthcare research has shown that support groups often help people to better cope with their conditions.14 In addition to support groups, your physician can be a valuable source of guidance and support. Therefore, finding a physician that can work with your unique situation is a very important aspect of your care. In this chapter, we direct you to resources that can help you find patient organizations and medical specialists. We begin by describing how to find associations and peer groups that can help you better understand and cope with celiac disease. The chapter ends with a discussion on how to find a doctor that is right for you.
Associations and Celiac Disease As mentioned by the Agency for Healthcare Research and Quality, sometimes the emotional side of an illness can be as taxing as the physical side.15 You may have fears or feel overwhelmed by your situation. Everyone has different ways of dealing with disease or physical injury. Your attitude, your expectations, and how well you cope with your condition can all Churches, synagogues, and other houses of worship might also have groups that can offer you the social support you need. 15 This section has been adapted from http://www.ahcpr.gov/consumer/diaginf5.htm. 14
38 Celiac Disease
influence your well-being. This is true for both minor conditions and serious illnesses. For example, a study on female breast cancer survivors revealed that women who participated in support groups lived longer and experienced better quality of life when compared with women who did not participate. In the support group, women learned coping skills and had the opportunity to share their feelings with other women in the same situation. In addition to associations or groups that your doctor might recommend, we suggest that you consider the following list (if there is a fee for an association, you may want to check with your insurance provider to find out if the cost will be covered): ·
American Celiac Society-Dietary Support Coalition Address: American Celiac Society-Dietary Support Coalition 59 Crystal Avenue, West Orange, NJ 07052 Telephone: (973) 325- 8837 Toll-free: (800) 363-7296 Fax: (973) 669-8808 Email:
[email protected] Background: The American Celiac Society-Dietary Support Coalition is a nonprofit self-help organization that provides support, education, and encouragement for people with Celiac Sprue and other dietary disorders and food allergies, including Dermatitis Herpetiformis, Crohn's Disease, Lactose Intolerance, and Wheat Intolerance. Through patient and general education, nationwide support groups, networking, referrals, and research, ACS/DCS works to increase the awareness of dietary disorders and to identify food products that may contain gluten-gliaden, lactose, corn or soya. ACS/DCS also publishes a newsletter, patient packets, brochures, and offers audio-visual aids for its members. The society offers some Spanish language materials, and has limited Spanish and Italian speaking resources. Relevant area(s) of interest: Celiac Sprue
·
Canadian Celiac Association Address: Canadian Celiac Association 190 Britannia Road East, Unit 11, Mississauga, Ontario, L4Z 1W6, Canada Telephone: (905) 507-6208 Toll-free: (800) 363-7296 Fax: (905) 507-4673 Web Site: http://www.celiac.c Background: The Canadian Celiac Association is a national not-for-profit organization dedicated to providing services and support to individuals
Seeking Guidance 39
with celiac disease and dermatitis herpetiformis through programs of awareness, advocacy, education, and research. Celiac disease is a condition in which the absorptive surface of the small intestine is damaged due to ingestion of foods containing gluten, a protein found in wheat, barley, rye, and oats. Due to impaired intestinal absorption of nutrients (malabsorption), affected individuals may experience diarrhea, vomiting, swelling (distension) of the abdomen, muscle wasting, and other symptoms and findings. In addition, in some cases, affected individuals may develop a distinctive rash (dermatitis herpetiformis) that is thought to represent an immune response to dietary gluten. The Canadian Celiac Association was established in 1972 and currently has 24 local chapters throughout Canada. The purpose of the Association is to assist its affiliated chapters and to represent their members' needs at the national level. The Association is committed to increasing awareness of celiac disease and dermatitis herpetiformis among health care professionals and the public; providing current information about these conditions and gluten-free foods; acting as an advocate for individuals with celiac disease and dermatitis herpetiformis to other organizations and government departments; and encouraging and promoting research. The Canadian Celiac Association also conducts a national conference, offers a variety of educational materials, and has a web site on the Internet. Relevant area(s) of interest: Celiac Disease, Celiac Sprue, Gluten Enteropathy ·
Celiac Disease Foundation Address: Celiac Disease Foundation 13251 Ventura Boulevard, Suite 1, Studio City, CA 91604-1838 Telephone: (818) 990-2354 Toll-free: (888) 663-4637 Fax: (818) 990-2379 Email:
[email protected] Web Site: http://www.celiac.or Background: The Celiac Disease Foundation (CDF) is a nonprofit organization dedicated to providing services and support to persons with celiac disease or dermatitis herpetiformis (CD/DH) through programs of awareness, advocacy, and research. Celiac disease is a chronic, hereditary, intestinal malabsorption disorder caused by intolerance to gluten. Dermatitis herpetiformis, also known as Duhring disease, is a rare chronic skin disorder characterized by the presence of groups of severely itchy (pruritic) blisters and raised skin lesions (papules). The exact cause of this disease is not know although it is frequently associated with the
40 Celiac Disease
inability to digest gluten (gluten-sensitive enteropathy). Established in 1990, CDF works to assist people with CD/DH and their families to understand and cope with the disease; to distribute reliable up-to-date information about CD/DH and the gluten-free diet; to increase awareness of CD/DH among health care professionals, food and drug manufacturers, the food service industry, the media, and the public; and to encourage celiac disease research. Educational materials include the quarterly newsletter 'CDF Newsletter' and a brochure entitled 'Guidelines for a Gluten-Free Lifestyle.' The organization also maintains information and referral services; conducts meetings with guest speakers, special events and workshops; and provides an opportunity for individuals affected by celiac disease to meet with others concerned with this disorder. Relevant area(s) of interest: Celiac Disease, Celiac Sprue, Gluten Enteropathy, Gluten Intolerance ·
Digestive Disorders Foundation (UK) Address: Digestive Disorders Foundation (UK) 3 St. Andrews Place, London, NW1 4LB, United Kingdom Telephone: 0171 486 0341 Toll-free: (800) 363-7296 Fax: 0171 224 2012 Email:
[email protected] Web Site: http://www.digestivedisorders.org.u Background: The Digestive Disorders Foundation (DDF) is a voluntary organization in the United Kingdom dedicated to providing information to individuals with digestive disorders and their family members and funding research concerning these disorders. Since the DDF was founded in 1971, it has supported over 95 research fellowships. The Foundation also provides grants for equipment and travel fellowships, enabling researchers to visit laboratories abroad to improve their knowledge and expertise. In addition, the Digestive Disorders Foundation produces patient information leaflets discussing the symptoms, causes, and treatments of a wide range of digestive disorders including celiac disease; pancreatitis; peptic, gastric, and duodenal ulcers; diverticula; and Gilbert's syndrome. The Foundation is also committed to raising professional and public knowledge of digestive diseases through a series of events including scientific and public meetings. The DDF's web site on the Internet provides news updates, a glossary of medical terms, its series of patient information leaflets, and information concerning current research fellowships.
Seeking Guidance 41
Relevant area(s) of interest: Celiac Disease, Diverticular Disease, Irritable Bowel Syndrome, Pancreatitis ·
Gluten Intolerance Group of North America Address: Gluten Intolerance Group of North America 15110-10 Avenue SW, Suite A, Seattle, WA 98166-1820 Telephone: (206) 246-6652 Toll-free: (888) 663-4637 Fax: (206) 246-6531 Email:
[email protected] Background: The Gluten Intolerance Group of North America is a notfor-profit self-help organization dedicated to providing information and support to individuals with Celiac Sprue and/or Dermatitis Herpetiformis, their families, and health care professionals. Celiac Sprue is a chronic, hereditary, intestinal malabsorption disorder caused by intolerance to gluten. Affected individuals may experience no, few, or many symptoms. Those who do have symptoms may experience weight loss, chronic diarrhea, abdominal cramping, intestinal gas, weakness, fatigue, and/or other symptoms. Some may experience Dermatitis Herpetiformis, which is characterized by small itchy blisters on the skin surface, most commonly on body pressure points, such as elbows, knees, and feet. The organization enables members to exchange information, support, and resources through its networking program; has staffed phone lines to answer inquiries; and offers a variety of educational and support materials. Such materials include a patient resource guide, cookbooks, book reviews, research reports, information on specific drug therapies, brochures, videotapes for purchase or rental, and a quarterly newsletter. Relevant area(s) of interest: Celiac Disease, Celiac Sprue, Gluten Enteropathy, Gluten Intolerance
·
March of Dimes Birth Defects Foundation Address: March of Dimes Birth Defects Foundation 1275 Mamaroneck Avenue, White Plains, NY 10605 Telephone: (914) 428-7100 Toll-free: (888) 663-4637 Fax: (914) 997-4763 Email:
[email protected] Web Site: http://www.modimes.or Background: The March of Dimes Birth Defects Foundation is a national not-for- profit organization that was established in 1938. The mission of
42 Celiac Disease
the Foundation is to improve the health of babies by preventing birth defects and infant mortality. Through the Campaign for Healthier Babies, the March of Dimes funds programs of research, community services, education, and advocacy. Educational programs that seek to prevent birth defects are important to the Foundation and to that end it produces a wide variety of printed informational materials and videos. The March of Dimes public health educational materials provide information encouraging health- enhancing behaviors that lead to a healthy pregnancy and a healthy baby. Relevant area(s) of interest: Celiac Sprue, Lactose Intolerance, Porphyria, Wilson's Disease
Finding More Associations There are a number of directories that list additional medical associations that you may find useful. While not all of these directories will provide different information than what is listed above, by consulting all of them, you will have nearly exhausted all sources for patient associations. The National Health Information Center (NHIC) The National Health Information Center (NHIC) offers a free referral service to help people find organizations that provide information about celiac disease. For more information, see the NHIC’s Web site at http://www.health.gov/NHIC/ or contact an information specialist by calling 1-800-336-4797.
DIRLINE A comprehensive source of information on associations is the DIRLINE database maintained by the National Library of Medicine. The database comprises some 10,000 records of organizations, research centers, and government institutes and associations which primarily focus on health and biomedicine. DIRLINE is available via the Internet at the following Web site: http://dirline.nlm.nih.gov/. Simply type in “celiac disease” (or a synonym) or the name of a topic, and the site will list information contained in the database on all relevant organizations.
Seeking Guidance 43
The Combined Health Information Database Another comprehensive source of information on healthcare associations is the Combined Health Information Database. Using the “Detailed Search” option, you will need to limit your search to “Organizations” and “celiac disease”. Type the following hyperlink into your Web browser: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For publication date, select “All Years.” Then, select your preferred language and the format option “Organization Resource Sheet.” By making these selections and typing in “celiac disease” (or synonyms) into the “For these words:” box, you will only receive results on organizations dealing with celiac disease. You should check back periodically with this database since it is updated every 3 months. The National Organization for Rare Disorders, Inc. The National Organization for Rare Disorders, Inc. has prepared a Web site that provides, at no charge, lists of associations organized by specific diseases. You can access this database at the following Web site: http://www.rarediseases.org/cgi-bin/nord/searchpage. Select the option called “Organizational Database (ODB)” and type “celiac disease” (or a synonym) in the search box.
Online Support Groups In addition to support groups, commercial Internet service providers offer forums and chat rooms for people with different illnesses and conditions. WebMDÒ, for example, offers such a service at their Web site: http://boards.webmd.com/roundtable. These online self-help communities can help you connect with a network of people whose concerns are similar to yours. Online support groups are places where people can talk informally. If you read about a novel approach, consult with your doctor or other healthcare providers, as the treatments or discoveries you hear about may not be scientifically proven to be safe and effective. ·
The Celiac Disease & Gluten-Free Diet Support Page http://www.celiac.com
·
Celiac Support List http://www.enabling.org/ia/celiac
44 Celiac Disease
Finding Doctors One of the most important aspects of your treatment will be the relationship between you and your doctor or specialist. All patients with celiac disease must go through the process of selecting a physician. While this process will vary from person to person, the Agency for Healthcare Research and Quality makes a number of suggestions, including the following:16 ·
If you are in a managed care plan, check the plan’s list of doctors first.
·
Ask doctors or other health professionals who work with doctors, such as hospital nurses, for referrals.
·
Call a hospital’s doctor referral service, but keep in mind that these services usually refer you to doctors on staff at that particular hospital. The services do not have information on the quality of care that these doctors provide.
·
Some local medical societies offer lists of member doctors. Again, these lists do not have information on the quality of care that these doctors provide.
Additional steps you can take to locate doctors include the following: ·
Check with the associations listed earlier in this chapter.
·
Information on doctors in some states is available on the Internet at http://www.docboard.org. This Web site is run by “Administrators in Medicine,” a group of state medical board directors.
·
The American Board of Medical Specialties can tell you if your doctor is board certified. “Certified” means that the doctor has completed a training program in a specialty and has passed an exam, or “board,” to assess his or her knowledge, skills, and experience to provide quality patient care in that specialty. Primary care doctors may also be certified as specialists. The AMBS Web site is located at http://www.abms.org/newsearch.asp.17 You can also contact the ABMS by phone at 1-866-ASK-ABMS.
·
You can call the American Medical Association (AMA) at 800-665-2882 for information on training, specialties, and board certification for many licensed doctors in the United States. This information also can be found in “Physician Select” at the AMA’s Web site: http://www.amaassn.org/aps/amahg.htm.
This section is adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm. While board certification is a good measure of a doctor’s knowledge, it is possible to receive quality care from doctors who are not board certified. 16 17
Seeking Guidance 45
If the previous sources did not meet your needs, you may want to log on to the Web site of the National Organization for Rare Disorders (NORD) at http://www.rarediseases.org/. NORD maintains a database of doctors with expertise in various rare diseases. The Metabolic Information Network (MIN), 800-945-2188, also maintains a database of physicians with expertise in various metabolic diseases.
Selecting Your Doctor18 When you have compiled a list of prospective doctors, call each of their offices. First, ask if the doctor accepts your health insurance plan and if he or she is taking new patients. If the doctor is not covered by your plan, ask yourself if you are prepared to pay the extra costs. The next step is to schedule a visit with your chosen physician. During the first visit you will have the opportunity to evaluate your doctor and to find out if you feel comfortable with him or her. Ask yourself, did the doctor: ·
Give me a chance to ask questions about celiac disease?
·
Really listen to my questions?
·
Answer in terms I understood?
·
Show respect for me?
·
Ask me questions?
·
Make me feel comfortable?
·
Address the health problem(s) I came with?
·
Ask me my preferences about different kinds of treatments for celiac disease?
·
Spend enough time with me?
Trust your instincts when deciding if the doctor is right for you. But remember, it might take time for the relationship to develop. It takes more than one visit for you and your doctor to get to know each other.
18 This
section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.
46 Celiac Disease
Working with Your Doctor19 Research has shown that patients who have good relationships with their doctors tend to be more satisfied with their care and have better results. Here are some tips to help you and your doctor become partners: ·
You know important things about your symptoms and your health history. Tell your doctor what you think he or she needs to know.
·
It is important to tell your doctor personal information, even if it makes you feel embarrassed or uncomfortable.
·
Bring a “health history” list with you (and keep it up to date).
·
Always bring any medications you are currently taking with you to the appointment, or you can bring a list of your medications including dosage and frequency information. Talk about any allergies or reactions you have had to your medications.
·
Tell your doctor about any natural or alternative medicines you are taking.
·
Bring other medical information, such as x-ray films, test results, and medical records.
·
Ask questions. If you don’t, your doctor will assume that you understood everything that was said.
·
Write down your questions before your visit. List the most important ones first to make sure that they are addressed.
·
Consider bringing a friend with you to the appointment to help you ask questions. This person can also help you understand and/or remember the answers.
·
Ask your doctor to draw pictures if you think that this would help you understand.
·
Take notes. Some doctors do not mind if you bring a tape recorder to help you remember things, but always ask first.
·
Let your doctor know if you need more time. If there is not time that day, perhaps you can speak to a nurse or physician assistant on staff or schedule a telephone appointment.
·
Take information home. Ask for written instructions. Your doctor may also have brochures and audio and videotapes that can help you.
This section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.
19
Seeking Guidance 47
·
After leaving the doctor’s office, take responsibility for your care. If you have questions, call. If your symptoms get worse or if you have problems with your medication, call. If you had tests and do not hear from your doctor, call for your test results. If your doctor recommended that you have certain tests, schedule an appointment to get them done. If your doctor said you should see an additional specialist, make an appointment.
By following these steps, you will enhance the relationship you will have with your physician.
Broader Health-Related Resources In addition to the references above, the NIH has set up guidance Web sites that can help patients find healthcare professionals. These include:20 ·
Caregivers: http://www.nlm.nih.gov/medlineplus/caregivers.html
·
Choosing a Doctor or Healthcare Service: http://www.nlm.nih.gov/medlineplus/choosingadoctororhealthcareserv ice.html
·
Hospitals and Health Facilities: http://www.nlm.nih.gov/medlineplus/healthfacilities.html
Vocabulary Builder The following vocabulary builder provides definitions of words used in this chapter that have not been defined in previous chapters: Abdomen: That portion of the body that lies between the thorax and the pelvis. [NIH] Lesion: Any pathological or traumatic discontinuity of tissue or loss of function of a part. [EU] Pancreatitis: Inflammation (pain, tenderness) of the pancreas; it can make the pancreas stop working. It is caused by drinking too much alcohol, by disease in the gallbladder, or by a virus. [NIH] You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html.
20
48 Celiac Disease
Peptic: Pertaining to pepsin or to digestion; related to the action of gastric juices. [EU] Porphyria: A pathological state in man and some lower animals that is often due to genetic factors, is characterized by abnormalities of porphyrin metabolism, and results in the excretion of large quantities of porphyrins in the urine and in extreme sensitivity to light. [EU]
Clinical Trials 49
CHAPTER 3. CLINICAL TRIALS AND CELIAC DISEASE Overview Very few medical conditions have a single treatment. The basic treatment guidelines that your physician has discussed with you, or those that you have found using the techniques discussed in Chapter 1, may provide you with all that you will require. For some patients, current treatments can be enhanced with new or innovative techniques currently under investigation. In this chapter, we will describe how clinical trials work and show you how to keep informed of trials concerning celiac disease.
What Is a Clinical Trial?21 Clinical trials involve the participation of people in medical research. Most medical research begins with studies in test tubes and on animals. Treatments that show promise in these early studies may then be tried with people. The only sure way to find out whether a new treatment is safe, effective, and better than other treatments for celiac disease is to try it on patients in a clinical trial.
The discussion in this chapter has been adapted from the NIH and the NEI: www.nei.nih.gov/netrials/ctivr.htm.
21
50 Celiac Disease
What Kinds of Clinical Trials Are There? Clinical trials are carried out in three phases: ·
Phase I. Researchers first conduct Phase I trials with small numbers of patients and healthy volunteers. If the new treatment is a medication, researchers also try to determine how much of it can be given safely.
·
Phase II. Researchers conduct Phase II trials in small numbers of patients to find out the effect of a new treatment on celiac disease.
·
Phase III. Finally, researchers conduct Phase III trials to find out how new treatments for celiac disease compare with standard treatments already being used. Phase III trials also help to determine if new treatments have any side effects. These trials--which may involve hundreds, perhaps thousands, of people--can also compare new treatments with no treatment. How Is a Clinical Trial Conducted?
Various organizations support clinical trials at medical centers, hospitals, universities, and doctors’ offices across the United States. The “principal investigator” is the researcher in charge of the study at each facility participating in the clinical trial. Most clinical trial researchers are medical doctors, academic researchers, and specialists. The “clinic coordinator” knows all about how the study works and makes all the arrangements for your visits. All doctors and researchers who take part in the study on celiac disease carefully follow a detailed treatment plan called a protocol. This plan fully explains how the doctors will treat you in the study. The “protocol” ensures that all patients are treated in the same way, no matter where they receive care. Clinical trials are controlled. This means that researchers compare the effects of the new treatment with those of the standard treatment. In some cases, when no standard treatment exists, the new treatment is compared with no treatment. Patients who receive the new treatment are in the treatment group. Patients who receive a standard treatment or no treatment are in the “control” group. In some clinical trials, patients in the treatment group get a new medication while those in the control group get a placebo. A placebo is a harmless substance, a “dummy” pill, that has no effect on celiac disease. In other clinical trials, where a new surgery or device (not a medicine) is being tested, patients in the control group may receive a “sham treatment.” This
Clinical Trials 51
treatment, like a placebo, has no effect on celiac disease and does not harm patients. Researchers assign patients “randomly” to the treatment or control group. This is like flipping a coin to decide which patients are in each group. If you choose to participate in a clinical trial, you will not know which group you will be appointed to. The chance of any patient getting the new treatment is about 50 percent. You cannot request to receive the new treatment instead of the placebo or sham treatment. Often, you will not know until the study is over whether you have been in the treatment group or the control group. This is called a “masked” study. In some trials, neither doctors nor patients know who is getting which treatment. This is called a “double masked” study. These types of trials help to ensure that the perceptions of the patients or doctors will not affect the study results. Natural History Studies Unlike clinical trials in which patient volunteers may receive new treatments, natural history studies provide important information to researchers on how celiac disease develops over time. A natural history study follows patient volunteers to see how factors such as age, sex, race, or family history might make some people more or less at risk for celiac disease. A natural history study may also tell researchers if diet, lifestyle, or occupation affects how a disease or disorder develops and progresses. Results from these studies provide information that helps answer questions such as: How fast will a disease or disorder usually progress? How bad will the condition become? Will treatment be needed? What Is Expected of Patients in a Clinical Trial? Not everyone can take part in a clinical trial for a specific disease or disorder. Each study enrolls patients with certain features or eligibility criteria. These criteria may include the type and stage of disease or disorder, as well as, the age and previous treatment history of the patient. You or your doctor can contact the sponsoring organization to find out more about specific clinical trials and their eligibility criteria. If you are interested in joining a clinical trial, your doctor must contact one of the trial’s investigators and provide details about your diagnosis and medical history. If you participate in a clinical trial, you may be required to have a number of medical tests. You may also need to take medications and/or undergo
52 Celiac Disease
surgery. Depending upon the treatment and the examination procedure, you may be required to receive inpatient hospital care. Or, you may have to return to the medical facility for follow-up examinations. These exams help find out how well the treatment is working. Follow-up studies can take months or years. However, the success of the clinical trial often depends on learning what happens to patients over a long period of time. Only patients who continue to return for follow-up examinations can provide this important long-term information.
Recent Trials on Celiac Disease The National Institutes of Health and other organizations sponsor trials on various diseases and disorders. Because funding for research goes to the medical areas that show promising research opportunities, it is not possible for the NIH or others to sponsor clinical trials for every disease and disorder at all times. The following lists recent trials dedicated to celiac disease.22 If the trial listed by the NIH is still recruiting, you may be eligible. If it is no longer recruiting or has been completed, then you can contact the sponsors to learn more about the study and, if published, the results. Further information on the trial is available at the Web site indicated. Please note that some trials may no longer be recruiting patients or are otherwise closed. Before contacting sponsors of a clinical trial, consult with your physician who can help you determine if you might benefit from participation. ·
Gluten-Free Diet in Patients with Gluten Sensitivity and Cerebellar Ataxia Condition(s): Celiac Disease; Cerebellar Ataxia; Healthy Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: This study will screen patients with cerebellar ataxia to check for antibodies that indicate allergy to gluten (wheat protein) and will study the effect of a gluten-free diet in patients with these antibodies. Patients with cerebellar ataxia have problems with coordination, resulting in "clumsiness" and unsteadiness of posture and walking. There are many known causes of cerebellar ataxia, but in many patients the cause is unknown and there are no available treatments. Cerebellar ataxia has been recognized as a complication of celiac disease, a syndrome characterized by sensitivity to gluten. Recognizing gluten sensitivity in patients with cerebellar ataxia would be important for two reasons: it
22
These are listed at www.ClinicalTrials.gov.
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would be one of the rare causes of the disease that are potentially treatable, and it would identify patients at risk for developing gastrointestinal cancers, particularly intestinal lymphoma. Patients with cerebellar ataxia of known or unknown cause and normal healthy volunteers of any age are eligible for this study. All participants will have a medical history, physical examination, blood drawn (30 milliliters, or 2 tablespoons) to check for celiac disease antibodies, and possibly other lab tests. This completes the participation of normal volunteers. All patients will have magnetic resonance imaging (MRI) of the brain. This diagnostic tool uses a strong magnetic field and radio waves instead of X-rays to show structural and chemical changes in tissues. During the scanning, the patient lies on a table in a narrow cylinder containing a magnetic field. He or she can speak with a staff member via an intercom system at all times during the procedure. Scanning times vary from 20 minutes to 2 hours. Patients who have celiac disease antibodies will have an upper gastrointestinal (GI) endoscopy intestinal biopsy. For this procedure, a flexible tube is inserted into the mouth and down the throat into the stomach and duodenum (the upper part of the small intestine), where a small tissue sample is taken for microscopic examination. Patients with these antibodies will be put on a gluten-free diet and will be followed at NIH every 3 months for 12 months. On the first visit, patients will have their ataxia evaluated using NINDS's ataxia scale and will meet with a dietitian for instructions for a gluten-free diet. On the second through fifth visits (after 3, 6, 9 and 12 months, respectively, on the gluten-free diet), patients will have their ataxia evaluated, speak with a dietitian to assess their nutritional status, weight, and compliance with the diet, and provide a blood sample for celiac disease antibody testing. At the completion of the study, patients may choose to continue or stop the gluten-free diet. If the ataxia assessments show improvement, patients will be advised to continue the gluten-free diet permanently. Study Type: Observational Contact(s): Maryland; National Institute of Neurological Disorders and Stroke (NINDS), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800411-1222
[email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00006492;jsessionid=7035775 00705A33465F640D173C52182
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Benefits and Risks23 What Are the Benefits of Participating in a Clinical Trial? If you are interested in a clinical trial, it is important to realize that your participation can bring many benefits to you and society at large: ·
A new treatment could be more effective than the current treatment for celiac disease. Although only half of the participants in a clinical trial receive the experimental treatment, if the new treatment is proved to be more effective and safer than the current treatment, then those patients who did not receive the new treatment during the clinical trial may be among the first to benefit from it when the study is over.
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If the treatment is effective, then it may improve health or prevent diseases or disorders.
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Clinical trial patients receive the highest quality of medical care. Experts watch them closely during the study and may continue to follow them after the study is over.
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People who take part in trials contribute to scientific discoveries that may help other people with celiac disease. In cases where certain diseases or disorders run in families, your participation may lead to better care or prevention for your family members. The Informed Consent
Once you agree to take part in a clinical trial, you will be asked to sign an “informed consent.” This document explains a clinical trial’s risks and benefits, the researcher’s expectations of you, and your rights as a patient.
What Are the Risks? Clinical trials may involve risks as well as benefits. Whether or not a new treatment will work cannot be known ahead of time. There is always a chance that a new treatment may not work better than a standard treatment. There is also the possibility that it may be harmful. The treatment you receive may cause side effects that are serious enough to require medical attention. This section has been adapted from ClinicalTrials.gov, a service of the National Institutes of Health: http://www.clinicaltrials.gov/ct/gui/c/a1r/info/whatis?JServSessionIdzone_ct=9jmun6f291. 23
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How Is Patient Safety Protected? Clinical trials can raise fears of the unknown. Understanding the safeguards that protect patients can ease some of these fears. Before a clinical trial begins, researchers must get approval from their hospital’s Institutional Review Board (IRB), an advisory group that makes sure a clinical trial is designed to protect patient safety. During a clinical trial, doctors will closely watch you to see if the treatment is working and if you are experiencing any side effects. All the results are carefully recorded and reviewed. In many cases, experts from the Data and Safety Monitoring Committee carefully monitor each clinical trial and can recommend that a study be stopped at any time. You will only be asked to take part in a clinical trial as a volunteer giving informed consent. What Are a Patient’s Rights in a Clinical Trial? If you are eligible for a clinical trial, you will be given information to help you decide whether or not you want to participate. As a patient, you have the right to: ·
Information on all known risks and benefits of the treatments in the study.
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Know how the researchers plan to carry out the study, for how long, and where.
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Know what is expected of you.
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Know any costs involved for you or your insurance provider.
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Know before any of your medical or personal information is shared with other researchers involved in the clinical trial.
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Talk openly with doctors and ask any questions.
After you join a clinical trial, you have the right to: ·
Leave the study at any time. Participation is strictly voluntary. However, you should not enroll if you do not plan to complete the study.
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Receive any new information about the new treatment.
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Continue to ask questions and get answers.
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Maintain your privacy. Your name will not appear in any reports based on the study.
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Know whether you participated in the treatment group or the control group (once the study has been completed).
What about Costs? In some clinical trials, the research facility pays for treatment costs and other associated expenses. You or your insurance provider may have to pay for costs that are considered standard care. These things may include inpatient hospital care, laboratory and other tests, and medical procedures. You also may need to pay for travel between your home and the clinic. You should find out about costs before committing to participation in the trial. If you have health insurance, find out exactly what it will cover. If you don’t have health insurance, or if your insurance company will not cover your costs, talk to the clinic staff about other options for covering the cost of your care. What Should You Ask before Deciding to Join a Clinical Trial? Questions you should ask when thinking about joining a clinical trial include the following: ·
What is the purpose of the clinical trial?
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What are the standard treatments for celiac disease? Why do researchers think the new treatment may be better? What is likely to happen to me with or without the new treatment?
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What tests and treatments will I need? Will I need surgery? Medication? Hospitalization?
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How long will the treatment last? How often will I have to come back for follow-up exams?
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What are the treatment’s possible benefits to my condition? What are the short- and long-term risks? What are the possible side effects?
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Will the treatment be uncomfortable? Will it make me feel sick? If so, for how long?
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How will my health be monitored?
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Where will I need to go for the clinical trial? How will I get there?
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How much will it cost to be in the study? What costs are covered by the study? How much will my health insurance cover?
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Will I be able to see my own doctor? Who will be in charge of my care?
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Will taking part in the study affect my daily life? Do I have time to participate?
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How do I feel about taking part in a clinical trial? Are there family members or friends who may benefit from my contributions to new medical knowledge?
Keeping Current on Clinical Trials Various government agencies maintain databases on trials. The U.S. National Institutes of Health, through the National Library of Medicine, has developed ClinicalTrials.gov to provide patients, family members, and physicians with current information about clinical research across the broadest number of diseases and conditions. The site was launched in February 2000 and currently contains approximately 5,700 clinical studies in over 59,000 locations worldwide, with most studies being conducted in the United States. ClinicalTrials.gov receives about 2 million hits per month and hosts approximately 5,400 visitors daily. To access this database, simply go to their Web site (www.clinicaltrials.gov) and search by “celiac disease” (or synonyms). While ClinicalTrials.gov is the most comprehensive listing of NIH-supported clinical trials available, not all trials are in the database. The database is updated regularly, so clinical trials are continually being added. The following is a list of specialty databases affiliated with the National Institutes of Health that offer additional information on trials: ·
For clinical studies at the Warren Grant Magnuson Clinical Center located in Bethesda, Maryland, visit their Web site: http://clinicalstudies.info.nih.gov/
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For clinical studies conducted at the Bayview Campus in Baltimore, Maryland, visit their Web site: http://www.jhbmc.jhu.edu/studies/index.html
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For trials on diseases of the digestive system and kidneys, and diabetes, visit the National Institute of Diabetes and Digestive and Kidney Diseases: http://www.niddk.nih.gov/patient/patient.htm
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General References The following references describe clinical trials and experimental medical research. They have been selected to ensure that they are likely to be available from your local or online bookseller or university medical library. These references are usually written for healthcare professionals, so you may consider consulting with a librarian or bookseller who might recommend a particular reference. The following includes some of the most readily available references (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·
A Guide to Patient Recruitment : Today’s Best Practices & Proven Strategies by Diana L. Anderson; Paperback - 350 pages (2001), CenterWatch, Inc.; ISBN: 1930624115; http://www.amazon.com/exec/obidos/ASIN/1930624115/icongroupinterna
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A Step-By-Step Guide to Clinical Trials by Marilyn Mulay, R.N., M.S., OCN; Spiral-bound - 143 pages Spiral edition (2001), Jones & Bartlett Pub; ISBN: 0763715697; http://www.amazon.com/exec/obidos/ASIN/0763715697/icongroupinterna
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The CenterWatch Directory of Drugs in Clinical Trials by CenterWatch; Paperback - 656 pages (2000), CenterWatch, Inc.; ISBN: 0967302935; http://www.amazon.com/exec/obidos/ASIN/0967302935/icongroupinterna
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The Complete Guide to Informed Consent in Clinical Trials by Terry Hartnett (Editor); Paperback - 164 pages (2000), PharmSource Information Services, Inc.; ISBN: 0970153309; http://www.amazon.com/exec/obidos/ASIN/0970153309/icongroupinterna
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Dictionary for Clinical Trials by Simon Day; Paperback - 228 pages (1999), John Wiley & Sons; ISBN: 0471985961; http://www.amazon.com/exec/obidos/ASIN/0471985961/icongroupinterna
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Extending Medicare Reimbursement in Clinical Trials by Institute of Medicine Staff (Editor), et al; Paperback 1st edition (2000), National Academy Press; ISBN: 0309068886; http://www.amazon.com/exec/obidos/ASIN/0309068886/icongroupinterna
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Handbook of Clinical Trials by Marcus Flather (Editor); Paperback (2001), Remedica Pub Ltd; ISBN: 1901346293; http://www.amazon.com/exec/obidos/ASIN/1901346293/icongroupinterna
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Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Ataxia: Failure of muscular coordination; irregularity of muscular action. [EU]
Duodenum: The first or proximal portion of the small intestine, extending from the pylorus to the jejunum; so called because it is about 12 fingerbreadths in length. [EU] Endoscopy: Visual inspection of any cavity of the body by means of an endoscope. [EU]
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PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL
ABOUT PART II In Part II, we introduce you to additional resources and advanced research on celiac disease. All too often, patients who conduct their own research are overwhelmed by the difficulty in finding and organizing information. The purpose of the following chapters is to provide you an organized and structured format to help you find additional information resources on celiac disease. In Part II, as in Part I, our objective is not to interpret the latest advances on celiac disease or render an opinion. Rather, our goal is to give you access to original research and to increase your awareness of sources you may not have already considered. In this way, you will come across the advanced materials often referred to in pamphlets, books, or other general works. Once again, some of this material is technical in nature, so consultation with a professional familiar with celiac disease is suggested.
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CHAPTER 4. STUDIES ON CELIAC DISEASE Overview Every year, academic studies are published on celiac disease or related conditions. Broadly speaking, there are two types of studies. The first are peer reviewed. Generally, the content of these studies has been reviewed by scientists or physicians. Peer-reviewed studies are typically published in scientific journals and are usually available at medical libraries. The second type of studies is non-peer reviewed. These works include summary articles that do not use or report scientific results. These often appear in the popular press, newsletters, or similar periodicals. In this chapter, we will show you how to locate peer-reviewed references and studies on celiac disease. We will begin by discussing research that has been summarized and is free to view by the public via the Internet. We then show you how to generate a bibliography on celiac disease and teach you how to keep current on new studies as they are published or undertaken by the scientific community.
The Combined Health Information Database The Combined Health Information Database summarizes studies across numerous federal agencies. To limit your investigation to research studies and celiac disease, you will need to use the advanced search options. First, go to http://chid.nih.gov/index.html. From there, select the “Detailed Search” option (or go directly to that page with the following hyperlink: http://chid.nih.gov/detail/detail.html). The trick in extracting studies is found in the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the
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format option “Journal Article.” At the top of the search form, select the number of records you would like to see (we recommend 100) and check the box to display “whole records.” We recommend that you type in “celiac disease” (or synonyms) into the “For these words:” box. Consider using the option “anywhere in record” to make your search as broad as possible. If you want to limit the search to only a particular field, such as the title of the journal, then select this option in the “Search in these fields” drop box. The following is a sample of what you can expect from this type of search: ·
Rheumatologic Manifestations of Gastrointestinal Diseases Source: Gastroenterology Clinics of North America. 27(3): 533-562. September 1998. Summary: This journal article provides health professionals with information on the features and putative or theoretic inciting factors for gastrointestinal diseases with rheumatic manifestations. These can be divided into intestinal disorders and disorders of the liver, biliary tree, and pancreas. In intestinal disorders, the functions of intestinal permeability and immune responsiveness are probably of fundamental importance. Factors such as the production of autoantibodies and changes in the production or blood levels of numerous cytokines or pancreatic enzymes appear to have a critical role in disorders in the latter category. Among the intestinal disorders that have rheumatic manifestations are infections, atypical colitides, inflammatory bowel disease (IBD), celiac disease, and miscellaneous disorders. The infectious causes of rheumatic disease include enteric pathogens such as Campylobacter, Salmonella, Shigella, Yersinia, and Clostridium difficle; Tropheryma whippelli; and various intestinal parasites. Atypical colitides associated with gastrointestinal diseases include collagenous and lymphocytic colitis. Rheumatic manifestations of IBD include peripheral arthritis, sacroiliitis, ankylosing spondylitis, and osteomalacia. A condition that may be complicated by osteoarthropathy and osteopenia is celiac disease. Hepatobiliary and pancreatic disorders consist of viral hepatitis, hemochromatosis, autoimmune hepatitis, primary biliary cirrhosis, Wilson's disease, Shwachman's syndrome, cystic fibrosis, pancreatitis, pancreatic cancer, pancreatic panniculitis, and familial Mediterranean fever. 3 tables and 188 references.
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Current Approaches to Diagnosis and Treatment of Celiac Disease: An Evolving Spectrum Source: Gastroenterology. 120(3): 636-651. February 2001.
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Contact: Available from W.B. Saunders Company. 6277 Sea Harbor Drive, Orlando, FL 32887-4800. (800) 654-2452. Website: www.gastrojournal.org. Summary: Celiac disease (CD) is a syndrome characterized by damage of the small intestinal mucosa caused by the gliadin fraction of wheat gluten and similar proteins (prolamines) of barley and rye in persons with genetic susceptibility. The presence of gluten in these subjects (when they eat wheat, barley, rye, and other grains) results in self perpetuating mucosal damage in the small intestine, whereas elimination of gluten (by following a gluten free diet) results in full mucosal recovery. This article reviews current approaches to the diagnosis and treatment of CD. The clinical manifestations of CD vary markedly with the age of the patient, the duration and extent of disease, and the presence of extraintestinal pathologic conditions. In addition to the classical gastrointestinal form, a variety of other clinical manifestations of the disease have been described, including atypical and asymptomatic forms. The authors stress that this makes the diagnosis of CD extremely challenging and recommend relying on a sensitive and specific diagnostic algorithm that allows the identification of different manifestations of the disease. Serologic (blood) tests developed in the last decade provide a noninvasive tool to screen both individuals at risk for the disease and the general population. However, the current gold standard for the diagnosis of CD remains histologic confirmation of the intestinal damage in serologically positive individuals. The keystone treatment of CD patients is a lifelong elimination diet in which food products containing gluten are avoided. 6 figures. 5 tables. 138 references. ·
High Prevalence of Celiac Disease in Italian General Population Source: Digestive Diseases and Sciences. 46(7): 1500-1505. July 2001. Contact: Available from Kluwer Academic Publishers. Customer Service Department, P.O. Box 358, Accord Station, Hingham, MA 02018-0358. (781) 871-6600. Fax (781) 681-9045. E-mail:
[email protected]. Website: www.wkap.nl. Distribution Centre, P.O. Box 322, 3300 AH Dordrecht, The Netherlands. 31 78 6392392. Fax: 31 78 6546474. E-mail:
[email protected]. Summary: The worldwide increase of celiac disease prompted these authors to assess its prevalence in the Italian general population. The 3,483 inhabitants of Campogalliano, Italy were tested for immunoglobulin A antiendomysial antibodies. Twenty subjects showed antibody positive, and duodenal biopsy detected typical mucosal lesions of celiac disease in 17 of them; the remaining three cases had a normal villous architecture, but other findings in 2 of these three cases were
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consistent with potential celiac disease. Only one patient had an overt malabsorption syndrome, characterized by diarrhea, weight loss, and severe weakness. In eight subjects, atypical symptoms of celiac disease, such as dyspepsia and depression, were present, whereas the remaining subjects had no symptoms. Celiac disease was more frequent in younger age groups. The authors conclude that celiac disease prevalence in the Italian general population is 4.9 per 1000, increasing up to 5.7 per 1000 with the inclusion of potential cases. 3 tables. 30 references. ·
Prevalence of Celiac Disease in At-Risk Groups of Children in the United States Source: Journal of Pediatrics. 136(1): 86-90. January 2000. Contact: Available from Mosby, Inc. 11830 Westline Industrial Drive, St. Louis, MO 63146-3318. (800) 453-4351 or (314) 453-4351. Fax (314) 4321158. Website: www.mosby.com. Summary: In contrast to its prevalence in Europe, celiac disease (CD) is considered rare in the United States. This article reports on a study undertaken to determine the prevalence of CD in children presenting with symptoms or conditions associated with CD. Individuals aged 6 months to 20 years were screened for IgG and IgA antigliadin (AGA-IgG and AGA-IgA) and antiendomysium (EMA) antibodies. Those with only elevated AGA-IgG were screened for selective IgA deficiency. Patients with elevated EMA, or AGA-IgG elevation and selective IgA deficiency, were advised to undergo small intestinal biopsy. A total of 1,200 individuals were studied; 34 were EMA positive; a similar number had elevated AGA-IgA levels. 26(19 EMA positive) consented to biopsy, and 21 had CD, giving a prevalence of 1 in 57 (21 out of 1,200). Including the 15 EMA positive patients who refused a biopsy, the prevalence of CD in this study could be as high as 1 in 33 (36 out of 1,200). The authors conclude that CD is not rare in the United States and may be as common as it is in Europe. AGA and EMA are useful for identifying which patients should undergo a small intestinal biopsy. Until a more definitive serologic test becomes available, the intestinal biopsy remains an important component of the diagnosis. 3 tables. 20 references.
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Small Intestinal Mucosal Biopsy for Investigation of Diarrhea and Malabsorption in Adults Source: Gastrointestinal Endoscopy Clinics of North America. 10(4): 739753. October 2000. Contact: Available from W.B. Saunders Company. 6277 Sea Harbor Drive, Orlando, FL 32887-4800. (800) 654-2452 or (407) 345-4000.
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Summary: This article examines the clinical use of small intestinal biopsy for investigation of diarrhea or suspected malabsorption problems. The author stresses that the use of small intestinal biopsy for diagnosis in these conditions depends on an optimal interaction between the clinician endoscopist and the pathologist. This necessitates open and interactive communication between involved physicians and an appreciation for correct tissue handling and biopsy orientation in the endoscopy unit and the pathology laboratory. Classification of biopsy changes on the basis of architectural abnormalities in the small intestinal biopsy may be helpful in defining the diagnosis and include severe (flat) or variably severe (mild or moderate) abnormalities. For some small intestinal disorders that are characterized by diarrhea or malabsorption, the biopsy findings may be distinctive and lead to a specific diagnosis. For others, like celiac disease, the changes are less specific, and it has become better recognized that an increasing number of conditions can produce similar histopathologic changes. Definition of typical gluten sensitive biopsy changes in this disorder is critical. 1 table. 72 references. ·
Celiac Disease In Older People Source: JAGS. Journal of the American Geriatrics Society. 48(12): 16901696. December 2000. Contact: Available from Williams and Wilkins. 351 West Camden Street, Baltimore, MD 21201-2436. (800) 638-6423. Summary: In recent years, there has been increasing recognition that the classical textbook presentation of celiac disease with a malabsorption syndrome and a flat jejunal mucosa is only part of a broad spectrum of clinical and histological features associated with gluten sensitivity. This article explores the diagnosis and presence of celiac disease in older people. One fourth of patients with celiac disease are diagnosed at age 60 or older. The authors note that diagnosis of this treatable condition is often delayed or missed because of a failure to appreciate that celiac disease can present at any age and that symptoms are often subtle and not clearly related to gastrointestinal disease. Nonspecific symptoms and nutritional deficiencies are especially common in older patients and may not always be investigated thoroughly. However, the use of serological screening tests has improved ease of detection of celiac disease in patients without classical symptoms. Diagnosis is important, as lymphoma and upper gastrointestinal malignancies (cancer) are increased in older patients with celiac disease and may be prevented by adherence to a gluten free diet. In addition, most patients show a rapid symptomatic response to gluten withdrawal from their diet, which is often helpful in maintaining compliance. Even patients who considered themselves
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asymptomatic often note an improvement in wellbeing with dietary restriction. 1 table. 99 references. ·
Prevalence of Celiac Disease in Collagenous and Lymphocytic Colitis Source: Canadian Journal of Gastroenterology. 14(11): 919-921. December 2000. Contact: Available from Pulsus Group, Inc. 2902 South Sheridan Way, Oakville, Ontario, Canada L6J 7L6. Fax (905) 829-4799. E-mail:
[email protected]. Summary: Both collagenous and lymphocytic colitis (inflammation of the colon) have been described in patients with celiac disease, suggesting an association between the conditions. Over the past few years, the availability, sensitivity, and specificity of serological (blood) markers for celiac disease have improved; the most recent advancement is the description of tissue transglutaminase as the major antigen for endomysium antibody. This article describes how a quantitative ELISA test was used to measure titres of immunoglobulin A (IgA) antibody to tissue transglutaminase (tTG) along with an immunofluorescent technique for IgA endomysium antibody (EmA) in 15 patients with lymphocytic colitis and 8 with collagenous colitis to determine whether celiac disease latency could be detected. One patient with lymphocytic colitis demonstrated both elevated titres of tTG antibody and positive EmA, and small bowel biopsy confirmed celiac disease. One patients with collagenous colitis had a slightly elevated titre of tTG antibody with a negative EmA, and results of a small bowel biopsy were normal. Three other patients with lymphocytic colitis were already treated for previously diagnosed celiac disease. The prevalence of celiac disease occurring in lymphocytic colitis was found to be 27 percent, but no cases of celiac disease in association with collagenous colitis were found. 1 figure. 1 table. 23 references.
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Changes in Body Composition, Substrate Oxidation, and Resting Metabolic Rate in Adult Celiac Disease Patients After a 1-y Gluten-free Diet Treatment Source: American Journal of Clinical Nutrition. 72(1): 76-81. July 2000. Contact: Available from American Journal of Clinical Nutrition. Production Office, 9650 Rockville Pike, Bethesda, MD 20814. (301) 5307038. Fax (301) 571-8303. Website: www.ajcn.org. Summary: The incidence of celiac has been on the rise in both Europe and the United States. Celiac disease patients are at high risk of undernutrition because of nutrient malabsorption. This study evaluated
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changes in body composition and energy metabolism in a group of patients with celiac disease before and after consumption of a gluten-free diet (GFD). Body composition (by anthropometry and isotopic dilution), resting metabolic rate (RMR), and substrate oxidation rates (by indirect calorimetry) were assessed in 39 adult celiac disease patients (16 men and 23 women) with a mean age of 29.9 years (plus or minus 7.6 years), weight of 58.3 kilograms (plus or minus 6.6 kilograms) and percentage body fat of 20.1 percent (plus or minus 6.7 percent). The same measures were taken in 63 age and height matched controls. Celiac disease patients were studied twice, at diagnosis and 1 year after treatment with a GFD. Before treatment, celiac disease patients had a lower body weight and a higher carbohydrate oxidation rate than did control subjects. Carbohydrate oxidation rates correlated positively with fecal lipid loss (fats in the stool) in untreated celiac disease patients. After the GFD, percentage body fat was higher in celiac disease patients than in control subjects and lipid intakes tended to be higher than before treatment. This longitudinal study showed that the GFD treatment significantly increased body fat stores. Untreated patients preferentially utilized carbohydrates as a fuel substrate, probably as a consequence of both lipid malabsorption and a high carbohydrate intake, and lipid utilization increased with the restoration of the intestinal mucosa. 1 figure. 3 tables. 39 references. ·
Body Composition in Children with Celiac Disease and the Effects of a Gluten-free Diet: a Prospective Case-Control Study Source: American Journal of Clinical Nutrition. 72(1): 71-75. July 2000. Contact: Available from American Journal of Clinical Nutrition. Production Office, 9650 Rockville Pike, Bethesda, MD 20814. (301) 5307038. Fax (301) 571-8303. Website: www.ajcn.org. Summary: Celiac disease is the most common cause of malnutrition in children of Western countries. This article reports on a study with the objective to measure body composition in children at the time celiac disease was diagnosed and against after consumption of a gluten-free diet (GFD). The authors assessed body composition in 29 children and adolescents with a mean age of 9.5 years (plus or minus 3.4 years) at the time celiac disease was diagnosis and in a subset of 20 patients after 1.2 years (plus or minus 0.2 years) of a GFD. The authors also studied 23 patients aged 21.2 years (plus or minus 4.6 years) who consumed a GFD for 10.6 years (plus or minus 4.5 years). Each patient was matched with a healthy control subject of the same age and sex. Untreated patients weight less than control subjects. Fat mass and bone mineral content were lower in the patients than in the control subjects, as was lean mass
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of the limbs. After approximately 1 year of the GFD, there were no significant differences in body composition values between patients and control subjects. Similarly, body composition values of celiac disease patients who consumed the GFD long term were comparable with those of health subjects. The authors conclude that remarkable abnormalities in body composition were found in children at the time of diagnosis of celiac disease. Appropriate dietary treatment reverses body composition abnormalities quickly and the beneficial effects of gluten withdrawal are persistent. Because these results are harder to achieve if celiac disease is first diagnosed in adulthood, efforts to encourage early diagnosis of celiac disease should be made. 3 tables. 28 references. ·
Anti-endomysial Antibody Negative Celiac Disease: Does Additional Serological Testing Help? Source: Digestive Diseases and Sciences. 46(1): 214-221. January 2001. Contact: Available from Kluwer Academic Publishers. Customer Service Deparment, P.O. Box 358, Accord Station, Hingham, MA 02018-0358. (781) 871-6600. Fax (781) 681-9045. E-mail:
[email protected]. Website: www.wkap.nl. Distribution Centre, P.O. Box 322, 3300 AH Dordrecht, The Netherlands. 31 78 6392392. Fax: 31 78 6546474. E-mail:
[email protected]. Summary: Celiac disease (CD, gluten intolerance) is diagnosed by characteristic small intestinal histology. This article reviews the additional diagnostic tests that may contribute or support the diagnosis of CD. Anti endomysium antibodies (AEM) fail to identify all untreated CD patients. The authors report on their study undertaken to determine if additional serology (blood testing), in particular, IgA anti tissue transglutaminase (tTG) antibodies, increases detection. The prospective study included 53 biopsy proven untreated CD patients (39 women, 14 men; median age 51 years) and 65 control patients with normal duodenal histology (46 women, 19 men; age range 17 to 90 years, median 45 years). Thirteen (25 percent) of the CD patients were AEM negative. None were IgA deficient. Three AEM negative CD patients had a raised IgA anti tTG and IgA AGA. IgG AGA was raised in 10 AEM negative CD patients, but also in 14 of the 65 controls (22 percent). The authors conclude that AEM negative CD is common and detection is only modestly enhanced by testing for IgA anti tTG antibodies. Duodenal biopsy is still recommended for the accurate biopsy of CD. 1 figure. 4 tables. 37 references.
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Diarrhea and Malabsorption in the Elderly Source: Gastroenterology Clinics of North America. 30(2): 427-444. June 2001. Contact: Available from W.B. Saunders Company. 6277 Sea Harbor Drive, Orlando, FL 32821-9816. (800) 654-2452. Summary: Diarrhea from infectious organisms is common in the elderly and leads to frequent hospitalizations and a relatively high mortality (death) rate in this population. Diarrhea can be a disabling manifestation of several systemic disorders, including diabetes mellitus, and drug induced diarrhea is particularly common in advanced age. This article, from a special issue on gastrointestinal (GI) disorders in the elderly, addresses diarrhea and malabsorption in the elderly. Although the physiologic functions of intestinal digestion and absorption of macronutrients and most micronutrients are not decreased simply as a function of aging, malabsorptive diseases including chronic pancreatitis and celiac disease (gluten intolerance) are more common in the elderly than has been realized in the past. A particular potential cause of covert malabsorption of macro and micronutrients in older patients is bacterial overgrowth, which may occur in the absence of 'blind loops.' The impact of silent malabsorption on the nutritional health of older patients may be more severe than in the young. Physicians who care for elderly patients are cautioned to be alert to the possible presence of diarrhea and malabsorption. Older patients may not admit to having chronic diarrhea, particularly if they are also incontinent. When an intestinal infection and potential medication-induced gastrointestinal disturbances have been excluded, the differential diagnosis of diarrhea in the elderly is the same as in the young. In the elderly, micronutrient deficiency is a common presenting clinical picture; because the symptoms of malabsorption are covert, the diagnosis often is delayed and nutritional deficiencies are more common and more severe than in the young. 1 table. 102 references.
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Kidney Disease and Gastrointestinal Involvement Source: Dialysis and Transplantation. 29(4): 202-204, 206-207. April 2000. Contact: Available from Dialysis and Transplantation, Attn.: Subscriptions. P.O. Box 10535, Riverton, NJ 08076. (800) 624-4196 or (609) 786-0871. Summary: Some kidney diseases may present with gastrointestinal (GI) manifestations. Conversely, in some GI diseases, renal involvement is present. In addition, some systemic diseases are associated with both kidney and GI involvement. In this review article, the interrelationship between kidney diseases and GI manifestations is addressed. The
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interrelationship between the kidney and liver diseases is also covered. Patients with chronic renal failure often consult a gastroenterologist first because of anorexia, nausea, vomiting, heartburn, and indigestion of a few month's duration. Patients with acute renal failure may also present with anorexia (lack of appetite), nausea, vomiting, and GI bleeding. Kidney diseases that may cause GI manifestations include acute glomerulonephritis, nephrotic syndrome, reflux nephropathy and pyelonephritis, analgesic (pain medication) nephropathy, acute tubulointerstitial nephritis following administration of NSAIDs, obstructive uropathy, polycystic kidney disease, and GI manifestations in patients on dialysis. GI related causes may contribute to the following kidney diseases: prerenal failure, resulting from fluid losses related to vomiting, diarrhea, hemorrhage, bowel fistula, or bowel obstruction; acute tubular necrosis, resulting from extreme renal ischemia; obstructive uropathy, usually due to active inflammatory GI disease; urinary tract infections, which often result in women from E. coli ascending from the GI tract; postinfectious glomerulonephritis; IgA nephropathy, which is often secondary to chronic liver diseases, celiac disease (gluten intolerance), Crohn's disease, adenocarcinomas of the GI tract; and liver disease. 23 references. ·
Coping with Celiac Sprue Disease Source: Digestive Health and Nutrition. 3(1): 33. January-February 2001. Contact: Available from American Gastroenterological Association. 7910 Woodmont Avenue, 7th Floor, Bethesda, MD 20814. (877) DHN-4YOU or (301) 654-2055, ext. 650. E-mail:
[email protected]. Summary: This brief article offers suggestions and recipes for dealing with celiac sprue disease (gluten intolerance). The author notes that this disease requires some serious dietary changes to overcome the common symptoms of abdominal bloating, diarrhea or constipation, fatigue, anemia, and mood swings. These symptoms can appear at any age and are caused by an intolerance to a protein called gluten, which is found in wheat, rye, barley, and possibly oats. The only treatment for celiac disease is a gluten free diet. The author provides two recipes that are appropriate for a gluten free diet: Mexican lasagna (with no wheat, egg, or gluten) and Eggless Chocolate Chip Cookies (no wheat, egg, milk, or gluten). The author also encourages readers that they can find a wide variety of rice breads, waffles, muffins, and cookies from specialty food shops and by mail order. The article concludes with the website addresses for the Celiac Sprue Association (www.csaceliacs.org ) and the National Digestive Diseases Information Clearinghouse (www.niddk.nih.gov/health/digest/pubs/celiac).
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Serological Testing in Screening for Adult Celiac Disease Source: Canadian Journal of Gastroenterology. 13(3): 265-269. April 1999. Contact: Available from Pulsus Group, Inc. 2902 South Sheridan Way, Oakville, Ontario, Canada L6J 7L6. Summary: Celiac disease is a histologic diagnosis, and in patients who are suspected of having this condition, biopsy of the small intestine remains the first diagnostic procedure. Several assays for detecting celiac related antibodies are widely available, and although these serologic tests do not replace the need for a diagnostic biopsy, they can be extremely useful as an adjunct to diagnosis. This review article aims to clarify beliefs about the role of serologic diagnostic tests in screening for, diagnosis of, and followup of adult celiac disease. The sensitivities and specificities of various antibody tests are discussed, along with their clinical use as an adjunct to small bowel biopsy, and as first line investigation for patients with atypical symptoms of celiac disease or patients at high risk of developing sprue. The most widely used of these serologic tests are assays for antigliadin antibodies and tissue antibodies, such as antireticulin and endomysium antibodies. The authors caution that assays for measuring celiac related antibodies are widely available but are still of variable accuracy. Clinicians must therefore be aware of the results obtained by their local laboratories. 1 table. 55 references. (AAM).
Federally-Funded Research on Celiac Disease The U.S. Government supports a variety of research studies relating to celiac disease and associated conditions. These studies are tracked by the Office of Extramural Research at the National Institutes of Health.24 CRISP (Computerized Retrieval of Information on Scientific Projects) is a searchable database of federally-funded biomedical research projects conducted at universities, hospitals, and other institutions. Visit the CRISP Web site at http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket. You can perform targeted searches by various criteria including geography, date, as well as topics related to celiac disease and related conditions. 24 Healthcare projects are funded by the National Institutes of Health (NIH), Substance Abuse and Mental Health Services (SAMHSA), Health Resources and Services Administration (HRSA), Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDCP), Agency for Healthcare Research and Quality (AHRQ), and Office of Assistant Secretary of Health (OASH).
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For most of the studies, the agencies reporting into CRISP provide summaries or abstracts. As opposed to clinical trial research using patients, many federally-funded studies use animals or simulated models to explore celiac disease and related conditions. In some cases, therefore, it may be difficult to understand how some basic or fundamental research could eventually translate into medical practice. The following sample is typical of the type of information found when searching the CRISP database for celiac disease: ·
Project Title: A Trial of Oats in Children with Celiac Disease Principal Investigator & Institution: Hoffenberg, Edward; ; University of Colorado Hlth Sciences Ctr 4200 E 9Th Ave Denver, Co 80262 Timing: Fiscal Year 2000 Summary: This study assess whether children with newly diagnosed celiac disease may include a commercially available oat cereal product in their gluten-free-diet, used to treat their disease. Study duration is six months. Outcome variables are small bowel biopsy measures of injury, antibody levels, and symptoms. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
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Project Title: Assessing Mucosal Surface Area in Celiac Disease Principal Investigator & Institution: Janghorbani, Morteza; ; Biochemanalysis Corporation 2201 W Campbell Park Dr Chicago, Il 60612 Timing: Fiscal Year 2000; Project Start 0-SEP-2000; Project End 9-SEP-2002 Summary: The long-term objectives of this proposed project are to develop a noninvasive method for quantitative assessment of the extent of intestinal mucosal surface area involved in celiac disease. The proposed approach is based on the hypothesis that under certain experimental conditions changes in mucosal surface area are quantitatively reflected in the absorption of a dose of 13C-labeled saturated long-chain fatty acid. Thus, we propose to develop a method for accurate and noninvasive measurement of absorption of a dose of 13C-palmitic acid ingested under standard test conditions by the celiac patients. The method is based on measurement of the ratio of 13CExcess/Dy in a sample of feces from the patient after ingestion of a standard dose of 13C-palmitic acid and DyCl3. During Phase-I of this project, we will show the validity of our approach by making appropriate measurements in ten children with firm celiac diagnosis before and after institution of a gluten free diet (GFD) which is the standard therapy for this disease. During Phase-II of the project, we will show the expected
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linear correlation between the extent of intestinal mucosal involvement and absorption of the labeled-fatty acid. The outcome of this research will be availability of a "Test Kit" for this purpose, which will be marketed both for routine clinical applications and for research purposes. Proposed Commercial Applications: This project will lead to availability of a new noninvasive tool to evaluate mucosal surface area for management of celiac patients. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Celiac Disease in Diabetic Children Principal Investigator & Institution: Werlin, Steve; ; Medical College of Wisconsin 8701 Watertown Plank Rd Milwaukee, Wi 53226 Timing: Fiscal Year 2000 Summary: The specific aims of this proposal are to determine the incidence of anti-endoomysial antibodies; the incidence of celiac disease; and, if there is a relationship between HLA type and diabetics with celiac disease. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
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Project Title: Celiac Disease in Osteoporosis Principal Investigator & Institution: Stenson, William F.; Professor of Medicine; Barnes-Jewish Hospital 216 S Kingshighway Blvd St. Louis, Mo 63110 Timing: Fiscal Year 2000; Project Start 5-JUN-2000; Project End 1-MAY2005 Summary: (Abstract of the application) There is compelling evidence that the prevalence of celiac disease in the general population in the United States is higher than is generally appreciated and that patients with the symptoms classically associated with celiac disease, primarily diarrhea and weight loss, form a relatively small portion of the total celiac population. Some patients with celiac disease have medical problems associated with the malabsorption of specific nutrients without having problems with diarrhea and weight loss. Celiac disease is associated with the malabsorption of calcium and vitamin D resulting in osteoporosis. Although the prevalence of osteoporosis in the population of patients with celiac disease is known to be increased compared to the prevalence in the general population, the contribution of celiac disease to osteoporosis in the general population and the prevalence of celiac disease in the population of patients with osteoporosis are unknown. The central hypotheses of this proposal are: 1. The prevalence of celiac disease in the population of patients with osteoporosis is significantly increased
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above that of the general population. 2. Management of osteoporotic patients with celiac disease would be facilitated by the diagnosis and treatment of their celiac disease. These two premises taken together would justify a public health recommendation for screening patients with osteoporosis with serological tests for celiac disease. We have the unique resource of a Bone Health Clinic with a database that includes more than 2,000 individuals with osteoporosis as well as an even larger number of patients with normal bone density. In addition, the Bone Health Clinic sees more than 750 new patients per year of which 50% have osteoporosis. We propose to use the resources of our Bone Health Clinic to test this hypothesis. We have two Specific Aims: 1. To define the prevalence of celiac disease in a population of patients with osteoporosis and to compare the prevalence in a case control group of individuals with normal bone mass indices. This Specific Aim will be pursued using patients from the Bone Health Clinic database that will already have been defined as having osteoporosis and new patients accrued to the Bone Health Clinic. If the prevalence of celiac disease in the osteoporotic population is high enough one could justify a public health recommendation that all patients with osteoporosis undergo serologic screening for celiac disease. Studies under this Specific Aim will also allow recommendation for which sequence of serologic tests is most likely to be helpful in identifying patients with osteoporosis who also have celiac disease. 2. To determine if there are any significant differences in the clinical histories, laboratory studies or response to therapy between the populations of newly diagnosed and previously untreated osteoporotic patients with and without celiac disease. Specific studies will include: a. We will compare the population of patients with osteoporosis and celiac disease with the population of patients with osteoporosis without celiac disease in terms of their clinical characteristics and biochemical parameters determined at the time of diagnosis. b. We will compare patients with osteoporosis and celiac disease with patients with osteoporosis without celiac disease in terms of their response to therapy. Patients with osteoporosis without celiac disease will receive calcium and vitamin D for one year, whereas patients with osteoporosis and celiac disease will receive calcium, vitamin D and a gluten-free diet for one year. At the end of the year of therapy, bone mass indices will be repeated and the response to the therapy of the two groups will be compared. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
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Project Title: Dietary Peptide Elim--Testing Hypothesis for Type I Diabetes
a Celiac Disease
Principal Investigator & Institution: Eisenbarth, George S.; ; University of Colorado Hlth Sciences Ctr 4200 E 9Th Ave Denver, Co 80262 Timing: Fiscal Year 2000 Summary: This abstract is not available. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Epidemiology of Celiac Disease--A Population Based Study Principal Investigator & Institution: Murray, Joseph A.; Associate Professor of Medicine; Mayo Clinic Rochester 200 1St St Sw Rochester, Mn 55905 Timing: Fiscal Year 2000; Project Start 5-JUL-2000; Project End 0-JUN2005 Summary: In parts of Europe celiac disease is considered one of the most common chronic autoimmune diseases. It has been identified as a cause of significant morbidity and an increased risk of malignancies. Celiac disease is thought to be quite rare in the United States. Because it is thought to be rare, it is rarely considered in the differential diagnosis of many common conditions. As general population screening requires a great expenditure of resources it would make sense to study the prevalence of the disease in those groups of people most likely to have it. If it is present in these groups at the same level as has been seen in countries where celiac disease is common then this would justify consideration of more widespread screening. This study aims to examine the prevalence of celiac disease in those thought most at risk: Type one diabetes, family history of celiac disease or dermatitis herpetiformis; osteoporosis, chronic diarrhea with abdominal pain, and iron deficiency anemia (Specific aim number 1). We will use standardized validated gastrointestinal questionnaires to identify any clinical predictors of the who may have celiac disease (Specific aim number 2). We aim to study whether the HLA associations seen in European populations are unaltered by the more heterogenous population of the US and screen for other predictive HLA genotypes for disease risk in American celiacs (Specific aim number 3). If celiac disease is a common condition, that is undiagnosed, it is important to know what benefit (or detriment) may accrue to the individual when the diagnosis has been made. To study how making the diagnosis of CD as the result of a screening project affects both gastrointestinal and non- gastrointestinal symptoms, the patient's quality of life, and the utilization of health care resources
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(Specific aim number 4). If this proposal demonstrates that celiac disease is more common than believed, it will provide important insights into who it affects, how to detect the condition or predict risk, while demonstrating a substantial benefit in both relief of suffering, improved functioning and reduced utilization of health care. This will be possible, because the subjects who will be diagnosed with CD will actually live in Olmsted County, and their medical histories and ongoing medical care will be recorded in community medical records accumulated by the Rochester Epidemiology Project. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Genetic and Environmental Causes of Celiac Disease Principal Investigator & Institution: Rewers, Marian J.; Professor of Pediatrics; University of Colorado Hlth Sciences Ctr 4200 E 9Th Ave Denver, Co 80262 Timing: Fiscal Year 2000 Summary: Celiac Disease (CD) is wheat intolerance to foods containing wheat, oats, rye or barley. It develops when the body's own immune system attacks the small intestines, damaging the lining of the intestinal wall; hence preventing absorption of nutrients into blood stream. The protocol is based on our principal hypothesis that celiac disease (CD) is as prevalent in the United States as it is in Europe, however it is under diagnosed due to mild presentation in the majority of the cases and lack of a comprehensive screening program in high risk groups. Celiac disease is the most frequent autoimmune disease of the digestive system, begins in early childhood and can only be controlled by life-long dietary restrictions. The reason it is unique among other autoimmune diseases is that a causative environmental factor is known and its elimination removes symptoms of the disease and prevents long term complications such as severe malnutrition, growth impairment, and malignancies. Unfortunately, most of the CD patients in the United States remain undiagnosed and untreated; therefore large groups of high risk individuals need to be studied to reveal the full spectrum of the disease, to identify genetic and environmental factors, and develop optimal screening and prevention strategies. Our group is in a unique position to meet these goals by studying two already existing population-based cohorts of persons at high risk of CD: 1) general population screened for genes (HLA alleles) associated with CD (R01, DK-32493, 1993-2001 Marian Rewers, P.I.); and 2) a large population of patients with type 1 diabetes and their relatives followed by the Barbara Davis Center for Childhood Diabetes in Denver. These two groups are tested for Transglutaminase antibody (TgIgA), an indicator that the immune
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system is attacking the intestinal wall. By enrolling people who are at increased risk we hope to a) establish a non-invasive means of testing for celiac disease; b) determine the prevalence of celiac disease in the United States through selected morphological and immunological features of CD in intestinal biopsies on children positive for EMA or Tg; c) document variations of symptoms between individuals; and d) determine which environmental and genetic characteristics that influence development of CD. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Ninth International Symposium on Celiac Disease Principal Investigator & Institution: Fasano, Alessio; Professor of Pediatric Medicine and Phys; Pediatrics; University of Maryland Balt Prof School Professional Schools Baltimore, Md 21201 Timing: Fiscal Year 2000; Project Start 0-AUG-2000; Project End 1-JUL2001 Summary: (adapted from the application) This course is designed for health care practitioners including gastroenterologists, general practitioners, pediatricians, nutritionists, and nurses who provide direct patient care. A wide range of topics of Celiac Disease will be covered, presenting the physicians with practical information on the epidemiology, pathogenesis, clinical presentation, diagnosis and treatment of the disease. It is the goal of this program to enrich and enhance the attender's awareness of Celiac Disease. After attending this symposium, participants will be able to: Describe the genetic, environmental and immunological factors implicated in the disease; Understand the strength and limitations of epidemiological screening studies; Recognize various clinical manifestations and conditions associated with Celiac Disease; Discuss the pathological changes, criteria for diagnosis and treatment of Celiac Disease; Describe the serological tests available as a screen for Celiac Disease. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
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Project Title: CD1 in Intestine and Liver Principal Investigator & Institution: Kim, Hyun S.; Medicine; University of California San Diego 9500 Gilman Dr San Diego, Ca 92093 Timing: Fiscal Year 2000; Project Start 1-JUL-1998; Project End 0-JUN2003 Summary: (taken from application) The classic major histocompatibility complex (MHC) class I and class II pathways are well established in antigen presentation. In addition, the CD1 family of proteins are now
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recognized to likely represent another class of molecules that are important in unique aspects of antigen processing and activation of distinct subsets of T-cells such as those contained within the gut and liver. Human CD1 consists of 5 genes (CD1AE) that are encoded on chromosome 1 outside the MHC locus. Human CDI has strong structural similarities to MHC class I but also shows several features in common with MHC class II, suggesting a distinct relationship to both of the previously characterized classical MHC molecules. CDld, a member of this family, is prominently displayed on intestinal epithelial cells (IEC) and hepatocytes. Furthermore, the expression of CDld is increased in immune-mediated gastrointestinal diseases, such as inflammatory bowel disease and celiac disease. Although the exact role of CDld in the mucosal immune system is unclear, CD1 d exhibits unique biochemical properties and functional characteristics. CDld is expressed on the cell surface of normal IECs as a 37-kD, nonglycosylated molecule independently of pi2-microglobulin which is clearly distinct from all other MHC class I-related molecules. In addition, this biochemical form of CD1d is directly involved in the proliferation of T-cells to normal IECs. In order to understand the function of this unique antigen-presenting molecule in human intestine and liver, it will be important to: (1) identify interacting proteins which are involved in biosynthesis and/or assembly of CDld using the yeast two-hybrid system, phage display technologies, and biosynthetic labelling; (2) characterize the responses of human intestinal lymphocytes to CDld by measuring proliferation and cytokine production, and (3) identify CDld interacting surface ligand(s) on T-cells using immunoprecipitation with Fc-CDld fusion protein. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Cytochrome P450 Mediated Metabolism, Diet, and the Gastrointestinal Tract Principal Investigator & Institution: Wood, Alastair J.; Professor; Vanderbilt University 2101 W End Ave Nashville, Tn 37240 Timing: Fiscal Year 2000 Summary: The oral bioavailability of drugs if determined by their absorption from the gastro-intestinal tract and first-pass metabolism occurring in either the intestinal epithelium and/or the liver. The often marked interindividual variability in plasma concentrations and associated clinical response is frequently determined by these factors. Extensive study has been made of the hepatic component of this effect, but other determinants are largely undefined. For example, CYP3Amediated metabolism during absorption by the intestinal epithelium and efflux from this tissue associated with P- glycoprotein. Such processes as
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well as metabolism in the liver may be potentially modulated by dietaryrelated factors and/or intestinal disease. Accordingly, studies will address some of these determinants that are important in the clinical use of drugs or may be significant in the chemoprevention of cancer resulting from dietary and environmental procarcinogens. In the latter instance, it is though that enzymes like CYP1A, CYP2E1 and CYP3A activate the procarcinogen. Since the chemoprotective effect of vegetables against cancer is well-recognized, it is hypothesized that certain phytochemical may inhibit these enzymes. This will be tested by investigating the ability of cruciferous vegetables and garlic-related products to inhibit the metabolism of in vivo probes of the individual CYP isoforms in humans. Subsequently, studies will be extended to examine the effects of representative pure chemical constituents that are under development as chemoprotective agents (oltipraz, phenethyl isothiocyanate, S-allyl cysteine). The effect of diet of CYP2E1 and CYP3A activities will also be examined in racial groups with different disposition characteristics from Caucasians, as identified in Project 1. In particular, Japanese and Mexican-Americans that routinely eat a "western" diet compared to "native" diet. The mechanism(s) whereby dietary salt affects the plasma concentration-time profile of certain CYP3A/P-glycoprotein substrates will also be examined in both humans and animal models. Finally, the effect of intestinal disease such as celiac disease and tropical sprue on the oral bioavailability of drugs will be determined, since such inflammatory diseases are associated with major disturbances in the structure and functioning of the intestinal epithelium. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Dermatitis Herpetiformis and the Mucosal Immune Response Principal Investigator & Institution: Hall, Russell P.; Professor and Chair; Medicine; Duke University Durham, Nc 27706 Timing: Fiscal Year 2001; Project Start 1-APR-2001; Project End 1-MAR2006 Summary: (Verbatim) Dermatitis herpetiformis (DH) is a blistering skin disease characterized by the presence of cutaneous IgA deposits and an associated, almost always asymptomatic, gluten sensitive enteropathy (GSE). The critical role of the mucosal immune response (MIR) in DH has been demonstrated by the observation that, despite the lack of clinical symptoms of GSE in the majority of DH patients, the cutaneous manifestations of DH can be controlled by a gluten free diet. The mechanisms that allow for the development of cutaneous IgA deposits and skin disease yet that prevent the development of symptoms of GSE
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are not known. The purpose of this project is to characterize the MIR in patients with DH in order to determine the factors that prevent the development of clinical signs of gastrointestinal disease yet result in cutaneous deposits of IgA and the development of the cutaneous manifestations of DH. In addition, this project will provide new information regarding factors that may modify and regulate the mucosal immune response to dietary proteins in man and how mucosal inflammation results in inflammatory disease in the skin, joints and other organs. The specific aims of this project are: 1. Determine the antigenic patients with DH and isolated GSE and control subjects using organ culture of specificity and dose response of the T cells in small bowel biopsies from isolated GSE. 2. Characterization of the circulating neutrophils in patient with small bowel biopsies and gliadin peptides, some of which induce disease in DH on gluten containing diets and of the level of cytokine(IL-1/TNFa)/chemokine(IL-8) expression in the skin. Skin biopsies from patients with DH from areas predisposed to develop skin lesions (extensor, surfaces) and those areas which normally do not develop skin lesions (upper inner arm) will be analyzed for IL-1a, TNF-a, IL-8, and other cyto/chemokine expression during periods of control of the skin disease and no skin lesions and during disease activity. Neutrophils will be analyzed during periods when skin lesions are present and not present to assess the level of activation and expression of cell surface molecules which play a role in neutrophil migration 3. Characterization of the CDR3 region of the T cell Vb families expressed in the small bowel biopsies of patients with DH and of patients with isolated symptomatic and asymptomatic GSE. cDNA from the small bowel of patients with DH, patients with isolated symptomatic GSE and patients with isolated, asymptomatic (treated) GSE and patients with non-gluten sensitive intestinal disease will be analyzed by RT-PCR for the evidence of clonality of the T cells in the gut using CDR3 spectrotype analysis and single strand conformational polymorphisms. These studies will provide insights into the pathogenesis of DH and isolated GSE, the relationship between the MIR and the skin and factors important in controlling the mucosal immune response in man. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Mapping of Non-HLA Loci for Gluten Sensitive Enteropathy Principal Investigator & Institution: Neuhausen, Susan L.; Associate Professor; Medical Informatics; University of Utah 200 S University St Salt Lake City, Ut 84112
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Timing: Fiscal Year 1999; Project Start 6-SEP-1996; Project End 1-AUG2002 Summary: (Adapted from the Investigator's Abstract): This is the first resubmission of a proposal for four years of support to map non-HLAlinked loci for gluten sensitive enteropathy (GSE) using affected sibling pair families. GSE is a histological abnormality of the jejunum which improves on withdrawal of gluten from the diet, and includes both patients with the malabsorption disorder celiac disease (CD) and those with the gluten sensitive skin disorder dermatitis herpetiformis (DH). Patients with CD have symptoms including growth failure, abdominal pain, and diarrhea. The risk to first degree relatives of an individual with GSE is 8-12% and the risk for MZ twins is 70%. GSE has a strong association with HLA DQ genotypes. However, HLA alone is not sufficient to explain the hereditary nature of GSE. The applicants propose to: (1) ascertain 100 kindreds with at least two affected siblings; (2) collect blood samples from the affected siblings, their parents, additional affected family members, and connecting family members; (3) confirm diagnoses through biopsy reports; (4) perform DNA-based HLA typing of DQA, DQB, and DQCAR (in between DQA and DQB) loci and assess the degree of association with individual loci and haplotypes at these loci; (5) test for linkage with a dozen candidate genes and regions suggested by the clinical correlations of GSE with various diseases and by tentative immunopathogenesis; and (6) perform a genome search with 250 primarily tri- and tetranucleotide repeat markers (intermarker distances 76%) on up to 400 individuals if none of the candidate genes show linkage to GSE. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Models in Population Genetics Principal Investigator & Institution: Thomson, Glenys J.; Integrative Biology; University of California Berkeley Berkeley, Ca 94720 Timing: Fiscal Year 2000; Project Start 1-APR-1979; Project End 1-MAR2002 Summary: The genes of the human leukocyte antigen (HLA) region control a variety Of functions involved in the immune response, and influence susceptibility to over 40 diseases. Our understanding of the structure and function of the HLA genes, their disease associations, and the evolutionary features of this multigene family has benefitted from recent advances in molecular biology, immunology, disease modelling and population genetics. Theoretical studies in the development of models to determine the modes of inheritance of the HLA associated diseases have led to a better understanding of the inheritance patterns in
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insulin dependent diabetes mellitus, rheumatoid arthritis, multiple sclerosis, ankylosing spondylitis, hemochromatosis, celiac disease, and others. It is now clear that many of the HLA associated diseases involve heterogeneity in their HLA components, as well as non-HLA genetic components. The specific aims of our research are to study the genetic components in the etiology of the HLA associated diseases, and population genetic features of the HLA system. A variety of methods to test modes of inheritance of diseases using marker allele information, will be developed. Methods appropriate for the analysis of marker systems which are not highly polymorphic, to both detect linkage and determine modes of inheritance, will be investigated. The information content of particular pedigree types for LOD score analysis will be investigated. Two methods using patterns of linkage disequilibrium will be investigated to determine their usefulness in mapping disease predisposing genes. A number of large collaborative data sets of HLA associated diseases will be analyzed. A framework for genetic counselling of HLA associated, and other complex diseases, will be developed. The results of our studies are generally applicable to the mapping and characterization of complex human genetic traits. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Regulation of Human IELS by CD94 and HLA-E Principal Investigator & Institution: Jabri, Bana; Molecular Biology; Princeton University Princeton, Nj 08544 Timing: Fiscal Year 2001; Project Start 1-SEP-2001; Project End 0-JUN2006 Summary: (Applicant's Abstract): In the microenvironment of the human gut epithelium, armed effector T cells (T-IELs) with cytolytic functions are tightly regulated by CD94/NKG2, a novel family of HLA-E specific heterodimeric receptors originally identified on NK cells. These receptors can switch adaptive responses on and off by using different activating or inhibitory NKG2 isotypes and appear to regulate remarkably large T-IEL clonal expansions in healthy individuals. In celiac disease, a condition associated with epithelial damage, they exclusively express activating isotypes, suggesting that dysregulation causes disease. The overarching goal of the proposed research is to develop a model of how adaptive immunity mediated by cytolytic effector T cells is regulated in the gut microenvironment by CD94/NKG2 receptors of innate immunity. The investigator will focus on three specific aims fundamental to understanding the biological significance of this regulatory system. In Specific Aim 1, expression and regulation of HLA-E and G on intestinal epithelial cells, cytokines produced in the GALT in normal and
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inflammatory conditions will be used to stimulate expression of HLA-E and G by freshly isolated IECs, IEC lines and professional APCs. In Specific Aim 2, expression and regulation of CD94/NKG2 isotypes by TIELs, the investigator will characterize the pattern of expression of the different CD94/NKG2 isotypes, the TCR V-beta and V-alpha repertoire of T-IELs expressing distinct CD94/NKG2 isotypes (by spectroanalysis and sequencing), and the cytokine profile of T-IELs expressing distinct CD94/NKG2 isotypes. In Specific Aim 3, functional properties of CD94INKG2 receptors expressed by T-IELs, cloned T-IELs expressing single NKG2 isotypes will be used to determine how they contribute to cytolytic function and cytokine secretion and to characterize the biochemical signals involved. The proposed research will test in a molecularly well-defined system the general hypothesis that NK receptors and non-classical MHC class I-like molecules regulate interactions between T-IELs and intestinal epithelial cells. The results are likely to have important implications for our understanding of the processes that fine tune cytolytic T cell responses in the high antigen environment of the gut, regulating local immunity and controlling epithelial cell damage. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Survival Models for Mapping Genes for Complex Diseases Principal Investigator & Institution: Li, Hongzhe; Associate Professor; Internal Medicine; University of California Davis 1 Shields Ave Davis, Ca 95616 Timing: Fiscal Year 2001; Project Start 0-SEP-1998; Project End 1-AUG2005 Summary: (provided by applicant): The long term objective of this project is to develop powerful and computationally efficient statistical methods of identifying genes underlying complex genetic diseases in humans. The specific aim of this project is to continue to develop survival models to incorporate age of onset data, environmental covariates information, gene-environment interactions, and multiple disease loci into familybased association analysis, joint linkage and linkage disequilibrium analyses, and multipoint multi-trait-locus linkage analysis of complex human diseases. The proposed methods build on our current methods and hinge on novel integration of methods in multivariate survival analysis and methods in modern human genetics. The focus will be on the development of survival models for: (1) incorporating age of onset and environmental risk factors into genetic association study using a linkage disequlibrium based Cox model for family data of any size; (2)
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joint analysis of linkage and linkage disequilibrium for age of onset data based on nuclear families; (3) for multipoint multi-trait-locus linkage tests that can incorporate age of onset and environmental covariates data using the additive genetic frailty model. The project will also investigate the power and efficiencies of these methods, and compare them with existing methods. In addition, this project will develop practical and feasible computer programs in order to implement the proposed methods, to evaluate the performance of these methods through extensive simulations and application to real data on HLA-associated diseases, including type 1 diabetes, rheumatoid arthritis, celiac disease, narcolepsy, and ankylosing spondylitis. The work proposed here will contribute both statistical methodology to mapping genes for complex diseases and multivariate survival analysis, offer insight into each of the clinical areas represented by the various data sets to evaluate these new methods, and facilitate final identification of genes involved in these complex diseases. All programs developed under this grant and detailed documentations will be made available free-of-charge to interested researchers via the World Wide Web. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
E-Journals: PubMed Central25 PubMed Central (PMC) is a digital archive of life sciences journal literature developed and managed by the National Center for Biotechnology Information (NCBI) at the U.S. National Library of Medicine (NLM).26 Access to this growing archive of e-journals is free and unrestricted.27 To search, go to http://www.pubmedcentral.nih.gov/index.html#search, and type “celiac disease” (or synonyms) into the search box. This search gives you access to full-text articles. The following is a sample of items found for celiac disease in the PubMed Central database:
Adapted from the National Library of Medicine: http://www.pubmedcentral.nih.gov/about/intro.html. 26 With PubMed Central, NCBI is taking the lead in preservation and maintenance of open access to electronic literature, just as NLM has done for decades with printed biomedical literature. PubMed Central aims to become a world-class library of the digital age. 27 The value of PubMed Central, in addition to its role as an archive, lies the availability of data from diverse sources stored in a common format in a single repository. Many journals already have online publishing operations, and there is a growing tendency to publish material online only, to the exclusion of print. 25
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·
In the Literature:Irritable bowel syndrome: Could it be celiac disease? by John Hoey; 2002 February 19 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=99362&ren dertype=external
·
Incomplete gastric metaplasia in children with insulin-dependent diabetes mellitus and celiac disease. An ultrastructural study by Marina Bertini, Andrea Sbarbati, Enrico Valletta, Leonardo Pinelli, and Luciano Tato; 2001 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=34772
·
Linkage analysis of HLA and candidate genes for celiac disease in a North American family-based study by Susan L. Neuhausen, Michael Feolo, James Farnham, Linda Book, and John J. Zone; 2001 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=60993
·
Small intestinal T cells of celiac disease patients recognize a natural pepsin fragment of gliadin by Yvonne van de Wal, Yvonne M. C. Kooy, Peter A. van Veelen, Salvador A. Pena, Luisa M. Mearin, Oyvind Molberg, Knut E. A. Lundin, Ludvig M. Sollid, Tuna Mutis, Willemien E. Benckhuijsen, Jan Wouter Drijfhout, and Frits Koning; 1998 August 18 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=21459
The National Library of Medicine: PubMed One of the quickest and most comprehensive ways to find academic studies in both English and other languages is to use PubMed, maintained by the National Library of Medicine. The advantage of PubMed over previously mentioned sources is that it covers a greater number of domestic and foreign references. It is also free to the public.28 If the publisher has a Web site that offers full text of its journals, PubMed will provide links to that site, as well as to sites offering other related data. User registration, a subscription fee, or some other type of fee may be required to access the full text of articles in some journals. To generate your own bibliography of studies dealing with celiac disease, simply go to the PubMed Web site at www.ncbi.nlm.nih.gov/pubmed. Type “celiac disease” (or synonyms) into the search box, and click “Go.” The
PubMed was developed by the National Center for Biotechnology Information (NCBI) at the National Library of Medicine (NLM) at the National Institutes of Health (NIH). The PubMed database was developed in conjunction with publishers of biomedical literature as a search tool for accessing literature citations and linking to full-text journal articles at Web sites of participating publishers. Publishers that participate in PubMed supply NLM with their citations electronically prior to or at the time of publication.
28
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following is the type of output you can expect from PubMed for “celiac disease” (hyperlinks lead to article summaries): ·
A survey of celiac-sprue patients: effect of dietary restrictions on religious practices. Author(s): Bentley AC. Source: The Journal of General Psychology. 1988 January; 115(1): 7-14. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3351491&dopt=Abstract
·
Celiac sprue. Author(s): Murphy D. Source: Gastroenterology Nursing : the Official Journal of the Society of Gastroenterology Nurses and Associates. 1995 July-August; 18(4): 133-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7654809&dopt=Abstract
Vocabulary Builder Alleles: Mutually exclusive forms of the same gene, occupying the same locus on homologous chromosomes, and governing the same biochemical and developmental process. [NIH] Analgesic: An agent that alleviates pain without causing loss of consciousness. [EU] Anorexia: Lack or loss of the appetite for food. [EU] Anthropometry: The technique that deals with the measurement of the size, weight, and proportions of the human or other primate body. [NIH] Antigen: Any substance which is capable, under appropriate conditions, of inducing a specific immune response and of reacting with the products of that response, that is, with specific antibody or specifically sensitized Tlymphocytes, or both. Antigens may be soluble substances, such as toxins and foreign proteins, or particulate, such as bacteria and tissue cells; however, only the portion of the protein or polysaccharide molecule known as the antigenic determinant (q.v.) combines with antibody or a specific receptor on a lymphocyte. Abbreviated Ag. [EU] Assay: Determination of the amount of a particular constituent of a mixture, or of the biological or pharmacological potency of a drug. [EU] Biliary: Pertaining to the bile, to the bile ducts, or to the gallbladder. [EU]
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Bioavailability: The degree to which a drug or other substance becomes available to the target tissue after administration. [EU] Biochemical: Relating to biochemistry; characterized by, produced by, or involving chemical reactions in living organisms. [EU] Biosynthesis: The building up of a chemical compound in the physiologic processes of a living organism. [EU] Campylobacter: A genus of bacteria found in the reproductive organs, intestinal tract, and oral cavity of animals and man. Some species are pathogenic. [NIH] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Cirrhosis: Liver disease characterized pathologically by loss of the normal microscopic lobular architecture, with fibrosis and nodular regeneration. The term is sometimes used to refer to chronic interstitial inflammation of any organ. [EU] Clostridium: A genus of motile or nonmotile gram-positive bacteria of the family bacillaceae. Many species have been identified with some being pathogenic. They occur in water, soil, and in the intestinal tract of humans and lower animals. [NIH] Constipation: Infrequent or difficult evacuation of the faeces. [EU] Cutaneous: Pertaining to the skin; dermal; dermic. [EU] Cysteine: A thiol-containing non-essential amino acid that is oxidized to form cystine. [NIH] Cytokines: Non-antibody proteins secreted by inflammatory leukocytes and some non-leukocytic cells, that act as intercellular mediators. They differ from classical hormones in that they are produced by a number of tissue or cell types rather than by specialized glands. They generally act locally in a paracrine or autocrine rather than endocrine manner. [NIH] Digestion: The process of breakdown of food for metabolism and use by the body. [NIH] Disposition: A tendency either physical or mental toward certain diseases. [EU]
Dyspepsia: Impairment of the power of function of digestion; usually applied to epigastric discomfort following meals. [EU] Enzyme: A protein molecule that catalyses chemical reactions of other substances without itself being destroyed or altered upon completion of the
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reactions. Enzymes are classified according to the recommendations of the Nomenclature Committee of the International Union of Biochemistry. Each enzyme is assigned a recommended name and an Enzyme Commission (EC) number. They are divided into six main groups; oxidoreductases, transferases, hydrolases, lyases, isomerases, and ligases. [EU] Epithelium: The covering of internal and external surfaces of the body, including the lining of vessels and other small cavities. It consists of cells joined by small amounts of cementing substances. Epithelium is classified into types on the basis of the number of layers deep and the shape of the superficial cells. [EU] Feces: The excrement discharged from the intestines, consisting of bacteria, cells exfoliated from the intestines, secretions, chiefly of the liver, and a small amount of food residue. [EU] Fibrosis: The formation of fibrous tissue; fibroid or fibrous degeneration [EU] Fistula: An abnormal passage or communication, usually between two internal organs, or leading from an internal organ to the surface of the body; frequently designated according to the organs or parts with which it communicates, as anovaginal, brochocutaneous, hepatopleural, pulmonoperitoneal, rectovaginal, urethrovaginal, and the like. Such passages are frequently created experimentally for the purpose of obtaining body secretions for physiologic study. [EU] Genotype: The genetic constitution of the individual; the characterization of the genes. [NIH] Glomerulonephritis: A variety of nephritis characterized by inflammation of the capillary loops in the glomeruli of the kidney. It occurs in acute, subacute, and chronic forms and may be secondary to haemolytic streptococcal infection. Evidence also supports possible immune or autoimmune mechanisms. [EU] Haplotypes: The genetic constitution of individuals with respect to one member of a pair of allelic genes, or sets of genes that are closely linked and tend to be inherited together such as those of the major histocompatibility complex. [NIH] Heartburn: Substernal pain or burning sensation, usually associated with regurgitation of gastric juice into the esophagus. [NIH] Hemorrhage: Bleeding or escape of blood from a vessel. [NIH] Hepatic: Pertaining to the liver. [EU] Hepatobiliary: Pertaining to the liver and the bile or the biliary ducts. [EU] Hepatocytes: The main structural component of the liver. They are specialized epithelial cells that are organized into interconnected plates called lobules. [NIH]
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Histocompatibility: The degree of antigenic similarity between the tissues of different individuals, which determines the acceptance or rejection of allografts. [NIH] Hydrogen: Hydrogen. The first chemical element in the periodic table. It has the atomic symbol H, atomic number 1, and atomic weight 1. It exists, under normal conditions, as a colorless, odorless, tasteless, diatomic gas. Hydrogen ions are protons. Besides the common H1 isotope, hydrogen exists as the stable isotope deuterium and the unstable, radioactive isotope tritium. [NIH] Immunity: The condition of being immune; the protection against infectious disease conferred either by the immune response generated by immunization or previous infection or by other nonimmunologic factors (innate i.). [EU] Induction: The act or process of inducing or causing to occur, especially the production of a specific morphogenetic effect in the developing embryo through the influence of evocators or organizers, or the production of anaesthesia or unconsciousness by use of appropriate agents. [EU] Inflammation: A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH] Insulin: A protein hormone secreted by beta cells of the pancreas. Insulin plays a major role in the regulation of glucose metabolism, generally promoting the cellular utilization of glucose. It is also an important regulator of protein and lipid metabolism. Insulin is used as a drug to control insulindependent diabetes mellitus. [NIH] Ischemia: Deficiency of blood in a part, due to functional constriction or actual obstruction of a blood vessel. [EU] Jejunum: That portion of the small intestine which extends from the duodenum to the ileum; called also intestinum jejunum. [EU] Lipid: Any of a heterogeneous group of flats and fatlike substances characterized by being water-insoluble and being extractable by nonpolar (or fat) solvents such as alcohol, ether, chloroform, benzene, etc. All contain as a major constituent aliphatic hydrocarbons. The lipids, which are easily stored in the body, serve as a source of fuel, are an important constituent of cell structure, and serve other biological functions. Lipids may be considered to include fatty acids, neutral fats, waxes, and steroids. Compound lipids comprise the glycolipids, lipoproteins, and phospholipids. [EU] Lymphocytic: Pertaining to, characterized by, or of the nature of lymphocytes. [EU] Metaplasia: The change in the type of adult cells in a tissue to a form which
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is not formal for that tissue. [EU] Micronutrients: Essential dietary elements or organic compounds that are required in only small quantities for normal physiologic processes to occur. [NIH]
Nausea: An unpleasant sensation, vaguely referred to the epigastrium and abdomen, and often culminating in vomiting. [EU] Necrosis: The sum of the morphological changes indicative of cell death and caused by the progressive degradative action of enzymes; it may affect groups of cells or part of a structure or an organ. [EU] Nephropathy: Disease of the kidneys. [EU] Nephrotic: Pertaining to, resembling, or caused by nephrosis. [EU] Neutrophil: Having an affinity for neutral dyes. [EU] Oral: Pertaining to the mouth, taken through or applied in the mouth, as an oral medication or an oral thermometer. [EU] Osteomalacia: A condition marked by softening of the bones (due to impaired mineralization, with excess accumulation of osteoid), with pain, tenderness, muscular weakness, anorexia, and loss of weight, resulting from deficiency of vitamin D and calcium. [EU] Oxidation: The act of oxidizing or state of being oxidized. Chemically it consists in the increase of positive charges on an atom or the loss of negative charges. Most biological oxidations are accomplished by the removal of a pair of hydrogen atoms (dehydrogenation) from a molecule. Such oxidations must be accompanied by reduction of an acceptor molecule. Univalent o. indicates loss of one electron; divalent o., the loss of two electrons. [EU] Pancreas: An organ behind the lower part of the stomach that is about the size of a hand. It makes insulin so that the body can use glucose (sugar) for energy. It also makes enzymes that help the body digest food. Spread all over the pancreas are areas called the islets of Langerhans. The cells in these areas each have a special purpose. The alpha cells make glucagon, which raises the level of glucose in the blood; the beta cells make insulin; the delta cells make somatostatin. There are also the PP cells and the D1 cells, about which little is known. [NIH] Panniculitis: An inflammatory reaction of the subcutaneous fat, which may involve the connective tissue septa between the fat lobes, the septa lobules and vessels, or the fat lobules, characterized by the development of single or multiple cutaneous nodules. [EU] Pathologic: 1. indicative of or caused by a morbid condition. 2. pertaining to pathology (= branch of medicine that treats the essential nature of the disease, especially the structural and functional changes in tissues and organs of the body caused by the disease). [EU]
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Pediatrics: A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence. [NIH] Physiologic: Normal; not pathologic; characteristic of or conforming to the normal functioning or state of the body or a tissue or organ; physiological. [EU]
Polymorphic: Occurring in several or many forms; appearing in different forms at different stages of development. [EU] Psychology: The science dealing with the study of mental processes and behavior in man and animals. [NIH] Pyelonephritis: Inflammation of the kidney and its pelvis, beginning in the interstitium and rapidly extending to involve the tubules, glomeruli, and blood vessels; due to bacterial infection. [EU] Receptor: 1. a molecular structure within a cell or on the surface characterized by (1) selective binding of a specific substance and (2) a specific physiologic effect that accompanies the binding, e.g., cell-surface receptors for peptide hormones, neurotransmitters, antigens, complement fragments, and immunoglobulins and cytoplasmic receptors for steroid hormones. 2. a sensory nerve terminal that responds to stimuli of various kinds. [EU] Salmonella: A genus of gram-negative, facultatively anaerobic, rod-shaped bacteria that utilizes citrate as a sole carbon source. It is pathogenic for humans, causing enteric fevers, gastroenteritis, and bacteremia. Food poisoning is the most common clinical manifestation. Organisms within this genus are separated on the basis of antigenic characteristics, sugar fermentation patterns, and bacteriophage susceptibility. [NIH] Sclerosis: A induration, or hardening; especially hardening of a part from inflammation and in diseases of the interstitial substance. The term is used chiefly for such a hardening of the nervous system due to hyperplasia of the connective tissue or to designate hardening of the blood vessels. [EU] Secretion: 1. the process of elaborating a specific product as a result of the activity of a gland; this activity may range from separating a specific substance of the blood to the elaboration of a new chemical substance. 2. any substance produced by secretion. [EU] Serology: The study of serum, especially of antigen-antibody reactions in vitro. [NIH] Spondylitis: Inflammation of the vertebrae. [EU] Swainsonine: An indolizidine alkaloid from the plant Swainsona canescens that is a potent alpha-mannosidase inhibitor. Swainsonine also exhibits antimetastatic, antiproliferative, and immunomodulatory activity. [NIH] Titre: The quantity of a substance required to produce a reaction with a
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given volume of another substance, or the amount of one substance required to correspond with a given amount of another substance. [EU] Transplantation: The grafting of tissues taken from the patient's own body or from another. [EU] Urinary: Pertaining to the urine; containing or secreting urine. [EU] Withdrawal: 1. a pathological retreat from interpersonal contact and social involvement, as may occur in schizophrenia, depression, or schizoid avoidant and schizotypal personality disorders. 2. (DSM III-R) a substancespecific organic brain syndrome that follows the cessation of use or reduction in intake of a psychoactive substance that had been regularly used to induce a state of intoxication. [EU] Yersinia: A genus of gram-negative, facultatively anaerobic rod- to coccobacillus-shaped bacteria that occurs in a broad spectrum of habitats. [NIH]
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CHAPTER 5. PATENTS ON CELIAC DISEASE Overview You can learn about innovations relating to celiac disease by reading recent patents and patent applications. Patents can be physical innovations (e.g. chemicals, pharmaceuticals, medical equipment) or processes (e.g. treatments or diagnostic procedures). The United States Patent and Trademark Office defines a patent as a grant of a property right to the inventor, issued by the Patent and Trademark Office.29 Patents, therefore, are intellectual property. For the United States, the term of a new patent is 20 years from the date when the patent application was filed. If the inventor wishes to receive economic benefits, it is likely that the invention will become commercially available to patients with celiac disease within 20 years of the initial filing. It is important to understand, therefore, that an inventor’s patent does not indicate that a product or service is or will be commercially available to patients with celiac disease. The patent implies only that the inventor has “the right to exclude others from making, using, offering for sale, or selling” the invention in the United States. While this relates to U.S. patents, similar rules govern foreign patents. In this chapter, we show you how to locate information on patents and their inventors. If you find a patent that is particularly interesting to you, contact the inventor or the assignee for further information.
Adapted from The U. S. Patent and Trademark Office: http://www.uspto.gov/web/offices/pac/doc/general/whatis.htm.
29
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Patents on Celiac Disease By performing a patent search focusing on celiac disease, you can obtain information such as the title of the invention, the names of the inventor(s), the assignee(s) or the company that owns or controls the patent, a short abstract that summarizes the patent, and a few excerpts from the description of the patent. The abstract of a patent tends to be more technical in nature, while the description is often written for the public. Full patent descriptions contain much more information than is presented here (e.g. claims, references, figures, diagrams, etc.). We will tell you how to obtain this information later in the chapter. The following is an example of the type of information that you can expect to obtain from a patent search on celiac disease: ·
Method for treating celiac disease Inventor(s): Cavazza; Claudio (Rome, IT), Mosconi; Luigi (Rome, IT) Assignee(s): Sigma-Tau Industrie Farmaceutiche Riunite S.p.A. (Rome, IT) Patent Number: 6,348,495 Date filed: July 26, 2000 Abstract: A method for treating celiac disease comprising administration of a composition containing an alkanoyl L-carnitine wherein the alkanoyl group is straight or branched and has 2-6 carbon atoms and the pharmacologically acceptable salts thereof. Excerpt(s): The present invention relates to a new therapeutic use of the lower alkanoyl L-carnitines and their pharmacologically acceptable salts to produce pharmaceutical compositions for the treatment of chronic intestinal disorders, in particular inflammatory bowel diseases, more particularly, ulcerative colitis or celiac disease. ... Celiac disease (or celiac syndrome) is a chronic intestinal disorder caused by a specific intolerance to gluten present in wheat, rye, barley and oats proteins included in the diet leading to dramatic changes in the small intestinal mucosa and subsequent impaired absorption. The celiac syndrome can affect genetically susceptible subjects (around 3.Salinity.). Symptoms comprise diarrhoea and other malabsorption symptoms, including total atrophy of intestinal mucosa. ... Current treatment is effected by a well balanced gluten-gliadin-free diet high in calories and proteins and normal in fat. This excludes cereal grains with the exception of rice and corn. Patients affected by celiac disease not responding to gluten-gliadin-free diet are treated with glucocorticoid steroids. For example U.S. Pat. No. 4,958,418, assigned to Glaxo Group Limited, teaches the use of fluticasone
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dipropionate, an anti-inflammatory steroid, This patent clearly establishes that celiac disease, ulcerative colitis and Crohn's disease are all embedded in the category of bowel diseases which respond to treatment of glucocorticoid steroids. Web site: http://www.delphion.com/details?pn=US06348495__
Patent Applications on Celiac Disease As of December 2000, U.S. patent applications are open to public viewing.30 Applications are patent requests which have yet to be granted (the process to achieve a patent can take several years).
Keeping Current In order to stay informed about patents and patent applications dealing with celiac disease, you can access the U.S. Patent Office archive via the Internet at no cost to you. This archive is available at the following Web address: http://www.uspto.gov/main/patents.htm. Under “Services,” click on “Search Patents.” You will see two broad options: (1) Patent Grants, and (2) Patent Applications. To see a list of granted patents, perform the following steps: Under “Patent Grants,” click “Quick Search.” Then, type “celiac disease” (or synonyms) into the “Term 1” box. After clicking on the search button, scroll down to see the various patents which have been granted to date on celiac disease. You can also use this procedure to view pending patent applications concerning celiac disease. Simply go back to the following Web address: http://www.uspto.gov/main/patents.htm. Under “Services,” click on “Search Patents.” Select “Quick Search” under “Patent Applications.” Then proceed with the steps listed above.
Vocabulary Builder Atrophy: A wasting away; a diminution in the size of a cell, tissue, organ, or part. [EU] Carnitine: Constituent of striated muscle and liver. It is used therapeutically to stimulate gastric and pancreatic secretions and in the treatment of hyperlipoproteinemias. [NIH] 30
This has been a common practice outside the United States prior to December 2000.
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Diarrhoea: Abnormal frequency and liquidity of faecal discharges. [EU] Steroid: A group name for lipids that contain a hydrogenated cyclopentanoperhydrophenanthrene ring system. Some of the substances included in this group are progesterone, adrenocortical hormones, the gonadal hormones, cardiac aglycones, bile acids, sterols (such as cholesterol), toad poisons, saponins, and some of the carcinogenic hydrocarbons. [EU]
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CHAPTER 6. BOOKS ON CELIAC DISEASE Overview This chapter provides bibliographic book references relating to celiac disease. You have many options to locate books on celiac disease. The simplest method is to go to your local bookseller and inquire about titles that they have in stock or can special order for you. Some patients, however, feel uncomfortable approaching their local booksellers and prefer online sources (e.g. www.amazon.com and www.bn.com). In addition to online booksellers, excellent sources for book titles on celiac disease include the Combined Health Information Database and the National Library of Medicine. Once you have found a title that interests you, visit your local public or medical library to see if it is available for loan.
Book Summaries: Federal Agencies The Combined Health Information Database collects various book abstracts from a variety of healthcare institutions and federal agencies. To access these summaries, go to http://chid.nih.gov/detail/detail.html. You will need to use the “Detailed Search” option. To find book summaries, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer. For the format option, select “Monograph/Book.” Now type “celiac disease” (or synonyms) into the “For these words:” box. You will only receive results on books. You should check back periodically with this database which is updated every 3 months. The following is a typical result when searching for books on celiac disease:
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·
Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten-Free Children Source: Bethesda, MD: Woodbine House. 2001. 252 p. Contact: Available from Woodbine House. 6510 Bells Mill Road, Bethesda, MD 20817. (800) 843-7323 or (301) 897-3570. Fax (301) 897-5838. E-mail:
[email protected]. Website: www.woodbinehouse.com. Price: $17.95 plus shipping and handling. ISBN: 1890627216. Summary: This book is a practical survival guide for families of children and teenagers with celiac disease, a lifelong digestive disorder that affects nearly two million Americans. Celiac disease results from an intolerance of gluten, a protein found in wheat, rye, barley, and oats, and any food made with these grains. Removing gluten from the diet is the only known treatment for this illness. Left untreated, the disease can lead to serious conditions such as damage to the central nervous system, osteoporosis, and cancer. The book offers detailed advice and concrete strategies to help a child with celiac disease remain gluten free and cope with this disease. The book includes 25 chapters that cover what it is like to be a kid with celiac disease (written by a patient, age 11), a definition and description of celiac disease, emotions, what to do immediately after diagnosis, the importance of a healthy attitude toward any disease, determining if the entire family should be gluten free, talking with children about celiac disease, giving the child control of her diet, dealing with family and friends, kitchen tips, shopping suggestions, menu and snack ideas, the role of junk food, caregivers and school settings, special occasions, restaurants, traveling gluten free, intentional and accidental gluten ingestion, celiac teens, the causes of celiac disease, diagnostic tests, nutrition basics, family emotions, and legal rights and benefits. The book concludes with an appendix offering a quick start diet guide for celiac disease, an extensive resource guide, a glossary of terms, and a subject index. The book is illustrated with black and white photographs of children and families in all kinds of different activities.
·
Pediatric Gastrointestinal Disease. 2nd ed Source: Philadelphia, PA: W.B. Saunders Company. 1999. 823 p. Contact: Available from W.B. Saunders Company. Book Order Fulfillment Department, 11830 Westline Industrial Drive, Saint Louis, MO 63146-9988. (800) 545-2522 or (314) 453-7010. Fax (800) 568-5136 or (314) 453-7095. E-mail:
[email protected]. Website: customerservice.wbsaunders.com. Price: $155.00 plus shipping and handling. ISBN: 0721674615.
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Summary: This medical textbook covers all facets of clinical pediatric gastrointestinal disease. The text emphasizes a clinical focus and incorporates anatomy and physiology considerations into each chapter rather than a separate section. The book is organized into distinct sections, starting with the common clinical problems and followed by organ specific diseases. General chapters on clinical problems cover chronic abdominal pain of childhood and adolescence, vomiting, diarrhea, constipation and encopresis (fecal soiling), failure to thrive, gastrointestinal hemorrhage, eating disorders and obesity, jaundice, ascites, caustic ingestion and foreign bodies, abdominal masses in pediatric patients, and abdominal surgical emergencies. Sections on diseases of the esophagus, stomach, and the small and large bowel (intestine) are followed by chapters reviewing the clinical facets of pediatric liver disease. Specific chapters include gastrointestinal reflux, achalasia and other motor disorders, congenital anomalies, gastric motility disorders, bezoars (a mass of food, hair or other components found in the stomach or intestine), maldigestion and malabsorption, celiac disease, short bowel syndrome, enteric parasites, Crohn's disease, ulcerative colitis, polyps, appendicitis, hernia, Hirschsprung's disease, neoplasms (cancerous and noncancerous), hepatitis, gallbladder diseases, and liver transplantation. The last two sections review diseases of the pancreas and basic nutrition in children, including pancreatitis, cystic fibrosis, nutritional assessment, parenteral (outside the digestive system, for example, intravenous nutrition) and enteral nutrition, and the management of diarrhea. Each chapter offers black and white photographs and figures and concludes with extensive references. A detailed subject index concludes the text. ·
Canadian Celiac Association Handbook: Celiac Diseases Needs a Diet for Life. 3rd ed Source: Ontario, Canada: Canadian Celiac Association. 1993. 128 p. Contact: Available from Canadian Celiac Association. 6519B Mississauga Road, Mississauga, Ontario L5N 1A6. (905) 567-7195 or (800) 363-7296. Fax: (905) 567-0710. Price: Out Of Print. ISBN: 0921026080. Summary: This handbook presents an overview of the changes in lifestyle that may be necessary for people with celiac disease. Topics include the medical aspects of celiac disease and dermatitis herpetiformis; foods for people with these diseases; coping with the new lifestyle; and children with celiac. The remainder of the book presents information about diet and nutrition, with gluten-free recipes for soups, entrees, breads and batters, pies, muffins, cookies and squares, unbaked cookies and squares, and cakes and frostings. Also included is the contact information for
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Canadian regional celiac associations, as well as a few advertisements for the producers of gluten-free products. ·
Understanding Indigestion and Other Tummy Troubles Source: Woollahra, New South Wales, Australia: Health Books, Gore and Osment Publications. 1993. 64 p. Contact: Available from Health Books, Gore and Osment Publications, Private Box 427, 150 Queen Street, Woollahra, NSW 2025, Australia. (02) 361-5244. Fax (02) 360-7558. Price: $9.95 (as of 1995). ISBN: 187553136X. Summary: This book presents basic information on the causes and treatments of common stomach and digestive tract ailments. After an introductory section that reviews the anatomy and physiology of the gastrointestinal (GI) tract, the book features nine chapters on the following topics: indigestion; ulcers; food poisoning and other causes of upset stomachs and diarrhea; irritable bowel syndrome (IBS); inflammatory bowel disease (IBD); dealing with diverticular disease; bowel cancer; other GI problems, including hiccups, gas, hepatitis, food allergies, appendicitis, and sexually transmitted diseases of the bowel; and children's GI problems, including colic, food intolerance, gastroenteritis, reflux, celiac disease, constipation, IBS, IBD, polyps, and phantom pains. The book is written in clear, easy-to-understand language and focuses on practical, self-care tips for many of the disorders covered.
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Evidence Based Gastroenterology and Hepatology Source: London, UK: BMJ Publishing Group. 1999. 557 p. Contact: Available from BMJ Publishing Group. BMA Books, BMA House, Tavistock Square, London WCIH 9JR. Fax 44 (0)20 7383 6402. Email:
[email protected]. Website: www.bmjbooks.com. Price: Contact publisher for price. ISBN: 0727911821. Summary: This book emphasizes the approaches of evidence based medicine in gastroenterology (the study of the gastrointestinal tract and gastrointestinal diseases) and hepatology (the study of the liver and liver diseases). The authors use clinical epidemiology to present the strongest and most current evidence for interventions for the major diseases of the gastrointestinal tract and liver. Thirty chapters are included: an introduction to evidence based gastroenterology and hepatology; gastroesophageal reflux disease (GERD); ulcer disease and Helicobacter pylori; ulcer disease and nonsteroidal antiinflammatory drugs; treatment options for non-variceal gastrointestinal hemorrhage; the diagnosis and treatment of functional dyspepsia (indigestion); the diagnosis, treatment,
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and prognosis of celiac disease (gluten intolerance); the treatment of Crohn's disease; the diagnosis, prognosis, and treatment of ulcerative colitis (UC); pouchitis after restorative proctocolectomy; metabolic bone disease in gastrointestinal disorders; colorectal cancer in UC and the role of surveillance; population based screening and surveillance for colorectal cancer; irritable bowel syndrome (IBS); the surgical treatment of gallstone disease; the prognosis and treatment of acute pancreatitis; hepatitis C; hepatitis B; the screening and treatment of alcoholic liver disease; hemochromatosis and Wilson disease; primary biliary cirrhosis (PBC); autoimmune hepatitis; primary sclerosing cholangitis (PSC); the prevention and treatment of portal hypertensive bleeding; ascites, hepatorenal syndrome, and spontaneous bacterial peritonitis; hepatic encephalopathy; hepatocellular carcinoma; fulminant hepatic failure; the prevention and treatment of rejection after liver transplantation; and the prevention and treatment of infection after liver transplantation. Each chapter features the grading of recommendations and levels of evidence used by the authors to note the research basis on which their clinical guidelines are formed. Chapters conclude with extensive reference lists; the text concludes with a subject index. A glossary of acronyms is also provided. ·
Gastroenterology and Hepatology: The Comprehensive Visual Reference. Volume 3: Stomach and Duodenum Source: Philadelphia, PA: Current Medicine. 1996. [200 p.]. Contact: Available from Current Medicine. 400 Market Street, Suite 700, Philadelphia, PA 19106. (800) 427-1796 or (215) 574-2266. Fax (215) 5742270. E-mail:
[email protected]. Website: current-medicine.com. Price: $125.00 plus shipping and handling. ISBN: 0443078432. Summary: This atlas is one in an 8-volume collection of images that pictorially displays the gastrointestinal tract, liver, biliary tree, and pancreas in health and disease, both in children and adults. This volume includes 12 chapters on the stomach and duodenum, each written by experts in their respective fields. The first chapter reviews the current concepts of regulation of gastric acid secretion; the second chapter reviews the complex endocrinology of the stomach and duodenum. Chapter 3 presents a pictorial of the gastrointestinal immune system, covering the basic science of gut immunology and using the examples of H. pylori gastritis and celiac sprue as examples of immunopathic disorders of the stomach and duodenum, respectively. Chapters 4 to 8 summarize in some detail the current concepts and risk factors for ulcerative and inflammatory diseases of the stomach and duodenum. Chapter 9 covers bleeding lesions of the stomach and duodenum, both
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benign and malignant. Chapter 10 illustrates the many types of neoplasms of the stomach and duodenum with emphasis on gastric adenocarcinoma; Chapter 11 depicts the various surgical procedures on the stomach and duodenum available for the treatment of benign and malignant disorders, including morbid obesity. The volume concludes with a chapter on the dermatologic manifestations of gastrointestinal diseases as well as cutaneous lesions that, when present, are markers for disease of the gastrointestinal tract, liver, biliary tree, or pancreas. The format of the atlas is visual images supported by relatively brief text. Tables, charts, diagrams, and photomicrographs are used extensively.
Book Summaries: Online Booksellers Commercial Internet-based booksellers, such as Amazon.com and Barnes & Noble.com, offer summaries which have been supplied by each title’s publisher. Some summaries also include customer reviews. Your local bookseller may have access to in-house and commercial databases that index all published books (e.g. Books in PrintÒ). The following have been recently listed with online booksellers as relating to celiac disease (sorted alphabetically by title; follow the hyperlink to view more details at Amazon.com): ·
Biochemical and clinical aspects of peptide and amino acid [acid] absorption: with 14 tables Conference on Biochem. and Clin. Aspects of Peptide and Amino Acid Absorption, held in Oct. 8, 9 an 10, 1972, Titisee, Black Forest, Germany ; ISBN: 3794503643; http://www.amazon.com/exec/obidos/ASIN/3794503643/icongroupin terna
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Can a Gluten-Free Diet Help? How? by Lloyd Rosenvold; ISBN: 0879835389; http://www.amazon.com/exec/obidos/ASIN/0879835389/icongroupin terna
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Celiac Disease: Me & the Right Food Choices: A Coloring-Activity & Instructional Guide by Nancy P. Falini (1998); ISBN: 1552374882; http://www.amazon.com/exec/obidos/ASIN/1552374882/icongroupin terna
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Celiac Disease: Methods and Protocols (Methods in Molecular Medicine, 41) by Michael N. Marsh (Editor) (2000); ISBN: 0896036502; http://www.amazon.com/exec/obidos/ASIN/0896036502/icongroupin terna
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Coeliac Disease by W.T. and Holmes, G.K.T. Cooke (1984); ISBN: 0443028273; http://www.amazon.com/exec/obidos/ASIN/0443028273/icongroupin terna
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Coeliac Disease: 40 Years Gluten-Free (Developments in Gastroenterology, Vol 13) by M.L. Mearin, C.J.J. Mulder (1991); ISBN: 0792311604; http://www.amazon.com/exec/obidos/ASIN/0792311604/icongroupin terna
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Coeliac disease: proceedings of an international conference held at the Royal Postgraduate Medical School, London, 1969 ; ISBN: 0443007969; http://www.amazon.com/exec/obidos/ASIN/0443007969/icongroupin terna
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Common Food Intolerances 1: Epidemiology of Coeliac Disease (Dynamic Nutrition Research, Vol 2) by S. Auricchio, J. Visakorpi (Editor) (1992); ISBN: 3805556160; http://www.amazon.com/exec/obidos/ASIN/3805556160/icongroupin terna
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Coping With Celiac, The Great Masquerader by Aileen M. Bennett; ISBN: 0966535308; http://www.amazon.com/exec/obidos/ASIN/0966535308/icongroupin terna
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Coping With the Gluten Free Diet by Marion N. Wood (1982); ISBN: 0398047189; http://www.amazon.com/exec/obidos/ASIN/0398047189/icongroupin terna
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Dangerous Grains: Why Gluten Cereal Grains May Be Hazardous to Your Health by James Braly M.D., Ron Hoggan M.A. (2002); ISBN: 1583331298; http://www.amazon.com/exec/obidos/ASIN/1583331298/icongroupin terna
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Food, Nutrition, and Evolution: Food As an Environmental Factor in the Genesis of Human Variability by Walcher (1981); ISBN: 0893521582; http://www.amazon.com/exec/obidos/ASIN/0893521582/icongroupin terna
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Gluten free and good! by Margaret Powers; ISBN: 0961014008; http://www.amazon.com/exec/obidos/ASIN/0961014008/icongroupin terna
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Gluten-Sensitive Enteropathy (Frontiers of Gastrointestinal Research, No 19) by D. Branski (Editor), et al (1991); ISBN: 3805553315;
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http://www.amazon.com/exec/obidos/ASIN/3805553315/icongroupin terna ·
Incredible Edible Gluten-Free Food for Kids: 150 Family-Tested Recipes by Sheri L. Sanderson (2002); ISBN: 1890627283; http://www.amazon.com/exec/obidos/ASIN/1890627283/icongroupin terna
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Kids with Celiac Disease : A Family Guide to Raising Happy, Healthy, Gluten-Free Children by Danna Korn (2001); ISBN: 1890627216; http://www.amazon.com/exec/obidos/ASIN/1890627216/icongroupin terna
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Serologic Diagnosis of Celiac Disease by Tadeusz P. Chorzelski, et al (1990); ISBN: 0849354366; http://www.amazon.com/exec/obidos/ASIN/0849354366/icongroupin terna
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The Genetics of coeliac disease ; ISBN: 0852003633; http://www.amazon.com/exec/obidos/ASIN/0852003633/icongroupin terna
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Wheat-Free, Gluten-Free: 200 Delicious Dishes to Make Eating a Pleasure by Michelle Berriedale-Johnson, Stefano Guandilini (2003); ISBN: 1572840455; http://www.amazon.com/exec/obidos/ASIN/1572840455/icongroupin terna
The National Library of Medicine Book Index The National Library of Medicine at the National Institutes of Health has a massive database of books published on healthcare and biomedicine. Go to the following Internet site, http://locatorplus.gov/, and then select “Search LOCATORplus.” Once you are in the search area, simply type “celiac disease” (or synonyms) into the search box, and select “books only.” From there, results can be sorted by publication date, author, or relevance. The following was recently catalogued by the National Library of Medicine:31 In addition to LOCATORPlus, in collaboration with authors and publishers, the National Center for Biotechnology Information (NCBI) is adapting biomedical books for the Web. The books may be accessed in two ways: (1) by searching directly using any search term or phrase (in the same way as the bibliographic database PubMed), or (2) by following the links to PubMed abstracts. Each PubMed abstract has a “Books” button that displays a facsimile of the abstract in which some phrases are hypertext links. These phrases are also found in the books available at NCBI. Click on hyperlinked results in the list of books in which the phrase is found. Currently, the majority of the links are between the books and PubMed. In the future, more links will be created between the books and other types of
31
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Anemia of nontropical sprue and chronic ulcerative colitis studied with radioiron and radiochromium. Author: Giuliani, Emilio R. (Emilio Romolo), 1927-; Year: 1962; [Minneapolis] 1962
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Celiac disease: methods and protocols. Author: edited by Michael N. Marsh; Year: 2000; Totowa, N.J.: Humana Press, 2000; ISBN: 0896036520 (alk. paper)
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Celiac disease nutrition guide. Author: Tricia Thompson, Merri Lou Dobler; Year: 2002; Chicago: American Dietetic Association, 2002; ISBN: 0880913061
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Celiac disease; recipes for parents and patients. Author: Toronto. Hospital for Sick Children; Year: 1968; [Toronto, 1968]
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Cholesterol metabolism in adult coeliac disease. Author: by Matti Vuoristo; Year: 1979; Helsinki: [s.n.], 1979; ISBN: 9519920579
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Coeliac disease: 40 years gluten-free. Author: edited by M.L. Mearin and C.J.J. Mulder; Year: 1991; Dordrecht; Boston: Kluwer Academic Publishers, c1991; ISBN: 0792311604 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0792311604/icongroupin terna
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Coeliac disease: proceedings of the Seventh International Symposium on Coeliac Disease, September 5-7, 1996, Tampere, Finland. Author: edited by Markku Mäki, Pekka Collin, J.K. Visalorpi; Year: 1997; Tampere: Coeliac <STRONG>
Disease Study Group, c1997; ISBN: 9514442938
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Coeliac disease. Author: W.T. Cooke, G.K.T. Holmes; Year: 1984; Edinburgh; New York: Churchill Livingstone, 1984; ISBN: 0443028273 http://www.amazon.com/exec/obidos/ASIN/0443028273/icongroupin terna
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Coeliac disease; proceedings of the second International Coeliac Symposium. Edited by W. Th. J. M. Hekkens and A. S. Peña. Author: International Coeliac Symposium (2d: 1974: Noordwijkerhout, Netherlands); Year: 1974; Leiden, Stenfert Kroese, 1974
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Coeliac disease; proceedings. Edited by C. C. Booth and R. H. Dowling. Author: International Conference on Coeliac Disease (1st: 1969: Royal Postgraduate Medical School); Year: 1970; Edinburgh, Livingstone, 1970; ISBN: 0443007969 http://www.amazon.com/exec/obidos/ASIN/0443007969/icongroupin terna
information, such as gene and protein sequences and macromolecular structures. See http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Books.
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Common food intolerances 1: epidemiology of coeliac disease. Author: 1st International Symposium on Common Food Intolerances-Epidemioloical, Genetic, and Nutritional Aspects, Capri, October 11-12, 1991; volume editors, S. Auricchio, J.K. Visakorpi; Year: 1992; Basel; New York: Karger, 1992; ISBN: 3805556160 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/3805556160/icongroupin terna
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Epilepsy and other neurological disorders in coeliac disease. Author: edited by Guiseppe Gobbi ... [et al.]; Year: 1997; London: John Libbey, c1997; ISBN: 086196537X http://www.amazon.com/exec/obidos/ASIN/086196537X/icongroupi nterna
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Genetics of coeliac diseases. Author: edited by R.B. McConnell; Year: 1981; Lancaster [Lancashire]; Boston: MTP Press, 1981; ISBN: 0852003633 http://www.amazon.com/exec/obidos/ASIN/0852003633/icongroupin terna
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Gluten intolerance: a resource including recipes. Author: Beaudette, Therese; Year: 1985; Chicago: American Dietetic Association, c1985; ISBN: 0880910135 (pbk.)
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Gluten-sensitive enteropathy. Author: volume editors, D. Branski, P. Rozen, M.F. Kagnoff; Year: 1992; Basel; New York: Karger, 1992; ISBN: 3805553315 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/3805553315/icongroupin terna
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Inflammatory bowel disease and coeliac disease in children: proceedings of the International Falk Symposium on Pediatric and Surgical Gastroenterology held in Basel, Switzerland, November 10-11, 1989. Author: edited by F. Hadziselimovic, B. Herzog, A. Bürgin-W; Year: 1990; Dordrecht; Boston: Kluwer Academic Publishers, c1990; ISBN: 0746201257 http://www.amazon.com/exec/obidos/ASIN/0746201257/icongroupin terna
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International nutrition in health and disease. Author: volume editor, Geoffrey H. Bourne; Year: 1987; Basel; New York: Karger, c1987; ISBN: 3805545819 http://www.amazon.com/exec/obidos/ASIN/3805545819/icongroupin terna
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Malabsorption in coeliac sprue. Author: O. J. J. Cluysenaer and J. H. M. van Tongeren; Year: 1977; The Hague: Nijhoff Medical Division, 1977; ISBN: 9024720001
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http://www.amazon.com/exec/obidos/ASIN/9024720001/icongroupin terna ·
Malabsorption syndrome; contributions to the symposium by members of the staff of the Mount Sinai Hospital, New York ... Author: Adlersberg, David; Year: 1957; New York, Grune & Stratton, 1957
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Malignancy and chronic inflammation in the gastrointestinal tract: new concepts: proceedings of the 81st Falk Symposium, held in Berlin, Germany, November 3-5, 1994. Author: Falk Symposium 81; edited by E.O. Riecken ... [et al.]; Year: 1995; Dordrecht; Boston: Kluwer Academic Publishers, c1995; ISBN: 0792388895 (cloth bound: alk. paper) http://www.amazon.com/exec/obidos/ASIN/0792388895/icongroupin terna
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Management of celiac disease, by Sidney Valentine Haas and Merrill Patterson Haas. Author: Haas, Sidney Valentine, 1870-; Year: 1951; Philadelphia, Lippincott [c1951]
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Non-tropical sprue; a study in Idiopathic steatorrhoea. Author: Thaysen, Thorvald Einar Hess, 1883-; Year: 1932; Copenhagen, Levin & Munksgaard, 1932
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Perspectives in coeliac disease: proceedings ... Author: edited by B. McNicholl, C. F. McCarthy, and P. F. Fottrell; Year: 1978; Lancaster, Eng.: MTP Press, c1978; ISBN: 0852002246
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Proceedings [ed. by W. H. Meroney]. Author: Conference on Tropical Anemia and Intestinal Malabsorption (1960: San Juan, P. R.); Year: 1960; San Juan, U. S. Army Tropical Research Medical Laboratory [1960]
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Serologic diagnosis of celiac disease. Author: editors, Tadeusz P. Chorzelski ... [et al.]; Year: 1990; Boca Raton: CRC Press, c1990; ISBN: 0849354366 http://www.amazon.com/exec/obidos/ASIN/0849354366/icongroupin terna
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Sprue; its diagnosis and treatment, 1887-1912. Author: Begg, Charles; Year: 1926; Bristol, Wright, 1926
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Studies on coeliac disease in adults: with special reference to the diagnosis of villous atrophy. Author: by Rolf Gillberg; Year: 1981; Göteborg: [s.n.], 1981; ISBN: 917222374X
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Studies on idiopathic non-tropical sprue: the familial occurrence of sprue; relationship between sprue and megaloblastic anaemia of pregnancy and puerperium; the significance of partial gastrectomy for manifestation of symptoms. Author: Ek, Börje; Year: 1970; Stockholm, Distributed by Almqvist & Wiksell [1970]
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Tropical sprue; studies of the U. S. Army's Sprue Team in Puerto Rico. Author: Crosby, William H. (William Holmes), 1914-; Year: 1958; Washington, Walter Reed Army Medical Center [1958]
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World literature on sprue. Author: Ashford, Bailey Kelly, 1873-1934; Year: 1922; Mayaguez, P. R., 1922
Chapters on Celiac Disease Frequently, celiac disease will be discussed within a book, perhaps within a specific chapter. In order to find chapters that are specifically dealing with celiac disease, an excellent source of abstracts is the Combined Health Information Database. You will need to limit your search to book chapters and celiac disease using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find book chapters, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Book Chapter.” By making these selections and typing in “celiac disease” (or synonyms) into the “For these words:” box, you will only receive results on chapters in books. The following is a typical result when searching for book chapters on celiac disease: ·
What It's Like to Be a Kid with Celiac Disease Source: in Korn, D. Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten-Free Children. Bethesda, MD: Woodbine House. 2001. p. 1-2. Contact: Available from Woodbine House. 6510 Bells Mill Road, Bethesda, MD 20817. (800) 843-7323 or (301) 897-3570. Fax (301) 897-5838. E-mail:
[email protected]. Website: www.woodbinehouse.com. Price: $17.95 plus shipping and handling. ISBN: 1890627216. Summary: This chapter serves as the introduction to a practical survival guide for families of children and teenagers with celiac disease, a lifelong digestive disorder that affects nearly two million Americans. Celiac disease results from an intolerance of gluten, a protein found in wheat, rye, barley, and oats, and any food made with these grains. Removing gluten from the diet is the only known treatment for this illness. This chapter is written by 11 year old Tyler Korn, who was diagnosed with celiac disease as a very young child. Tyler explains how his disease was diagnosed and how he copes with the limitations of his condition. He stresses that the disease does not have a great impact on his daily life, as he would prefer to focus on his favorite activities of baseball, other sports, and his friends. He suggests that parents of children diagnosed
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with celiac disease not 'freak out' and realize that kids with celiac disease can lead perfectly normal lives. Tyler also notes that it is important to him to read his own food labels and make his own food decisions; he briefly explains how he feels when he makes a food mistake (like he has the abdominal flu) and how he learns from those experiences. The chapter includes a photograph of Tyler on his motocross bike. 2 figures. ·
Talking to Your Children About Celiac Disease Source: in Korn, D. Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten-Free Children. Bethesda, MD: Woodbine House. 2001. p. 25-33. Contact: Available from Woodbine House. 6510 Bells Mill Road, Bethesda, MD 20817. (800) 843-7323 or (301) 897-3570. Fax (301) 897-5838. E-mail:
[email protected]. Website: www.woodbinehouse.com. Price: $17.95 plus shipping and handling. ISBN: 1890627216. Summary: This chapter on communication is from a practical survival guide for families of children and teenagers with celiac disease, a lifelong digestive disorder that affects nearly two million Americans. Celiac disease results from an intolerance of gluten, a protein found in wheat, rye, barley, and oats, and any food made with these grains. Removing gluten from the diet is the only known treatment for this illness. Left untreated, the disease can lead to serious conditions such as damage to the central nervous system, osteoporosis, and cancer. In this chapter, the author emphasizes that communicating about celiac disease offers the child both an understanding and control of his or her diet, so the diet does not control the child's life. The author gives detailed suggestions about how to open a conversation with the child, and what to discuss with children of different age groups (ages 1 to 6, and approaches for older children). The author notes that talking with the child about celiac disease is an ongoing process, something discussed in different ways as the level of understanding (both child's and parents') grows and as the child experiences different issues revolving around food (including reactions to eating gluten). The author focuses on specific strategies, including reading food labels together, how to teach the child to say 'no thanks' to gluten containing foods, exchanging gluten free foods where appropriate, and the need for vast amounts of repetition to help the child incorporate gluten free habits into his or her lifestyle. The chapter concludes with a brief section on discussing celiac disease with siblings in the family. The chapter includes black and white photographs of children, and sidebars sharing quotations from parents.
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What Causes Celiac Disease? Source: in Korn, D. Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten-Free Children. Bethesda, MD: Woodbine House. 2001. p. 137-140. Contact: Available from Woodbine House. 6510 Bells Mill Road, Bethesda, MD 20817. (800) 843-7323 or (301) 897-3570. Fax (301) 897-5838. E-mail:
[email protected]. Website: www.woodbinehouse.com. Price: $17.95 plus shipping and handling. ISBN: 1890627216. Summary: This chapter on the causes (etiology) of celiac disease is from a practical survival guide for families of children and teenagers with celiac disease, a lifelong digestive disorder that affects nearly two million Americans. Celiac disease results from an intolerance of gluten, a protein found in wheat, rye, barley, and oats, and any food made with these grains. Removing gluten from the diet is the only known treatment for this illness. Left untreated, the disease can lead to serious conditions such as damage to the central nervous system, osteoporosis, and cancer. In this chapter, the author begins by exploring the genetic basis of celiac disease and noting that genetics alone do not explain all the incidence of the disease. It is not yet understood what triggers the required genetic tendency to acquire celiac disease. Regardless of what causes the disease, celiac disease is an autoimmune disorder in which the body produces immune reactions against itself, resulting in tissue injury. In people with celiac disease, T cells in the intestines respond specifically to something in gluten, mistaking gluten for a substance that needs to be eliminated from the body. The author emphasizes the celiac disease is not the same thing as an allergy and concludes by encouraging other family members who may be experiencing symptoms to be tested for celiac disease. The chapter includes black and white photographs of children, and sidebars sharing quotations from parents.
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Gastrointestinal System Source: in Kelly, R.B., ed. Family Health and Medical Guide. Dallas, TX: Word Publishing. 1996. p. 169-200. Contact: Available from American Academy of Family Physicians. 11400 Tomahawk Creek Parkway, Leawood, KS 66211-2672. (800) 274-2237. Website: www.aafp.org. Price: $30.00 for members; $35.00 for nonmembers; plus shipping and handling. ISBN: 0849908396. Summary: This chapter on the gastrointestinal system is from a family health and medical guide. The chapter first describes the anatomy and function of the gastrointestinal tract, including the mouth, esophagus, stomach, small intestine, pancreas, gallbladder, liver, and large intestine.
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The chapter then covers problems of the gastrointestinal system, such as anal abscesses, fissures, and itching; appendicitis; bowel blockage; carcinoid tumors; colon polyps; colorectal cancer; constipation; Crohn's disease; dehydration; diarrhea; diverticulosis and diverticulitis; esophageal cancer and varices; gas; gastroenteritis; heartburn; hemorrhoids; hernias (hiatal and inguinal); ileus; irritable bowel syndrome (IBS); malabsorption (including celiac disease, lactose intolerance, pernicious anemia, postsurgical malabsorption, and Whipple's disease); peritonitis; proctitis; stomach cancer; ulcers; ulcerative colitis; and vomiting. For each topic, the authors discuss symptoms, diagnostic tests, treatment options, and prevention. Numerous sidebars cover home remedies for constipation; symptoms of a serious bowel problem; ways to prevent dehydration in adults; the BRAT (bananas, rice, apples, toast) diet; ways to prevent esophageal cancer, gas, and heartburn; hiccups; and home remedies for irritable bowel, as well as when to call the doctor about nausea or vomiting. 10 figures. ·
Diarrhea [Self-Care Flowchart] Source: in Kelly, R.B., ed. Family Health and Medical Guide. Dallas, TX: Word Publishing. 1996. p. 516-517. Contact: Available from American Academy of Family Physicians. 11400 Tomahawk Creek Parkway, Leawood, KS 66211-2672. (800) 274-2237. Website: www.aafp.org. Price: $30.00 for members; $35.00 for nonmembers; plus shipping and handling. ISBN: 0849908396. Summary: Loose or watery bowel movements, sometimes with unusual color or consistency, create an uncomfortable condition that usually stops by itself. This self care flowchart on diarrhea is one in a series of such charts in a family health and medical guide. The chart offers a strategy for self diagnosis and care of the pain and difficulty of diarrhea, with the goal of determining whether or not the problem requires health care. The charts lists questions about symptoms, then provides a flowchart format for determining diagnosis and possible self care options. Symptoms listed are fever, nausea, abdominal pain, cramps and watery diarrhea, recent travel, recent drug therapy (antibiotics), frequent bowel movements with mucus, alternation between constipation and diarrhea, and chronic constipation. Conditions that may be responsible for the symptoms include gastroenteritis, intestinal obstruction, gallbladder or pancreas problems, food poisoning, bacterial or parasitic diarrhea (giardia), traveler's diarrhea, malabsorption, celiac disease, inflammatory bowel disease, irritable bowel syndrome, spastic colon, diverticulosis,
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diverticulitis, or fecal impaction. Many of the conditions list see your doctor under the self care strategies. ·
Protein-Modified Diets for Celiac Disease and Liver Disease Source: in Cataldo, C.B., DeBruyne, L.K., and Whitney, E.N. Nutrition and Diet Therapy: Principles and Practice. 4th ed. St. Paul, MN: West Publishing Company. 1995. p. 635-652. Contact: Available from West Publishing. 620 Opperman Drive, P.O. Box 64779, St. Paul, MN 55164. (800) 340-9378 or (612) 687-7000. Price: $58.25. ISBN: 0314044485. Summary: This chapter, from a text on nutrition and diet therapy, first examines gluten-restricted diets used to treat the malabsorption caused by celiac disease. The authors then describe protein-restricted diets used to treat liver disease, including fatty liver, hepatitis, and cirrhosis. The chapter concludes with an illustrative case study, a nutrition assessment section, and a section on inborn errors of metabolism. Also included are study questions and clinical application questions for readers to use in reviewing the material. 3 figures. 4 tables.
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What Is Celiac Disease? (And Nontropical Sprue, Dermatitis Herpetiformis, Gluten-Sensitive Enteropathy, and General Gluten Intolerance) Source: in Korn, D. Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten-Free Children. Bethesda, MD: Woodbine House. 2001. p. 3-8. Contact: Available from Woodbine House. 6510 Bells Mill Road, Bethesda, MD 20817. (800) 843-7323 or (301) 897-3570. Fax (301) 897-5838. E-mail:
[email protected]. Website: www.woodbinehouse.com. Price: $17.95 plus shipping and handling. ISBN: 1890627216. Summary: This chapter defining celiac disease is from a practical survival guide for families of children and teenagers with celiac disease, a lifelong digestive disorder that affects nearly two million Americans. Celiac disease results from an intolerance of gluten, a protein found in wheat, rye, barley, and oats, and any food made with these grains. Removing gluten from the diet is the only known treatment for this illness. Left untreated, the disease can lead to serious conditions such as damage to the central nervous system, osteoporosis, and cancer. The chapter begins by defining celiac disease and explaining how gluten damages the villi in the small intestine, resulting in malnutrition and dehydration. The symptoms tend to be varied, which lends to difficulties in diagnosing celiac disease. Classic symptoms include diarrhea, malabsorption, gas,
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and bloating; other symptoms can include fatigue, anemia, irritability, vomiting, short stature, or difficulty concentrating. Some people with celiac disease show absolutely no symptoms. The author notes that dermatitis herpetiformis is a 'sister' to celiac disease, with a subset of symptoms (primarily a very severe rash on the skin) that responds well to the gluten free diet. The author stresses that the good news about celiac disease is the fact that it is so treatable; a complete, strict gluten free diet will result in nearly immediate improvement. After a few weeks on the gluten free diet, most people feel better overall, as their malnutrition and dehydration resolve. ·
Sprue Syndromes Source: in Brandt, L., et al., eds. Clinical Practice of Gastroenterology. Volume One. Philadelphia, PA: Current Medicine. 1999. p. 484-493. Contact: Available from W.B. Saunders Company. Order Fulfillment, 6277 Sea Harbor Drive, Orlando, FL 32887. (800) 545-2522. Fax (800) 8746418 or (407) 352-3445. Website: www.wbsaunders.com. Price: $235.00 plus shipping and handling. ISBN: 0443065209 (two volume set); 0443065217 (volume 1); 0443065225 (volume 2). Summary: Celiac sprue is a disease of the small intestine resulting from a sensitivity to gluten, the water insoluble protein of wheat, and characterized by various degrees of villous atrophy (wasting of the villi of the small intestine) and malabsorption. Tropical sprue is an idiopathic disease of the small intestine that is acquired in tropical regions. Although the clinical and histologic findings superficially may resemble those of celiac sprue, treatment is different. This chapter on sprue syndromes is from a lengthy textbook that brings practitioners up to date on the complexities of gastroenterology practice, focusing on the essentials of patient care. Most patients with celiac sprue improve after withdrawal of gluten from their diets, but a few have a more complex course or develop one or more associated extraintestinal diseases. Celiac disease is characterized by poor food absorption and intolerance to gluten. The clinical features at presentation depend on the severity of disease and the age of the person affected. The small bowel biopsy remains the standard for diagnosis. Treatment requires lifelong abstinence from dietary gluten (removing from the diet all foods that contain wheat, barley, and rye). Within weeks of starting the gluten free diet, most patients respond to a gluten free diet with weight gain and decreased diarrhea. Tropical sprue is an idiopathic disease of chronic malabsorption that causes subtotal villous atrophy of the entire small intestine and ultimately leads to malabsorption and nutritional deficiencies. A careful history is crucial in making the diagnosis. Tropical
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sprue should be suspected in patients who have been in an endemic area for more than 2 weeks and who present with intestinal symptoms of diarrhea or steatorrhea and weight loss associated with macrocytic anemia; endoscopy is helpful in confirming diagnosis. Tropical sprue patients typically respond rapidly, although temporarily, to folic acid administration and more slowly and permanently to antibiotics. 9 figures. 5 tables. 30 references. ·
Celiac Disease: Diagnosis, Treatment, and Prognosis Source: in McDonald, J.W.D.; Burroughs, A.K.; Feagan, B.G., eds. Evidence Based Gastroenterology and Hepatology. London, UK: BMJ Publishing Group. 1999. p. 151-161. Contact: Available from BMJ Publishing Group. BMA Books, BMA House, Tavistock Square, London WCIH 9JR. Fax 44 (0)20 7383 6402. Email:
[email protected]. Website: www.bmjbooks.com. Price: Contact publisher for price. Summary: This chapter on celiac disease is from a book that emphasizes the approaches of evidence based medicine in gastroenterology (the study of the gastrointestinal tract and gastrointestinal diseases) and hepatology (the study of the liver and liver diseases). Celiac disease is the term used interchangeably with primary malabsorption, gluten sensitive enteropathy, or non-tropical sprue. The author notes that due to the overwhelming nature of its clinical manifestations and their consistent improvement with appropriate therapy, few medical conditions can rival celiac disease for both the frustration and gratification experienced by clinicians and patients. The clinical manifestations of celiac disease are largely due to nutrient malabsorption; the gastrointestinal symptoms are usually diarrhea and flatulence (gas). Other symptoms such as severe abdominal pain, nausea, and vomiting are much less common. The gold standard for the diagnosis of celiac disease remains the small bowel biopsy. Serological (blood) testing, particularly the antiendomysial antibody, can be very useful in appropriate clinical situations to both diagnose and to monitor the response to a gluten free diet. The threshold for initial and follow up biopsy (if necessary) should be low, given the limitations of the test and the general ease of upper gastrointestinal endoscopy and biopsy. A gluten-free diet remains the cornerstone of management. The available evidence suggests that a substantial proportion of patients will tolerate a moderate amount of oats in their diet with the appropriate clinical follow up. To prevent symptomatic recurrences, nutritional deficiencies (particularly bone disease), and malignant complications, a strict gluten-free diet should be encouraged in all patients. 2 tables. 61 references.
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Tropical Sprue: A Disappearing Enigma Source: in Snape, W.J., ed. Consultations in Gastroenterology. Philadelphia, PA: W.B. Saunders Company. 1996. p. 394-398. Contact: Available from W.B. Saunders Company. Order Fulfillment, 6277 Sea Harbor Drive, Orlando, FL 32887. (800) 545-2522. Fax (800) 8746418 or (407) 352-3445. Price: $125.00 (as of 1996). ISBN: 0721646700. Summary: This chapter from a gastroenterology text covers tropical sprue. The authors note that tropical sprue seems to be disappearing as sanitation, vitamin supplementation, antibiotics, and refrigeration penetrate the tropical areas of the world. The authors briefly discuss the etiologic work in this area, and then review the clinical history, physical examination, laboratory manifestations, radiology and histology, and treatment of tropical sprue. 12 references.
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Gastrointestinal Disorders Source: in Thoene, J.G., ed. Physicians' Guide to Rare Diseases. 2nd ed. Montvale, NJ: Dowden Publishing Company. 1995. p. 663-687. Contact: Available from Dowden Publishing Company, Inc. 110 Summit Avenue, Montvale, NJ 07645. (201) 391-9100. Fax (201) 391-2778. Price: $97.50 plus shipping and handling. ISBN: 0962871613. Summary: This chapter, from a physician's guidebook of rare diseases, describes rare disorders that affect the gastrointestinal (GI) tract, including disorders of the upper and lower intestine, the liver, and the pancreas. The chapter provides information about achalasia, Alagille syndrome, biliary atresia, Budd-Chiari syndrome, Caroli disease, celiac sprue, congenital hepatic fibrosis, Cronkhite-Canada disease, DubinJohnson syndrome, familial polyposis, Gardner syndrome, giant hypertrophic gastritis, eosinophilic gastroenteritis, Gilbert syndrome, glucose-galactose malabsorption, Hirschsprung disease, intestinal pseudo-obstruction, Mallory-Weiss syndrome, microvillus inclusion disease, Peutz-Jeghers syndrome, polycystic liver diseases, primary biliary cirrhosis, congenital sucrose-isomaltose malabsorption, Waldmann disease, and wandering spleen. For each disorder, the author includes a description, synonyms, and information about signs and symptoms, etiology, epidemiology, related disorders, standard and investigational treatments, and support groups and additional resources. A brief reference list for each disorder is also included.
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Directories In addition to the references and resources discussed earlier in this chapter, a number of directories relating to celiac disease have been published that consolidate information across various sources. These too might be useful in gaining access to additional guidance on celiac disease. The Combined Health Information Database lists the following, which you may wish to consult in your local medical library:32 ·
Complete Directory for People with Chronic Illness. 4rd ed Source: Lakeville, CT: Grey House Publishing, Inc. 2000. 1047 p. Contact: Available from Grey House Publishing, Inc. Pocket Knife Square, Lakeville, CT 06039. (860) 435-0868. Fax (860) 435-0867. Price: $165.00. ISBN: 0939300931. Summary: This directory provides a comprehensive overview of the support services and information resources available for people with any of 80 specific chronic illnesses. It presents information on various organizations, educational materials, publications, and databases. A chapter is devoted to each chronic illness and includes a brief description of it. The digestive diseases covered include celiac disease, Crohn's disease, gastrointestinal disorders, hepatitis, liver disease, substance abuse, and ulcerative colitis. The description of each disease is followed by subchapters that identify national and State associations and agencies, libraries, research centers, reference books, children's books, magazines, newsletters, pamphlets, videotapes and films, support groups and hotlines, and websites. In addition, the directory includes a chapter on death and bereavement, as well as a chapter on Wish Foundations for terminally and chronically ill children.
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1998-1999 Complete Directory for People with Rare Disorders Source: Lakeville, CT: Grey House Publishing, Inc. 1998. 726 p. Contact: Available from Grey House Publishing, Inc. Pocket Knife Square, Lakeville, CT 06039. (860) 435-0868. Fax (860) 435-0867. Price: $190.00. ISBN: 0939300982.
You will need to limit your search to “Directories” and celiac disease using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find directories, use the drop boxes at the bottom of the search page where “You may refine your search by”. For publication date, select “All Years”, select language and the format option “Directory”. By making these selections and typing in “celiac disease” (or synonyms) into the “For these words:” box, you will only receive results on directories dealing with celiac disease. You should check back periodically with this database as it is updated every three months.
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Summary: This directory, from the National Organization for Rare Disorders (NORD) provides a wealth of information on diseases and organizations. The directory offers four sections: disease descriptions, disease specific organizations, umbrella organizations, and government agencies. In the first section, the directory includes descriptions of 1,102 rare diseases in alphabetical order. Each entry defines the disorder, then refers readers to the organizations that might be of interest. Diseases related to digestive diseases include achalasia, Addison's disease, Alagille syndrome, Barrett's esophagus, Budd Chiari syndrome, Caroli disease, celiac sprue, cholangitis, cholecystitis, cirrhosis, colitis, Crohn's disease, Cushing syndrome, cystic fibrosis, diverticulitis, Dubin Johnson syndrome, fructose intolerance, galactosemia, gastritis, gastroesophageal reflux, hepatitis, Hirschprung's disease, Hurler syndrome, imperforate anus, irritable bowel syndrome, jejunal atresia, Korsakoff's syndrome, lipodystrophy, maple syrup urine disease, Morquio syndrome, polyposis, porphyria, proctitis, prune belly syndrome, sarcoidosis, Stevens Johnson syndrome, Tropical sprue, tyrosinemia, valinemia, vitamin E deficiency, Whipple's disease, Wilson's disease, and Zollinger Ellison syndrome. Each of the 445 organizations listed in the second section is associated with a specific disease or group of diseases. In addition to contact information, there is a descriptive paragraph about the organization and its primary goals and program activities. Entries include materials published by the organization as well as the diseases the organizations cover, which refer readers to Section I. The third section lists 444 organizations that are more general in nature, serving a wide range of diseases (for example, the American Liver Foundation). The final section describes 74 agencies that are important federal government contacts that serve the diverse needs of individuals with rare disorders. A name and key word index concludes the volume.
General Home References In addition to references for celiac disease, you may want a general home medical guide that spans all aspects of home healthcare. The following list is a recent sample of such guides (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · The Digestive System (21st Century Health and Wellness) by Regina Avraham; Library Binding (February 2000), Chelsea House Publishing (Library); ISBN: 0791055264; http://www.amazon.com/exec/obidos/ASIN/0791055264/icongroupinterna
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· American College of Physicians Complete Home Medical Guide (with Interactive Human Anatomy CD-ROM) by David R. Goldmann (Editor), American College of Physicians; Hardcover - 1104 pages, Book & CD-Rom edition (1999), DK Publishing; ISBN: 0789444127; http://www.amazon.com/exec/obidos/ASIN/0789444127/icongroupinterna · The American Medical Association Guide to Home Caregiving by the American Medical Association (Editor); Paperback - 256 pages 1 edition (2001), John Wiley & Sons; ISBN: 0471414093; http://www.amazon.com/exec/obidos/ASIN/0471414093/icongroupinterna · Anatomica : The Complete Home Medical Reference by Peter Forrestal (Editor); Hardcover (2000), Book Sales; ISBN: 1740480309; http://www.amazon.com/exec/obidos/ASIN/1740480309/icongroupinterna · The HarperCollins Illustrated Medical Dictionary : The Complete Home Medical Dictionary by Ida G. Dox, et al; Paperback - 656 pages 4th edition (2001), Harper Resource; ISBN: 0062736469; http://www.amazon.com/exec/obidos/ASIN/0062736469/icongroupinterna · Mayo Clinic Guide to Self-Care: Answers for Everyday Health Problems by Philip Hagen, M.D. (Editor), et al; Paperback - 279 pages, 2nd edition (December 15, 1999), Kensington Publishing Corp.; ISBN: 0962786578; http://www.amazon.com/exec/obidos/ASIN/0962786578/icongroupinterna · The Merck Manual of Medical Information : Home Edition (Merck Manual of Medical Information Home Edition (Trade Paper) by Robert Berkow (Editor), Mark H. Beers, M.D. (Editor); Paperback - 1536 pages (2000), Pocket Books; ISBN: 0671027263; http://www.amazon.com/exec/obidos/ASIN/0671027263/icongroupinterna
Vocabulary Builder Adolescence: The period of life beginning with the appearance of secondary sex characteristics and terminating with the cessation of somatic growth. The years usually referred to as adolescence lie between 13 and 18 years of age. [NIH]
Anaemia: A reduction below normal in the number of erythrocytes per cu. mm., in the quantity of haemoglobin, or in the volume of packed red cells per 100 ml. of blood which occurs when the equilibrium between blood loss (through bleeding or destruction) and blood production is disturbed. [EU] Antibiotic: A chemical substance produced by a microorganism which has the capacity, in dilute solutions, to inhibit the growth of or to kill other microorganisms. Antibiotics that are sufficiently nontoxic to the host are
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used as chemotherapeutic agents in the treatment of infectious diseases of man, animals and plants. [EU] Anus: The distal or terminal orifice of the alimentary canal. [EU] Appendicitis: Acute inflammation of the vermiform appendix. [NIH] Ascites: Effusion and accumulation of serous fluid in the abdominal cavity; called also abdominal or peritoneal dropsy, hydroperitonia, and hydrops abdominis. [EU] Benign: Not malignant; not recurrent; favourable for recovery. [EU] Bereavement: Refers to the whole process of grieving and mourning and is associated with a deep sense of loss and sadness. [NIH] Bezoars: Concretions of swallowed hair, fruit or vegetable fibers, or similar substances found in the alimentary canal. [NIH] Caustic: An escharotic or corrosive agent. Called also cauterant. [EU] Cholangitis: Inflammation of a bile duct. [EU] Cholecystitis: Inflammation of the gallbladder. [EU] Colic: Paroxysms of pain. This condition usually occurs in the abdominal region but may occur in other body regions as well. [NIH] Colorectal: Pertaining to or affecting the colon and rectum. [EU] Dehydration: The condition that results from excessive loss of body water. Called also anhydration, deaquation and hypohydration. [EU] Diverticulitis: Inflammation of a diverticulum, especially inflammation related to colonic diverticula, which may undergo perforation with abscess formation. Sometimes called left-sided or L-sides appendicitis. [EU] Encephalopathy: Any degenerative disease of the brain. [EU] Encopresis: Incontinence of feces not due to organic defect or illness. [NIH] Endemic: Present or usually prevalent in a population or geographical area at all times; said of a disease or agent. Called also endemial. [EU] Fissure: Any cleft or groove, normal or otherwise; especially a deep fold in the cerebral cortex which involves the entire thickness of the brain wall. [EU] Flatulence: The presence of excessive amounts of air or gases in the stomach or intestine, leading to distention of the organs. [EU] Fructose: A type of sugar found in many fruits and vegetables and in honey. Fructose is used to sweeten some diet foods. It is considered a nutritive sweetener because it has calories. [NIH] Gastritis: Inflammation of the stomach. [EU] Gastroenteritis: An acute inflammation of the lining of the stomach and intestines, characterized by anorexia, nausea, diarrhoea, abdominal pain, and
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weakness, which has various causes, including food poisoning due to infection with such organisms as Escherichia coli, Staphylococcus aureus, and Salmonella species; consumption of irritating food or drink; or psychological factors such as anger, stress, and fear. Called also enterogastritis. [EU] Giardia: A genus of flagellate intestinal protozoa parasitic in various vertebrates, including humans. Characteristics include the presence of four pairs of flagella arising from a complicated system of axonemes and cysts that are ellipsoidal to ovoidal in shape. [NIH] Helicobacter: A genus of gram-negative, spiral-shaped bacteria that is pathogenic and has been isolated from the intestinal tract of mammals, including humans. [NIH] Hemorrhoids: Varicosities of the hemorrhoidal venous plexuses. [NIH] Hepatocellular: Pertaining to or affecting liver cells. [EU] Hernia: (he protrusion of a loop or knuckle of an organ or tissue through an abnormal opening. [EU] Hiccup: A spasm of the diaphragm that causes a sudden inhalation followed by rapid closure of the glottis which produces a sound. [NIH] Idiopathic: Of the nature of an idiopathy; self-originated; of unknown causation. [EU] Jaundice: A clinical manifestation of hyperbilirubinemia, consisting of deposition of bile pigments in the skin, resulting in a yellowish staining of the skin and mucous membranes. [NIH] Lipodystrophy: 1. any disturbance of fat metabolism. 2. a group of conditions due to defective metabolism of fat, resulting in the absence of subcutaneous fat, which may be congenital or acquired and partial or total. Called also lipoatrophy and lipodystrophia. [EU] Malignant: Tending to become progressively worse and to result in death. Having the properties of anaplasia, invasion, and metastasis; said of tumours. [EU] Megaloblastic: A large abnormal red blood cell appearing in the blood in pernicious anaemia. [EU] Microvillus: A minute process or protrusion from the free surface of a cell. [EU]
Mucus: The free slime of the mucous membranes, composed of secretion of the glands, along with various inorganic salts, desquamated cells, and leucocytes. [EU] Neoplasms: New abnormal growth of tissue. Malignant neoplasms show a greater degree of anaplasia and have the properties of invasion and metastasis, compared to benign neoplasms. [NIH]
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Parasitic: Pertaining to, of the nature of, or caused by a parasite. [EU] Parenteral: Not through the alimentary canal but rather by injection through some other route, as subcutaneous, intramuscular, intraorbital, intracapsular, intraspinal, intrasternal, intravenous, etc. [EU] Peritonitis: Inflammation of the peritoneum; a condition marked by exudations in the peritoneum of serum, fibrin, cells, and pus. It is attended by abdominal pain and tenderness, constipation, vomiting, and moderate fever. [EU] Pernicious: Tending to a fatal issue. [EU] Poisoning: A condition or physical state produced by the ingestion, injection or inhalation of, or exposure to a deleterious agent. [NIH] Proctitis: Inflammation of the rectum. [EU] Puerperium: The period or state of confinement after labour. [EU] Radiology: A specialty concerned with the use of x-ray and other forms of radiant energy in the diagnosis and treatment of disease. [NIH] Recurrence: The return of a sign, symptom, or disease after a remission. [NIH] Sanitation: The development and establishment of environmental conditions favorable to the health of the public. [NIH] Sarcoidosis: An idiopathic systemic inflammatory granulomatous disorder comprised of epithelioid and multinucleated giant cells with little necrosis. It usually invades the lungs with fibrosis and may also involve lymph nodes, skin, liver, spleen, eyes, phalangeal bones, and parotid glands. [NIH] Spastic: 1. of the nature of or characterized by spasms. 2. hypertonic, so that the muscles are stiff and the movements awkward. 3. a person exhibiting spasticity, such as occurs in spastic paralysis or in cerebral palsy. [EU] Steatorrhoea: Excessive amounts of fats in the feces, as in malabsorption syndromes. [EU]
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CHAPTER 7. MULTIMEDIA ON CELIAC DISEASE Overview Information on celiac disease can come in a variety of formats. Among multimedia sources, video productions, slides, audiotapes, and computer databases are often available. In this chapter, we show you how to keep current on multimedia sources of information on celiac disease. We start with sources that have been summarized by federal agencies, and then show you how to find bibliographic information catalogued by the National Library of Medicine. If you see an interesting item, visit your local medical library to check on the availability of the title.
Video Recordings Most diseases do not have a video dedicated to them. If they do, they are often rather technical in nature. An excellent source of multimedia information on celiac disease is the Combined Health Information Database. You will need to limit your search to “video recording” and “celiac disease” using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find video productions, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Videorecording (videotape, videocassette, etc.).” By making these selections and typing “celiac disease” (or synonyms) into the “For these words:” box, you will only receive results on video productions. The following is a typical result when searching for video recordings on celiac disease: ·
Celiac Disease 1994 Symposium Source: Studio City, CA: Celiac Disease Foundation. 1994.
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Contact: Available from Celiac Disease Foundation. 13251 Ventura Boulevard, Suite 3, Studio City, CA 91604-1838. (818) 990-2354. Fax (818) 990-2379. Price: $15 (as of 1995). Summary: This videotape documents the Celiac Disease Symposium presented at the 1994 World Congresses of Gastroenterology, held in Los Angeles, CA. Topics and presenters include the following: an introduction and disease pathogenesis (Dr. Martin Kagnoff); approaches to management of the adolescent and teenager with celiac disease (Dr. Marvin Ament); how to find the celiac, i.e., new approaches for diagnosis (Dr. Chris Mulder); latent celiac disease, treatment unresponsiveness and malignant complications (Dr. Michael Marsh); and the gluten-free diet (Dr. Elaine Hartsook). (AA-M).
Bibliography: Multimedia on Celiac Disease The National Library of Medicine is a rich source of information on healthcare-related multimedia productions including slides, computer software, and databases. To access the multimedia database, go to the following Web site: http://locatorplus.gov/. Select “Search LOCATORplus.” Once in the search area, simply type in celiac disease (or synonyms). Then, in the option box provided below the search box, select “Audiovisuals and Computer Files.” From there, you can choose to sort results by publication date, author, or relevance. The following multimedia has been indexed on celiac disease. For more information, follow the hyperlink indicated: ·
Abdominal angina: surgical treatment with bypass graft from aorta to celiac and superior mesenteric arteries. Source: George C. Morris, Jr., Michael E. DeBakey; produced by Biological Film Center, The Methodist Hospital, Houston; [made by] A-; Year: 1962; Format: Motion picture; [Houston: Morris; for loan by Baylor College of Medicine Learning Resources Center; Atlanta: for loan by National Medical Audiovisual Center, 1962?]
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Alzheimer's disease : a family practice update. Source: American Academy of Family Physicians; produced by Gardiner-Caldwell SynerMed; Year: 1998; Format: Videorecording; Kansas City, Mo.: The Academy, c1998
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Cholesterol : understanding is the key. Source: a presentation of Films for the Humanities & Sciences; Information Television Network; Year: 2000; Format: Videorecording; Princeton, N.J.: Films for the Humanities and Sciences, c2000
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Chronic mesenteric ischemia : an under-recognized surgical entity. Source: a production of University of Iowa Hospitals and Clinics, Iowa City; Year: 1998; Format: Videorecording; [Woodbury, Conn.: Ciné-Med], c1998
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Clinical advances in lipid management in family practice. Source: American Academy of Family Physicians; produced by GardinerCaldwell SynerMed; Year: 1997; Format: Videorecording; Kansas City, Mo.: The Academy, c1997
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Coeliac artery aneurysm : resection with hepatic-gastric revascularization. Source: a production of Surgery Today, Inc., in cooperation with the Media Center at Fairfax Hospital; Year: 1990; Format: Videorecording; [United States: s.n., 1990]
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Coeliac disease. Source: by J.A. Walker-Smith; Year: 1975; Format: Slide; London, England: Medical College of Saint Bartholomew's Hospital, London, England, Audio Visual Teaching Dept., c1975
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Combined surgery for right renal tumor and celiac axis aneurysm. Source: American College of Surgeons; Year: 1991; Format: Videorecording; Danbury, Conn.: Davis & Geck Surgical Film-Video Library, [1991]
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Diagnosis and management of cystic fibrosis. Source: National Institute of Arthritis and Metabolic Diseases and National Cystic Fibrosis Research Foundation; [made by] Sturgis-Grant Productions, inc; Year: 1967; Format: Motion picture; New York: The Foundation; [Atlanta: for loan by National Medical Audiovisual Center], 1967
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Differential diagnosis of steatorrhea. Source: American Gastroenterological Association; Year: 1969; Format: Slide; [Thorofare, N. J.]: The Association 1969
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Duodenoscopy. Source: Robert G. Font ... [et al.]; Year: 1974; Format: Slide; New York: Medcom, c1974
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Gastroenterology . Year: 2001; Format: Electronic resource; Nashville, TN: HealthStream, 2001
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GeneScreen: an international journal of medical genomics. Year: 9999; Oxford: Blackwell Science, c2000-
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Improving the ability of Alzheimer's patients to communicate. Source: Kathryn A. Bayles, Cheryl K. Tomoeda; Year: 1998; Format: Videorecording; Tucson, AZ.: Canyonlands Pub., c1998
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Inflammatory bowel disease. Source: a presentation of Films for the Humanities & Sciences; Information Television Network; Year: 2000; Format: Videorecording; Princeton, N.J.: Films for the Humanities and Sciences, c2000
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Laparoscopic median arcuate ligament release for celiac artery compression syndrome. Source: from the Film Library and the Clinical Congress of ACS, Mount Sinai; produced by Mount Sinai School of Medicine, Department of Telemedicine/Medical Vid; Year: 1999; Format: Videorecording; Woodbury, CT: Ciné-Med, c1999
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Laparoscopic repair of paracolostomy hernia ; Laparoscopic release of celiac artery compression syndrome; Magnetic resonance guided laparo-endoscopic surgery. Source: Society American Gastrointestinal Endoscopic Surgeons, SAGES; Year: 1999; Format: Videorecording; Woodbury, Conn.: Distributed by Ciné-Med, [1999]
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Lithiase vesiculaire lithotrite interne par cholecystostomie laparoscopique . Year: 1991; Format: Videorecording; [Bordeaux: s.n.], 1989
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Living in slow motion. Source: a presentation of Films for the Humanities & Sciences; produced by Workweek Television Productions Inc., in association with Galafilm Inc. for the Discovery Channel; BarnaAlper Productions inc; Year: 1999; Format: Videorecording; Princeton, N.J.: Films for the Humanities and Sciences, c1999
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Malabsorption and diarrhea. Source: American Gastroenterological Association, in cooperation with the National Library of Medicine, National Medical Audiovisual Center; Year: 1978; Format: Slide; Atlanta: The Center, 1978
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Malabsorption syndromes. Source: Wayne State Univ. School of Medicine; produced by Rex Fleming; Year: 1968; Format: Motion picture; Detroit: Wayne State Univ., c1968
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Pathophysiology of diarrhea : an approach to therapy. Source: Eaton [Laboratories]; Year: 1973; Format: Motion picture; Norwich, N. Y.: Eaton: [for loan by Norwich-Eaton Pharmaceuticals, Film Library], 1973
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Pathophysiology of diarrhea. Source: American Gastroenterological Association; Year: 1979; Format: Slide; [Thorofare, N. J.]: The Association; [Timonium, Md.: for sale by Milner-Fenwick], c1979
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Pathophysiology. Source: Catherine Paradiso; Year: 1999; Philadelphia: Lippincott, c1999
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Qualitative tests for steatorrhea. Source: Thomas Trainer, Ronald Picoff, David Duffell; produced at the ASCP Educational Center; Year: 1972; Format: Slide; [Chicago: American Society of Clinical Pathologists, c1972]
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Recent memory screening test. Source: produced by Canyonlands Publishing Inc.; a production of Images Film/Video, Inc; Year: 1998; Format: Videorecording; [Green Valley, Ariz.?]: Canyonlands Pub., c1998
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Steatorrhea in the blind loop syndrome. Source: American Gastroenterological Association; Year: 1969; Format: Slide; [Thorofare, N. J.]: The Association, 1969
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Supraceliac aorto-celiac axis-superior mesenteric artery bypass. Source: authors, Gregorio A. Sicard ... [et al.]; Year: 1988; Format: Videorecording; Danbury, Conn.: American College of Surgeons, Davis & Geck Surgical Film-Video Library, [1988]
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Surgery of the celiac axis and the superior mesenteric artery (chronic intestinal ischemia and aneurysms). Source: from the Film Library and the Clinical Congress of ACS; University of Bologna, Departement of Surgery, Intensive Care, and Transp; Year: 1996; Format: Videorecording; Woodbury, CT: sd., col; [1996]
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Understanding the communication problems of Alzheimer's patients to communicate. Source: Kathryn A. Bayles, Cheryl K. Tomoeda; produced by Canonlands Publishing, Inc; Year: 1998; Format: Videorecording; Tucson, AZ: Canyonlands Pub., c1998
Vocabulary Builder Aneurysm: A sac formed by the dilatation of the wall of an artery, a vein, or the heart. The chief signs of arterial aneurysm are the formation of a pulsating tumour, and often a bruit (aneurysmal bruit) heard over the swelling. Sometimes there are symptoms from pressure on contiguous parts. [EU]
Artery: A large blood vessel that carries blood from the heart to other parts of the body. Arteries are thicker and have walls that are stronger and more elastic than the walls of veins. [NIH] Ligament: A band of fibrous tissue that connects bones or cartilages, serving to support and strengthen joints. [EU] Mesenteric: Pertaining to the mesentery : a membranous fold attaching various organs to the body wall. [EU] Resection: Excision of a portion or all of an organ or other structure. [EU] Telemedicine: Delivery of health services via remote telecommunications. This includes interactive consultative and diagnostic services. [NIH]
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CHAPTER 8. PERIODICALS AND NEWS ON CELIAC DISEASE Overview Keeping up on the news relating to celiac disease can be challenging. Subscribing to targeted periodicals can be an effective way to stay abreast of recent developments on celiac disease. Periodicals include newsletters, magazines, and academic journals. In this chapter, we suggest a number of news sources and present various periodicals that cover celiac disease beyond and including those which are published by patient associations mentioned earlier. We will first focus on news services, and then on periodicals. News services, press releases, and newsletters generally use more accessible language, so if you do chose to subscribe to one of the more technical periodicals, make sure that it uses language you can easily follow.
News Services & Press Releases Well before articles show up in newsletters or the popular press, they may appear in the form of a press release or a public relations announcement. One of the simplest ways of tracking press releases on celiac disease is to search the news wires. News wires are used by professional journalists, and have existed since the invention of the telegraph. Today, there are several major “wires” that are used by companies, universities, and other organizations to announce new medical breakthroughs. In the following sample of sources, we will briefly describe how to access each service. These services only post recent news intended for public viewing.
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PR Newswire Perhaps the broadest of the wires is PR Newswire Association, Inc. To access this archive, simply go to http://www.prnewswire.com. Below the search box, select the option “The last 30 days.” In the search box, type “celiac disease” or synonyms. The search results are shown by order of relevance. When reading these press releases, do not forget that the sponsor of the release may be a company or organization that is trying to sell a particular product or therapy. Their views, therefore, may be biased.
Reuters The Reuters’ Medical News database can be very useful in exploring news archives relating to celiac disease. While some of the listed articles are free to view, others can be purchased for a nominal fee. To access this archive, go to http://www.reutershealth.com/frame2/arch.html and search by “celiac disease” (or synonyms). The following was recently listed in this archive for celiac disease: ·
Celiac disease overlooked as cause of iron-deficiency anemia Source: Reuters Medical News Date: February 05, 2001 http://www.reuters.gov/archive/2001/02/05/professional/links/20010 205epid004.html
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Celiac disease common in children with Down's syndrome Source: Reuters Medical News Date: January 15, 2001 http://www.reuters.gov/archive/2001/01/15/professional/links/20010 115epid008.html
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Transglutaminase antibodies predictive of celiac disease in asymptomatic children Source: Reuters Medical News Date: October 04, 2000 http://www.reuters.gov/archive/2000/10/04/professional/links/20001 004clin002.html
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Organ-specific autoantibodies linked to dietary gluten in celiac disease patients Source: Reuters Medical News Date: September 07, 2000 http://www.reuters.gov/archive/2000/09/07/professional/links/20000 907clin016.html
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Celiac disease linked to spontaneous abortion, fetal growth retardation Source: Reuters Medical News Date: August 02, 2000 http://www.reuters.gov/archive/2000/08/02/professional/links/20000 802clin010.html
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Celiac disease linked to repeated miscarriages Source: Reuters Health eLine Date: July 28, 2000 http://www.reuters.gov/archive/2000/07/28/eline/links/20000728elin 013.html
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Small-bowel lymphoma associated with unrecognized celiac disease Source: Reuters Medical News Date: July 13, 2000 http://www.reuters.gov/archive/2000/07/13/professional/links/20000 713epid004.html
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Celiac disease linked to autoimmune thyroid disease Source: Reuters Medical News Date: March 30, 2000 http://www.reuters.gov/archive/2000/03/30/professional/links/20000 330clin009.html
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Oats produce no adverse immunologic effects in patients with celiac disease Source: Reuters Medical News Date: March 10, 2000 http://www.reuters.gov/archive/2000/03/10/professional/links/20000 310clin010.html
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Screening for celiac disease recommended in pregnancy Source: Reuters Medical News Date: March 09, 2000 http://www.reuters.gov/archive/2000/03/09/professional/links/20000 309epid004.html
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Immunodominant peptide identified in celiac disease Source: Reuters Medical News Date: March 01, 2000 http://www.reuters.gov/archive/2000/03/01/professional/links/20000 301scie001.html
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High risk of fractures confirmed in celiac disease patients Source: Reuters Medical News Date: January 28, 2000 http://www.reuters.gov/archive/2000/01/28/professional/links/20000 128clin002.html
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Celiac disease linked to reversible downregulation of E-cadherin and beta-catenin Source: Reuters Medical News Date: January 18, 2000 http://www.reuters.gov/archive/2000/01/18/professional/links/20000 118scie001.html
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Serologic, genetic markers identify celiac disease in first-degree relatives of patients Source: Reuters Medical News Date: December 10, 1999 http://www.reuters.gov/archive/1999/12/10/professional/links/19991 210epid002.html
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Untreated celiac disease a risk factor for poor birth outcomes Source: Reuters Medical News Date: October 28, 1999 http://www.reuters.gov/archive/1999/10/28/professional/links/19991 028epid003.html
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Breast-feeding may protect against celiac disease Source: Reuters Medical News Date: May 10, 2002 http://www.reuters.gov/archive/2002/05/10/professional/links/20020 510clin015.html
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Celiac disease common in type 1 diabetic children Source: Reuters Medical News Date: May 06, 2002 http://www.reuters.gov/archive/2002/05/06/professional/links/20020 506epid003.html
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Genetic component of celiac disease identified Source: Reuters Medical News Date: May 03, 2002 http://www.reuters.gov/archive/2002/05/03/professional/links/20020 503epid005.html
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Treating celiac disease may reverse liver failure Source: Reuters Health eLine Date: April 24, 2002 http://www.reuters.gov/archive/2002/04/24/eline/links/20020424elin 017.html
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Some cases of serious liver disease may result from unrecognized celiac disease Source: Reuters Medical News Date: April 23, 2002 http://www.reuters.gov/archive/2002/04/23/professional/links/20020 423clin018.html
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Cancer risk from celiac disease only slight: study Source: Reuters Health eLine Date: March 20, 2002 http://www.reuters.gov/archive/2002/03/20/eline/links/20020320elin 001.html
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Celiac disease linked to threefold increase in NHL risk Source: Reuters Medical News Date: March 19, 2002 http://www.reuters.gov/archive/2002/03/19/professional/links/20020 319epid010.html
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Patients with celiac disease may be able to tolerate oats in their diets Source: Reuters Medical News Date: February 12, 2002 http://www.reuters.gov/archive/2002/02/12/professional/links/20020 212clin017.html
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Oats may be OK for people with celiac disease Source: Reuters Health eLine Date: February 12, 2002 http://www.reuters.gov/archive/2002/02/12/eline/links/20020212elin 007.html
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COX-2 involved in celiac disease, possibly in maintaining intestinal integrity Source: Reuters Medical News Date: January 21, 2002 http://www.reuters.gov/archive/2002/01/21/professional/links/20020 121clin002.html
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Gluten-free diet promotes BMD increase in children with celiac disease Source: Reuters Medical News Date: November 19, 2001 http://www.reuters.gov/archive/2001/11/19/professional/links/20011 119clin006.html
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Celiac disease more common than previously thought in US children with diabetes Source: Reuters Medical News Date: October 30, 2001 http://www.reuters.gov/archive/2001/10/30/professional/links/20011 030epid001.html
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Classic presentation of celiac disease is not most common Source: Reuters Medical News Date: October 22, 2001 http://www.reuters.gov/archive/2001/10/22/professional/links/20011 022clin016.html
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Brain white-matter lesions are an extraintestinal manifestation of celiac disease Source: Reuters Medical News Date: August 09, 2001 http://www.reuters.gov/archive/2001/08/09/professional/links/20010 809clin004.html
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Celiac disease may be equally common in US and Europe Source: Reuters Medical News Date: October 05, 1999 http://www.reuters.gov/archive/1999/10/05/professional/links/19991 005epid004.html
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Prevalence of celiac disease increased in idiopathic dilated cardiomyopathy Source: Reuters Medical News Date: July 16, 1999 http://www.reuters.gov/archive/1999/07/16/professional/links/19990 716clin009.html
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Two assays are better than one for diagnosis of celiac disease Source: Reuters Medical News Date: July 08, 1999 http://www.reuters.gov/archive/1999/07/08/professional/links/19990 708clin009.html
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·
High risk of primary biliary cirrhosis identified in patients with celiac disease Source: Reuters Medical News Date: May 19, 1999 http://www.reuters.gov/archive/1999/05/19/professional/links/19990 519epid002.html
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Transglutaminase-based ELISA a potential "breakthrough" in diagnosis of celiac disease Source: Reuters Medical News Date: February 19, 1999 http://www.reuters.gov/archive/1999/02/19/professional/links/19990 219drgd001.html
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Case report links celiac disease to classic migraine Source: Reuters Medical News Date: October 13, 1998 http://www.reuters.gov/archive/1998/10/13/professional/links/19981 013clin012.html
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Celiac Disease Highly Prevalent In Type 1 Diabetics Source: Reuters Medical News Date: January 05, 1998 http://www.reuters.gov/archive/1998/01/05/professional/links/19980 105epid001.html
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Celiac Disease Prevalent In Type I Diabetes Source: Reuters Medical News Date: August 21, 1997 http://www.reuters.gov/archive/1997/08/21/professional/links/19970 821epid001.html
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Celiac Disease Autoantigen Identified, Pointing To Easier Diagnosis Source: Reuters Medical News Date: July 14, 1997 http://www.reuters.gov/archive/1997/07/14/professional/links/19970 714scie001.html
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Dietary Intervention Increases BMD In Adults With Celiac Disease Source: Reuters Medical News Date: June 12, 1997 http://www.reuters.gov/archive/1997/06/12/professional/links/19970 612clin004.html
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Hypocalcemia, Skeletal Disease Can Be Presenting Features Of Celiac Disease Source: Reuters Medical News Date: May 15, 1997 http://www.reuters.gov/archive/1997/05/15/professional/links/19970 515clin006.html
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Autoimmune Pathology Shown To Be Complex In Celiac Disease Source: Reuters Medical News Date: October 22, 1996 http://www.reuters.gov/archive/1996/10/22/professional/links/19961 022clin011.html
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Celiac Disease Common In Down Syndrome Patients Source: Reuters Medical News Date: April 18, 1996 http://www.reuters.gov/archive/1996/04/18/professional/links/19960 418clin010.html
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Celiac Disease May Be Common In Adults With IDDM Source: Reuters Medical News Date: March 18, 1996 http://www.reuters.gov/archive/1996/03/18/professional/links/19960 318epid003.html
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Gluten Sensitivity, Neurological Disorders And Celiac Disease: A Possible Link Source: Reuters Medical News Date: February 09, 1996 http://www.reuters.gov/archive/1996/02/09/professional/links/19960 209clin008.html
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Moderate Amounts Of Oats Safe For Ingestion By Patients With Celiac Disease Source: Reuters Medical News Date: October 19, 1995 http://www.reuters.gov/archive/1995/10/19/professional/links/19951 019clin006.html
The NIH Within MEDLINEplus, the NIH has made an agreement with the New York Times Syndicate, the AP News Service, and Reuters to deliver news that can be browsed by the public. Search news releases at http://www.nlm.nih.gov/medlineplus/alphanews_a.html. MEDLINEplus
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allows you to browse across an alphabetical index. Or you can search by date at http://www.nlm.nih.gov/medlineplus/newsbydate.html. Often, news items are indexed by MEDLINEplus within their search engine.
Business Wire Business Wire is similar to PR Newswire. To access this archive, simply go to http://www.businesswire.com. You can scan the news by industry category or company name.
Internet Wire Internet Wire is more focused on technology than the other wires. To access this site, go to http://www.internetwire.com and use the “Search Archive” option. Type in “celiac disease” (or synonyms). As this service is oriented to technology, you may wish to search for press releases covering diagnostic procedures or tests that you may have read about. Search Engines Free-to-view news can also be found in the news section of your favorite search engines (see the health news page at Yahoo: http://dir.yahoo.com/Health/News_and_Media/, or use this Web site’s general news search page http://news.yahoo.com/. Type in “celiac disease” (or synonyms). If you know the name of a company that is relevant to celiac disease, you can go to any stock trading Web site (such as www.etrade.com) and search for the company name there. News items across various news sources are reported on indicated hyperlinks.
BBC Covering news from a more European perspective, the British Broadcasting Corporation (BBC) allows the public free access to their news archive located at http://www.bbc.co.uk/. Search by “celiac disease” (or synonyms).
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Newsletters on Celiac Disease Given their focus on current and relevant developments, newsletters are often more useful to patients than academic articles. You can find newsletters using the Combined Health Information Database (CHID). You will need to use the “Detailed Search” option. To access CHID, go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. Your investigation must limit the search to “Newsletter” and “celiac disease.” Go to the bottom of the search page where “You may refine your search by.” Select the dates and language that you prefer. For the format option, select “Newsletter.” By making these selections and typing in “celiac disease” or synonyms into the “For these words:” box, you will only receive results on newsletters. The following list was generated using the options described above: ·
Dermatitis Herpetiformis: Part I Source: GIG Newsletter. Gluten Intolerance Group of North America Newsletter. 17(2): 9-14. April-June 1993. Contact: Available from Gluten Intolerance Group of North America. P.O. Box 23053, Seattle, WA 98102. (206) 325-6980. Summary: This newsletter article provides an overview of dermatitis herpetiformis (DH), a common complication in people with celiac disease or gluten intolerance. Written in a question-and-answer format, the document discusses the appearance of DH; the body areas most likely to have DH eruptions; variations in severity; relationship between hormone levels and DH eruptions; demographics; how DH is diagnosed; other IgA skin disorders that mimic DH; treatment options for DH; medications used and side effects of each, including dapsone, sulphapyridine, and sulphamethoxy-pyridazine; and choosing diet versus medication. The article was excerpted from a chapter in the text Coeliac Disease (Blackwell Scientific Publications, 1992).
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Human Genome Project Progress Source: GIG Newsletter. Gluten Intolerance Group of North America Newsletter. 17(2): 4-5. April-June 1993. Contact: Available from Gluten Intolerance Group of North America. P.O. Box 23053, Seattle, WA 98102. (206) 325-6980. Summary: This Gluten Intolerance Group (GIG) newsletter article condenses information from a recent report from the Human Genome Project of the National Center for Human Genome Research (NCHGR). The article describes the scientific aims of the Human Genome Project;
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the activities of the NCHGR; outreach programs of human genome centers; the nine genome centers of the NCHGR; and projects of these centers that might be of particular interest to members of GIG. The introduction notes that, since celiac sprue and dermatitis herpetiformis are genetic disorders, any information gleaned about the gene(s) that code for these disorders will help determine cause and perhaps provide information for treatment and cure.
Newsletter Articles If you choose not to subscribe to a newsletter, you can nevertheless find references to newsletter articles. We recommend that you use the Combined Health Information Database, while limiting your search criteria to “newsletter articles.” Again, you will need to use the “Detailed Search” option. Go to the following hyperlink: http://chid.nih.gov/detail/detail.html. Go to the bottom of the search page where “You may refine your search by.” Select the dates and language that you prefer. For the format option, select “Newsletter Article.” By making these selections, and typing in “celiac disease” (or synonyms) into the “For these words:” box, you will only receive results on newsletter articles. You should check back periodically with this database as it is updated every 3 months. The following is a typical result when searching for newsletter articles on celiac disease: ·
Think You Can't Exercise Due to Celiac Disease? Source: Gluten-Free Living. p. 3, 6. July-August 2000. Contact: Available from Gluten-Free Living. P.O. Box 105, Hastings-onHudson, NY 10706. E-mail:
[email protected]. Summary: In this newsletter article the author, who has celiac disease, describes how she includes exercise in her health care plan. The author shares the strategies that she uses to stick to an exercise program. These recommendations include: do not compare yourself to anyone else; set reasonable goals that will fit into your lifestyle; set a schedule that will work and write it down; eat foods that will supply energy to your body, but do not exercise after eating; get proper rest and focus on the workout; if you are a beginner, try walking first; do strength training two or three times a week; use weight that can be managed for eight to 10 repetitions; and set realistic goals (i.e., do not expect to see results overnight). The author then discusses how to use good nutritional strategies to give the
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body enough fuel to keep up with a complete exercise program. The author explains the framework of her diet and meal planning activities, sharing specific details about each meal time or situation. The author concludes by reiterating her advice to include nutrition, not just gluten avoidance, in a complete plan of healthy living. ·
Celiac Disease: Then and Now Source: Lifeline. 15(1): 1-2. Winter 1999. Contact: Available from Celiac Sprue Association, USA, Inc. P.O. Box 31700, Omaha, NE 68131-0700. (402) 558-0600. Fax (402) 558-1347. Summary: This newsletter article provides an overview of celiac disease, a disease of the small intestine caused by permanent intolerance to gluten. Celiac disease is complicated by malabsorption of nutrients and associated symptoms. Diagnosis depends on an abnormal biopsy of the small intestine in the presence of appropriate clinical symptoms. The author first briefly reviews the history of the understanding of celiac disease, then discusses pathophysiology, epidemiology, immunology, immunogenetics, and associated conditions. The author concludes with a section discussing the problems of identifying celiac disease in children. The author reviews the typical symptoms and notes that parents usually know something is wrong with the child before the doctor is willing to believe it. The challenge is to get the correct differential diagnosis and to proceed with appropriate testing. Between 9 and 19 months, classic symptoms begin to appear: the potbelly, the anger or irritability, the change in body composition such as loss of muscle bulk, loss of body fat, thinness, and other findings. The other symptoms seen in older children and in adults are listed as well. The author briefly discusses the screening tests used (antigliadin antibodies) but stresses that the diagnosis can be confirmed only with small bowel biopsy.
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Dietary Factors in Gastrointestinal Diseases Source: Networking News. 20(4): 1, 5, 10. Summer 1999. Contact: Available from Nutrition Education for the Public. ADA/DPG 52, Bill Evers, 2971 Soldiers Home Road, West Lafayette, IN 47906-1660. Summary: This newsletter article reviews the role of dietary factors in gastrointestinal diseases. Many factors have been implicated to produce worsening of symptoms of functional gastrointestinal disorders (FGID), such as irritable bowel syndrome (IBS), including stress and diet. The author discusses several specific diseases that are associated with adverse reactions to food. The common complaints that are associated with reactions to food are: bloating, heartburn, dyspepsia, excessive gas,
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diarrhea, and constipation. Some of these diseases (gastroesophageal reflux disease, celiac disease, food allergies, and lactose intolerance) are associated with specific dietary therapies that improve symptoms; each is summarized briefly. The author also discusses a rare syndrome, called eosinophilic gastroenteritis, which is treated with prednisone therapy. All of these diseases have characteristics that differentiate them from functional GI disorders (those without a clear underlying pathology). The author notes that a symptoms diary collected over 2 to 3 weeks can help determine the relationship of the symptoms to foods. Many individuals with FGID believe that specific foods are responsible for their symptoms, yet no clear resolution of symptoms occurs when the offending foods are eliminated. An elimination diet should be performed with the help of a health professional, since unmonitored elimination diets can produce malnutrition. 8 references. ·
Rare or Not? How Prevalent is Celiac Disease? Source: Gluten Free Living. 2(3): 6-7. May-June 1997. Contact: Available from Gluten-Free Living. P.O. Box 105, Hastings on Hudson, NY 10706. Summary: This newsletter article considers the epidemiology of celiac disease. The author notes that one of the many reasons why Americans with celiac disease have a hard time getting a valid diagnosis is the fact that many American physicians are not aware that the problem exists in this country. The author reports on a research study being organized to investigate the prevalence of celiac disease in the United States. The research plans include at least six U.S. medical centers nationwide that will begin recruiting participants from specific high risk groups of patients and from among healthy subjects who are blood donors or first degree relatives of people newly diagnosed with celiac disease. Participants with elevated test levels will be advised to undergo a small bowel endoscopy. If the endoscopy shows the mucosal changes that indicate celiac disease, the participant will be placed on a gluten-free diet. Participants who decline the biopsy will be offered the option of beginning the gluten-free diet. The author encourages readers to contribute financially to this research project. One sidebar explains the use of the D-xylose test in celiac disease diagnosis; another provides a brief review of blood testing. (AA-M).
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Top Ten Tips for People with Celiac Disease Source: Gluten-Free Living. 1(1): 1-2. January-February 1996.
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Contact: Available from Gluten-Free Living. P.O. Box 105, Hastings-onHudson, NY 10706. Summary: This newsletter article provides ten self-care suggestions for readers with celiac disease. The suggestions include: don't cheat on the gluten-free diet; determine and follow a nutritionally-sound, gluten-free diet; take multivitamins daily; have a bone density test to determine bone health; have an annual physical and gluten-antibody test, and have at least one biopsy to verify healing; and be aware of the other diseases for which people with celiac disease may be at higher risk. The author briefly discusses each of the suggestions. ·
Lifestyle Stresses of Celiac Disease Source: Celiac Disease Foundation Newsletter. 3(1): 3. Winter 1993. Contact: Available from Celiac Disease Foundation. 13251 Ventura Boulevard, Number 3, Studio City, CA 91604. (818) 990-2354. Summary: This brief newsletter article discusses the stress that often accompanies a chronic disease such as celiac disease. The author, a psychotherapist, shares her personal experience and provides practical suggestions for coping with stress. The importance of occasionally pampering oneself and of taking care of emotional and psychological needs is emphasized.
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Celiac Disease and Short Stature Source: Gluten-Free Living. 6(3): 3, 6, 8. Summer 2001. Contact: Available from Gluten-Free Living. P.O. Box 105, Hastings-onHudson, NY 10706. E-mail:
[email protected]. Summary: This article reviews the potential impact of celiac disease (gluten intolerance) on the absorption of nutrients and, thus, growth in children. The author first summarizes the normal rate of growth, from birth until some time after puberty, which is characterized by periods of acceleration during which the child grows more rapidly. Normal growth is dependent on genetics, adequate nutrition, and a normal complement of hormones, including growth hormone and thyroid hormones. The author next revises the relationship between celiac disease and growth in children, hypothesized as a complex interplay of factors. Chronic inflammatory changes in the intestinal tract induced by gluten ingestion are somehow involved in growth failure. Inflammatory reactions are associated with a number of chemical reactions that are known to require energy and hence may deprive the individual of calories that could be used for growth. Active celiac disease may have an effect on growth
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hormone, either directly or indirectly. And celiac disease may be associated with an autoimmune decrease in pituitary hormones. The author discusses the possible effect that early diagnosis and treatment (with a gluten free diet) can have on restoring normal growth in children with celiac disease. The author stresses the need for health care providers to closely follow all children with celiac disease to monitor their progress and rate of growth. ·
Celiac Disease: How to Manage Gluten Intolerance Source: Mayo Clinic Health Letter. 18(11): 7. November 2000. Contact: Available from Mayo Clinic Health Letter. Subscription Services, P.O. Box 53889, Boulder, CO 80322-3889. (800) 333-9037 or (303) 604-1465. Summary: This newsletter article offers strategies for dealing with celiac disease (an inherited intolerance to gluten that results in intestinal and other disorders). Gluten proteins are found in a variety of grains, including wheat, barley, and rye, so that a diet that is gluten free can be somewhat challenging. The article describes how the immune system of people with celiac disease reacts whenever they eat food containing gluten; this reaction causes the lining of the small intestine to become swollen and inflamed. The result is nutritional deficiencies and digestive problems, as well as a greater chance of developing small bowel cancer, especially intestinal lymphoma. Celiac disease can become active at any age, but sometimes follows a disruptive event, such as a viral infection, severe stress, pregnancy, or physical trauma. Symptoms vary greatly, and the disease can resemble other conditions, such as irritable bowel syndrome. Symptoms can include fatigue, abdominal pain, intermittent diarrhea, bloating and excessive passing of gas, weight loss, or foul smelling stools that float. The primary treatment for celiac disease is a lifelong gluten free diet. There are still many foods that can be eaten, including plain meats, fruits, vegetables, rice, potatoes, and most dairy products. The author encourages readers to work with their health care provider to set up a balanced, gluten free diet that incorporates individual preferences and needs. Once the gluten is completely eliminated from the patient's diet, inflammation in the small intestine begins to subside in just a few days. Most people who maintain the diet experience complete healing within several months to 2 to 3 years. One sidebar explains the diagnosis of celiac disease, which may include a small intestine biopsy for confirmation of the clinical diagnosis.
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Sjogren's Syndrome and the Gastrointestinal Tract Source: Moisture Seekers Newsletter. 17(2): 1, 4-5. March 1999.
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Contact: Available from Sjogren's Syndrome Foundation, Inc. The Moisture Seekers, 333 North Broadway, Jericho, NY 11753. (800) 475-6473 or (516) 933-6365. Fax (516) 933-6368. Summary: This article on Sjogren's syndrome (SS) and the gastrointestinal tract is from a patient education newsletter for people with SS. The author outlines the areas where the gastroenterologist may play a role in caring for the person with SS, such as dealing with swallowing difficulties, dyspepsia (indigestion), diarrhea, and jaundice (usually due to primary biliary cirrhosis, or scarring). Difficulty in swallowing is usually due to the lack of saliva associated with SS, but occasionally it may be due to a blockage (postcricoid web) or a weakness of the muscle contractions involved in swallowing. In addition, those patients with SS are vulnerable to acid reflux, which causes heartburn symptoms. Children with SS are prone to achalasia, a type of muscle problem involving the lower esophageal sphincter. Dyspepsia (indigestion) is relatively common in patients with SS, as is inflammation of the stomach (gastritis). The author briefly discusses the role of the bacterium Helicobacter pylori in gastritis. There are at least two diseases associated with SS and diarrhea: chronic pancreatitis and celiac disease (gluten intolerance). The author notes that the link between SS and gastroenterological conditions is often via abnormal autoantibodies. ·
Hows and Whys of Celiac Disease: Presentation to the 21st Annual CSA Conference, Warwick, Rhode Island Source: Lifeline. 17(2): 1. Spring 1999. Contact: Available from Celiac Sprue Association-United States of America, Inc. P.O. Box 31700, Omaha, NE 68131. (402) 558-0600. Website: www.csaceliacs.org. Summary: This newsletter article reprints Dr. Z. Myron Falchuk's presentation to the 21st Annual Celiac Sprue Association (CSA) Conference, held in Warwick, Rhode Island, in 1999. Dr. Falchuk reviews the basics of celiac disease and discusses the diagnosis of celiac disease. Celiac disease, or gluten sensitive enteropathy, is an abnormality of the small intestine that interferes with the absorption of food. The diagnosis is relatively easy in patients with severe disease, but in patients with relatively modest symptoms, malabsorption conditions such as celiac disease are very difficult to pin down. The author notes that there are two presentations of celiac disease, one in childhood and one in adulthood. The role of genetics is considered. From celiac disease, the results can include protein malabsorption, muscle weakness, edema (fluid accumulation), malabsorption of vitamin D, hypocalcemia (which can result in thin bones), and vitamin A malabsorption (which can result in
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night blindness). The author considers other diseases that may present with or as malabsorption and reviews the use of an organ culture model system that can be used for research on celiac disease. This model focuses in on the immune system factors of celiac disease.
Academic Periodicals covering Celiac Disease Academic periodicals can be a highly technical yet valuable source of information on celiac disease. We have compiled the following list of periodicals known to publish articles relating to celiac disease and which are currently indexed within the National Library of Medicine’s PubMed database (follow hyperlinks to view more information, summaries, etc., for each). In addition to these sources, to keep current on articles written on celiac disease published by any of the periodicals listed below, you can simply follow the hyperlink indicated or go to the following Web site: www.ncbi.nlm.nih.gov/pubmed. Type the periodical’s name into the search box to find the latest studies published. If you want complete details about the historical contents of a periodical, you can also visit http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi. Here, type in the name of the journal or its abbreviation, and you will receive an index of published articles. At http://locatorplus.gov/ you can retrieve more indexing information on medical periodicals (e.g. the name of the publisher). Select the button “Search LOCATORplus.” Then type in the name of the journal and select the advanced search option “Journal Title Search.” The following is a sample of periodicals which publish articles on celiac disease: ·
Gastroenterology Nursing : the Official Journal of the Society of Gastroenterology Nurses and Associates. (Gastroenterol Nurs) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ga stroenterology+Nursing+:+the+Official+Journal+of+the+Society+of+Gas troenterology+Nurses+and+Associates&dispmax=20&dispstart=0
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Gastrointestinal Endoscopy. (Gastrointest Endosc) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ga strointestinal+Endoscopy&dispmax=20&dispstart=0
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·
Journal of Pediatric Gastroenterology and Nutrition. (J Pediatr Gastroenterol Nutr) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Jo urnal+of+Pediatric+Gastroenterology+and+Nutrition&dispmax=20&dis pstart=0
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The American Journal of Gastroenterology. (Am J Gastroenterol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Th e+American+Journal+of+Gastroenterology&dispmax=20&dispstart=0
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The American Journal of Medicine. (Am J Med) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Th e+American+Journal+of+Medicine&dispmax=20&dispstart=0
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The Journal of General Psychology. (J Gen Psychol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Th e+Journal+of+General+Psychology&dispmax=20&dispstart=0
Vocabulary Builder Abortion: 1. the premature expulsion from the uterus of the products of conception - of the embryo, or of a nonviable fetus. The four classic symptoms, usually present in each type of abortion, are uterine contractions, uterine haemorrhage, softening and dilatation of the cervix, and presentation or expulsion of all or part of the products of conception. 2. premature stoppage of a natural or a pathological process. [EU] Adverse: Harmful. [EU] Blindness: The inability to see or the loss or absence of perception of visual stimuli. This condition may be the result of eye diseases; optic nerve diseases; optic chiasm diseases; or brain diseases affecting the visual pathways or occipital lobe. [NIH] Cardiology: The study of the heart, its physiology, and its functions. [NIH] Edema: Excessive amount of watery fluid accumulated in the intercellular spaces, most commonly present in subcutaneous tissue. [NIH] Epidemic: Occurring suddenly in numbers clearly in excess of normal expectancy; said especially of infectious diseases but applied also to any disease, injury, or other health-related event occurring in such outbreaks. [EU] Gynecology: A medical-surgical specialty concerned with the physiology and disorders primarily of the female genital tract, as well as female
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endocrinology and reproductive physiology. [NIH] Hormones: Chemical substances having a specific regulatory effect on the activity of a certain organ or organs. The term was originally applied to substances secreted by various endocrine glands and transported in the bloodstream to the target organs. It is sometimes extended to include those substances that are not produced by the endocrine glands but that have similar effects. [NIH] Immunogenetics: A branch of genetics which deals with the genetic basis of the immune response. [NIH] Intermittent: Occurring at separated intervals; having periods of cessation of activity. [EU] Obstetrics: A medical-surgical specialty concerned with management and care of women during pregnancy, parturition, and the puerperium. [NIH] Prednisone: A synthetic anti-inflammatory glucocorticoid derived from cortisone. It is biologically inert and converted to prednisolone in the liver. [NIH]
Progressive: Advancing; going forward; going from bad to worse; increasing in scope or severity. [EU] Puberty: The period during which the secondary sex characteristics begin to develop and the capability of sexual reproduction is attained. [EU] Respiratory: Pertaining to respiration. [EU] Saliva: The clear, viscous fluid secreted by the salivary glands and mucous glands of the mouth. It contains mucins, water, organic salts, and ptylin. [NIH] Sphincter: A ringlike band of muscle fibres that constricts a passage or closes a natural orifice; called also musculus sphincter. [EU] Thinness: A state of insufficient flesh on the body usually defined as having a body weight less than skeletal and physical standards. [NIH] Vaccine: A suspension of attenuated or killed microorganisms (bacteria, viruses, or rickettsiae), administered for the prevention, amelioration or treatment of infectious diseases. [EU]
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CHAPTER 9. PHYSICIAN GUIDELINES AND DATABASES Overview Doctors and medical researchers rely on a number of information sources to help patients with their conditions. Many will subscribe to journals or newsletters published by their professional associations or refer to specialized textbooks or clinical guides published for the medical profession. In this chapter, we focus on databases and Internet-based guidelines created or written for this professional audience.
NIH Guidelines For the more common diseases, The National Institutes of Health publish guidelines that are frequently consulted by physicians. Publications are typically written by one or more of the various NIH Institutes. For physician guidelines, commonly referred to as “clinical” or “professional” guidelines, you can visit the following Institutes: ·
Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm
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National Institute of General Medical Sciences (NIGMS); fact sheets available at http://www.nigms.nih.gov/news/facts/
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National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines: http://www.nlm.nih.gov/medlineplus/healthtopics.html
·
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK); guidelines available at http://www.niddk.nih.gov/health/health.htm
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NIH Databases In addition to the various Institutes of Health that publish professional guidelines, the NIH has designed a number of databases for professionals.33 Physician-oriented resources provide a wide variety of information related to the biomedical and health sciences, both past and present. The format of these resources varies. Searchable databases, bibliographic citations, full text articles (when available), archival collections, and images are all available. The following are referenced by the National Library of Medicine:34 ·
Bioethics: Access to published literature on the ethical, legal and public policy issues surrounding healthcare and biomedical research. This information is provided in conjunction with the Kennedy Institute of Ethics located at Georgetown University, Washington, D.C.: http://www.nlm.nih.gov/databases/databases_bioethics.html
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HIV/AIDS Resources: Describes various links and databases dedicated to HIV/AIDS research: http://www.nlm.nih.gov/pubs/factsheets/aidsinfs.html
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NLM Online Exhibitions: Describes “Exhibitions in the History of Medicine”: http://www.nlm.nih.gov/exhibition/exhibition.html. Additional resources for historical scholarship in medicine: http://www.nlm.nih.gov/hmd/hmd.html
·
Biotechnology Information: Access to public databases. The National Center for Biotechnology Information conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information for the better understanding of molecular processes affecting human health and disease: http://www.ncbi.nlm.nih.gov/
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Population Information: The National Library of Medicine provides access to worldwide coverage of population, family planning, and related health issues, including family planning technology and programs, fertility, and population law and policy: http://www.nlm.nih.gov/databases/databases_population.html
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Cancer Information: Access to caner-oriented databases: http://www.nlm.nih.gov/databases/databases_cancer.html
Remember, for the general public, the National Library of Medicine recommends the databases referenced in MEDLINEplus (http://medlineplus.gov/ or http://www.nlm.nih.gov/medlineplus/databases.html). 34 See http://www.nlm.nih.gov/databases/databases.html. 33
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·
Profiles in Science: Offering the archival collections of prominent twentieth-century biomedical scientists to the public through modern digital technology: http://www.profiles.nlm.nih.gov/
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Chemical Information: Provides links to various chemical databases and references: http://sis.nlm.nih.gov/Chem/ChemMain.html
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Clinical Alerts: Reports the release of findings from the NIH-funded clinical trials where such release could significantly affect morbidity and mortality: http://www.nlm.nih.gov/databases/alerts/clinical_alerts.html
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Space Life Sciences: Provides links and information to space-based research (including NASA): http://www.nlm.nih.gov/databases/databases_space.html
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MEDLINE: Bibliographic database covering the fields of medicine, nursing, dentistry, veterinary medicine, the healthcare system, and the pre-clinical sciences: http://www.nlm.nih.gov/databases/databases_medline.html
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Toxicology and Environmental Health Information (TOXNET): Databases covering toxicology and environmental health: http://sis.nlm.nih.gov/Tox/ToxMain.html
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Visible Human Interface: Anatomically detailed, three-dimensional representations of normal male and female human bodies: http://www.nlm.nih.gov/research/visible/visible_human.html
While all of the above references may be of interest to physicians who study and treat celiac disease, the following are particularly noteworthy.
The Combined Health Information Database A comprehensive source of information on clinical guidelines written for professionals is the Combined Health Information Database. You will need to limit your search to “Brochure/Pamphlet,” “Fact Sheet,” or “Information Package” and celiac disease using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For the publication date, select “All Years,” select your preferred language, and the format option “Fact Sheet.” By making these selections and typing “celiac disease” (or synonyms) into the “For these words:” box above, you will only receive results on fact sheets dealing with celiac disease. The following is a sample result:
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·
Teachers' Information About Celiac Disease Source: Mississauga, Ontario: Canadian Celiac Association. 199x. 2 p. Contact: Available from Canadian Celiac Association. 6519B Mississauga Road, Mississauga, Ontario L5N 1A6. (416) 567-7195. Price: $.50 each for members, $1 each for nonmembers; plus shipping and handling. Summary: This brochure is designed to provide educators with basic information about celiac disease. Topics include a definition of celiac disease and of gluten; the symptoms, diagnosis and treatment of celiac disease; considerations for the celiac child at school; and the important role an understanding and supportive teacher can play in the life of a child with celiac disease. A list of the chapters of the Canadian Celiac Association, as well as the contact information for the central branch, is included.
·
Research Report on Dermatitis Herpetiformis Source: Seattle, WA: Gluten Intolerance Group of North America. 1993. 17 p. Contact: Available from Gluten Intolerance Group of North America. P.O. Box 23053, Seattle, WA 98102-0353. (206) 325-6980. Price: $5; plus shipping and handling. Summary: This document provides an overview of dermatitis herpetiformis (DH), a common complication in people with celiac disease or gluten intolerance. Written in a question-and-answer format, the document discusses the appearance of DH; the body areas most likely to have DH eruptions; variations in severity; relationship between hormone levels and DH eruptions; demographics; diagnosis; other IgA skin disorders that mimic DH; treatment options for DH; medications used and side effects of each, including dapsone, sulphapyridine, and sulphamethoxy-pyridazine; choosing diet versus medication; other substances that can trigger an outbreak of DH, including cleaning products; the use of elemental diets in DH; tests for antibodies as diagnostic tools; recent research on diagnosis; advances in drug therapy, including the use of cyclosporin; epidemiological information; and disorders or conditions associated with DH, including thyroid disease, other autoimmune disorders, low gastric acid secretion, lymphoma, and dental enamel defects. One chart lists toll-free telephone numbers for the major manufacturers of cleaning products. 21 references.
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Foreign Travel on a Gluten-Restricted, Gliadin-free Diet Source: Gluten Intolerance Group Newsletter. 16(2): 7-8. 1991.
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Contact: Available from Gluten Intolerance Group (GIG). P.O. Box 23053, Seattle, WA 98102. (206) 325-6980. ISSN: 0890-507X. Summary: Traveling to foreign countries can be a challenging experience for those with complex dietary restrictions. Difficulties can be compounded if the traveler doesn't speak the language. This article tells about the resources available to travelers through the Gluten Intolerance Group. Resources available include a list of foreign gluten intolerance support groups, the Marling Menu-Master series of booklets, and restaurant card messages translated into various languages. Ordering information for obtaining the Menu-Master booklets is included. Each of the four booklets (one each for Spain, France, Germany, and Italy) contains insights on traveling and understanding menus in each of the countries covered. ·
Restaurant Packet Source: Seattle, WA: Gluten Intolerance Group of North America (GIG). 1991. 7 p. Contact: Available from Gluten Intolerance Group of North America. P.O. Box 23053, Seattle, WA 98102-0353. (206) 325-6980. Price: $2.50 plus shipping and handling. Summary: This packet of materials is designed to help individuals with gluten intolerance enjoy eating at restaurants without compromising their health. The packet includes a Gluten Intolerance Group (GIG) identification card, an article about eating at restaurants, and a list of restaurant survival tips. The article covers topics including the types of restaurants where people with gluten intolerance will be most successful; the importance of working in tandem with the waiter or waitress to choose appropriate menu items; getting access to the chef; problems related to specific foods, including salads, salad dressings, soup, prime rib, other meats, sauces, French-fried foods, hash browns, and dairy products; eating at restaurants with children who have gluten intolerance; and showing appreciation to the restaurant staff. The third item lists 15 restaurant survival tips, including choice of restaurant, timing of the meal, explaining dietary restrictions, foods to avoid, working with the restaurant staff, tipping, and patronizing cooperative restaurants. The survival tips sheet depicts a restaurant menu with choices marked.
·
What the Teacher Should Know: Your Student has Celiac Disease Source: Omaha, NE: Celiac Sprue Association/United States of America. 1990. 2 p.
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Contact: Available from Celiac Sprue Association/United States of America, Inc. (CSA/USA). P.O. Box 31700, Omaha, NE 68131. (402) 5580600. Price: Up to four copies free. Summary: This general information brochure, written for classroom teachers, presents basic information about celiac sprue and about how to be comfortable with the student who has celiac sprue. Topics covered include a definition of celiac disease; gluten and where it is found; common symptoms of celiac disease; the diagnosis and treatment for celiac sprue; and suggestions for handling school-related situations and problems.
The NLM Gateway35 The NLM (National Library of Medicine) Gateway is a Web-based system that lets users search simultaneously in multiple retrieval systems at the U.S. National Library of Medicine (NLM). It allows users of NLM services to initiate searches from one Web interface, providing “one-stop searching” for many of NLM’s information resources or databases.36 One target audience for the Gateway is the Internet user who is new to NLM’s online resources and does not know what information is available or how best to search for it. This audience may include physicians and other healthcare providers, researchers, librarians, students, and, increasingly, patients, their families, and the public.37 To use the NLM Gateway, simply go to the search site at http://gateway.nlm.nih.gov/gw/Cmd. Type “celiac disease” (or synonyms) into the search box and click “Search.” The results will be presented in a tabular form, indicating the number of references in each database category.
Adapted from NLM: http://gateway.nlm.nih.gov/gw/Cmd?Overview.x. The NLM Gateway is currently being developed by the Lister Hill National Center for Biomedical Communications (LHNCBC) at the National Library of Medicine (NLM) of the National Institutes of Health (NIH). 37 Other users may find the Gateway useful for an overall search of NLM’s information resources. Some searchers may locate what they need immediately, while others will utilize the Gateway as an adjunct tool to other NLM search services such as PubMed® and MEDLINEplus®. The Gateway connects users with multiple NLM retrieval systems while also providing a search interface for its own collections. These collections include various types of information that do not logically belong in PubMed, LOCATORplus, or other established NLM retrieval systems (e.g., meeting announcements and pre-1966 journal citations). The Gateway will provide access to the information found in an increasing number of NLM retrieval systems in several phases. 35 36
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Results Summary Category Items Found Journal Articles 343118 Books / Periodicals / Audio Visual 2561 Consumer Health 292 Meeting Abstracts 3093 Other Collections 100 Total 349164 HSTAT38 HSTAT is a free, Web-based resource that provides access to full-text documents used in healthcare decision-making.39 HSTAT’s audience includes healthcare providers, health service researchers, policy makers, insurance companies, consumers, and the information professionals who serve these groups. HSTAT provides access to a wide variety of publications, including clinical practice guidelines, quick-reference guides for clinicians, consumer health brochures, evidence reports and technology assessments from the Agency for Healthcare Research and Quality (AHRQ), as well as AHRQ’s Put Prevention Into Practice.40 Simply search by “celiac disease” (or synonyms) at the following Web site: http://text.nlm.nih.gov.
Coffee Break: Tutorials for Biologists41 Some patients may wish to have access to a general healthcare site that takes a scientific view of the news and covers recent breakthroughs in biology that may one day assist physicians in developing treatments. To this end, we recommend “Coffee Break,” a collection of short reports on recent biological discoveries. Each report incorporates interactive tutorials that demonstrate Adapted from HSTAT: http://www.nlm.nih.gov/pubs/factsheets/hstat.html. The HSTAT URL is http://hstat.nlm.nih.gov/. 40 Other important documents in HSTAT include: the National Institutes of Health (NIH) Consensus Conference Reports and Technology Assessment Reports; the HIV/AIDS Treatment Information Service (ATIS) resource documents; the Substance Abuse and Mental Health Services Administration’s Center for Substance Abuse Treatment (SAMHSA/CSAT) Treatment Improvement Protocols (TIP) and Center for Substance Abuse Prevention (SAMHSA/CSAP) Prevention Enhancement Protocols System (PEPS); the Public Health Service (PHS) Preventive Services Task Force’s Guide to Clinical Preventive Services; the independent, nonfederal Task Force on Community Services Guide to Community Preventive Services; and the Health Technology Advisory Committee (HTAC) of the Minnesota Health Care Commission (MHCC) health technology evaluations. 41 Adapted from http://www.ncbi.nlm.nih.gov/Coffeebreak/Archive/FAQ.html. 38 39
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how bioinformatics tools are used as a part of the research process. Currently, all Coffee Breaks are written by NCBI staff.42 Each report is about 400 words and is usually based on a discovery reported in one or more articles from recently published, peer-reviewed literature.43 This site has new articles every few weeks, so it can be considered an online magazine of sorts, and intended for general background information. You can access the Coffee Break Web site at http://www.ncbi.nlm.nih.gov/Coffeebreak/.
Other Commercial Databases In addition to resources maintained by official agencies, other databases exist that are commercial ventures addressing medical professionals. Here are a few examples that may interest you: ·
CliniWeb International: Index and table of contents to selected clinical information on the Internet; see http://www.ohsu.edu/cliniweb/.
·
Image Engine: Multimedia electronic medical record system that integrates a wide range of digitized clinical images with textual data stored in the University of Pittsburgh Medical Center’s MARS electronic medical record system; see the following Web site: http://www.cml.upmc.edu/cml/imageengine/imageEngine.html.
·
Medical World Search: Searches full text from thousands of selected medical sites on the Internet; see http://www.mwsearch.com/.
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MedWeaver: Prototype system that allows users to search differential diagnoses for any list of signs and symptoms, to search medical literature, and to explore relevant Web sites; see http://www.med.virginia.edu/~wmd4n/medweaver.html.
·
Metaphrase: Middleware component intended for use by both caregivers and medical records personnel. It converts the informal language generally used by caregivers into terms from formal, controlled vocabularies; see the following Web site: http://www.lexical.com/Metaphrase.html.
The figure that accompanies each article is frequently supplied by an expert external to NCBI, in which case the source of the figure is cited. The result is an interactive tutorial that tells a biological story. 43 After a brief introduction that sets the work described into a broader context, the report focuses on how a molecular understanding can provide explanations of observed biology and lead to therapies for diseases. Each vignette is accompanied by a figure and hypertext links that lead to a series of pages that interactively show how NCBI tools and resources are used in the research process. 42
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The Genome Project and Celiac Disease With all the discussion in the press about the Human Genome Project, it is only natural that physicians, researchers, and patients want to know about how human genes relate to celiac disease. In the following section, we will discuss databases and references used by physicians and scientists who work in this area.
Online Mendelian Inheritance in Man (OMIM) The Online Mendelian Inheritance in Man (OMIM) database is a catalog of human genes and genetic disorders authored and edited by Dr. Victor A. McKusick and his colleagues at Johns Hopkins and elsewhere. OMIM was developed for the World Wide Web by the National Center for Biotechnology Information (NCBI).44 The database contains textual information, pictures, and reference information. It also contains copious links to NCBI’s Entrez database of MEDLINE articles and sequence information. Go to http://www.ncbi.nlm.nih.gov/Omim/searchomim.html to search the database. Type “celiac disease” (or synonyms) in the search box, and click “Submit Search.” If too many results appear, you can narrow the search by adding the word “clinical.” Each report will have additional links to related research and databases. By following these links, especially the link titled “Database Links,” you will be exposed to numerous specialized databases that are largely used by the scientific community. These databases are overly technical and seldom used by the general public, but offer an abundance of information. The following is an example of the results you can obtain from the OMIM for celiac disease: ·
Celiac Disease Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?212750
Adapted from http://www.ncbi.nlm.nih.gov/. Established in 1988 as a national resource for molecular biology information, NCBI creates public databases, conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information--all for the better understanding of molecular processes affecting human health and disease.
44
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Genes and Disease (NCBI - Map) The Genes and Disease database is produced by the National Center for Biotechnology Information of the National Library of Medicine at the National Institutes of Health. Go to http://www.ncbi.nlm.nih.gov/disease/, and browse the system pages to have a full view of important conditions linked to human genes. Since this site is regularly updated, you may wish to re-visit it from time to time. The following systems and associated disorders are addressed: ·
Immune System: Fights invaders. Examples: Asthma, autoimmune polyglandular syndrome, Crohn’s disease, DiGeorge syndrome, familial Mediterranean fever, immunodeficiency with Hyper-IgM, severe combined immunodeficiency. Web site: http://www.ncbi.nlm.nih.gov/disease/Immune.html
·
Metabolism: Food and energy. Examples: Adreno-leukodystrophy, Atherosclerosis, Best disease, Gaucher disease, Glucose galactose malabsorption, Gyrate atrophy, Juvenile onset diabetes, Obesity, Paroxysmal nocturnal hemoglobinuria, Phenylketonuria, Refsum disease, Tangier disease, Tay-Sachs disease. Web site: http://www.ncbi.nlm.nih.gov/disease/Metabolism.html
·
Muscle and Bone: Movement and growth. Examples: Duchenne muscular dystrophy, Ellis-van Creveld syndrome, Marfan syndrome, myotonic dystrophy, spinal muscular atrophy. Web site: http://www.ncbi.nlm.nih.gov/disease/Muscle.html
·
Signals: Cellular messages. Examples: Ataxia telangiectasia, Baldness, Cockayne syndrome, Glaucoma, SRY: sex determination, Tuberous sclerosis, Waardenburg syndrome, Werner syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Signals.html
·
Transporters: Pumps and channels. Examples: Cystic Fibrosis, deafness, diastrophic dysplasia, Hemophilia A, long-QT syndrome, Menkes syndrome, Pendred syndrome, polycystic kidney disease, sickle cell anemia, Wilson’s disease, Zellweger syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Transporters.html Entrez
Entrez is a search and retrieval system that integrates several linked databases at the National Center for Biotechnology Information (NCBI). These databases include nucleotide sequences, protein sequences,
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macromolecular structures, whole genomes, and MEDLINE through PubMed. Entrez provides access to the following databases: ·
PubMed: Biomedical literature (PubMed), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed
·
Nucleotide Sequence Database (Genbank): Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Nucleotide
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Protein Sequence Database: Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Protein
·
Structure: Three-dimensional macromolecular structures, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Structure
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Genome: Complete genome assemblies, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Genome
·
PopSet: Population study data sets, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Popset
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OMIM: Online Mendelian Inheritance in Man, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM
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Taxonomy: Organisms in GenBank, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Taxonomy
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Books: Online books, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=books
·
ProbeSet: Gene Expression Omnibus (GEO), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo
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3D Domains: Domains from Entrez Structure, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo
·
NCBI’s Protein Sequence Information Survey Results: Web site: http://www.ncbi.nlm.nih.gov/About/proteinsurvey/
To access the Entrez system at the National Center for Biotechnology Information, go to http://www.ncbi.nlm.nih.gov/entrez/, and then select the database that you would like to search. The databases available are listed in the drop box next to “Search.” In the box next to “for,” enter “celiac disease” (or synonyms) and click “Go.”
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Jablonski’s Multiple Congenital Anomaly/Mental Retardation (MCA/MR) Syndromes Database45 This online resource can be quite useful. It has been developed to facilitate the identification and differentiation of syndromic entities. Special attention is given to the type of information that is usually limited or completely omitted in existing reference sources due to space limitations of the printed form. At http://www.nlm.nih.gov/mesh/jablonski/syndrome_toc/toc_a.html you can also search across syndromes using an alphabetical index. You can also search at http://www.nlm.nih.gov/mesh/jablonski/syndrome_db.html. The Genome Database46 Established at Johns Hopkins University in Baltimore, Maryland in 1990, the Genome Database (GDB) is the official central repository for genomic mapping data resulting from the Human Genome Initiative. In the spring of 1999, the Bioinformatics Supercomputing Centre (BiSC) at the Hospital for Sick Children in Toronto, Ontario assumed the management of GDB. The Human Genome Initiative is a worldwide research effort focusing on structural analysis of human DNA to determine the location and sequence of the estimated 100,000 human genes. In support of this project, GDB stores and curates data generated by researchers worldwide who are engaged in the mapping effort of the Human Genome Project (HGP). GDB’s mission is to provide scientists with an encyclopedia of the human genome which is continually revised and updated to reflect the current state of scientific knowledge. Although GDB has historically focused on gene mapping, its focus will broaden as the Genome Project moves from mapping to sequence, and finally, to functional analysis. To access the GDB, simply go to the following hyperlink: http://www.gdb.org/. Search “All Biological Data” by “Keyword.” Type “celiac disease” (or synonyms) into the search box, and review the results. If more than one word is used in the search box, then separate each one with the word “and” or “or” (using “or” might be useful when using synonyms). This database is extremely technical as it was created for specialists. The articles are the results which are the most accessible to non-professionals and Adapted from the National Library of Medicine: http://www.nlm.nih.gov/mesh/jablonski/about_syndrome.html. 46 Adapted from the Genome Database: http://gdbwww.gdb.org/gdb/aboutGDB.html#mission. 45
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often listed under the heading “Citations.” The contact names are also accessible to non-professionals.
Specialized References The following books are specialized references written for professionals interested in celiac disease (sorted alphabetically by title, hyperlinks provide rankings, information, and reviews at Amazon.com): · Blackwell’s Primary Care Essentials: Gastointestinal Disease by David W. Hay; Paperback, 1st edition (December 15, 2001), Blackwell Science Inc; ISBN: 0632045035; http://www.amazon.com/exec/obidos/ASIN/0632045035/icongroupinterna · Gastrointestinal Problems by Martin S. Lipsky, M.D. (Editor), Richard Sadovsky, M.D. (Editor); Paperback - 194 pages, 1st edition (August 15, 2000), Lippincott, Williams & Wilkins Publishers; ISBN: 0781720540; http://www.amazon.com/exec/obidos/ASIN/0781720540/icongroupinterna · Rome II: The Functional Gastrointestinal Disorders by Douglas A. Drossman (Editor); Paperback - 800 pages, 2nd edition (March 1, 2000), Degnon Associates Inc.; ISBN: 0965683729; http://www.amazon.com/exec/obidos/ASIN/0965683729/icongroupinterna
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CHAPTER 10. DISSERTATIONS ON CELIAC DISEASE Overview University researchers are active in studying almost all known diseases. The result of research is often published in the form of Doctoral or Master’s dissertations. You should understand, therefore, that applied diagnostic procedures and/or therapies can take many years to develop after the thesis that proposed the new technique or approach was written. In this chapter, we will give you a bibliography on recent dissertations relating to celiac disease. You can read about these in more detail using the Internet or your local medical library. We will also provide you with information on how to use the Internet to stay current on dissertations.
Dissertations on Celiac Disease ProQuest Digital Dissertations is the largest archive of academic dissertations available. From this archive, we have compiled the following list covering dissertations devoted to celiac disease. You will see that the information provided includes the dissertation’s title, its author, and the author’s institution. To read more about the following, simply use the Internet address indicated. The following covers recent dissertations dealing with celiac disease:
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·
Cyanogenic Glycoside Levels and Physicochemical Characteristics of Flour from Various Manihot Esculenta (cassava) Genotypes by Niba, Lorraine Lum; Phd from University of Maryland College Park, 2001, 239 pages http://wwwlib.umi.com/dissertations/fullcit/3009043
·
Physiological and Pathological Role of Zonulin in the Regulation of Intercellular Tight Junctions by Wang, Wenle; Phd from University of Maryland, Baltimore, 2001, 123 pages http://wwwlib.umi.com/dissertations/fullcit/3033621
Keeping Current As previously mentioned, an effective way to stay current on dissertations dedicated to celiac disease is to use the database called ProQuest Digital Dissertations via the Internet, located at the following Web address: http://wwwlib.umi.com/dissertations. The site allows you to freely access the last two years of citations and abstracts. Ask your medical librarian if the library has full and unlimited access to this database. From the library, you should be able to do more complete searches than with the limited 2-year access available to the general public.
Vocabulary Builder Glycoside: Any compound that contains a carbohydrate molecule (sugar), particularly any such natural product in plants, convertible, by hydrolytic cleavage, into sugar and a nonsugar component (aglycone), and named specifically for the sugar contained, as glucoside (glucose), pentoside (pentose), fructoside (fructose) etc. [EU]
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PART III. APPENDICES
ABOUT PART III Part III is a collection of appendices on general medical topics which may be of interest to patients with celiac disease and related conditions.
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APPENDIX A. RESEARCHING YOUR MEDICATIONS Overview There are a number of sources available on new or existing medications which could be prescribed to patients with celiac disease. While a number of hard copy or CD-Rom resources are available to patients and physicians for research purposes, a more flexible method is to use Internet-based databases. In this chapter, we will begin with a general overview of medications. We will then proceed to outline official recommendations on how you should view your medications. You may also want to research medications that you are currently taking for other conditions as they may interact with medications for celiac disease. Research can give you information on the side effects, interactions, and limitations of prescription drugs used in the treatment of celiac disease. Broadly speaking, there are two sources of information on approved medications: public sources and private sources. We will emphasize free-to-use public sources.
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Your Medications: The Basics47 The Agency for Health Care Research and Quality has published extremely useful guidelines on how you can best participate in the medication aspects of celiac disease. Taking medicines is not always as simple as swallowing a pill. It can involve many steps and decisions each day. The AHCRQ recommends that patients with celiac disease take part in treatment decisions. Do not be afraid to ask questions and talk about your concerns. By taking a moment to ask questions early, you may avoid problems later. Here are some points to cover each time a new medicine is prescribed: ·
Ask about all parts of your treatment, including diet changes, exercise, and medicines.
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Ask about the risks and benefits of each medicine or other treatment you might receive.
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Ask how often you or your doctor will check for side effects from a given medication.
Do not hesitate to ask what is important to you about your medicines. You may want a medicine with the fewest side effects, or the fewest doses to take each day. You may care most about cost, or how the medicine might affect how you live or work. Or, you may want the medicine your doctor believes will work the best. Telling your doctor will help him or her select the best treatment for you. Do not be afraid to “bother” your doctor with your concerns and questions about medications for celiac disease. You can also talk to a nurse or a pharmacist. They can help you better understand your treatment plan. Feel free to bring a friend or family member with you when you visit your doctor. Talking over your options with someone you trust can help you make better choices, especially if you are not feeling well. Specifically, ask your doctor the following: ·
The name of the medicine and what it is supposed to do.
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How and when to take the medicine, how much to take, and for how long.
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What food, drinks, other medicines, or activities you should avoid while taking the medicine.
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What side effects the medicine may have, and what to do if they occur.
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If you can get a refill, and how often.
47
This section is adapted from AHCRQ: http://www.ahcpr.gov/consumer/ncpiebro.htm.
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·
About any terms or directions you do not understand.
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What to do if you miss a dose.
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If there is written information you can take home (most pharmacies have information sheets on your prescription medicines; some even offer large-print or Spanish versions).
Do not forget to tell your doctor about all the medicines you are currently taking (not just those for celiac disease). This includes prescription medicines and the medicines that you buy over the counter. Then your doctor can avoid giving you a new medicine that may not work well with the medications you take now. When talking to your doctor, you may wish to prepare a list of medicines you currently take, the reason you take them, and how you take them. Be sure to include the following information for each: ·
Name of medicine
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Reason taken
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Dosage
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Time(s) of day
Also include any over-the-counter medicines, such as: ·
Laxatives
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Diet pills
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Vitamins
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Cold medicine
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Aspirin or other pain, headache, or fever medicine
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Cough medicine
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Allergy relief medicine
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Antacids
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Sleeping pills
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Others (include names)
Learning More about Your Medications Because of historical investments by various organizations and the emergence of the Internet, it has become rather simple to learn about the medications your doctor has recommended for celiac disease. One such
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source is the United States Pharmacopeia. In 1820, eleven physicians met in Washington, D.C. to establish the first compendium of standard drugs for the United States. They called this compendium the “U.S. Pharmacopeia (USP).” Today, the USP is a non-profit organization consisting of 800 volunteer scientists, eleven elected officials, and 400 representatives of state associations and colleges of medicine and pharmacy. The USP is located in Rockville, Maryland, and its home page is located at www.usp.org. The USP currently provides standards for over 3,700 medications. The resulting USP DIÒ Advice for the PatientÒ can be accessed through the National Library of Medicine of the National Institutes of Health. The database is partially derived from lists of federally approved medications in the Food and Drug Administration’s (FDA) Drug Approvals database.48 While the FDA database is rather large and difficult to navigate, the Phamacopeia is both user-friendly and free to use. It covers more than 9,000 prescription and over-the-counter medications. To access this database, simply type the following hyperlink into your Web browser: http://www.nlm.nih.gov/medlineplus/druginformation.html. To view examples of a given medication (brand names, category, description, preparation, proper use, precautions, side effects, etc.), simply follow the hyperlinks indicated within the United States Pharmacopoeia. It is important to read the disclaimer by the United States Pharmacopoeia (http://www.nlm.nih.gov/medlineplus/drugdisclaimer.html) before using the information provided. Of course, we as editors cannot be certain as to what medications you are taking. Therefore, we have compiled a list of medications associated with the treatment of celiac disease. Once again, due to space limitations, we only list a sample of medications and provide hyperlinks to ample documentation (e.g. typical dosage, side effects, drug-interaction risks, etc.).
Commercial Databases In addition to the medications listed in the USP above, a number of commercial sites are available by subscription to physicians and their institutions. You may be able to access these sources from your local medical library or your doctor’s office.
Though cumbersome, the FDA database can be freely browsed at the following site: www.fda.gov/cder/da/da.htm.
48
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Reuters Health Drug Database The Reuters Health Drug Database can be searched by keyword at the hyperlink: http://www.reutershealth.com/frame2/drug.html. The following medications are listed in the Reuters’ database as associated with celiac disease (including those with contraindications):49 ·
Cromolyn Sodium http://www.reutershealth.com/atoz/html/Cromolyn_Sodium.htm
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Cromolyn Sodium (Disodium Cromoglycate) http://www.reutershealth.com/atoz/html/Cromolyn_Sodium_(Disodi um_Cromoglycate).htm
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Hydrocortisone (Cortisol) http://www.reutershealth.com/atoz/html/Hydrocortisone_(Cortisol).htm
Mosby’s GenRx Mosby’s GenRx database (also available on CD-Rom and book format) covers 45,000 drug products including generics and international brands. It provides prescribing information, drug interactions, and patient information. Information in Mosby’s GenRx database can be obtained at the following hyperlink: http://www.genrx.com/Mosby/PhyGenRx/group.html. Physicians Desk Reference The Physicians Desk Reference database (also available in CD-Rom and book format) is a full-text drug database. The database is searchable by brand name, generic name or by indication. It features multiple drug interactions reports. Information can be obtained at the following hyperlink: http://physician.pdr.net/physician/templates/en/acl/psuser_t.htm.
Other Web Sites A number of additional Web sites discuss drug information. As an example, you may like to look at www.drugs.com which reproduces the information in the Pharmacopeia as well as commercial information. You may also want to consider the Web site of the Medical Letter, Inc. which allows users to
49
Adapted from A to Z Drug Facts by Facts and Comparisons.
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download articles on various drugs and therapeutics for a nominal fee: http://www.medletter.com/.
Contraindications and Interactions (Hidden Dangers) Some of the medications mentioned in the previous discussions can be problematic for patients with celiac disease--not because they are used in the treatment process, but because of contraindications, or side effects. Medications with contraindications are those that could react with drugs used to treat celiac disease or potentially create deleterious side effects in patients with celiac disease. You should ask your physician about any contraindications, especially as these might apply to other medications that you may be taking for common ailments. Drug-drug interactions occur when two or more drugs react with each other. This drug-drug interaction may cause you to experience an unexpected side effect. Drug interactions may make your medications less effective, cause unexpected side effects, or increase the action of a particular drug. Some drug interactions can even be harmful to you. Be sure to read the label every time you use a nonprescription or prescription drug, and take the time to learn about drug interactions. These precautions may be critical to your health. You can reduce the risk of potentially harmful drug interactions and side effects with a little bit of knowledge and common sense. Drug labels contain important information about ingredients, uses, warnings, and directions which you should take the time to read and understand. Labels also include warnings about possible drug interactions. Further, drug labels may change as new information becomes available. This is why it’s especially important to read the label every time you use a medication. When your doctor prescribes a new drug, discuss all over-thecounter and prescription medications, dietary supplements, vitamins, botanicals, minerals and herbals you take as well as the foods you eat. Ask your pharmacist for the package insert for each prescription drug you take. The package insert provides more information about potential drug interactions.
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A Final Warning At some point, you may hear of alternative medications from friends, relatives, or in the news media. Advertisements may suggest that certain alternative drugs can produce positive results for patients with celiac disease. Exercise caution--some of these drugs may have fraudulent claims, and others may actually hurt you. The Food and Drug Administration (FDA) is the official U.S. agency charged with discovering which medications are likely to improve the health of patients with celiac disease. The FDA warns patients to watch out for50: ·
Secret formulas (real scientists share what they know)
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Amazing breakthroughs or miracle cures (real breakthroughs don’t happen very often; when they do, real scientists do not call them amazing or miracles)
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Quick, painless, or guaranteed cures
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If it sounds too good to be true, it probably isn’t true.
If you have any questions about any kind of medical treatment, the FDA may have an office near you. Look for their number in the blue pages of the phone book. You can also contact the FDA through its toll-free number, 1888-INFO-FDA (1-888-463-6332), or on the World Wide Web at www.fda.gov.
General References In addition to the resources provided earlier in this chapter, the following general references describe medications (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): · Drug Development: Molecular Targets for Gi Diseases by Timothy S. Gaginella (Editor), Antonio Guglietta (Editor); Hardcover - 288 pages (December 1999), Humana Press; ISBN: 0896035891; http://www.amazon.com/exec/obidos/ASIN/0896035891/icongroupinterna · Drug Therapy for Gastrointestinal and Liver Diseases by Michael J.G. Farthing, M.D. (Editor), Anne B. Ballinger (Editor); Hardcover - 346 pages, 1st edition (August 15, 2001), Martin Dunitz Ltd.; ISBN: 1853177334; http://www.amazon.com/exec/obidos/ASIN/1853177334/icongroupinterna
50
This section has been adapted from http://www.fda.gov/opacom/lowlit/medfraud.html.
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· Immunopharmacology of the Gastrointestinal System (Handbook of Immunopharmacology) by John L. Wallace (Editor); Hardcover (October 1997), Academic Press; ISBN: 0127328602; http://www.amazon.com/exec/obidos/ASIN/0127328602/icongroupinterna · A Pharmacologic Approach to Gastrointestinal Disorders by James H. Lewis, M.D. (Editor); Hardcover – (February 1994), Lippincott, Williams & Wilkins; ISBN: 0683049704; http://www.amazon.com/exec/obidos/ASIN/0683049704/icongroupinterna
Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Cromolyn Sodium: A chromone complex that acts by inhibiting the release of chemical mediators from sensitized mast cells. It is used in the prophylactic treatment of both allergic and exercise-induced asthma, but does not affect an established asthmatic attack. [NIH] Pharmacist: A person trained to prepare and distribute medicines and to give information about them. [NIH]
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APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE Overview Complementary and alternative medicine (CAM) is one of the most contentious aspects of modern medical practice. You may have heard of these treatments on the radio or on television. Maybe you have seen articles written about these treatments in magazines, newspapers, or books. Perhaps your friends or doctor have mentioned alternatives. In this chapter, we will begin by giving you a broad perspective on complementary and alternative therapies. Next, we will introduce you to official information sources on CAM relating to celiac disease. Finally, at the conclusion of this chapter, we will provide a list of readings on celiac disease from various authors. We will begin, however, with the National Center for Complementary and Alternative Medicine’s (NCCAM) overview of complementary and alternative medicine.
What Is CAM?51 Complementary and alternative medicine (CAM) covers a broad range of healing philosophies, approaches, and therapies. Generally, it is defined as those treatments and healthcare practices which are not taught in medical schools, used in hospitals, or reimbursed by medical insurance companies. Many CAM therapies are termed “holistic,” which generally means that the healthcare practitioner considers the whole person, including physical, mental, emotional, and spiritual health. Some of these therapies are also known as “preventive,” which means that the practitioner educates and 51
Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/faq/index.html#what-is.
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treats the person to prevent health problems from arising, rather than treating symptoms after problems have occurred. People use CAM treatments and therapies in a variety of ways. Therapies are used alone (often referred to as alternative), in combination with other alternative therapies, or in addition to conventional treatment (sometimes referred to as complementary). Complementary and alternative medicine, or “integrative medicine,” includes a broad range of healing philosophies, approaches, and therapies. Some approaches are consistent with physiological principles of Western medicine, while others constitute healing systems with non-Western origins. While some therapies are far outside the realm of accepted Western medical theory and practice, others are becoming established in mainstream medicine. Complementary and alternative therapies are used in an effort to prevent illness, reduce stress, prevent or reduce side effects and symptoms, or control or cure disease. Some commonly used methods of complementary or alternative therapy include mind/body control interventions such as visualization and relaxation, manual healing including acupressure and massage, homeopathy, vitamins or herbal products, and acupuncture.
What Are the Domains of Alternative Medicine?52 The list of CAM practices changes continually. The reason being is that these new practices and therapies are often proved to be safe and effective, and therefore become generally accepted as “mainstream” healthcare practices. Today, CAM practices may be grouped within five major domains: (1) alternative medical systems, (2) mind-body interventions, (3) biologicallybased treatments, (4) manipulative and body-based methods, and (5) energy therapies. The individual systems and treatments comprising these categories are too numerous to list in this sourcebook. Thus, only limited examples are provided within each. Alternative Medical Systems Alternative medical systems involve complete systems of theory and practice that have evolved independent of, and often prior to, conventional biomedical approaches. Many are traditional systems of medicine that are
52
Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/classify/index.html.
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practiced by individual cultures throughout the world, including a number of venerable Asian approaches. Traditional oriental medicine emphasizes the balance or disturbances of qi (pronounced chi) or vital energy in health and disease, respectively. Traditional oriental medicine consists of a group of techniques and methods including acupuncture, herbal medicine, oriental massage, and qi gong (a form of energy therapy). Acupuncture involves stimulating specific anatomic points in the body for therapeutic purposes, usually by puncturing the skin with a thin needle. Ayurveda is India’s traditional system of medicine. Ayurvedic medicine (meaning “science of life”) is a comprehensive system of medicine that places equal emphasis on body, mind, and spirit. Ayurveda strives to restore the innate harmony of the individual. Some of the primary Ayurvedic treatments include diet, exercise, meditation, herbs, massage, exposure to sunlight, and controlled breathing. Other traditional healing systems have been developed by the world’s indigenous populations. These populations include Native American, Aboriginal, African, Middle Eastern, Tibetan, and Central and South American cultures. Homeopathy and naturopathy are also examples of complete alternative medicine systems. Homeopathic medicine is an unconventional Western system that is based on the principle that “like cures like,” i.e., that the same substance that in large doses produces the symptoms of an illness, in very minute doses cures it. Homeopathic health practitioners believe that the more dilute the remedy, the greater its potency. Therefore, they use small doses of specially prepared plant extracts and minerals to stimulate the body’s defense mechanisms and healing processes in order to treat illness. Naturopathic medicine is based on the theory that disease is a manifestation of alterations in the processes by which the body naturally heals itself and emphasizes health restoration rather than disease treatment. Naturopathic physicians employ an array of healing practices, including the following: diet and clinical nutrition, homeopathy, acupuncture, herbal medicine, hydrotherapy (the use of water in a range of temperatures and methods of applications), spinal and soft-tissue manipulation, physical therapies (such as those involving electrical currents, ultrasound, and light), therapeutic counseling, and pharmacology.
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Mind-Body Interventions Mind-body interventions employ a variety of techniques designed to facilitate the mind’s capacity to affect bodily function and symptoms. Only a select group of mind-body interventions having well-documented theoretical foundations are considered CAM. For example, patient education and cognitive-behavioral approaches are now considered “mainstream.” On the other hand, complementary and alternative medicine includes meditation, certain uses of hypnosis, dance, music, and art therapy, as well as prayer and mental healing.
Biological-Based Therapies This category of CAM includes natural and biological-based practices, interventions, and products, many of which overlap with conventional medicine’s use of dietary supplements. This category includes herbal, special dietary, orthomolecular, and individual biological therapies. Herbal therapy employs an individual herb or a mixture of herbs for healing purposes. An herb is a plant or plant part that produces and contains chemical substances that act upon the body. Special diet therapies, such as those proposed by Drs. Atkins, Ornish, Pritikin, and Weil, are believed to prevent and/or control illness as well as promote health. Orthomolecular therapies aim to treat disease with varying concentrations of chemicals such as magnesium, melatonin, and mega-doses of vitamins. Biological therapies include, for example, the use of laetrile and shark cartilage to treat cancer and the use of bee pollen to treat autoimmune and inflammatory diseases.
Manipulative and Body-Based Methods This category includes methods that are based on manipulation and/or movement of the body. For example, chiropractors focus on the relationship between structure and function, primarily pertaining to the spine, and how that relationship affects the preservation and restoration of health. Chiropractors use manipulative therapy as an integral treatment tool. In contrast, osteopaths place particular emphasis on the musculoskeletal system and practice osteopathic manipulation. Osteopaths believe that all of the body’s systems work together and that disturbances in one system may have an impact upon function elsewhere in the body. Massage therapists manipulate the soft tissues of the body to normalize those tissues.
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Energy Therapies Energy therapies focus on energy fields originating within the body (biofields) or those from other sources (electromagnetic fields). Biofield therapies are intended to affect energy fields (the existence of which is not yet experimentally proven) that surround and penetrate the human body. Some forms of energy therapy manipulate biofields by applying pressure and/or manipulating the body by placing the hands in or through these fields. Examples include Qi gong, Reiki and Therapeutic Touch. Qi gong is a component of traditional oriental medicine that combines movement, meditation, and regulation of breathing to enhance the flow of vital energy (qi) in the body, improve blood circulation, and enhance immune function. Reiki, the Japanese word representing Universal Life Energy, is based on the belief that, by channeling spiritual energy through the practitioner, the spirit is healed and, in turn, heals the physical body. Therapeutic Touch is derived from the ancient technique of “laying-on of hands.” It is based on the premises that the therapist’s healing force affects the patient’s recovery and that healing is promoted when the body’s energies are in balance. By passing their hands over the patient, these healers identify energy imbalances. Bioelectromagnetic-based therapies involve the unconventional use of electromagnetic fields to treat illnesses or manage pain. These therapies are often used to treat asthma, cancer, and migraine headaches. Types of electromagnetic fields which are manipulated in these therapies include pulsed fields, magnetic fields, and alternating current or direct current fields.
Can Alternatives Affect My Treatment? A critical issue in pursuing complementary alternatives mentioned thus far is the risk that these might have undesirable interactions with your medical treatment. It becomes all the more important to speak with your doctor who can offer advice on the use of alternatives. Official sources confirm this view. Though written for women, we find that the National Women’s Health Information Center’s advice on pursuing alternative medicine is appropriate for patients of both genders and all ages.53
53
Adapted from http://www.4woman.gov/faq/alternative.htm.
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Is It Okay to Want Both Traditional and Alternative Medicine? Should you wish to explore non-traditional types of treatment, be sure to discuss all issues concerning treatments and therapies with your healthcare provider, whether a physician or practitioner of complementary and alternative medicine. Competent healthcare management requires knowledge of both conventional and alternative therapies you are taking for the practitioner to have a complete picture of your treatment plan. The decision to use complementary and alternative treatments is an important one. Consider before selecting an alternative therapy, the safety and effectiveness of the therapy or treatment, the expertise and qualifications of the healthcare practitioner, and the quality of delivery. These topics should be considered when selecting any practitioner or therapy.
Finding CAM References on Celiac Disease Having read the previous discussion, you may be wondering which complementary or alternative treatments might be appropriate for celiac disease. For the remainder of this chapter, we will direct you to a number of official sources which can assist you in researching studies and publications. Some of these articles are rather technical, so some patience may be required.
National Center for Complementary and Alternative Medicine The National Center for Complementary and Alternative Medicine (NCCAM) of the National Institutes of Health (http://nccam.nih.gov) has created a link to the National Library of Medicine’s databases to allow patients to search for articles that specifically relate to celiac disease and complementary medicine. To search the database, go to the following Web site: www.nlm.nih.gov/nccam/camonpubmed.html. Select “CAM on PubMed.” Enter “celiac disease” (or synonyms) into the search box. Click “Go.” The following references provide information on particular aspects of complementary and alternative medicine (CAM) that are related to celiac disease: ·
51Cr-EDTA test for coeliac disease. Author(s): O'Mahony CP, Stevens FM, Bourke M, McCarthy CF, Weir DG, Feighery CF.
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Source: Lancet. 1984 June 16; 1(8390): 1354-5. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6145054&dopt=Abstract ·
51Cr-EDTA/14C-mannitol intestinal permeability test. Clinical use in screening for coeliac disease. Author(s): Fotherby KJ, Wraight EP, Neale G. Source: Scandinavian Journal of Gastroenterology. 1988 March; 23(2): 171-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3129775&dopt=Abstract
·
A persistent defect in intestinal permeability in coeliac disease demonstrated by a 51Cr-labelled EDTA absorption test. Author(s): Bjarnason I, Peters TJ, Veall N. Source: Lancet. 1983 February 12; 1(8320): 323-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6130333&dopt=Abstract
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Abnormal permeability precedes the development of a gluten sensitive enteropathy in Irish setter dogs. Author(s): Hall EJ, Batt RM. Source: Gut. 1991 July; 32(7): 749-53. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1906829&dopt=Abstract
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Absorption and excretion of cyanocobalamine after oral administration of a large dose in various conditions. Author(s): Raccuglia G, French A, Zarafonetis CJ. Source: Acta Haematologica. 1969; 42(1): 1-7. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=4982617&dopt=Abstract
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Arbutin absorption in human small intestine: a simple procedure for the determination of active sugar uptake in peroral biopsy specimens. Author(s): Semenza G, Bircher J, Mulhaupt E, Koide T, Pfenninger E, Marthaler T, Gmunder U, Haemmerli UP. Source: Clinica Chimica Acta; International Journal of Clinical Chemistry. 1969 August; 25(2): 213-9. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=5816599&dopt=Abstract
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·
Assessing the site of increased intestinal permeability in coeliac and inflammatory bowel disease. Author(s): Teahon K, Somasundaram S, Smith T, Menzies I, Bjarnason I. Source: Gut. 1996 June; 38(6): 864-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8984025&dopt=Abstract
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Celiac disease and diffuse T-cell lymphoma of the colon. Author(s): Pulte D, Murray J. Source: Gastrointestinal Endoscopy. 2001 March; 53(3): 379-81. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11231410&dopt=Abstract
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Celiac disease--a patient's perspective. Author(s): Lawrie J. Source: Gastroenterology Nursing : the Official Journal of the Society of Gastroenterology Nurses and Associates. 1992 October; 15(2): 66-9. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1420395&dopt=Abstract
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Celiac sprue. Author(s): Murphy D. Source: Gastroenterology Nursing : the Official Journal of the Society of Gastroenterology Nurses and Associates. 1995 July-August; 18(4): 133-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7654809&dopt=Abstract
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Cell production rate in mucosa of untreated coeliac disease. Author(s): Wright NA, Watson AJ, Morley AR, Appleton DR, Marks JM. Source: Gut. 1972 October; 13(10): 846. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=5087097&dopt=Abstract
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Characteristics of adult celiac disease in the USA: results of a national survey. Author(s): Green PHR, Stavropoulos SN, Panagi SG, Goldstein SL, Mcmahon DJ, Absan H, Neugut AI.
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Source: The American Journal of Gastroenterology. 2001 January; 96(1): 126-31. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11197241&dopt=Abstract ·
Chronic fatigue syndrome: oxidative stress and dietary modifications. Author(s): Logan AC, Wong C. Source: Alternative Medicine Review : a Journal of Clinical Therapeutic. 2001 October; 6(5): 450-9. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11703165&dopt=Abstract
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Cimetidine as an adjunct to oral enzymes in the treatment of malabsorption due to cystic fibrosis. Author(s): de Bieville F, Neijens HJ, Fernandes J, van Caillie M, Kerrebijn KF. Source: Acta Paediatr Scand. 1981 January; 70(1): 33-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6908433&dopt=Abstract
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Coeliac disease in children of Asian immigrants. Author(s): Nelson R, McNeish AS, Anderson CM. Source: Lancet. 1973 February 17; 1(7799): 348-50. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=4121938&dopt=Abstract
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Coeliac disease: an analysis of Coeliac Society membership records. Author(s): Carrington JM. Source: N Z Med J. 1986 April 23; 99(800): 279-81. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3458081&dopt=Abstract
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Comparative effects of antacids, cimetidine and enteric coating on the therapeutic response to oral enzymes in severe pancreatic insufficiency. Author(s): Regan PT, Malagelada JR, DiMagno EP, Glanzman SL, Go VL. Source: The New England Journal of Medicine. 1977 October 20; 297(16): 854-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=20572&dopt=Abstract
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Comparison between the cellobiose/mannitol and 51Cr-labelled ethylenediaminetetra-acetate absorption tests in the detection of coeliac
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disease. Author(s): Martines D, Morris AI, Gilmore IT, Williams A, Stockdale H, Critchley M, Smith GA, Billington D. Source: Clinical Science (London, England : 1979). 1988 October; 75(4): 375-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3143512&dopt=Abstract ·
Comparison of four markers of intestinal permeability in control subjects and patients with coeliac disease. Author(s): Bjarnason I, Maxton D, Reynolds AP, Catt S, Peters TJ, Menzies IS. Source: Scandinavian Journal of Gastroenterology. 1994 July; 29(7): 630-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7939400&dopt=Abstract
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Diarrhoeae in thyroid medullary carcinoma: role of prostaglandins and therapeutic effect of nutmeg. Author(s): Barrowman JA, Bennett A, Hillenbrand P, Rolles K, Pollock DJ, Wright JT. Source: British Medical Journal. 1975 July 5; 3(5974): 11-2. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1169097&dopt=Abstract
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Diet therapy in gastrointestinal disease: a commentary. Author(s): Arvanitakis C. Source: J Am Diet Assoc. 1979 October; 75(4): 449-52. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=479489&dopt=Abstract
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Dietary analysis in symptomatic patients with coeliac disease on a gluten-free diet: the role of trace amounts of gluten and non-gluten food intolerances. Author(s): Faulkner-Hogg KB, Selby WS, Loblay RH. Source: Scandinavian Journal of Gastroenterology. 1999 August; 34(8): 784-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10499479&dopt=Abstract
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Dietary fiber in pancreatic disease: effect of high fiber diet on fat malabsorption in pancreatic insufficiency and in vitro study of the
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interaction of dietary fiber with pancreatic enzymes. Author(s): Dutta SK, Hlasko J. Source: The American Journal of Clinical Nutrition. 1985 March; 41(3): 517-25. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2579539&dopt=Abstract ·
Fasting breath hydrogen in celiac disease. Author(s): Corazza GR, Strocchi A, Gasbarrini G. Source: Gastroenterology. 1987 July; 93(1): 53-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3582915&dopt=Abstract
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In vivo induction of gliadin-mediated enterocyte damage in rats by the mannosidase inhibitor, swainsonine: a possible animal model for celiac disease. Author(s): Kottgen E, Beiswenger M, James LF, Bauer C. Source: Gastroenterology. 1988 July; 95(1): 100-6. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3131176&dopt=Abstract
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Increased prevalence of celiac disease in girls with Turner syndrome detected using antibodies to endomysium and tissue transglutaminase. Author(s): Gillett PM, Gillett HR, Israel DM, Metzger DL, Stewart L, Chanoine JP, Freeman HJ. Source: Canadian Journal of Gastroenterology = Journal Canadien De Gastroenterologie. 2000 December; 14(11): 915-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11125180&dopt=Abstract
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Intestinal permeability to [51Cr]EDTA in children with Crohn's disease and celiac disease. Author(s): Turck D, Ythier H, Maquet E, Deveaux M, Marchandise X, Farriaux JP, Fontaine G. Source: Journal of Pediatric Gastroenterology and Nutrition. 1987 JulyAugust; 6(4): 535-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3123634&dopt=Abstract
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Osteomalacia and celiac disease: response to 25-hydroxyvitamin D. Author(s): Hepner GW, Jowsey J, Arnaud C, Gordon S, Black J, Roginsky M, Moo HF, Young JF.
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Source: The American Journal of Medicine. 1978 December; 65(6): 101520. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=742623&dopt=Abstract ·
Striking differences in the incidence of childhood celiac disease between Denmark and Sweden: a plausible explanation. Author(s): Weile B, Cavell B, Nivenius K, Krasilnikoff PA. Source: Journal of Pediatric Gastroenterology and Nutrition. 1995 July; 21(1): 64-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8576817&dopt=Abstract
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Survey of gastroenterologists on the diagnosis and treatment of adult patients with celiac disease in British Columbia. Author(s): Freeman HJ. Source: Canadian Journal of Gastroenterology = Journal Canadien De Gastroenterologie. 1998 March; 12(2): 149-52. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9559209&dopt=Abstract
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Untractable diarrhea due to late onset celiac disease of the adult following pancreatoduodenectomy. Author(s): Boggi U, Bellini R, Rossetti E, Pietrabissa A, Mosca F. Source: Hepatogastroenterology. 2001 July-August; 48(40): 1030-2. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11490792&dopt=Abstract
Additional Web Resources A number of additional Web sites offer encyclopedic information covering CAM and related topics. The following is a representative sample: ·
Alternative Medicine Foundation, Inc.: http://www.herbmed.org/
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AOL: http://search.aol.com/cat.adp?id=169&layer=&from=subcats
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Chinese Medicine: http://www.newcenturynutrition.com/
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drkoop.comÒ: http://www.drkoop.com/InteractiveMedicine/IndexC.html
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Family Village: http://www.familyvillage.wisc.edu/med_altn.htm
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Google: http://directory.google.com/Top/Health/Alternative/
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Healthnotes: http://www.thedacare.org/healthnotes/
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Open Directory Project: http://dmoz.org/Health/Alternative/
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TPN.com: http://www.tnp.com/
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Yahoo.com: http://dir.yahoo.com/Health/Alternative_Medicine/
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WebMDÒHealth: http://my.webmd.com/drugs_and_herbs
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WellNet: http://www.wellnet.ca/herbsa-c.htm
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WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html
The following is a specific Web list relating to celiac disease; please note that any particular subject below may indicate either a therapeutic use, or a contraindication (potential danger), and does not reflect an official recommendation: ·
General Overview Celiac Disease Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Celiac_Disease.htm Celiac disease Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsLookups/Uses/celi acdisease.html
·
Herbs and Supplements Acidophilus Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Blackberry Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm
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Bladderwrack Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Blueberry Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Bovine Colostrum Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Brewer's Yeast Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Carob Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Chamomile Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Chymotrypsin Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Colostrum Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Cranesbill Source: Healthnotes, Inc.; www.healthnotes.com
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Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Digestive Enzymes Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Enzymes.htm Digestive enzymes Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525,100 51,00.html Fiber Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Glucocorticoids Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Celiac_Disease.htm Goldenseal Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Herbal Medicine Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Lactase Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Lipase Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Lipase.htm
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Lipase Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Lipas ecs.html Marshmallow Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Oak Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Probiotics Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Psyllium Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Raspberry Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Trypsin Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm ·
Related Conditions Anemia Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Anemi acc.html
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Canker Sores Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Canker_Sores.htm Dermatitis Herpetiformis Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Dermatitis_Herpetifo rmis.htm Diarrhea Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Immune Function Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Immune_Function.htm Indigestion, Heartburn, and Low Stomach Acidity Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Indigestion.htm Infection Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Infection.htm Malabsorption Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Malabsorption.htm Pancreatic Insufficiency Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Pancreatic_Insufficie ncy.htm
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Vitamin B12 Deficiency Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Vitamin_B12_Deficie ncy.htm
General References A good place to find general background information on CAM is the National Library of Medicine. It has prepared within the MEDLINEplus system an information topic page dedicated to complementary and alternative medicine. To access this page, go to the MEDLINEplus site at: www.nlm.nih.gov/medlineplus/alternativemedicine.html. This Web site provides a general overview of various topics and can lead to a number of general sources. The following additional references describe, in broad terms, alternative and complementary medicine (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · Gastrointestinal Disorders and Nutrition by Tonia Reinhard; Paperback 192 pages (January 24, 2002), McGraw-Hill Professional Publishing; ISBN: 0737303611; http://www.amazon.com/exec/obidos/ASIN/0737303611/icongroupinterna · Healthy Digestion the Natural Way: Preventing and Healing Heartburn, Constipation, Gas, Diarrhea, Inflammatory Bowel and Gallbladder Diseases, Ulcers, Irritable Bowel Syndrome, and More by D. Lindsey Berkson, et al; Paperback - 256 pages, 1st edition (February 2000), John Wiley & Sons; ISBN: 0471349623; http://www.amazon.com/exec/obidos/ASIN/0471349623/icongroupinterna · No More Heartburn: Stop the Pain in 30 Days--Naturally!: The Safe, Effective Way to Prevent and Heal Chronic Gastrointestinal Disorders by Sherry A. Rogers, M.D.; Paperback - 320 pages (February 2000), Kensington Publishing Corp.; ISBN: 1575665107; http://www.amazon.com/exec/obidos/ASIN/1575665107/icongroupinterna
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For additional information on complementary and alternative medicine, ask your doctor or write to: National Institutes of Health National Center for Complementary and Alternative Medicine Clearinghouse P. O. Box 8218 Silver Spring, MD 20907-8218
Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Mannitol: A diuretic and renal diagnostic aid related to sorbitol. It has little significant energy value as it is largely eliminated from the body before any metabolism can take place. It can be used to treat oliguria associated with kidney failure or other manifestations of inadequate renal function and has been used for determination of glomerular filtration rate. Mannitol is also commonly used as a research tool in cell biological studies, usually to control osmolarity. [NIH] Medullary: Pertaining to the marrow or to any medulla; resembling marrow. [EU] Peroral: Performed through or administered through the mouth. [EU] Prostaglandins: A group of compounds derived from unsaturated 20carbon fatty acids, primarily arachidonic acid, via the cyclooxygenase pathway. They are extremely potent mediators of a diverse group of physiological processes. [NIH]
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APPENDIX C. RESEARCHING NUTRITION Overview Since the time of Hippocrates, doctors have understood the importance of diet and nutrition to patients’ health and well-being. Since then, they have accumulated an impressive archive of studies and knowledge dedicated to this subject. Based on their experience, doctors and healthcare providers may recommend particular dietary supplements to patients with celiac disease. Any dietary recommendation is based on a patient’s age, body mass, gender, lifestyle, eating habits, food preferences, and health condition. It is therefore likely that different patients with celiac disease may be given different recommendations. Some recommendations may be directly related to celiac disease, while others may be more related to the patient’s general health. These recommendations, themselves, may differ from what official sources recommend for the average person. In this chapter we will begin by briefly reviewing the essentials of diet and nutrition that will broadly frame more detailed discussions of celiac disease. We will then show you how to find studies dedicated specifically to nutrition and celiac disease.
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Food and Nutrition: General Principles What Are Essential Foods? Food is generally viewed by official sources as consisting of six basic elements: (1) fluids, (2) carbohydrates, (3) protein, (4) fats, (5) vitamins, and (6) minerals. Consuming a combination of these elements is considered to be a healthy diet: ·
Fluids are essential to human life as 80-percent of the body is composed of water. Water is lost via urination, sweating, diarrhea, vomiting, diuretics (drugs that increase urination), caffeine, and physical exertion.
·
Carbohydrates are the main source for human energy (thermoregulation) and the bulk of typical diets. They are mostly classified as being either simple or complex. Simple carbohydrates include sugars which are often consumed in the form of cookies, candies, or cakes. Complex carbohydrates consist of starches and dietary fibers. Starches are consumed in the form of pastas, breads, potatoes, rice, and other foods. Soluble fibers can be eaten in the form of certain vegetables, fruits, oats, and legumes. Insoluble fibers include brown rice, whole grains, certain fruits, wheat bran and legumes.
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Proteins are eaten to build and repair human tissues. Some foods that are high in protein are also high in fat and calories. Food sources for protein include nuts, meat, fish, cheese, and other dairy products.
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Fats are consumed for both energy and the absorption of certain vitamins. There are many types of fats, with many general publications recommending the intake of unsaturated fats or those low in cholesterol.
Vitamins and minerals are fundamental to human health, growth, and, in some cases, disease prevention. Most are consumed in your diet (exceptions being vitamins K and D which are produced by intestinal bacteria and sunlight on the skin, respectively). Each vitamin and mineral plays a different role in health. The following outlines essential vitamins: ·
Vitamin A is important to the health of your eyes, hair, bones, and skin; sources of vitamin A include foods such as eggs, carrots, and cantaloupe.
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Vitamin B1, also known as thiamine, is important for your nervous system and energy production; food sources for thiamine include meat, peas, fortified cereals, bread, and whole grains.
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Vitamin B2, also known as riboflavin, is important for your nervous system and muscles, but is also involved in the release of proteins from
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nutrients; food sources for riboflavin include dairy products, leafy vegetables, meat, and eggs. ·
Vitamin B3, also known as niacin, is important for healthy skin and helps the body use energy; food sources for niacin include peas, peanuts, fish, and whole grains
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Vitamin B6, also known as pyridoxine, is important for the regulation of cells in the nervous system and is vital for blood formation; food sources for pyridoxine include bananas, whole grains, meat, and fish.
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Vitamin B12 is vital for a healthy nervous system and for the growth of red blood cells in bone marrow; food sources for vitamin B12 include yeast, milk, fish, eggs, and meat.
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Vitamin C allows the body’s immune system to fight various diseases, strengthens body tissue, and improves the body’s use of iron; food sources for vitamin C include a wide variety of fruits and vegetables.
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Vitamin D helps the body absorb calcium which strengthens bones and teeth; food sources for vitamin D include oily fish and dairy products.
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Vitamin E can help protect certain organs and tissues from various degenerative diseases; food sources for vitamin E include margarine, vegetables, eggs, and fish.
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Vitamin K is essential for bone formation and blood clotting; common food sources for vitamin K include leafy green vegetables.
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Folic Acid maintains healthy cells and blood and, when taken by a pregnant woman, can prevent her fetus from developing neural tube defects; food sources for folic acid include nuts, fortified breads, leafy green vegetables, and whole grains.
It should be noted that one can overdose on certain vitamins which become toxic if consumed in excess (e.g. vitamin A, D, E and K). Like vitamins, minerals are chemicals that are required by the body to remain in good health. Because the human body does not manufacture these chemicals internally, we obtain them from food and other dietary sources. The more important minerals include: ·
Calcium is needed for healthy bones, teeth, and muscles, but also helps the nervous system function; food sources for calcium include dry beans, peas, eggs, and dairy products.
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Chromium is helpful in regulating sugar levels in blood; food sources for chromium include egg yolks, raw sugar, cheese, nuts, beets, whole grains, and meat.
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·
Fluoride is used by the body to help prevent tooth decay and to reinforce bone strength; sources of fluoride include drinking water and certain brands of toothpaste.
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Iodine helps regulate the body’s use of energy by synthesizing into the hormone thyroxine; food sources include leafy green vegetables, nuts, egg yolks, and red meat.
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Iron helps maintain muscles and the formation of red blood cells and certain proteins; food sources for iron include meat, dairy products, eggs, and leafy green vegetables.
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Magnesium is important for the production of DNA, as well as for healthy teeth, bones, muscles, and nerves; food sources for magnesium include dried fruit, dark green vegetables, nuts, and seafood.
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Phosphorous is used by the body to work with calcium to form bones and teeth; food sources for phosphorous include eggs, meat, cereals, and dairy products.
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Selenium primarily helps maintain normal heart and liver functions; food sources for selenium include wholegrain cereals, fish, meat, and dairy products.
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Zinc helps wounds heal, the formation of sperm, and encourage rapid growth and energy; food sources include dried beans, shellfish, eggs, and nuts.
The United States government periodically publishes recommended diets and consumption levels of the various elements of food. Again, your doctor may encourage deviations from the average official recommendation based on your specific condition. To learn more about basic dietary guidelines, visit the Web site: http://www.health.gov/dietaryguidelines/. Based on these guidelines, many foods are required to list the nutrition levels on the food’s packaging. Labeling Requirements are listed at the following site maintained by the Food and Drug Administration: http://www.cfsan.fda.gov/~dms/labcons.html. When interpreting these requirements, the government recommends that consumers become familiar with the following abbreviations before reading FDA literature:54 ·
DVs (Daily Values): A new dietary reference term that will appear on the food label. It is made up of two sets of references, DRVs and RDIs.
·
DRVs (Daily Reference Values): A set of dietary references that applies to fat, saturated fat, cholesterol, carbohydrate, protein, fiber, sodium, and potassium.
54
Adapted from the FDA: http://www.fda.gov/fdac/special/foodlabel/dvs.html.
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·
RDIs (Reference Daily Intakes): A set of dietary references based on the Recommended Dietary Allowances for essential vitamins and minerals and, in selected groups, protein. The name “RDI” replaces the term “U.S. RDA.”
·
RDAs (Recommended Dietary Allowances): A set of estimated nutrient allowances established by the National Academy of Sciences. It is updated periodically to reflect current scientific knowledge. What Are Dietary Supplements?55
Dietary supplements are widely available through many commercial sources, including health food stores, grocery stores, pharmacies, and by mail. Dietary supplements are provided in many forms including tablets, capsules, powders, gel-tabs, extracts, and liquids. Historically in the United States, the most prevalent type of dietary supplement was a multivitamin/mineral tablet or capsule that was available in pharmacies, either by prescription or “over the counter.” Supplements containing strictly herbal preparations were less widely available. Currently in the United States, a wide array of supplement products are available, including vitamin, mineral, other nutrients, and botanical supplements as well as ingredients and extracts of animal and plant origin. The Office of Dietary Supplements (ODS) of the National Institutes of Health is the official agency of the United States which has the expressed goal of acquiring “new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold.”56 According to the ODS, dietary supplements can have an important impact on the prevention and management of disease and on the maintenance of health.57 The ODS notes that considerable research on the effects of dietary supplements has been conducted in Asia and Europe where This discussion has been adapted from the NIH: http://ods.od.nih.gov/whatare/whatare.html. 56 Contact: The Office of Dietary Supplements, National Institutes of Health, Building 31, Room 1B29, 31 Center Drive, MSC 2086, Bethesda, Maryland 20892-2086, Tel: (301) 435-2920, Fax: (301) 480-1845, E-mail:
[email protected]. 57 Adapted from http://ods.od.nih.gov/about/about.html. The Dietary Supplement Health and Education Act defines dietary supplements as “a product (other than tobacco) intended to supplement the diet that bears or contains one or more of the following dietary ingredients: a vitamin, mineral, amino acid, herb or other botanical; or a dietary substance for use to supplement the diet by increasing the total dietary intake; or a concentrate, metabolite, constituent, extract, or combination of any ingredient described above; and intended for ingestion in the form of a capsule, powder, softgel, or gelcap, and not represented as a conventional food or as a sole item of a meal or the diet.” 55
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the use of plant products, in particular, has a long tradition. However, the overwhelming majority of supplements have not been studied scientifically. To explore the role of dietary supplements in the improvement of health care, the ODS plans, organizes, and supports conferences, workshops, and symposia on scientific topics related to dietary supplements. The ODS often works in conjunction with other NIH Institutes and Centers, other government agencies, professional organizations, and public advocacy groups. To learn more about official information on dietary supplements, visit the ODS site at http://ods.od.nih.gov/whatare/whatare.html. Or contact: The Office of Dietary Supplements National Institutes of Health Building 31, Room 1B29 31 Center Drive, MSC 2086 Bethesda, Maryland 20892-2086 Tel: (301) 435-2920 Fax: (301) 480-1845 E-mail:
[email protected]
Finding Studies on Celiac Disease The NIH maintains an office dedicated to patient nutrition and diet. The National Institutes of Health’s Office of Dietary Supplements (ODS) offers a searchable bibliographic database called the IBIDS (International Bibliographic Information on Dietary Supplements). The IBIDS contains over 460,000 scientific citations and summaries about dietary supplements and nutrition as well as references to published international, scientific literature on dietary supplements such as vitamins, minerals, and botanicals.58 IBIDS is available to the public free of charge through the ODS Internet page: http://ods.od.nih.gov/databases/ibids.html. After entering the search area, you have three choices: (1) IBIDS Consumer Database, (2) Full IBIDS Database, or (3) Peer Reviewed Citations Only. We recommend that you start with the Consumer Database. While you may not find references for the topics that are of most interest to you, check back Adapted from http://ods.od.nih.gov. IBIDS is produced by the Office of Dietary Supplements (ODS) at the National Institutes of Health to assist the public, healthcare providers, educators, and researchers in locating credible, scientific information on dietary supplements. IBIDS was developed and will be maintained through an interagency partnership with the Food and Nutrition Information Center of the National Agricultural Library, U.S. Department of Agriculture.
58
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periodically as this database is frequently updated. More studies can be found by searching the Full IBIDS Database. Healthcare professionals and researchers generally use the third option, which lists peer-reviewed citations. In all cases, we suggest that you take advantage of the “Advanced Search” option that allows you to retrieve up to 100 fully explained references in a comprehensive format. Type “celiac disease” (or synonyms) into the search box. To narrow the search, you can also select the “Title” field. The following is a typical result when searching for recently indexed consumer information on celiac disease: ·
Bone mineral density, type 1 diabetes, and celiac disease. Source: Lunt, H Florkowski, C M Cook, H B Whitehead, M R DiabetesCare. 2001 April; 24(4): 791-2 0149-5992
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Effect of gluten-free diet on the metabolic control of type 1 diabetes in patients with diabetes and celiac disease. Source: Iafusco, D Rea, F Chiarelli, F Mohn, A Prisco, F Diabetes-Care. 2000 May; 23(5): 712-3 0149-5992
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Hypoglycemia and reduction of the insulin requirement as a sign of celiac disease in children with IDDM. Source: Iafusco, D Rea, F Prisco, F Diabetes-Care. 1998 August; 21(8): 1379-81 0149-5992
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Identification of the triggers of celiac sprue. Author(s): Division of Digestive Diseases and Nutrition, University of Massachusetts Medical Center, Worcester 01655. Source: Saltzman, J R Clifford, B D Nutr-Revolume 1994 September; 52(9): 317-9 0029-6643
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No effect of gluten-free diet on the metabolic control of type 1 diabetes in patients with diabetes and celiac disease. Retrospective and controlled prospective survey. Source: Kaukinen, K Salmi, J Lahtela, J Siljamaki Ojansuu, U Koivisto, A M Oksa, H Collin, P Diabetes-Care. 1999 October; 22(10): 1747-8 01495992
The following information is typical of that found when using the “Full IBIDS Database” when searching using “celiac disease” (or a synonym): ·
A survey of celiac-sprue patients: effect of dietary restrictions on religious practices. Author(s): Department of Psychology, Rutgers University, West Orange, NJ. Source: Bentley, A C J-Gen-Psychol. 1988 January; 115(1): 7-14 0022-1309
·
Anemia: monosymptomatic celiac disease. A report of 3 cases. Author(s): Department of Gastroenterology/C2, Academic Medical Center Amsterdam.
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Source: Depla, A C Bartelsman, J F Mulder, C J Tytgat, G N Hepatogastroenterology. 1990 February; 37(1): 90-1 0172-6390 ·
Colonic histopathology in untreated celiac sprue or refractory sprue: is it lymphocytic colitis or colonic lymphocytosis? Author(s): Department of Pathology, Baylor University Medical Center, Dallas, TX 75246, USA. Source: Fine, K D Lee, E L Meyer, R L Hum-Pathol. 1998 December; 29(12): 1433-40 0046-8177
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Colonic volvulus as a complication of celiac sprue. Author(s): Health Sciences Centre, University of Calgary, Alberta, Canada. Source: Koziol, K A Price, L M J-Clin-Gastroenterol. 1990 December; 12(6): 633-5 0192-0790
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Effect of two synthetic alpha-gliadin peptides on lymphocytes in celiac disease: identification of a novel class of opioid receptors. Source: Graf, L Horvath, K Walcz, E Berzetei, I Burnier, J Neuropeptides. 1987 Feb-March; 9(2): 113-22 0143-4179
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Endomysial antibodies in the diagnosis of celiac disease and the effect of gluten on antibody titers. Author(s): Ernest Witebsky Center for Immunology, Department of Microbiology, SUNY, Buffalo. Source: KuMarch, V Lerner, A Valeski, J E Beutner, E H Chorzelski, T P Rossi, T Immunol-Invest. 1989 Jan-May; 18(1-4): 533-44 0882-0139
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Growth failure and insulin-like growth factor (IGF-I) in childhood celiac disease. Author(s): Universitatskinderklinik, Wien. Source: Eichler, I Frisch, H Granditsch, G Klin-Wochenschr. 1991 November 15; 69(18): 825-9 0023-2173
·
Hyperamylasemia due to macroamylasemia in adult gluten enteropathy. Author(s): Department of Clinical Biochemistry, University of Pavia, Policlinico San Matteo, Italy. Source: Bonetti, G Serricchio, G Giudici, A Bettonagli, M Vadacca, G B Bruno, R Coslovich, E Moratti, R Scand-J-Clin-Lab-Invest. 1997 May; 57(3): 271-3 0036-5513
·
Immunoglobulin heavy-chain allotypes play a role in the clinical history of celiac disease. Author(s): Istituti di Patologia generale, Universita di Palermo, Italia. Source: Caruso, C Candore, G Lio, D Modica, M A Cataldo, F Maltese, I Marino, V Albeggiani, A Exp-Clin-Immunogenet. 1991; 8(2): 85-7 02549670
Researching Nutrition 205
·
Immunological aspects of diagnosis of celiac sprue in children. Source: Pozler, O Parizek, J Chylkova, V Nozicka, Z Fixa, B Belobradkova, I Kubikova, K Sb-Ved-Pr-Lek-Fak-Karlovy-UniverzityHradci-Kralove. 1989; 32(2): 169-233 0049-5514
·
Spectrum of expression of intestinal cellular immunity: proposal for a change in diagnostic criteria of celiac disease. Author(s): Gastrointestinal Unit, Western General Hospital, United Kingdom. Source: Ferguson, A Arranz, E O'Mahony, S Ann-Allergy. 1993 July; 71(1): 29-32 0003-4738
Federal Resources on Nutrition In addition to the IBIDS, the United States Department of Health and Human Services (HHS) and the United States Department of Agriculture (USDA) provide many sources of information on general nutrition and health. Recommended resources include: ·
healthfinder®, HHS’s gateway to health information, including diet and nutrition: http://www.healthfinder.gov/scripts/SearchContext.asp?topic=238&page=0
·
The United States Department of Agriculture’s Web site dedicated to nutrition information: www.nutrition.gov
·
The Food and Drug Administration’s Web site for federal food safety information: www.foodsafety.gov
·
The National Action Plan on Overweight and Obesity sponsored by the United States Surgeon General: http://www.surgeongeneral.gov/topics/obesity/
·
The Center for Food Safety and Applied Nutrition has an Internet site sponsored by the Food and Drug Administration and the Department of Health and Human Services: http://vm.cfsan.fda.gov/
·
Center for Nutrition Policy and Promotion sponsored by the United States Department of Agriculture: http://www.usda.gov/cnpp/
·
Food and Nutrition Information Center, National Agricultural Library sponsored by the United States Department of Agriculture: http://www.nal.usda.gov/fnic/
·
Food and Nutrition Service sponsored by the United States Department of Agriculture: http://www.fns.usda.gov/fns/
206 Celiac Disease
Additional Web Resources A number of additional Web sites offer encyclopedic information covering food and nutrition. The following is a representative sample: ·
AOL: http://search.aol.com/cat.adp?id=174&layer=&from=subcats
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Family Village: http://www.familyvillage.wisc.edu/med_nutrition.html
·
Google: http://directory.google.com/Top/Health/Nutrition/
·
Healthnotes: http://www.thedacare.org/healthnotes/
·
Open Directory Project: http://dmoz.org/Health/Nutrition/
·
Yahoo.com: http://dir.yahoo.com/Health/Nutrition/
·
WebMDÒHealth: http://my.webmd.com/nutrition
·
WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html
The following is a specific Web list relating to celiac disease; please note that any particular subject below may indicate either a therapeutic use, or a contraindication (potential danger), and does not reflect an official recommendation: ·
Vitamins Ascorbic Acid Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Folic Acid Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Folic_Acid.htm Folic acid Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525,887, 00.html
Researching Nutrition 207
Pyridoxine Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Celiac_Disease.htm Vitamin A Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Vitamin_A.htm Vitamin B6 Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Vitamin_B6.htm Vitamin D Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Vitamin_D.htm Vitamin K Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000246.html ·
Minerals Calcium Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Copper Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525,886, 00.html Folate Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm
208 Celiac Disease
Iron Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Iron.htm Magnesium Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Celiac_Disease.htm Magnesium Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Magnesium Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Magnesium.htm Potassium Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Zinc Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Zinc.htm Zinc Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Zincc s.html ·
Food and Diet Apples Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Applesauce Source: Healthnotes, Inc.; www.healthnotes.com
Researching Nutrition 209
Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Bananas Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Barley Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Celiac_Disease.htm Barley Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Food_Guide/Barley.htm Berries Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Coffee Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Cream Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Fruit Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Gluten-Free Diet Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Celiac_Disease.htm
210 Celiac Disease
Gluten-Free Diet Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Diet/Gluten_Free_Diet.htm Grains Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Celiac_Disease.htm Ice cream Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Milk Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Milk Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Celiac_Disease.htm Oats Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Celiac_Disease.htm Rice Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Rye Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Celiac_Disease.htm Rye Source: Healthnotes, Inc.; www.healthnotes.com
Researching Nutrition 211
Hyperlink: http://www.thedacare.org/healthnotes/Food_Guide/Rye.htm Soup Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Soy Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Celiac_Disease.htm Tea Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Water Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Weight Loss Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Celiac_Disease.htm Wheat Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Food_Guide/Wheat.htm Wheat Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm Wheat Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Celiac_Disease.htm
212 Celiac Disease
Wheat-Free Diet Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Diet/Wheat_Free_Diet.htm Yogurt Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Diarrhea.htm
Vocabulary Builder The following vocabulary builder defines words used in the references in this chapter that have not been defined in previous chapters: Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Degenerative: Undergoing degeneration : tending to degenerate; having the character of or involving degeneration; causing or tending to cause degeneration. [EU] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]
Lymphocytosis: effusion. [NIH]
Excess of normal lymphocytes in the blood or in any
Microbiology: The study of microorganisms such as fungi, bacteria, algae, archaea, and viruses. [NIH] Neuropeptides: Peptides released by neurons as intercellular messengers. Many neuropeptides are also hormones released by non-neuronal cells. [NIH] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Overdose: 1. to administer an excessive dose. 2. an excessive dose. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH]
Researching Nutrition 213
Refractory: Not readily yielding to treatment. [EU] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH]
Finding Medical Libraries 215
APPENDIX D. FINDING MEDICAL LIBRARIES Overview At a medical library you can find medical texts and reference books, consumer health publications, specialty newspapers and magazines, as well as medical journals. In this Appendix, we show you how to quickly find a medical library in your area.
Preparation Before going to the library, highlight the references mentioned in this sourcebook that you find interesting. Focus on those items that are not available via the Internet, and ask the reference librarian for help with your search. He or she may know of additional resources that could be helpful to you. Most importantly, your local public library and medical libraries have Interlibrary Loan programs with the National Library of Medicine (NLM), one of the largest medical collections in the world. According to the NLM, most of the literature in the general and historical collections of the National Library of Medicine is available on interlibrary loan to any library. NLM’s interlibrary loan services are only available to libraries. If you would like to access NLM medical literature, then visit a library in your area that can request the publications for you.59
59
Adapted from the NLM: http://www.nlm.nih.gov/psd/cas/interlibrary.html.
216 Celiac Disease
Finding a Local Medical Library The quickest method to locate medical libraries is to use the Internet-based directory published by the National Network of Libraries of Medicine (NN/LM). This network includes 4626 members and affiliates that provide many services to librarians, health professionals, and the public. To find a library in your area, simply visit http://nnlm.gov/members/adv.html or call 1-800-338-7657.
Medical Libraries Open to the Public In addition to the NN/LM, the National Library of Medicine (NLM) lists a number of libraries that are generally open to the public and have reference facilities. The following is the NLM’s list plus hyperlinks to each library Web site. These Web pages can provide information on hours of operation and other restrictions. The list below is a small sample of libraries recommended by the National Library of Medicine (sorted alphabetically by name of the U.S. state or Canadian province where the library is located):60 ·
Alabama: Health InfoNet of Jefferson County (Jefferson County Library Cooperative, Lister Hill Library of the Health Sciences), http://www.uab.edu/infonet/
·
Alabama: Richard M. Scrushy Library (American Sports Medicine Institute), http://www.asmi.org/LIBRARY.HTM
·
Arizona: Samaritan Regional Medical Center: The Learning Center (Samaritan Health System, Phoenix, Arizona), http://www.samaritan.edu/library/bannerlibs.htm
·
California: Kris Kelly Health Information Center (St. Joseph Health System), http://www.humboldt1.com/~kkhic/index.html
·
California: Community Health Library of Los Gatos (Community Health Library of Los Gatos), http://www.healthlib.org/orgresources.html
·
California: Consumer Health Program and Services (CHIPS) (County of Los Angeles Public Library, Los Angeles County Harbor-UCLA Medical Center Library) - Carson, CA, http://www.colapublib.org/services/chips.html
·
California: Gateway Health Library (Sutter Gould Medical Foundation)
·
California: Health Library (Stanford University Medical Center), http://www-med.stanford.edu/healthlibrary/
60
Abstracted from http://www.nlm.nih.gov/medlineplus/libraries.html.
Finding Medical Libraries 217
·
California: Patient Education Resource Center - Health Information and Resources (University of California, San Francisco), http://sfghdean.ucsf.edu/barnett/PERC/default.asp
·
California: Redwood Health Library (Petaluma Health Care District), http://www.phcd.org/rdwdlib.html
·
California: San José PlaneTree Health Library, http://planetreesanjose.org/
·
California: Sutter Resource Library (Sutter Hospitals Foundation), http://go.sutterhealth.org/comm/resc-library/sac-resources.html
·
California: University of California, Davis. Health Sciences Libraries
·
California: ValleyCare Health Library & Ryan Comer Cancer Resource Center (ValleyCare Health System), http://www.valleycare.com/library.html
·
California: Washington Community Health Resource Library (Washington Community Health Resource Library), http://www.healthlibrary.org/
·
Colorado: William V. Gervasini Memorial Library (Exempla Healthcare), http://www.exempla.org/conslib.htm
·
Connecticut: Hartford Hospital Health Science Libraries (Hartford Hospital), http://www.harthosp.org/library/
·
Connecticut: Healthnet: Connecticut Consumer Health Information Center (University of Connecticut Health Center, Lyman Maynard Stowe Library), http://library.uchc.edu/departm/hnet/
·
Connecticut: Waterbury Hospital Health Center Library (Waterbury Hospital), http://www.waterburyhospital.com/library/consumer.shtml
·
Delaware: Consumer Health Library (Christiana Care Health System, Eugene du Pont Preventive Medicine & Rehabilitation Institute), http://www.christianacare.org/health_guide/health_guide_pmri_health _info.cfm
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Delaware: Lewis B. Flinn Library (Delaware Academy of Medicine), http://www.delamed.org/chls.html
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Georgia: Family Resource Library (Medical College of Georgia), http://cmc.mcg.edu/kids_families/fam_resources/fam_res_lib/frl.htm
·
Georgia: Health Resource Center (Medical Center of Central Georgia), http://www.mccg.org/hrc/hrchome.asp
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Hawaii: Hawaii Medical Library: Consumer Health Information Service (Hawaii Medical Library), http://hml.org/CHIS/
218 Celiac Disease
·
Idaho: DeArmond Consumer Health Library (Kootenai Medical Center), http://www.nicon.org/DeArmond/index.htm
·
Illinois: Health Learning Center of Northwestern Memorial Hospital (Northwestern Memorial Hospital, Health Learning Center), http://www.nmh.org/health_info/hlc.html
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Illinois: Medical Library (OSF Saint Francis Medical Center), http://www.osfsaintfrancis.org/general/library/
·
Kentucky: Medical Library - Services for Patients, Families, Students & the Public (Central Baptist Hospital), http://www.centralbap.com/education/community/library.htm
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Kentucky: University of Kentucky - Health Information Library (University of Kentucky, Chandler Medical Center, Health Information Library), http://www.mc.uky.edu/PatientEd/
·
Louisiana: Alton Ochsner Medical Foundation Library (Alton Ochsner Medical Foundation), http://www.ochsner.org/library/
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Louisiana: Louisiana State University Health Sciences Center Medical Library-Shreveport, http://lib-sh.lsuhsc.edu/
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Maine: Franklin Memorial Hospital Medical Library (Franklin Memorial Hospital), http://www.fchn.org/fmh/lib.htm
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Maine: Gerrish-True Health Sciences Library (Central Maine Medical Center), http://www.cmmc.org/library/library.html
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Maine: Hadley Parrot Health Science Library (Eastern Maine Healthcare), http://www.emh.org/hll/hpl/guide.htm
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Maine: Maine Medical Center Library (Maine Medical Center), http://www.mmc.org/library/
·
Maine: Parkview Hospital, http://www.parkviewhospital.org/communit.htm#Library
·
Maine: Southern Maine Medical Center Health Sciences Library (Southern Maine Medical Center), http://www.smmc.org/services/service.php3?choice=10
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Maine: Stephens Memorial Hospital Health Information Library (Western Maine Health), http://www.wmhcc.com/hil_frame.html
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Manitoba, Canada: Consumer & Patient Health Information Service (University of Manitoba Libraries), http://www.umanitoba.ca/libraries/units/health/reference/chis.html
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Manitoba, Canada: J.W. Crane Memorial Library (Deer Lodge Centre), http://www.deerlodge.mb.ca/library/libraryservices.shtml
Finding Medical Libraries 219
·
Maryland: Health Information Center at the Wheaton Regional Library (Montgomery County, Md., Dept. of Public Libraries, Wheaton Regional Library), http://www.mont.lib.md.us/healthinfo/hic.asp
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Massachusetts: Baystate Medical Center Library (Baystate Health System), http://www.baystatehealth.com/1024/
·
Massachusetts: Boston University Medical Center Alumni Medical Library (Boston University Medical Center), http://medlibwww.bu.edu/library/lib.html
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Massachusetts: Lowell General Hospital Health Sciences Library (Lowell General Hospital), http://www.lowellgeneral.org/library/HomePageLinks/WWW.htm
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Massachusetts: Paul E. Woodard Health Sciences Library (New England Baptist Hospital), http://www.nebh.org/health_lib.asp
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Massachusetts: St. Luke’s Hospital Health Sciences Library (St. Luke’s Hospital), http://www.southcoast.org/library/
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Massachusetts: Treadwell Library Consumer Health Reference Center (Massachusetts General Hospital), http://www.mgh.harvard.edu/library/chrcindex.html
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Massachusetts: UMass HealthNet (University of Massachusetts Medical School), http://healthnet.umassmed.edu/
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Michigan: Botsford General Hospital Library - Consumer Health (Botsford General Hospital, Library & Internet Services), http://www.botsfordlibrary.org/consumer.htm
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Michigan: Helen DeRoy Medical Library (Providence Hospital and Medical Centers), http://www.providence-hospital.org/library/
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Michigan: Marquette General Hospital - Consumer Health Library (Marquette General Hospital, Health Information Center), http://www.mgh.org/center.html
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Michigan: Patient Education Resouce Center - University of Michigan Cancer Center (University of Michigan Comprehensive Cancer Center), http://www.cancer.med.umich.edu/learn/leares.htm
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Michigan: Sladen Library & Center for Health Information Resources Consumer Health Information, http://www.sladen.hfhs.org/library/consumer/index.html
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Montana: Center for Health Information (St. Patrick Hospital and Health Sciences Center), http://www.saintpatrick.org/chi/librarydetail.php3?ID=41
220 Celiac Disease
·
National: Consumer Health Library Directory (Medical Library Association, Consumer and Patient Health Information Section), http://caphis.mlanet.org/directory/index.html
·
National: National Network of Libraries of Medicine (National Library of Medicine) - provides library services for health professionals in the United States who do not have access to a medical library, http://nnlm.gov/
·
National: NN/LM List of Libraries Serving the Public (National Network of Libraries of Medicine), http://nnlm.gov/members/
·
Nevada: Health Science Library, West Charleston Library (Las Vegas Clark County Library District), http://www.lvccld.org/special_collections/medical/index.htm
·
New Hampshire: Dartmouth Biomedical Libraries (Dartmouth College Library), http://www.dartmouth.edu/~biomed/resources.htmld/conshealth.htmld/
·
New Jersey: Consumer Health Library (Rahway Hospital), http://www.rahwayhospital.com/library.htm
·
New Jersey: Dr. Walter Phillips Health Sciences Library (Englewood Hospital and Medical Center), http://www.englewoodhospital.com/links/index.htm
·
New Jersey: Meland Foundation (Englewood Hospital and Medical Center), http://www.geocities.com/ResearchTriangle/9360/
·
New York: Choices in Health Information (New York Public Library) NLM Consumer Pilot Project participant, http://www.nypl.org/branch/health/links.html
·
New York: Health Information Center (Upstate Medical University, State University of New York), http://www.upstate.edu/library/hic/
·
New York: Health Sciences Library (Long Island Jewish Medical Center), http://www.lij.edu/library/library.html
·
New York: ViaHealth Medical Library (Rochester General Hospital), http://www.nyam.org/library/
·
Ohio: Consumer Health Library (Akron General Medical Center, Medical & Consumer Health Library), http://www.akrongeneral.org/hwlibrary.htm
·
Oklahoma: Saint Francis Health System Patient/Family Resource Center (Saint Francis Health System), http://www.sfhtulsa.com/patientfamilycenter/default.asp
Finding Medical Libraries 221
·
Oregon: Planetree Health Resource Center (Mid-Columbia Medical Center), http://www.mcmc.net/phrc/
·
Pennsylvania: Community Health Information Library (Milton S. Hershey Medical Center), http://www.hmc.psu.edu/commhealth/
·
Pennsylvania: Community Health Resource Library (Geisinger Medical Center), http://www.geisinger.edu/education/commlib.shtml
·
Pennsylvania: HealthInfo Library (Moses Taylor Hospital), http://www.mth.org/healthwellness.html
·
Pennsylvania: Hopwood Library (University of Pittsburgh, Health Sciences Library System), http://www.hsls.pitt.edu/chi/hhrcinfo.html
·
Pennsylvania: Koop Community Health Information Center (College of Physicians of Philadelphia), http://www.collphyphil.org/kooppg1.shtml
·
Pennsylvania: Learning Resources Center - Medical Library (Susquehanna Health System), http://www.shscares.org/services/lrc/index.asp
·
Pennsylvania: Medical Library (UPMC Health System), http://www.upmc.edu/passavant/library.htm
·
Quebec, Canada: Medical Library (Montreal General Hospital), http://ww2.mcgill.ca/mghlib/
·
South Dakota: Rapid City Regional Hospital - Health Information Center (Rapid City Regional Hospital, Health Information Center), http://www.rcrh.org/education/LibraryResourcesConsumers.htm
·
Texas: Houston HealthWays (Houston Academy of Medicine-Texas Medical Center Library), http://hhw.library.tmc.edu/
·
Texas: Matustik Family Resource Center (Cook Children’s Health Care System), http://www.cookchildrens.com/Matustik_Library.html
·
Washington: Community Health Library (Kittitas Valley Community Hospital), http://www.kvch.com/
·
Washington: Southwest Washington Medical Center Library (Southwest Washington Medical Center), http://www.swmedctr.com/Home/
Your Rights and Insurance 223
APPENDIX E. YOUR RIGHTS AND INSURANCE Overview Any patient with celiac disease faces a series of issues related more to the healthcare industry than to the medical condition itself. This appendix covers two important topics in this regard: your rights and responsibilities as a patient, and how to get the most out of your medical insurance plan.
Your Rights as a Patient The President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has created the following summary of your rights as a patient.61 Information Disclosure Consumers have the right to receive accurate, easily understood information. Some consumers require assistance in making informed decisions about health plans, health professionals, and healthcare facilities. Such information includes: ·
Health plans. Covered benefits, cost-sharing, and procedures for resolving complaints, licensure, certification, and accreditation status, comparable measures of quality and consumer satisfaction, provider network composition, the procedures that govern access to specialists and emergency services, and care management information.
61Adapted
from Consumer Bill of Rights and Responsibilities: http://www.hcqualitycommission.gov/press/cbor.html#head1.
224 Celiac Disease
·
Health professionals. Education, board certification, and recertification, years of practice, experience performing certain procedures, and comparable measures of quality and consumer satisfaction.
·
Healthcare facilities. Experience in performing certain procedures and services, accreditation status, comparable measures of quality, worker, and consumer satisfaction, and procedures for resolving complaints.
·
Consumer assistance programs. Programs must be carefully structured to promote consumer confidence and to work cooperatively with health plans, providers, payers, and regulators. Desirable characteristics of such programs are sponsorship that ensures accountability to the interests of consumers and stable, adequate funding.
Choice of Providers and Plans Consumers have the right to a choice of healthcare providers that is sufficient to ensure access to appropriate high-quality healthcare. To ensure such choice, the Commission recommends the following: ·
Provider network adequacy. All health plan networks should provide access to sufficient numbers and types of providers to assure that all covered services will be accessible without unreasonable delay -including access to emergency services 24 hours a day and 7 days a week. If a health plan has an insufficient number or type of providers to provide a covered benefit with the appropriate degree of specialization, the plan should ensure that the consumer obtains the benefit outside the network at no greater cost than if the benefit were obtained from participating providers.
·
Women’s health services. Women should be able to choose a qualified provider offered by a plan -- such as gynecologists, certified nurse midwives, and other qualified healthcare providers -- for the provision of covered care necessary to provide routine and preventative women’s healthcare services.
·
Access to specialists. Consumers with complex or serious medical conditions who require frequent specialty care should have direct access to a qualified specialist of their choice within a plan’s network of providers. Authorizations, when required, should be for an adequate number of direct access visits under an approved treatment plan.
·
Transitional care. Consumers who are undergoing a course of treatment for a chronic or disabling condition (or who are in the second or third trimester of a pregnancy) at the time they involuntarily change health
Your Rights and Insurance 225
plans or at a time when a provider is terminated by a plan for other than cause should be able to continue seeing their current specialty providers for up to 90 days (or through completion of postpartum care) to allow for transition of care. ·
Choice of health plans. Public and private group purchasers should, wherever feasible, offer consumers a choice of high-quality health insurance plans.
Access to Emergency Services Consumers have the right to access emergency healthcare services when and where the need arises. Health plans should provide payment when a consumer presents to an emergency department with acute symptoms of sufficient severity--including severe pain--such that a “prudent layperson” could reasonably expect the absence of medical attention to result in placing that consumer’s health in serious jeopardy, serious impairment to bodily functions, or serious dysfunction of any bodily organ or part.
Participation in Treatment Decisions Consumers have the right and responsibility to fully participate in all decisions related to their healthcare. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators. Physicians and other health professionals should: ·
Provide patients with sufficient information and opportunity to decide among treatment options consistent with the informed consent process.
·
Discuss all treatment options with a patient in a culturally competent manner, including the option of no treatment at all.
·
Ensure that persons with disabilities have effective communications with members of the health system in making such decisions.
·
Discuss all current treatments a consumer may be undergoing.
·
Discuss all risks, nontreatment.
·
Give patients the opportunity to refuse treatment and to express preferences about future treatment decisions.
benefits,
and
consequences
to
treatment
or
226 Celiac Disease
·
Discuss the use of advance directives -- both living wills and durable powers of attorney for healthcare -- with patients and their designated family members.
·
Abide by the decisions made by their patients and/or their designated representatives consistent with the informed consent process.
Health plans, health providers, and healthcare facilities should: ·
Disclose to consumers factors -- such as methods of compensation, ownership of or interest in healthcare facilities, or matters of conscience -that could influence advice or treatment decisions.
·
Assure that provider contracts do not contain any so-called “gag clauses” or other contractual mechanisms that restrict healthcare providers’ ability to communicate with and advise patients about medically necessary treatment options.
·
Be prohibited from penalizing or seeking retribution against healthcare professionals or other health workers for advocating on behalf of their patients.
Respect and Nondiscrimination Consumers have the right to considerate, respectful care from all members of the healthcare industry at all times and under all circumstances. An environment of mutual respect is essential to maintain a quality healthcare system. To assure that right, the Commission recommends the following: ·
Consumers must not be discriminated against in the delivery of healthcare services consistent with the benefits covered in their policy, or as required by law, based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.
·
Consumers eligible for coverage under the terms and conditions of a health plan or program, or as required by law, must not be discriminated against in marketing and enrollment practices based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment. Confidentiality of Health Information
Consumers have the right to communicate with healthcare providers in confidence and to have the confidentiality of their individually identifiable
Your Rights and Insurance 227
healthcare information protected. Consumers also have the right to review and copy their own medical records and request amendments to their records. Complaints and Appeals Consumers have the right to a fair and efficient process for resolving differences with their health plans, healthcare providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review. A free copy of the Patient’s Bill of Rights is available from the American Hospital Association.62
Patient Responsibilities Treatment is a two-way street between you and your healthcare providers. To underscore the importance of finance in modern healthcare as well as your responsibility for the financial aspects of your care, the President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has proposed that patients understand the following “Consumer Responsibilities.”63 In a healthcare system that protects consumers’ rights, it is reasonable to expect and encourage consumers to assume certain responsibilities. Greater individual involvement by the consumer in his or her care increases the likelihood of achieving the best outcome and helps support a quality-oriented, cost-conscious environment. Such responsibilities include: ·
Take responsibility for maximizing healthy habits such as exercising, not smoking, and eating a healthy diet.
·
Work collaboratively with healthcare providers in developing and carrying out agreed-upon treatment plans.
·
Disclose relevant information and clearly communicate wants and needs.
·
Use your health insurance plan’s internal complaint and appeal processes to address your concerns.
·
Avoid knowingly spreading disease.
To order your free copy of the Patient’s Bill of Rights, telephone 312-422-3000 or visit the American Hospital Association’s Web site: http://www.aha.org. Click on “Resource Center,” go to “Search” at bottom of page, and then type in “Patient’s Bill of Rights.” The Patient’s Bill of Rights is also available from Fax on Demand, at 312-422-2020, document number 471124. 63 Adapted from http://www.hcqualitycommission.gov/press/cbor.html#head1. 62
228 Celiac Disease
·
Recognize the reality of risks, the limits of the medical science, and the human fallibility of the healthcare professional.
·
Be aware of a healthcare provider’s obligation to be reasonably efficient and equitable in providing care to other patients and the community.
·
Become knowledgeable about your health plan’s coverage and options (when available) including all covered benefits, limitations, and exclusions, rules regarding use of network providers, coverage and referral rules, appropriate processes to secure additional information, and the process to appeal coverage decisions.
·
Show respect for other patients and health workers.
·
Make a good-faith effort to meet financial obligations.
·
Abide by administrative and operational procedures of health plans, healthcare providers, and Government health benefit programs.
Choosing an Insurance Plan There are a number of official government agencies that help consumers understand their healthcare insurance choices.64 The U.S. Department of Labor, in particular, recommends ten ways to make your health benefits choices work best for you.65 1. Your options are important. There are many different types of health benefit plans. Find out which one your employer offers, then check out the plan, or plans, offered. Your employer’s human resource office, the health plan administrator, or your union can provide information to help you match your needs and preferences with the available plans. The more information you have, the better your healthcare decisions will be. 2. Reviewing the benefits available. Do the plans offered cover preventive care, well-baby care, vision or dental care? Are there deductibles? Answers to these questions can help determine the out-of-pocket expenses you may face. Matching your needs and those of your family members will result in the best possible benefits. Cheapest may not always be best. Your goal is high quality health benefits.
More information about quality across programs is provided at the following AHRQ Web site: http://www.ahrq.gov/consumer/qntascii/qnthplan.htm. 65 Adapted from the Department of Labor: http://www.dol.gov/dol/pwba/public/pubs/health/top10-text.html. 64
Your Rights and Insurance 229
3. Look for quality. The quality of healthcare services varies, but quality can be measured. You should consider the quality of healthcare in deciding among the healthcare plans or options available to you. Not all health plans, doctors, hospitals and other providers give the highest quality care. Fortunately, there is quality information you can use right now to help you compare your healthcare choices. Find out how you can measure quality. Consult the U.S. Department of Health and Human Services publication “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer. 4. Your plan’s summary plan description (SPD) provides a wealth of information. Your health plan administrator can provide you with a copy of your plan’s SPD. It outlines your benefits and your legal rights under the Employee Retirement Income Security Act (ERISA), the federal law that protects your health benefits. It should contain information about the coverage of dependents, what services will require a co-pay, and the circumstances under which your employer can change or terminate a health benefits plan. Save the SPD and all other health plan brochures and documents, along with memos or correspondence from your employer relating to health benefits. 5. Assess your benefit coverage as your family status changes. Marriage, divorce, childbirth or adoption, and the death of a spouse are all life events that may signal a need to change your health benefits. You, your spouse and dependent children may be eligible for a special enrollment period under provisions of the Health Insurance Portability and Accountability Act (HIPAA). Even without life-changing events, the information provided by your employer should tell you how you can change benefits or switch plans, if more than one plan is offered. If your spouse’s employer also offers a health benefits package, consider coordinating both plans for maximum coverage. 6. Changing jobs and other life events can affect your health benefits. Under the Consolidated Omnibus Budget Reconciliation Act (COBRA), you, your covered spouse, and your dependent children may be eligible to purchase extended health coverage under your employer’s plan if you lose your job, change employers, get divorced, or upon occurrence of certain other events. Coverage can range from 18 to 36 months depending on your situation. COBRA applies to most employers with 20 or more workers and requires your plan to notify you of your rights. Most plans require eligible individuals to make their COBRA election within 60 days of the plan’s notice. Be sure to follow up with your plan sponsor if you don’t receive notice, and make sure you respond within the allotted time.
230 Celiac Disease
7. HIPAA can also help if you are changing jobs, particularly if you have a medical condition. HIPAA generally limits pre-existing condition exclusions to a maximum of 12 months (18 months for late enrollees). HIPAA also requires this maximum period to be reduced by the length of time you had prior “creditable coverage.” You should receive a certificate documenting your prior creditable coverage from your old plan when coverage ends. 8. Plan for retirement. Before you retire, find out what health benefits, if any, extend to you and your spouse during your retirement years. Consult with your employer’s human resources office, your union, the plan administrator, and check your SPD. Make sure there is no conflicting information among these sources about the benefits you will receive or the circumstances under which they can change or be eliminated. With this information in hand, you can make other important choices, like finding out if you are eligible for Medicare and Medigap insurance coverage. 9. Know how to file an appeal if your health benefits claim is denied. Understand how your plan handles grievances and where to make appeals of the plan’s decisions. Keep records and copies of correspondence. Check your health benefits package and your SPD to determine who is responsible for handling problems with benefit claims. Contact PWBA for customer service assistance if you are unable to obtain a response to your complaint. 10. You can take steps to improve the quality of the healthcare and the health benefits you receive. Look for and use things like Quality Reports and Accreditation Reports whenever you can. Quality reports may contain consumer ratings -- how satisfied consumers are with the doctors in their plan, for instance-- and clinical performance measures -- how well a healthcare organization prevents and treats illness. Accreditation reports provide information on how accredited organizations meet national standards, and often include clinical performance measures. Look for these quality measures whenever possible. Consult “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer.
Medicare and Medicaid Illness strikes both rich and poor families. For low-income families, Medicaid is available to defer the costs of treatment. The Health Care Financing Administration (HCFA) administers Medicare, the nation’s largest health insurance program, which covers 39 million Americans. In the following pages, you will learn the basics about Medicare insurance as well as useful
Your Rights and Insurance 231
contact information on how to find more in-depth information about Medicaid.66
Who is Eligible for Medicare? Generally, you are eligible for Medicare if you or your spouse worked for at least 10 years in Medicare-covered employment and you are 65 years old and a citizen or permanent resident of the United States. You might also qualify for coverage if you are under age 65 but have a disability or EndStage Renal disease (permanent kidney failure requiring dialysis or transplant). Here are some simple guidelines: You can get Part A at age 65 without having to pay premiums if: ·
You are already receiving retirement benefits from Social Security or the Railroad Retirement Board.
·
You are eligible to receive Social Security or Railroad benefits but have not yet filed for them.
·
You or your spouse had Medicare-covered government employment.
If you are under 65, you can get Part A without having to pay premiums if: ·
You have received Social Security or Railroad Retirement Board disability benefit for 24 months.
·
You are a kidney dialysis or kidney transplant patient.
Medicare has two parts: ·
Part A (Hospital Insurance). Most people do not have to pay for Part A.
·
Part B (Medical Insurance). Most people pay monthly for Part B. Part A (Hospital Insurance)
Helps Pay For: Inpatient hospital care, care in critical access hospitals (small facilities that give limited outpatient and inpatient services to people in rural areas) and skilled nursing facilities, hospice care, and some home healthcare.
This section has been adapted from the Official U.S. Site for Medicare Information: http://www.medicare.gov/Basics/Overview.asp.
66
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Cost: Most people get Part A automatically when they turn age 65. You do not have to pay a monthly payment called a premium for Part A because you or a spouse paid Medicare taxes while you were working. If you (or your spouse) did not pay Medicare taxes while you were working and you are age 65 or older, you still may be able to buy Part A. If you are not sure you have Part A, look on your red, white, and blue Medicare card. It will show “Hospital Part A” on the lower left corner of the card. You can also call the Social Security Administration toll free at 1-800-772-1213 or call your local Social Security office for more information about buying Part A. If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772. For more information, call your Fiscal Intermediary about Part A bills and services. The phone number for the Fiscal Intermediary office in your area can be obtained from the following Web site: http://www.medicare.gov/Contacts/home.asp. Part B (Medical Insurance) Helps Pay For: Doctors, services, outpatient hospital care, and some other medical services that Part A does not cover, such as the services of physical and occupational therapists, and some home healthcare. Part B helps pay for covered services and supplies when they are medically necessary. Cost: As of 2001, you pay the Medicare Part B premium of $50.00 per month. In some cases this amount may be higher if you did not choose Part B when you first became eligible at age 65. The cost of Part B may go up 10% for each 12-month period that you were eligible for Part B but declined coverage, except in special cases. You will have to pay the extra 10% cost for the rest of your life. Enrolling in Part B is your choice. You can sign up for Part B anytime during a 7-month period that begins 3 months before you turn 65. Visit your local Social Security office, or call the Social Security Administration at 1-800-7721213 to sign up. If you choose to enroll in Part B, the premium is usually taken out of your monthly Social Security, Railroad Retirement, or Civil Service Retirement payment. If you do not receive any of the above payments, Medicare sends you a bill for your part B premium every 3 months. You should receive your Medicare premium bill in the mail by the 10th of the month. If you do not, call the Social Security Administration at 1800-772-1213, or your local Social Security office. If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772. For more information, call your Medicare carrier about bills and services. The
Your Rights and Insurance 233
phone number for the Medicare carrier in your area can be found at the following Web site: http://www.medicare.gov/Contacts/home.asp. You may have choices in how you get your healthcare including the Original Medicare Plan, Medicare Managed Care Plans (like HMOs), and Medicare Private Fee-for-Service Plans.
Medicaid Medicaid is a joint federal and state program that helps pay medical costs for some people with low incomes and limited resources. Medicaid programs vary from state to state. People on Medicaid may also get coverage for nursing home care and outpatient prescription drugs which are not covered by Medicare. You can find more information about Medicaid on the HCFA.gov Web site at http://www.hcfa.gov/medicaid/medicaid.htm. States also have programs that pay some or all of Medicare’s premiums and may also pay Medicare deductibles and coinsurance for certain people who have Medicare and a low income. To qualify, you must have: ·
Part A (Hospital Insurance),
·
Assets, such as bank accounts, stocks, and bonds that are not more than $4,000 for a single person, or $6,000 for a couple, and
·
A monthly income that is below certain limits.
For more information on these programs, look at the Medicare Savings Programs brochure, http://www.medicare.gov/Library/PDFNavigation/PDFInterim.asp?Langua ge=English&Type=Pub&PubID=10126. There are also Prescription Drug Assistance Programs available. Find information on these programs which offer discounts or free medications to individuals in need at http://www.medicare.gov/Prescription/Home.asp.
NORD’s Medication Assistance Programs Finally, the National Organization for Rare Disorders, Inc. (NORD) administers medication programs sponsored by humanitarian-minded pharmaceutical and biotechnology companies to help uninsured or underinsured individuals secure life-saving or life-sustaining drugs.67 NORD Adapted from NORD: http://www.rarediseases.org/cgibin/nord/progserv#patient?id=rPIzL9oD&mv_pc=30.
67
234 Celiac Disease
programs ensure that certain vital drugs are available “to those individuals whose income is too high to qualify for Medicaid but too low to pay for their prescribed medications.” The program has standards for fairness, equity, and unbiased eligibility. It currently covers some 14 programs for nine pharmaceutical companies. NORD also offers early access programs for investigational new drugs (IND) under the approved “Treatment INDs” programs of the Food and Drug Administration (FDA). In these programs, a limited number of individuals can receive investigational drugs that have yet to be approved by the FDA. These programs are generally designed for rare diseases or disorders. For more information, visit www.rarediseases.org.
Additional Resources In addition to the references already listed in this chapter, you may need more information on health insurance, hospitals, or the healthcare system in general. The NIH has set up an excellent guidance Web site that addresses these and other issues. Topics include:68 ·
Health Insurance: http://www.nlm.nih.gov/medlineplus/healthinsurance.html
·
Health Statistics: http://www.nlm.nih.gov/medlineplus/healthstatistics.html
·
HMO and Managed Care: http://www.nlm.nih.gov/medlineplus/managedcare.html
·
Hospice Care: http://www.nlm.nih.gov/medlineplus/hospicecare.html
·
Medicaid: http://www.nlm.nih.gov/medlineplus/medicaid.html
·
Medicare: http://www.nlm.nih.gov/medlineplus/medicare.html
·
Nursing Homes and Long-term Care: http://www.nlm.nih.gov/medlineplus/nursinghomes.html
·
Patient’s Rights, Confidentiality, Informed Consent, Ombudsman Programs, Privacy and Patient Issues: http://www.nlm.nih.gov/medlineplus/patientissues.html
·
Veteran’s Health, Persian Gulf War, Gulf War Syndrome, Agent Orange: http://www.nlm.nih.gov/medlineplus/veteranshealth.html
You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html.
68
Your Rights and Insurance 235
Vocabulary Builder Hyperplasia: The abnormal multiplication or increase in the number of normal cells in normal arrangement in a tissue. [EU] Pallor: A clinical manifestation consisting of an unnatural paleness of the skin. [NIH] Prothrombin Time: Measurement of clotting time of plasma recalcified in the presence of excess tissue thromboplastin. Factors measured are fibrinogen, prothrombin, and factors V, VII, and X. It is used for monitoring anticoagulant therapy with coumarins. [NIH] Vertigo: An illusion of movement; a sensation as if the external world were revolving around the patient (objective vertigo) or as if he himself were revolving in space (subjective vertigo). The term is sometimes erroneously used to mean any form of dizziness. [EU]
Online Glossaries 237
ONLINE GLOSSARIES The Internet provides access to a number of free-to-use medical dictionaries and glossaries. The National Library of Medicine has compiled the following list of online dictionaries: ·
ADAM Medical Encyclopedia (A.D.A.M., Inc.), comprehensive medical reference: http://www.nlm.nih.gov/medlineplus/encyclopedia.html
·
MedicineNet.com Medical Dictionary (MedicineNet, Inc.): http://www.medterms.com/Script/Main/hp.asp
·
Merriam-Webster Medical Dictionary (Inteli-Health, Inc.): http://www.intelihealth.com/IH/
·
Multilingual Glossary of Technical and Popular Medical Terms in Eight European Languages (European Commission) - Danish, Dutch, English, French, German, Italian, Portuguese, and Spanish: http://allserv.rug.ac.be/~rvdstich/eugloss/welcome.html
·
On-line Medical Dictionary (CancerWEB): http://www.graylab.ac.uk/omd/
·
Technology Glossary (National Library of Medicine) - Health Care Technology: http://www.nlm.nih.gov/nichsr/ta101/ta10108.htm
·
Terms and Definitions (Office of Rare Diseases): http://rarediseases.info.nih.gov/ord/glossary_a-e.html
Beyond these, MEDLINEplus contains a very user-friendly encyclopedia covering every aspect of medicine (licensed from A.D.A.M., Inc.). The ADAM Medical Encyclopedia Web site address is http://www.nlm.nih.gov/medlineplus/encyclopedia.html. ADAM is also available on commercial Web sites such as Web MD (http://my.webmd.com/adam/asset/adam_disease_articles/a_to_z/a) and drkoop.com (http://www.drkoop.com/). Topics of interest can be researched by using keywords before continuing elsewhere, as these basic definitions and concepts will be useful in more advanced areas of research. You may choose to print various pages specifically relating to celiac disease and keep them on file. The NIH, in particular, suggests that patients with celiac disease visit the following Web sites in the ADAM Medical Encyclopedia:
238 Celiac Disease
·
Basic Guidelines for Celiac Disease Celiac disease - nutritional considerations Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002443.htm Celiac disease - resources Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002194.htm Celiac disease - sprue Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000233.htm
·
Signs & Symptoms for Celiac Disease Abdominal distention Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003122.htm Abdominal pain Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003120.htm Anemia Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000560.htm Anorexia Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003121.htm Blistering Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003939.htm Bloating Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003123.htm
Online Glossaries 239
Bone pain Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003180.htm Breathlessness Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003075.htm Decreased appetite Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003121.htm Depression Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003213.htm Diarrhea Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003126.htm Dyspepsia Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003260.htm Fatigue Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003088.htm Flatulence Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003124.htm Itching Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003217.htm Muscle cramps Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003193.htm
240 Celiac Disease
Muscle wasting Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003188.htm Nosebleed - symptom Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003106.htm Pallor Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003244.htm Rash Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003220.htm Seizures Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003200.htm Short stature Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003271.htm Stools - floating Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003128.htm Stools - foul smelling Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003132.htm Stools, bloody Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003130.htm Stress Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003211.htm
Online Glossaries 241
Swelling, overall Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003103.htm Tiredness Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003088.htm Ulcers Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003228.htm Vertigo Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003093.htm Vomiting Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003117.htm Weakness Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003174.htm Weight loss Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003107.htm ·
Diagnostics and Tests for Celiac Disease ALT Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003473.htm Biopsies Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003416.htm Biopsy Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003416.htm
242 Celiac Disease
CBC Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003642.htm EGD Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003888.htm ELISA Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003332.htm Endoscopy Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003338.htm Fecal fat Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003588.htm GI series Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003816.htm Hyperplasia Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003441.htm Prothrombin time Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003652.htm Small bowel biopsy Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003889.htm Total protein Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003483.htm
Online Glossaries 243
·
Nutrition for Celiac Disease Carbohydrates Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002469.htm Fat Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002468.htm Gluten-free diet Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002443.htm Protein Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002467.htm Proteins Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002467.htm Sugars Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002469.htm Vitamin B12 Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002403.htm
·
Background Topics for Celiac Disease Bleeding Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000045.htm Celiac disease - support group Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002194.htm
244 Celiac Disease
Chronic Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002312.htm Immune response Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000821.htm Incidence Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002387.htm Physical examination Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002274.htm Support group Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002150.htm Support groups Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002150.htm Thyroid disease Web site: http://www.nlm.nih.gov/medlineplus/ency/article/001159.htm
Online Glossaries 245
Online Dictionary Directories The following are additional online directories compiled by the National Library of Medicine, including a number of specialized medical dictionaries and glossaries: ·
Medical Dictionaries: Medical & Biological (World Health Organization): http://www.who.int/hlt/virtuallibrary/English/diction.htm#Medical
·
MEL-Michigan Electronic Library List of Online Health and Medical Dictionaries (Michigan Electronic Library): http://mel.lib.mi.us/health/health-dictionaries.html
·
Patient Education: Glossaries (DMOZ Open Directory Project): http://dmoz.org/Health/Education/Patient_Education/Glossaries/
·
Web of Online Dictionaries (Bucknell University): http://www.yourdictionary.com/diction5.html#medicine
Glossary 247
CELIAC DISEASE GLOSSARY The following is a complete glossary of terms used in this sourcebook. The definitions are derived from official public sources including the National Institutes of Health [NIH] and the European Union [EU]. After this glossary, we list a number of additional hardbound and electronic glossaries and dictionaries that you may wish to consult. Abdomen: That portion of the body that lies between the thorax and the pelvis. [NIH] Abortion: 1. the premature expulsion from the uterus of the products of conception - of the embryo, or of a nonviable fetus. The four classic symptoms, usually present in each type of abortion, are uterine contractions, uterine haemorrhage, softening and dilatation of the cervix, and presentation or expulsion of all or part of the products of conception. 2. premature stoppage of a natural or a pathological process. [EU] Adenocarcinoma: organization. [NIH]
A malignant epithelial tumor with a glandular
Adolescence: The period of life beginning with the appearance of secondary sex characteristics and terminating with the cessation of somatic growth. The years usually referred to as adolescence lie between 13 and 18 years of age. [NIH]
Alimentary: Pertaining to food or nutritive material, or to the organs of digestion. [EU] Alleles: Mutually exclusive forms of the same gene, occupying the same locus on homologous chromosomes, and governing the same biochemical and developmental process. [NIH] Anaemia: A reduction below normal in the number of erythrocytes per cu. mm., in the quantity of haemoglobin, or in the volume of packed red cells per 100 ml. of blood which occurs when the equilibrium between blood loss (through bleeding or destruction) and blood production is disturbed. [EU] Anemia: A reduction in the number of circulating erythrocytes or in the quantity of hemoglobin. [NIH] Aneurysm: A sac formed by the dilatation of the wall of an artery, a vein, or the heart. The chief signs of arterial aneurysm are the formation of a pulsating tumour, and often a bruit (aneurysmal bruit) heard over the swelling. Sometimes there are symptoms from pressure on contiguous parts. [EU]
Anomalies: Birth defects; abnormalities. [NIH]
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Anorexia: Lack or loss of the appetite for food. [EU] Anthropometry: The technique that deals with the measurement of the size, weight, and proportions of the human or other primate body. [NIH] Antibiotic: A chemical substance produced by a microorganism which has the capacity, in dilute solutions, to inhibit the growth of or to kill other microorganisms. Antibiotics that are sufficiently nontoxic to the host are used as chemotherapeutic agents in the treatment of infectious diseases of man, animals and plants. [EU] Antibodies: Proteins that the body makes to protect itself from foreign substances. In diabetes, the body sometimes makes antibodies to work against pork or beef insulins because they are not exactly the same as human insulin or because they have impurities. The antibodies can keep the insulin from working well and may even cause the person with diabetes to have an allergic or bad reaction to the beef or pork insulins. [NIH] Antibody: An immunoglobulin molecule that has a specific amino acid sequence by virtue of which it interacts only with the antigen that induced its synthesis in cells of the lymphoid series (especially plasma cells), or with antigen closely related to it. Antibodies are classified according to their ode of action as agglutinins, bacteriolysins, haemolysins, opsonins, precipitins, etc. [EU] Antigen: Any substance which is capable, under appropriate conditions, of inducing a specific immune response and of reacting with the products of that response, that is, with specific antibody or specifically sensitized Tlymphocytes, or both. Antigens may be soluble substances, such as toxins and foreign proteins, or particulate, such as bacteria and tissue cells; however, only the portion of the protein or polysaccharide molecule known as the antigenic determinant (q.v.) combines with antibody or a specific receptor on a lymphocyte. Abbreviated Ag. [EU] Anus: The distal or terminal orifice of the alimentary canal. [EU] Aorta: The main trunk of the systemic arteries. [NIH] Appendicitis: Acute inflammation of the vermiform appendix. [NIH] Arteries: The vessels carrying blood away from the heart. [NIH] Artery: A large blood vessel that carries blood from the heart to other parts of the body. Arteries are thicker and have walls that are stronger and more elastic than the walls of veins. [NIH] Ascites: Effusion and accumulation of serous fluid in the abdominal cavity; called also abdominal or peritoneal dropsy, hydroperitonia, and hydrops abdominis. [EU] Assay: Determination of the amount of a particular constituent of a mixture, or of the biological or pharmacological potency of a drug. [EU]
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Asymptomatic: No symptoms; no clear sign of disease present. [NIH] Ataxia: Failure of muscular coordination; irregularity of muscular action. [EU]
Atrophy: A wasting away; a diminution in the size of a cell, tissue, organ, or part. [EU] Atypical: Irregular; not conformable to the type; in microbiology, applied specifically to strains of unusual type. [EU] Benign: Not malignant; not recurrent; favourable for recovery. [EU] Bereavement: Refers to the whole process of grieving and mourning and is associated with a deep sense of loss and sadness. [NIH] Bezoars: Concretions of swallowed hair, fruit or vegetable fibers, or similar substances found in the alimentary canal. [NIH] Biliary: Pertaining to the bile, to the bile ducts, or to the gallbladder. [EU] Bioavailability: The degree to which a drug or other substance becomes available to the target tissue after administration. [EU] Biochemical: Relating to biochemistry; characterized by, produced by, or involving chemical reactions in living organisms. [EU] Biopsy: The removal and examination, usually microscopic, of tissue from the living body, performed to establish precise diagnosis. [EU] Biosynthesis: The building up of a chemical compound in the physiologic processes of a living organism. [EU] Blindness: The inability to see or the loss or absence of perception of visual stimuli. This condition may be the result of eye diseases; optic nerve diseases; optic chiasm diseases; or brain diseases affecting the visual pathways or occipital lobe. [NIH] Calcification: The process by which organic tissue becomes hardened by a deposit of calcium salts within its substance. [EU] Campylobacter: A genus of bacteria found in the reproductive organs, intestinal tract, and oral cavity of animals and man. Some species are pathogenic. [NIH] Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Cardiology: The study of the heart, its physiology, and its functions. [NIH]
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Carnitine: Constituent of striated muscle and liver. It is used therapeutically to stimulate gastric and pancreatic secretions and in the treatment of hyperlipoproteinemias. [NIH] Caustic: An escharotic or corrosive agent. Called also cauterant. [EU] Cholangitis: Inflammation of a bile duct. [EU] Cholecystitis: Inflammation of the gallbladder. [EU] Chronic: Persisting over a long period of time. [EU] Cirrhosis: Liver disease characterized pathologically by loss of the normal microscopic lobular architecture, with fibrosis and nodular regeneration. The term is sometimes used to refer to chronic interstitial inflammation of any organ. [EU] Clostridium: A genus of motile or nonmotile gram-positive bacteria of the family bacillaceae. Many species have been identified with some being pathogenic. They occur in water, soil, and in the intestinal tract of humans and lower animals. [NIH] Colic: Paroxysms of pain. This condition usually occurs in the abdominal region but may occur in other body regions as well. [NIH] Colitis: Inflammation of the colon. [EU] Collagen: The protein substance of the white fibres (collagenous fibres) of skin, tendon, bone, cartilage, and all other connective tissue; composed of molecules of tropocollagen (q.v.), it is converted into gelatin by boiling. collagenous pertaining to collagen; forming or producing collagen. [EU] Colorectal: Pertaining to or affecting the colon and rectum. [EU] Condiments: Aromatic substances added to food before or after cooking to enhance its flavor. These are usually of vegetable origin. [NIH] Constipation: Infrequent or difficult evacuation of the faeces. [EU] Convulsion: A violent involuntary contraction or series of contractions of the voluntary muscles. [EU] Cromolyn Sodium: A chromone complex that acts by inhibiting the release of chemical mediators from sensitized mast cells. It is used in the prophylactic treatment of both allergic and exercise-induced asthma, but does not affect an established asthmatic attack. [NIH] Cutaneous: Pertaining to the skin; dermal; dermic. [EU] Cysteine: A thiol-containing non-essential amino acid that is oxidized to form cystine. [NIH] Cytokines: Non-antibody proteins secreted by inflammatory leukocytes and some non-leukocytic cells, that act as intercellular mediators. They differ from classical hormones in that they are produced by a number of tissue or
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cell types rather than by specialized glands. They generally act locally in a paracrine or autocrine rather than endocrine manner. [NIH] Degenerative: Undergoing degeneration : tending to degenerate; having the character of or involving degeneration; causing or tending to cause degeneration. [EU] Dehydration: The condition that results from excessive loss of body water. Called also anhydration, deaquation and hypohydration. [EU] Democracy: A system of government in which there is free and equal participation by the people in the political decision-making process. [NIH] Dermatitis: Inflammation of the skin. [EU] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Diarrhoea: Abnormal frequency and liquidity of faecal discharges. [EU] Dietetics: The study and regulation of the diet. [NIH] Digestion: The process of breakdown of food for metabolism and use by the body. [NIH] Disposition: A tendency either physical or mental toward certain diseases. [EU]
Diverticulitis: Inflammation of a diverticulum, especially inflammation related to colonic diverticula, which may undergo perforation with abscess formation. Sometimes called left-sided or L-sides appendicitis. [EU] Duodenum: The first or proximal portion of the small intestine, extending from the pylorus to the jejunum; so called because it is about 12 fingerbreadths in length. [EU] Dyspepsia: Impairment of the power of function of digestion; usually applied to epigastric discomfort following meals. [EU] Edema: Excessive amount of watery fluid accumulated in the intercellular spaces, most commonly present in subcutaneous tissue. [NIH] Encephalopathy: Any degenerative disease of the brain. [EU] Encopresis: Incontinence of feces not due to organic defect or illness. [NIH] Endemic: Present or usually prevalent in a population or geographical area at all times; said of a disease or agent. Called also endemial. [EU] Endocrinology: A subspecialty of internal medicine concerned with the metabolism, physiology, and disorders of the endocrine system. [NIH] Endoscopy: Visual inspection of any cavity of the body by means of an endoscope. [EU] Enzyme: A protein molecule that catalyses chemical reactions of other substances without itself being destroyed or altered upon completion of the reactions. Enzymes are classified according to the recommendations of the
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Nomenclature Committee of the International Union of Biochemistry. Each enzyme is assigned a recommended name and an Enzyme Commission (EC) number. They are divided into six main groups; oxidoreductases, transferases, hydrolases, lyases, isomerases, and ligases. [EU] Epidemic: Occurring suddenly in numbers clearly in excess of normal expectancy; said especially of infectious diseases but applied also to any disease, injury, or other health-related event occurring in such outbreaks. [EU] Epidemiological: Relating to, or involving epidemiology. [EU] Epithelium: The covering of internal and external surfaces of the body, including the lining of vessels and other small cavities. It consists of cells joined by small amounts of cementing substances. Epithelium is classified into types on the basis of the number of layers deep and the shape of the superficial cells. [EU] Fatigue: The state of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced efficiency to respond to stimuli. [NIH] Fats: One of the three main classes of foods and a source of energy in the body. Fats help the body use some vitamins and keep the skin healthy. They also serve as energy stores for the body. In food, there are two types of fats: saturated and unsaturated. [NIH] Feces: The excrement discharged from the intestines, consisting of bacteria, cells exfoliated from the intestines, secretions, chiefly of the liver, and a small amount of food residue. [EU] Fibrosis: The formation of fibrous tissue; fibroid or fibrous degeneration [EU] Fissure: Any cleft or groove, normal or otherwise; especially a deep fold in the cerebral cortex which involves the entire thickness of the brain wall. [EU] Fistula: An abnormal passage or communication, usually between two internal organs, or leading from an internal organ to the surface of the body; frequently designated according to the organs or parts with which it communicates, as anovaginal, brochocutaneous, hepatopleural, pulmonoperitoneal, rectovaginal, urethrovaginal, and the like. Such passages are frequently created experimentally for the purpose of obtaining body secretions for physiologic study. [EU] Flatulence: The presence of excessive amounts of air or gases in the stomach or intestine, leading to distention of the organs. [EU] Fructose: A type of sugar found in many fruits and vegetables and in honey. Fructose is used to sweeten some diet foods. It is considered a nutritive sweetener because it has calories. [NIH] Gastritis: Inflammation of the stomach. [EU]
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Gastroenteritis: An acute inflammation of the lining of the stomach and intestines, characterized by anorexia, nausea, diarrhoea, abdominal pain, and weakness, which has various causes, including food poisoning due to infection with such organisms as Escherichia coli, Staphylococcus aureus, and Salmonella species; consumption of irritating food or drink; or psychological factors such as anger, stress, and fear. Called also enterogastritis. [EU] Gastrointestinal: Pertaining to or communicating with the stomach and intestine, as a gastrointestinal fistula. [EU] Genotype: The genetic constitution of the individual; the characterization of the genes. [NIH] Giardia: A genus of flagellate intestinal protozoa parasitic in various vertebrates, including humans. Characteristics include the presence of four pairs of flagella arising from a complicated system of axonemes and cysts that are ellipsoidal to ovoidal in shape. [NIH] Glomerulonephritis: A variety of nephritis characterized by inflammation of the capillary loops in the glomeruli of the kidney. It occurs in acute, subacute, and chronic forms and may be secondary to haemolytic streptococcal infection. Evidence also supports possible immune or autoimmune mechanisms. [EU] Glucose: D-glucose, a monosaccharide (hexose), C6H12O6, also known as dextrose (q.v.), found in certain foodstuffs, especially fruits, and in the normal blood of all animals. It is the end product of carbohydrate metabolism and is the chief source of energy for living organisms, its utilization being controlled by insulin. Excess glucose is converted to glycogen and stored in the liver and muscles for use as needed and, beyond that, is converted to fat and stored as adipose tissue. Glucose appears in the urine in diabetes mellitus. [EU] Gluten: The protein of wheat and other grains which gives to the dough its tough elastic character. [EU] Glycoside: Any compound that contains a carbohydrate molecule (sugar), particularly any such natural product in plants, convertible, by hydrolytic cleavage, into sugar and a nonsugar component (aglycone), and named specifically for the sugar contained, as glucoside (glucose), pentoside (pentose), fructoside (fructose) etc. [EU] Gynecology: A medical-surgical specialty concerned with the physiology and disorders primarily of the female genital tract, as well as female endocrinology and reproductive physiology. [NIH] Haplotypes: The genetic constitution of individuals with respect to one member of a pair of allelic genes, or sets of genes that are closely linked and tend to be inherited together such as those of the MAJOR histocompatibility
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complex. [NIH] Heartburn: Substernal pain or burning sensation, usually associated with regurgitation of gastric juice into the esophagus. [NIH] Helicobacter: A genus of gram-negative, spiral-shaped bacteria that is pathogenic and has been isolated from the intestinal tract of mammals, including humans. [NIH] Hematology: A subspecialty of internal medicine concerned with morphology, physiology, and pathology of the blood and blood-forming tissues. [NIH] Hemorrhage: Bleeding or escape of blood from a vessel. [NIH] Hemorrhoids: Varicosities of the hemorrhoidal venous plexuses. [NIH] Hepatic: Pertaining to the liver. [EU] Hepatitis: Inflammation of the liver. [EU] Hepatobiliary: Pertaining to the liver and the bile or the biliary ducts. [EU] Hepatocellular: Pertaining to or affecting liver cells. [EU] Hepatocytes: The main structural component of the liver. They are specialized epithelial cells that are organized into interconnected plates called lobules. [NIH] Hernia: (he protrusion of a loop or knuckle of an organ or tissue through an abnormal opening. [EU] Hiccup: A spasm of the diaphragm that causes a sudden inhalation followed by rapid closure of the glottis which produces a sound. [NIH] Histocompatibility: The degree of antigenic similarity between the tissues of different individuals, which determines the acceptance or rejection of allografts. [NIH] Hormones: Chemical substances having a specific regulatory effect on the activity of a certain organ or organs. The term was originally applied to substances secreted by various endocrine glands and transported in the bloodstream to the target organs. It is sometimes extended to include those substances that are not produced by the endocrine glands but that have similar effects. [NIH] Hydrogen: Hydrogen. The first chemical element in the periodic table. It has the atomic symbol H, atomic number 1, and atomic weight 1. It exists, under normal conditions, as a colorless, odorless, tasteless, diatomic gas. Hydrogen ions are protons. Besides the common H1 isotope, hydrogen exists as the stable isotope deuterium and the unstable, radioactive isotope tritium. [NIH] Hyperplasia: The abnormal multiplication or increase in the number of normal cells in normal arrangement in a tissue. [EU]
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Idiopathic: Of the nature of an idiopathy; self-originated; of unknown causation. [EU] Ileus: Obstruction of the intestines. [EU] Immunity: The condition of being immune; the protection against infectious disease conferred either by the immune response generated by immunization or previous infection or by other nonimmunologic factors (innate i.). [EU] Immunogenetics: A branch of genetics which deals with the genetic basis of the immune response. [NIH] Induction: The act or process of inducing or causing to occur, especially the production of a specific morphogenetic effect in the developing embryo through the influence of evocators or organizers, or the production of anaesthesia or unconsciousness by use of appropriate agents. [EU] Inflammation: A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH] Ingestion: The act of taking food, medicines, etc., into the body, by mouth. [EU]
Inguinal: Pertaining to the inguen, or groin. [EU] Insulin: A protein hormone secreted by beta cells of the pancreas. Insulin plays a major role in the regulation of glucose metabolism, generally promoting the cellular utilization of glucose. It is also an important regulator of protein and lipid metabolism. Insulin is used as a drug to control insulindependent diabetes mellitus. [NIH] Interindividual: Occurring between two or more individuals. [EU] Intermittent: Occurring at separated intervals; having periods of cessation of activity. [EU] Intestinal: Pertaining to the intestine. [EU] Intestines: The section of the alimentary canal from the stomach to the anus. It includes the large intestine and small intestine. [NIH] Intravenous: Within a vein or veins. [EU] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]
Ischemia: Deficiency of blood in a part, due to functional constriction or actual obstruction of a blood vessel. [EU]
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Jaundice: A clinical manifestation of hyperbilirubinemia, consisting of deposition of bile pigments in the skin, resulting in a yellowish staining of the skin and mucous membranes. [NIH] Jejunum: That portion of the small intestine which extends from the duodenum to the ileum; called also intestinum jejunum. [EU] Lesion: Any pathological or traumatic discontinuity of tissue or loss of function of a part. [EU] Ligament: A band of fibrous tissue that connects bones or cartilages, serving to support and strengthen joints. [EU] Lipid: Any of a heterogeneous group of flats and fatlike substances characterized by being water-insoluble and being extractable by nonpolar (or fat) solvents such as alcohol, ether, chloroform, benzene, etc. All contain as a major constituent aliphatic hydrocarbons. The lipids, which are easily stored in the body, serve as a source of fuel, are an important constituent of cell structure, and serve other biological functions. Lipids may be considered to include fatty acids, neutral fats, waxes, and steroids. Compound lipids comprise the glycolipids, lipoproteins, and phospholipids. [EU] Lipodystrophy: 1. any disturbance of fat metabolism. 2. a group of conditions due to defective metabolism of fat, resulting in the absence of subcutaneous fat, which may be congenital or acquired and partial or total. Called also lipoatrophy and lipodystrophia. [EU] Lupus: A form of cutaneous tuberculosis. It is seen predominantly in women and typically involves the nasal, buccal, and conjunctival mucosa. [NIH]
Lymphocytic: Pertaining to, characterized by, or of the nature of lymphocytes. [EU] Lymphocytosis: effusion. [NIH]
Excess of normal lymphocytes in the blood or in any
Lymphoma: Any neoplastic disorder of the lymphoid tissue, the term lymphoma often is used alone to denote malignant lymphoma. [EU] Malabsorption: Impaired intestinal absorption of nutrients. [EU] Malformation: A morphologic defect resulting from an intrinsically abnormal developmental process. [EU] Malignant: Tending to become progressively worse and to result in death. Having the properties of anaplasia, invasion, and metastasis; said of tumours. [EU] Mannitol: A diuretic and renal diagnostic aid related to sorbitol. It has little significant energy value as it is largely eliminated from the body before any metabolism can take place. It can be used to treat oliguria associated with kidney failure or other manifestations of inadequate renal function and has
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been used for determination of glomerular filtration rate. Mannitol is also commonly used as a research tool in cell biological studies, usually to control osmolarity. [NIH] Medullary: Pertaining to the marrow or to any medulla; resembling marrow. [EU] Megaloblastic: A large abnormal red blood cell appearing in the blood in pernicious anaemia. [EU] Mesenteric: Pertaining to the mesentery : a membranous fold attaching various organs to the body wall. [EU] Metaplasia: The change in the type of adult cells in a tissue to a form which is not formal for that tissue. [EU] Microbiology: The study of microorganisms such as fungi, bacteria, algae, archaea, and viruses. [NIH] Micronutrients: Essential dietary elements or organic compounds that are required in only small quantities for normal physiologic processes to occur. [NIH]
Microvillus: A minute process or protrusion from the free surface of a cell. [EU]
Molasses: The syrup remaining after sugar is crystallized out of sugar cane or sugar beet juice. It is also used in animal feed, and in a fermented form, is used to make industrial ethyl alcohol and alcoholic beverages. [NIH] Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Motility: The ability to move spontaneously. [EU] Mucosa: A mucous membrane, or tunica mucosa. [EU] Mucus: The free slime of the mucous membranes, composed of secretion of the glands, along with various inorganic salts, desquamated cells, and leucocytes. [EU] Myasthenia: Muscular debility; any constitutional anomaly of muscle. [EU] Nausea: An unpleasant sensation, vaguely referred to the epigastrium and abdomen, and often culminating in vomiting. [EU] Necrosis: The sum of the morphological changes indicative of cell death and caused by the progressive degradative action of enzymes; it may affect groups of cells or part of a structure or an organ. [EU] Neoplasms: New abnormal growth of tissue. Malignant neoplasms show a greater degree of anaplasia and have the properties of invasion and metastasis, compared to benign neoplasms. [NIH] Nephropathy: Disease of the kidneys. [EU] Nephrotic: Pertaining to, resembling, or caused by nephrosis. [EU]
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Neural: 1. pertaining to a nerve or to the nerves. 2. situated in the region of the spinal axis, as the neutral arch. [EU] Neuropeptides: Peptides released by neurons as intercellular messengers. Many neuropeptides are also hormones released by non-neuronal cells. [NIH] Neutrophil: Having an affinity for neutral dyes. [EU] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Obstetrics: A medical-surgical specialty concerned with management and care of women during pregnancy, parturition, and the puerperium. [NIH] Oral: Pertaining to the mouth, taken through or applied in the mouth, as an oral medication or an oral thermometer. [EU] Osteomalacia: A condition marked by softening of the bones (due to impaired mineralization, with excess accumulation of osteoid), with pain, tenderness, muscular weakness, anorexia, and loss of weight, resulting from deficiency of vitamin D and calcium. [EU] Osteoporosis: Reduction in the amount of bone mass, leading to fractures after minimal trauma. [EU] Overdose: 1. to administer an excessive dose. 2. an excessive dose. [EU] Oxidation: The act of oxidizing or state of being oxidized. Chemically it consists in the increase of positive charges on an atom or the loss of negative charges. Most biological oxidations are accomplished by the removal of a pair of hydrogen atoms (dehydrogenation) from a molecule. Such oxidations must be accompanied by reduction of an acceptor molecule. Univalent o. indicates loss of one electron; divalent o., the loss of two electrons. [EU] Pallor: A clinical manifestation consisting of an unnatural paleness of the skin. [NIH] Pancreas: An organ behind the lower part of the stomach that is about the size of a hand. It makes insulin so that the body can use glucose (sugar) for energy. It also makes enzymes that help the body digest food. Spread all over the pancreas are areas called the islets of Langerhans. The cells in these areas each have a special purpose. The alpha cells make glucagon, which raises the level of glucose in the blood; the beta cells make insulin; the delta cells make somatostatin. There are also the PP cells and the D1 cells, about which little is known. [NIH] Pancreatitis: Inflammation (pain, tenderness) of the pancreas; it can make the pancreas stop working. It is caused by drinking too much alcohol, by disease in the gallbladder, or by a virus. [NIH]
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Panniculitis: An inflammatory reaction of the subcutaneous fat, which may involve the connective tissue septa between the fat lobes, the septa lobules and vessels, or the fat lobules, characterized by the development of single or multiple cutaneous nodules. [EU] Papule: A small circumscribed, superficial, solid elevation of the skin. [EU] Parasitic: Pertaining to, of the nature of, or caused by a parasite. [EU] Parenteral: Not through the alimentary canal but rather by injection through some other route, as subcutaneous, intramuscular, intraorbital, intracapsular, intraspinal, intrasternal, intravenous, etc. [EU] Pathogen: Any disease-producing microorganism. [EU] Pathologic: 1. indicative of or caused by a morbid condition. 2. pertaining to pathology (= branch of medicine that treats the essential nature of the disease, especially the structural and functional changes in tissues and organs of the body caused by the disease). [EU] Pediatrics: A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence. [NIH] Peptic: Pertaining to pepsin or to digestion; related to the action of gastric juices. [EU] Peritonitis: Inflammation of the peritoneum; a condition marked by exudations in the peritoneum of serum, fibrin, cells, and pus. It is attended by abdominal pain and tenderness, constipation, vomiting, and moderate fever. [EU] Pernicious: Tending to a fatal issue. [EU] Peroral: Performed through or administered through the mouth. [EU] Pharmacist: A person trained to prepare and distribute medicines and to give information about them. [NIH] Physicochemical: Pertaining to physics and chemistry. [EU] Physiologic: Normal; not pathologic; characteristic of or conforming to the normal functioning or state of the body or a tissue or organ; physiological. [EU]
Poisoning: A condition or physical state produced by the ingestion, injection or inhalation of, or exposure to a deleterious agent. [NIH] Polymorphic: Occurring in several or many forms; appearing in different forms at different stages of development. [EU] Porphyria: A pathological state in man and some lower animals that is often due to genetic factors, is characterized by abnormalities of porphyrin metabolism, and results in the excretion of large quantities of porphyrins in the urine and in extreme sensitivity to light. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic
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symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Prednisone: A synthetic anti-inflammatory glucocorticoid derived from cortisone. It is biologically inert and converted to prednisolone in the liver. [NIH]
Prevalence: The number of people in a given group or population who are reported to have a disease. [NIH] Proctitis: Inflammation of the rectum. [EU] Progressive: Advancing; going forward; going from bad to worse; increasing in scope or severity. [EU] Prostaglandins: A group of compounds derived from unsaturated 20carbon fatty acids, primarily arachidonic acid, via the cyclooxygenase pathway. They are extremely potent mediators of a diverse group of physiological processes. [NIH] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]
Prothrombin Time: Measurement of clotting time of plasma recalcified in the presence of excess tissue thromboplastin. Factors measured are fibrinogen, prothrombin, and factors V, VII, and X. It is used for monitoring anticoagulant therapy with coumarins. [NIH] Psychology: The science dealing with the study of mental processes and behavior in man and animals. [NIH] Puberty: The period during which the secondary sex characteristics begin to develop and the capability of sexual reproduction is attained. [EU] Puerperium: The period or state of confinement after labour. [EU] Pyelonephritis: Inflammation of the kidney and its pelvis, beginning in the interstitium and rapidly extending to involve the tubules, glomeruli, and blood vessels; due to bacterial infection. [EU] Radiology: A specialty concerned with the use of x-ray and other forms of radiant energy in the diagnosis and treatment of disease. [NIH] Receptor: 1. a molecular structure within a cell or on the surface characterized by (1) selective binding of a specific substance and (2) a specific physiologic effect that accompanies the binding, e.g., cell-surface receptors for peptide hormones, neurotransmitters, antigens, complement fragments, and immunoglobulins and cytoplasmic receptors for steroid hormones. 2. a sensory nerve terminal that responds to stimuli of various kinds. [EU]
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Recurrence: The return of a sign, symptom, or disease after a remission. [NIH] Reflux: A backward or return flow. [EU] Refractory: Not readily yielding to treatment. [EU] Resection: Excision of a portion or all of an organ or other structure. [EU] Respiratory: Pertaining to respiration. [EU] Rheumatoid: Resembling rheumatism. [EU] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Saliva: The clear, viscous fluid secreted by the salivary glands and mucous glands of the mouth. It contains mucins, water, organic salts, and ptylin. [NIH] Salmonella: A genus of gram-negative, facultatively anaerobic, rod-shaped bacteria that utilizes citrate as a sole carbon source. It is pathogenic for humans, causing enteric fevers, gastroenteritis, and bacteremia. Food poisoning is the most common clinical manifestation. Organisms within this genus are separated on the basis of antigenic characteristics, sugar fermentation patterns, and bacteriophage susceptibility. [NIH] Sanitation: The development and establishment of environmental conditions favorable to the health of the public. [NIH] Sarcoidosis: An idiopathic systemic inflammatory granulomatous disorder comprised of epithelioid and multinucleated giant cells with little necrosis. It usually invades the lungs with fibrosis and may also involve lymph nodes, skin, liver, spleen, eyes, phalangeal bones, and parotid glands. [NIH] Sclerosis: A induration, or hardening; especially hardening of a part from inflammation and in diseases of the interstitial substance. The term is used chiefly for such a hardening of the nervous system due to hyperplasia of the connective tissue or to designate hardening of the blood vessels. [EU] Secretion: 1. the process of elaborating a specific product as a result of the activity of a gland; this activity may range from separating a specific substance of the blood to the elaboration of a new chemical substance. 2. any substance produced by secretion. [EU] Seizures: Clinical or subclinical disturbances of cortical function due to a sudden, abnormal, excessive, and disorganized discharge of brain cells. Clinical manifestations include abnormal motor, sensory and psychic phenomena. Recurrent seizures are usually referred to as epilepsy or "seizure disorder." [NIH] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other
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animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Serology: The study of serum, especially of antigen-antibody reactions in vitro. [NIH] Skeletal: Pertaining to the skeleton. [EU] Spastic: 1. of the nature of or characterized by spasms. 2. hypertonic, so that the muscles are stiff and the movements awkward. 3. a person exhibiting spasticity, such as occurs in spastic paralysis or in cerebral palsy. [EU] Spectrum: A charted band of wavelengths of electromagnetic vibrations obtained by refraction and diffraction. By extension, a measurable range of activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU] Sphincter: A ringlike band of muscle fibres that constricts a passage or closes a natural orifice; called also musculus sphincter. [EU] Spices: The dried seeds, bark, root, stems, buds, leaves, or fruit of aromatic plants used to season food. [NIH] Spondylitis: Inflammation of the vertebrae. [EU] Steatorrhoea: Excessive amounts of fats in the feces, as in malabsorption syndromes. [EU] Steroid: A group name for lipids that contain a hydrogenated cyclopentanoperhydrophenanthrene ring system. Some of the substances included in this group are progesterone, adrenocortical hormones, the gonadal hormones, cardiac aglycones, bile acids, sterols (such as cholesterol), toad poisons, saponins, and some of the carcinogenic hydrocarbons. [EU] Stomach: An organ of digestion situated in the left upper quadrant of the abdomen between the termination of the esophagus and the beginning of the duodenum. [NIH] Substrate: A substance upon which an enzyme acts. [EU] Sulfapyridine: Antibacterial, potentially toxic, used to treat certain skin diseases. [NIH] Swainsonine: An indolizidine alkaloid from the plant Swainsona canescens that is a potent alpha-mannosidase inhibitor. Swainsonine also exhibits antimetastatic, antiproliferative, and immunomodulatory activity. [NIH] Systemic: Pertaining to or affecting the body as a whole. [EU] Telemedicine: Delivery of health services via remote telecommunications. This includes interactive consultative and diagnostic services. [NIH] Thermoregulation: Heat regulation. [EU]
Glossary 263
Thinness: A state of insufficient flesh on the body usually defined as having a body weight less than skeletal and physical standards. [NIH] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH] Titre: The quantity of a substance required to produce a reaction with a given volume of another substance, or the amount of one substance required to correspond with a given amount of another substance. [EU] Toxicology: The science concerned with the detection, chemical composition, and pharmacologic action of toxic substances or poisons and the treatment and prevention of toxic manifestations. [NIH] Transplantation: The grafting of tissues taken from the patient's own body or from another. [EU] Ulcer: A break in the skin; a deep sore. People with diabetes may get ulcers from minor scrapes on the feet or legs, from cuts that heal slowly, or from the rubbing of shoes that do not fit well. Ulcers can become infected. [NIH] Urinary: Pertaining to the urine; containing or secreting urine. [EU] Urology: A surgical specialty concerned with the study, diagnosis, and treatment of diseases of the urinary tract in both sexes and the genital tract in the male. It includes the specialty of andrology which addresses both male genital diseases and male infertility. [NIH] Vaccine: A suspension of attenuated or killed microorganisms (bacteria, viruses, or rickettsiae), administered for the prevention, amelioration or treatment of infectious diseases. [EU] Vascular: Pertaining to blood vessels or indicative of a copious blood supply. [EU] Vertigo: An illusion of movement; a sensation as if the external world were revolving around the patient (objective vertigo) or as if he himself were revolving in space (subjective vertigo). The term is sometimes erroneously used to mean any form of dizziness. [EU] Viral: Pertaining to, caused by, or of the nature of virus. [EU] Withdrawal: 1. a pathological retreat from interpersonal contact and social involvement, as may occur in schizophrenia, depression, or schizoid avoidant and schizotypal personality disorders. 2. (DSM III-R) a substancespecific organic brain syndrome that follows the cessation of use or reduction in intake of a psychoactive substance that had been regularly used to induce a state of intoxication. [EU] Yersinia: A genus of gram-negative, facultatively anaerobic rod- to coccobacillus-shaped bacteria that occurs in a broad spectrum of habitats. [NIH]
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General Dictionaries and Glossaries While the above glossary is essentially complete, the dictionaries listed here cover virtually all aspects of medicine, from basic words and phrases to more advanced terms (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·
Dictionary of Medical Acronymns & Abbreviations by Stanley Jablonski (Editor), Paperback, 4th edition (2001), Lippincott Williams & Wilkins Publishers, ISBN: 1560534605, http://www.amazon.com/exec/obidos/ASIN/1560534605/icongroupinterna
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Dictionary of Medical Terms : For the Nonmedical Person (Dictionary of Medical Terms for the Nonmedical Person, Ed 4) by Mikel A. Rothenberg, M.D, et al, Paperback - 544 pages, 4th edition (2000), Barrons Educational Series, ISBN: 0764112015, http://www.amazon.com/exec/obidos/ASIN/0764112015/icongroupinterna
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A Dictionary of the History of Medicine by A. Sebastian, CD-Rom edition (2001), CRC Press-Parthenon Publishers, ISBN: 185070368X, http://www.amazon.com/exec/obidos/ASIN/185070368X/icongroupinterna
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Dorland’s Illustrated Medical Dictionary (Standard Version) by Dorland, et al, Hardcover - 2088 pages, 29th edition (2000), W B Saunders Co, ISBN: 0721662544, http://www.amazon.com/exec/obidos/ASIN/0721662544/icongroupinterna
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Dorland’s Electronic Medical Dictionary by Dorland, et al, Software, 29th Book & CD-Rom edition (2000), Harcourt Health Sciences, ISBN: 0721694934, http://www.amazon.com/exec/obidos/ASIN/0721694934/icongroupinterna
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Dorland’s Pocket Medical Dictionary (Dorland’s Pocket Medical Dictionary, 26th Ed) Hardcover - 912 pages, 26th edition (2001), W B Saunders Co, ISBN: 0721682812, http://www.amazon.com/exec/obidos/ASIN/0721682812/icongroupinterna /103-4193558-7304618
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Melloni’s Illustrated Medical Dictionary (Melloni’s Illustrated Medical Dictionary, 4th Ed) by Melloni, Hardcover, 4th edition (2001), CRC PressParthenon Publishers, ISBN: 85070094X, http://www.amazon.com/exec/obidos/ASIN/85070094X/icongroupinterna
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Stedman’s Electronic Medical Dictionary Version 5.0 (CD-ROM for Windows and Macintosh, Individual) by Stedmans, CD-ROM edition (2000), Lippincott Williams & Wilkins Publishers, ISBN: 0781726328, http://www.amazon.com/exec/obidos/ASIN/0781726328/icongroupinterna
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·
Stedman’s Medical Dictionary by Thomas Lathrop Stedman, Hardcover 2098 pages, 27th edition (2000), Lippincott, Williams & Wilkins, ISBN: 068340007X, http://www.amazon.com/exec/obidos/ASIN/068340007X/icongroupinterna
·
Tabers Cyclopedic Medical Dictionary (Thumb Index) by Donald Venes (Editor), et al, Hardcover - 2439 pages, 19th edition (2001), F A Davis Co, ISBN: 0803606540, http://www.amazon.com/exec/obidos/ASIN/0803606540/icongroupinterna
266 Celiac Disease
INDEX A Abdomen .........................39, 92, 257, 262 Abdominal.....12, 41, 72, 77, 83, 101, 111, 113, 116, 121, 123, 145, 248, 250, 253, 259 Abortion ...............................133, 148, 247 Adenocarcinoma............................20, 104 Adolescence ..........93, 101, 120, 247, 259 Adverse .......................................133, 142 Alimentary.....34, 121, 123, 248, 249, 255, 259 Alleles ....................................................78 Anaemia ..............................109, 122, 257 Analgesic ...............................................72 Anemia .......12, 23, 72, 77, 113, 114, 116, 132, 160 Aneurysm ............................127, 129, 247 Anomalies ............................................101 Anorexia ..................72, 92, 121, 253, 258 Anthropometry .......................................69 Antibiotic ........................................35, 262 Antibodies...13, 32, 52, 65, 66, 70, 73, 75, 132, 142, 154, 187, 204, 248 Antibody .....22, 53, 65, 68, 73, 74, 78, 88, 89, 93, 116, 144, 204, 248, 250, 262 Antigen ....33, 68, 79, 83, 85, 93, 248, 262 Anus ....................................................119 Aorta ....................................................126 Appendicitis .........101, 102, 112, 121, 251 Arteries ........................................126, 248 Artery ...........................127, 128, 129, 247 Ascites .........................................101, 103 Asymptomatic ........13, 14, 65, 68, 81, 132 Ataxia.....................................................52 Atrophy ..........................96, 109, 115, 160 Atypical ..........................11, 64, 65, 66, 73 B Benign .................................104, 122, 257 Bereavement .......................................118 Bezoars ...............................................101 Biliary.......64, 90, 103, 117, 137, 146, 254 Bioavailability.........................................80 Biochemical .................76, 80, 85, 88, 247 Biosynthesis ..........................................80 Blindness .............................................147 C Capsules..............................................201 Carbohydrate...........34, 69, 166, 200, 253 Carnitine ................................................96 Caustic.................................................101 Cerebellar ..............................................52
Cholangitis .................................. 103, 119 Cholecystitis........................................ 119 Chronic..... 13, 28, 39, 41, 71, 72, 77, 89, 90, 96, 101, 107, 109, 113, 115, 118, 129, 144, 146, 224, 250, 253 Cirrhosis...... 64, 103, 114, 117, 119, 137, 146 Colic .................................................... 102 Colitis . 13, 64, 68, 96, 101, 103, 107, 113, 118, 119, 204 Collagen........................................ 33, 250 Colorectal.................................... 103, 112 Condiments........................................... 19 Constipation ...... 72, 101, 102, 112, 113, 123, 143, 259 Cutaneous......... 34, 81, 92, 104, 256, 259 Cysteine ................................................ 81 Cytokines ........................................ 64, 84 D Degenerative ...................... 121, 199, 251 Dehydration................................. 112, 114 Dermatitis....... 12, 26, 27, 29, 39, 77, 83, 101, 115, 140, 141, 154 Diarrhea .... 12, 30, 39, 41, 66, 67, 71, 72, 75, 77, 83, 101, 102, 112, 113, 114, 115, 116, 128, 143, 145, 146, 188, 198 Diarrhoea .............................. 96, 121, 253 Digestion .... 32, 48, 71, 89, 247, 251, 259, 262 Disposition ............................................ 81 Duodenum ...................... 53, 91, 103, 256 Dyspepsia ..................... 66, 102, 142, 146 E Edema................................................. 146 Encephalopathy .................................. 103 Encopresis .......................................... 101 Endemic .............................................. 115 Endocrinology ..................... 103, 148, 253 Endoscopy ...................... 53, 67, 116, 143 Enzyme ................................. 90, 252, 262 Epidemiological............................. 79, 154 Epithelium ....................................... 80, 84 F Fatigue .............. 13, 41, 72, 114, 145, 185 Fats ... 33, 69, 91, 123, 198, 252, 256, 262 Feces .................... 74, 121, 123, 251, 262 Fibrosis .. 64, 89, 101, 117, 119, 123, 127, 185, 250, 261 Fistula ..................................... 33, 72, 253 Flatulence ........................................... 116 Fructose .............................. 119, 166, 253
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G Gastritis .......................103, 117, 119, 146 Gastroenteritis ......93, 102, 112, 113, 117, 143, 261 Gastrointestinal..... 27, 33, 53, 64, 65, 67, 71, 77, 80, 82, 101, 102, 103, 109, 112, 116, 117, 118, 142, 146, 186, 253 Giardia .................................................113 Glomerulonephritis ................................72 Glucose ......29, 33, 91, 92, 117, 166, 253, 255, 258 H Haplotypes.............................................83 Heartburn.......................72, 112, 142, 146 Hematology ...........................................10 Hemorrhage...........................72, 101, 102 Hepatic ..........................80, 103, 117, 127 Hepatitis..28, 64, 101, 102, 103, 114, 118, 119 Hepatocellular......................................103 Hepatocytes...........................................80 Hernia ..........................................101, 128 Histocompatibility...................................79 Hormones ....... 89, 93, 98, 144, 212, 250, 258, 260, 262 Hydrogen ...89, 91, 92, 187, 249, 254, 258 Hyperplasia....................................93, 261 I Idiopathic .............109, 115, 123, 136, 261 Ileus .....................................................113 Immunity ........................................84, 205 Immunogenetics ..................................142 Induction ..............................................187 Inflammation ....... 68, 82, 89, 90, 93, 109, 121, 145, 146, 248, 250, 251, 253, 261 Ingestion ...25, 39, 74, 100, 101, 123, 144, 201, 259 Inguinal ................................................113 Insulin .....32, 34, 84, 87, 91, 92, 203, 204, 248, 253, 255, 258 Interindividual ........................................80 Intermittent...........................................145 Intestines ..14, 78, 90, 112, 121, 252, 253, 255 Intravenous....................14, 101, 123, 259 Ischemia ................................72, 126, 129 J Jaundice ......................................101, 146 Jejunum .....................59, 83, 91, 251, 256 L Ligament..............................................127 Lipid .................................69, 91, 127, 255 Lipodystrophy ......................................119 Lupus ...............................................21, 28 Lymphocytic.............................64, 68, 204
Lymphoma ...... 34, 53, 67, 133, 145, 154, 184, 256 M Malformation ......................................... 20 Malignant ...... 32, 34, 104, 116, 121, 126, 247, 249, 256 Mannitol ...................................... 183, 185 Medullary ............................................ 186 Megaloblastic ...................................... 109 Mesenteric .......................... 126, 128, 129 Metaplasia............................................. 87 Microbiology.................................. 33, 249 Micronutrients ....................................... 71 Microvillus ........................................... 117 Molasses............................................... 19 Molecular .. 10, 83, 93, 152, 158, 159, 260 Motility................................................. 101 Mucosa .. 24, 34, 65, 67, 69, 96, 184, 256, 257 Mucus ................................................. 113 Myasthenia............................................ 28 N Nausea.................. 72, 113, 116, 121, 253 Necrosis ................................ 72, 123, 261 Neoplasms .................. 101, 104, 122, 257 Nephropathy ......................................... 72 Nephrotic............................................... 72 Neural ........................................... 20, 199 Neuropeptides ............................ 212, 258 Neutrophil.............................................. 82 Niacin .................................................. 199 O Oral ... 80, 89, 92, 183, 185, 212, 249, 258 Osteomalacia ........................................ 64 Osteoporosis...... 20, 23, 75, 77, 100, 111, 112, 114 Overdose ............................................ 199 Oxidation............................................... 69 P Pancreas.... 47, 64, 91, 92, 101, 103, 112, 113, 117, 255, 258 Panniculitis............................................ 64 Parasitic .............................. 113, 122, 253 Parenteral ........................................... 101 Pathologic ............................... 65, 93, 259 Peptic .................................................... 40 Peritonitis .................................... 103, 113 Pernicious ........................... 113, 122, 257 Peroral ................................................ 183 Pharmacist .................................. 170, 174 Physiologic... 71, 89, 90, 92, 93, 249, 252, 257, 260 Poisoning ...... 93, 102, 113, 122, 253, 261 Polymorphic .......................................... 84 Porphyria............................................. 119 Potassium ........................................... 200
268 Celiac Disease
Prednisone ..........................................143 Prevalence....... 21, 65, 66, 68, 75, 77, 79, 143, 187 Proctitis ........................................113, 119 Progressive....................................92, 257 Prostaglandins.....................................186 Proteins ....25, 65, 79, 82, 88, 89, 96, 145, 198, 200, 248, 250 Pruritic ...................................................39 Puberty ................................................144 Puerperium ..........................109, 149, 258 Pyelonephritis ........................................72 R Radiology.............................................117 Receptor ........................................88, 248 Reflux ............72, 101, 102, 119, 143, 146 Refractory ............................................204 Rheumatoid .....................................84, 86 Riboflavin.............................................198 S Saliva ...................................................146 Sanitation.............................................117 Sarcoidosis ..........................................119 Sclerosis ........................................84, 160 Secretion .85, 93, 103, 122, 154, 257, 261 Seizures.............................20, 23, 35, 261 Selenium..............................................200 Serology ................................................70 Skeletal ........................................149, 263 Spastic .................................113, 123, 262
Spectrum..................... 10, 67, 78, 94, 263 Sphincter............................. 146, 149, 262 Spices ................................................... 17 Spondylitis................................. 64, 84, 86 Steatorrhoea ....................................... 109 Steroid..................................... 93, 97, 260 Stomach..... 13, 33, 53, 92, 101, 102, 103, 112, 121, 146, 252, 253, 258 Substrate............................................... 69 Sulfapyridine ......................................... 22 Swainsonine ....................................... 187 Systemic ................. 28, 71, 123, 248, 261 T Thermoregulation................................ 198 Thinness ............................................. 142 Thyroxine ............................................ 200 Titre....................................................... 68 Toxicology..................................... 10, 153 Transplantation ........................... 101, 103 U Ulcer.................................................... 102 Urinary .................................... 35, 72, 263 Urology.................................................. 10 V Vascular ................................................ 21 Vertigo......................................... 235, 263 Viral......................................... 11, 64, 145 W Withdrawal ........................ 67, 70, 83, 115
