15,99 €
Mehr erfahren.
- Herausgeber: John Wiley & Sons
- Kategorie: Ratgeber
- Sprache: Englisch
The everyday guide to understanding and treating Celiac disease
Celiac Disease For Dummies is the ultimate reference for people with the disease and their family members. The book helps readers identify symptoms of the disease, and explains how doctors definitively diagnose celiac disease. It outlines how celiac disease affects the body, and what its consequences could be if untreated. The authors explain how celiac disease is treated, not only through the elimination of gluten from the diet, but with additional nutritional measures and alternative and complementary therapies.
- Provides practical, helpful hints for raising children with Celiac disease
- Also written by Ian Blumer: Diabetes for Canadians For Dummies and Understanding Prescription Drugs for Canadians For Dummies
- Full of anecdotes and helpful tips, here is an invaluable guide to living with, and controlling, Celiac disease
Sie lesen das E-Book in den Legimi-Apps auf:
Seitenzahl: 618
Veröffentlichungsjahr: 2010
Ähnliche
Celiac Disease For Dummies®
Table of Contents
Introduction
About This Book
Conventions Used in This Book
What You Don’t Have to Read
Foolish Assumptions
How This Book Is Organized
Part I: Dealing with the Diagnosis of Celiac Disease
Part II: How Celiac Disease Can Make You Feel
Part III: Treating Celiac Disease
Part IV: The Long Term: Living and Thriving with Celiac Disease
Part V: The Part of Tens
Part VI: Appendixes
Icons Used in This Book
Where to Go from Here
Part I: Dealing with the Diagnosis of Celiac Disease
Chapter 1: Finding Out You Have Celiac Disease
Getting to Know Celiac Disease
Dealing with the Diagnosis of Celiac Disease
Knowing How Having Celiac Disease Feels
Treating Celiac Disease
Living and Thriving with Celiac Disease
Handling the News
Experiencing denial
Being angry
Feeling sad
Taking the next step
Finding Information and Support on the Internet
Knowing whether an Internet site is reputable
Finding a celiac disease support group on the Web
Looking at “Real” (Non-Virtual) Support Groups
Chapter 2: Celiac Disease and You
Knowing What Causes Celiac Disease
Genetic influences
The immune system
Increased uptake of gluten by the small intestine
Environmental factors
Examining Gluten
Knowing where gluten is found
Getting a handle on grains
Comparing Celiac Disease, Food Allergy, and Food Intolerance
Understanding How the Normal Digestive Process Works
Getting down the gastrointestinal tract
Understanding what the pancreas and liver do
Knowing What Goes Wrong When You Have Celiac Disease
Changes to the structure of the small intestine
Changes to the function of the small intestine
Chapter 3: Diagnosing Celiac Disease
Figuring Out Whether You Have Celiac Disease
Understanding the Importance of Symptoms
Knowing What to Expect from the Physical Examination
Getting Blood Tests
Antibody tests
Genetic testing
Other blood tests
Outside Looking In: How an Endoscopy Works
Preparing for your endoscopy
Undergoing the procedure
Knowing what to expect after your endoscopy
Examining What the Doctor Looks for During Your Endoscopy
Exploring your esophagus
Surveying your stomach
Delving into your duodenum
Taking a Little Piece: Small Intestinal Biopsy
Interpreting a biopsy
Knowing when the biopsy may potentially be wrong
Having another small intestinal biopsy
Diagnosing Celiac Disease When You Already Live Gluten-Free
Confirming a diagnosis of celiac disease when you live gluten-free
The role of a gluten challenge
Questioning Your Diagnosis
Second-guessing celiac disease
Looking for suspected celiac disease when it can’t be found
Chapter 4: Screening for Celiac Disease
Knowing When to Screen Someone for Celiac Disease
Determining Who Should Be Screened for Celiac Disease
Screening and genetic ancestry
Screening and symptoms
Screening, personal choices, and one’s stage in life
Understanding How Screening for Celiac Disease Works
Genetic testing
Antibody testing
Knowing which test method is best for you: Genetic testing or antibody testing?
Asymptomatic Celiac Disease Detected by Screening
Chapter 5: What Type Am I? Looking at the Forms of Celiac Disease
What’s in a Name: The Different Types of Celiac Disease
Textbook Disease: Looking at Classical Celiac Disease
Symptoms of classical celiac disease
Diagnosing classical celiac disease
Treating classical celiac disease
When Symptoms Suggest Something Else: Looking at Atypical Celiac Disease
Looking at GI symptoms of atypical celiac disease
Examining non-GI symptoms of atypical celiac disease
Hushed but Not Forgotten: Silent Celiac Disease
Uncovering silent celiac disease
Treating silent celiac disease: Should you or shouldn’t you?
Lurking in the Background: Latent Celiac Disease
Deciding whether latent celiac disease should be treated
Part II: How Celiac Disease Can Make You Feel
Chapter 6: Symptoms of Celiac Disease
Symptoms 101: Looking at the Big Picture
Gut Feelings: Gastrointestinal Symptoms
The gut stops here: Diarrhea, celiac disease, and you
Olfactory challenges: Sniffing out the importance of flatulence
Abdominal symptoms: Belly pain, bloating, and beyond
Reflux and heartburn
Indigestion
Weight Loss
Weight loss due to active celiac disease
Weight loss due to the gluten-free diet
Weight loss due to a co-existing condition
Weight loss due to a complication of celiac disease
Failure to Thrive in Children
Non-Gastrointestinal Symptoms and Celiac Disease
Rash decisions
Mulling over mood, thinking, and neurological issues
Feeling fatigued
Hormonal (endocrine) problems
Musculoskeletal problems
Cancer
Gynecological and obstetrical problems
Other problems
Chapter 7: Conditions Caused by Celiac Disease
Vanishing Vitamins
Considerations about taking vitamin supplements
Vitamin A
Vitamin B9 (folate or folic acid)
Vitamin B12
Vitamin D
Vitamin E
Vitamin K
Missing Minerals
Calcium deficiency
Iron deficiency
Other mineral deficiencies
Low Blood: Anemia
Anemia due to low iron (“iron-deficiency anemia”)
Anemia due to low levels of folic acid
Anemia due to low levels of vitamin B12
Skeleton Isn’t Just An Olympic Sport: Celiac Disease and Your Bones
Osteoporosis
Rickets
Osteomalacia
Oral Health
Dental health
The rest of the mouth
Infertility and Complications of Pregnancy
Hyposplenism and Increased Risk of Infection
Chapter 8: Conditions Associated with Celiac Disease
Understanding What “Associated” Means
Skin Deep: Dermatological Conditions
Dermatitis herpetiformis
Vitiligo
Psoriasis
Eczema
Feeling Down in the Dumps: Depression
Getting a Head Start: Neurological Manifestations
Migraine headache
Peripheral neuropathy
Ataxia
Epilepsy (seizures)
Attention-Deficit/Hyperactivity Disorder (ADHD)
Autism
Hormonal Health: Endocrine Disorders and Celiac Disease
Type 1 diabetes
Thyroid disease
Adrenal insufficiency (Addison’s disease)
Disjointed: Rheumatologic Disorders
Connective tissue disorders
Fibromyalgia
Raynaud’s phenomenon
Liver and Bile Duct Conditions
Abnormal liver enzyme levels
Primary biliary cirrhosis
Autoimmune hepatitis
Primary sclerosing cholangitis
Chromosomal Disorders
Down syndrome
Turner syndrome
IgA Deficiency
Chapter 9: Celiac Disease and Cancer
Assessing How Great the Increased Risk Is
Factors influencing your risk of cancer
Possible reasons for an increased risk of cancer
Looking at the Types of Cancer for Which You Are at Increased Risk
Enteropathy-associated T cell lymphoma
Other lymphomas
Small intestine adenocarcinoma
Oropharyngeal cancer
Esophageal cancer
Other cancers and celiac disease
Screening for Cancer
Preventing Cancer
Part III: Treating Celiac Disease
Chapter 10: Treating Celiac Disease with a Gluten-Free Diet
Going Gluten-Free
Knowing what “gluten-free” means
Knowing whether you need to eliminate other things besides gluten
Examining the reasons for a gluten-free diet
Understanding the downsides of a gluten-free diet
Getting help
Shopping Successfully for Gluten-Free Foods
Cooking Gluten-Free Food
Baking your own gluten-free food
Planning meals for the newly diagnosed
Eating Out Gluten-Free
Eating in restaurants
Traveling with celiac disease
Visiting friends and family
Planning for Emergencies
Dealing with Cross-Contamination
Sticking with a Gluten-Free Diet
Tracking Down Hidden Sources of Gluten
Checking the ingredients of prescription medications
Verifying the ingredients of over-the-counter medications
Knowing other sources of gluten
Chapter 11: Exploring Other Nutritional Considerations
Understanding Nutritional Deficiencies in Celiac Disease
Malnutrition in celiac disease
Looking at common nutritional challenges
Being Overweight and Having Celiac Disease
Celiac Disease and Lactose Intolerance
Who gets lactose intolerance?
How lactose intolerance makes you feel
Celiac disease and your lactase levels
Diagnosing lactose intolerance
Treating lactose intolerance
Living Gluten-Free as a Vegetarian
Chapter 12: Are You Responding to Your Gluten-Free Diet? (And What to Do If You Aren’t)
Knowing Whether Your Gluten-Free Diet Is Working
Surveying your symptoms
Antibody blood tests
Other blood tests
Another intestinal biopsy?
The persistently abnormal small intestine biopsy
Exploring Why Your Gluten-Free Diet May Not Be Working
Continued gluten exposure
Conditions complicating celiac disease
Conditions coexisting with celiac disease
Wrong diagnosis
The overall approach if you are not responding to your gluten-free diet
When Your Celiac Disease Won’t Settle Down
Refractory celiac disease
Enteropathy-associated T cell lymphoma (EATCL)
Part IV: The Long-Term: Living and Thriving with Celiac Disease
Chapter 13: Alternate and Complementary Therapies
Important Safety Info about Complementary and Alternative Medicines
Prebiotics and Probiotics
Herbal Supplements
Vitamin Supplements
Digestive Enzymes
Following the Specific Carbohydrate Diet
Treating Celiac Disease by Avoiding Foods Other Than Gluten
Removing a limited number of foods from your diet
Trying an elimination diet
Removing certain sugars from the diet
Going Gluten-Free to Treat Disorders Other Than Celiac Disease
Gluten sensitivity
Going gluten-free to treat neurological and mood disorders
Chapter 14: Celiac Disease and Pregnancy, Children, and Beyond
Pregnancy and Celiac Disease
Infertility and celiac disease
Complications of pregnancy
Timing of Gluten Introduction in Infancy
Detecting Celiac Disease in Children
Diagnosing children with celiac disease
Screening children for celiac disease
Starting Your Child on a Gluten-free Diet
Shopping and Cooking with Your Child Who Has Celiac Disease
Growing Up Gluten-Free
Dealing with the preschool years
Helping your child through the elementary school years
Grasping teenage challenges
Sending your child off to college
Chapter 15: Ongoing Care of Celiac Disease
Monitoring Your Celiac Disease
Determining how often you should see your health care providers
Knowing who does the monitoring
Knowing what is discussed during a monitoring visit
Monitoring you through testing
Managing Ongoing Nutrition Issues
Weighty issues
Becoming constipated
Falling Off the Diet
Taking Charge of Your Celiac Health
Preparing for your appointment with your celiac disease specialist
Knowing what to ask your doctor
Becoming an expert on your condition
Being an Advocate for Your Celiac Health
Dealing with insurance companies
Having your doctor help you advocate for yourself
Handling hospitalizations
Selecting a nursing home
Chapter 16: What the Future May Hold
Devising Better Ways of Determining Your Risk of Getting Celiac Disease
Finding Out Why Genetically Susceptible People Get Celiac Disease
Improving Ways to Diagnose and Monitor Celiac Disease
Better ways to diagnose celiac disease
Better ways to monitor celiac disease that isn’t responding to a gluten-free diet
Developing New Treatments for Celiac Disease
Reducing intestinal exposure to gluten
Decreasing gluten uptake by the intestinal wall
Preventing Celiac Disease: When to Introduce Gluten in a Child’s Diet
Increasing Public Awareness
Public awareness and public policy
Public awareness, information, and misinformation
Making sense of new information
Identifying Areas for Further Investigation
Discovering more about who gets celiac disease and why
Preventing and screening for celiac disease
Finding better ways to make the diagnosis of celiac disease
Finding out what happens to people with celiac disease as time goes by
Improving treatment
Finding better ways of managing refractory celiac disease
Discovering more about gluten sensitivity
Knowing whether tolerance to gluten occurs
Increasing public awareness of celiac disease
Part V: The Part of Tens
Chapter 17: Ten Frequently Asked Questions
Do I Need to Have a Small Intestine Biopsy to Diagnose Celiac Disease?
Can I Protect My Child from Getting Celiac Disease?
Should I Have My Child Tested for Celiac Disease?
Can You Outgrow Celiac Disease?
If I Have Celiac Disease, Will My Child or Sibling Also Have It?
How Much Gluten Can I Safely Consume If I Have Celiac Disease?
Can I Skip the Diet and Just Take an Iron Supplement to Treat My Low Iron?
Should My Whole Family Eat Gluten-free If Only One Member Has Celiac Disease?
Is It All Right for Me to Eat Oats?
Does Avoiding Gluten Protect Me from Getting Other Autoimmune Diseases?
Chapter 18: Ten Tips for Living Successfully with Celiac Disease
Strive to Be Healthy
Keep Informed about Your Disease
Discover How Avoiding Gluten Is Sexy
Prepare for Your Child’s Visit to Friends
Learn How to Eat Out without Standing Out
Figure Out How to Save On Your Food Purchases
Be Prepared for Blank Looks (Or Worse)
Have a Good Answer to the Inevitable Question — “What Happens When You Eat Wheat?”
Pack Your Bags, We’re Going To . . .
Deal with the Slipups
Chapter 19: Ten Myths, Misperceptions, and Falsehoods about Celiac Disease
Heavy People Can’t Have Celiac Disease
Eat Gluten and You Feel Immediately Ill
You Can Have Borderline Celiac Disease
You Cannot Eat Buckwheat
You Must Avoid All Products with Gluten
Vinegar Is Forbidden
Feeling Fine Means No Celiac Disease
You Are More Likely to Have Food Allergies and Food Intolerance
You Can’t Share Cooking Implements
If Your Old Symptoms Return, It’s Likely Due to Celiac Disease
Part VI: Appendixes
Appendix A: Web Sites Wor th Visiting
The National Institutes of Health (NIH) Celiac Disease Awareness Campaign
Children’s Digestive Health and Nutrition Foundation (CDHNF)
The Center for Nutrition Policy of the United States Department of Agriculture
The National Institutes of Health Office of Dietary Supplements
Health Canada
The National Dairy Council
Lactose intolerance
Following a vegetarian diet
Food allergies
Gluten-free medications
Advocating for those on gluten-free diets
Inflammatory bowel disease
Functional gastrointestinal disorders
Appendix B: Organizations for People with Celiac Disease
The Canadian Celiac Association (CCA)
The Celiac Sprue Association (CSA)
The Gluten Intolerance Group of North America (GIG)
La Fondation Québécoise de la Maladie Coeliaque
The American Celiac Disease Alliance
The Celiac Disease Foundation
The National Foundation for Celiac Awareness
Eastern U.S.
Central U.S.
West Coast U.S.
Celiac Disease For Dummies®
Ian Blumer and Sheila Crowe
Celiac Disease For Dummies®
Published byJohn Wiley & Sons Canada, Ltd6045 Freemont BoulevardMississauga, Ontario, L5R 4J3
www.wiley.com
Copyright © 2010 by John Wiley & Sons Canada, Ltd.
Published by John Wiley & Sons Canada. Ltd.
All rights reserved. No part of this book, including interior design, cover design, and icons, may be reproduced or transmitted in any form, by any means (electronic, photocopying, recording, or otherwise) without the prior written permission of the publisher. Requests to the Publisher for permission should be addressed to the Permissions Department, John Wiley & Sons Canada, Ltd., 6045 Freemont Blvd., Mississauga, ON L5R 4J3, or online at http://www.wiley.com/go/permissions. For authorization to photocopy items for corporate, personal, or educational use, please contact in writing The Canadian Copyright Licensing Agency (Access Copyright). For more information, visit www.accesscopyright.ca or call toll free, 1-800-893-5777.
Trademarks: Wiley, the Wiley Publishing logo, For Dummies, the Dummies Man logo, A Reference for the Rest of Us!, The Dummies Way, Dummies Daily, The Fun and Easy Way, Dummies.com, Making Everything Easier, and related trade dress are trademarks or registered trademarks of John Wiley & Sons, Inc. and/or its affiliates in .the United States and other countries, and may not be used without written permission. All other trademarks are the property of their respective owners. Wiley Publishing, Inc., is not associated with any product or vendor mentioned in this book.
Limit of Liability/Disclaimer of Warranty: The contents of this work are intended to further general scientific research, understanding, and discussion only and are not intended and should not be relied upon as recommending or promoting a specific method, diagnosis, or treatment by physicians for any particular patient. The publisher and the author make no representations or warranties with respect to the accuracy or completeness of the contents of this work and specifically disclaim all warranties, including without limitation any implied warranties of fitness for a particular purpose. In view of ongoing research, equipment modifications, changes in governmental regulations, and the constant flow of information relating to the use of medicines, equipment, and devices, the reader is urged to review and evaluate the information provided in the package insert or instructions for each medicine, equipment, or device for, among other things, any changes in the instructions or indication of usage and for added warnings and precautions. Readers should consult with a specialist where appropriate. The fact that an organization or Website is referred to in this work as a citation and/or a potential source of further information does not mean that the author or the publisher endorses the information the organization or Website may provide or recommendations it may make. Further, readers should be aware that Internet Websites listed in this work may have changed or disappeared between when this work was written and when it is read. No warranty may be created or extended by any promotional statements for this work. Neither the publisher nor the author shall be liable for any damages arising herefrom.
For general information on John Wiley & Sons Canada, Ltd., including all books published by Wiley Publishing, Inc., please call our distribution centre at 1-800-567-4797. For reseller information, including discounts and premium sales, please call our sales department at 416-646-7992. For press review copies, author interviews, or other publicity information, please contact our publicity department, Tel. 416-646-4582, Fax 416-236-4448.
For technical support, please visit www.wiley.com/techsupport.
Wiley also publishes its books in a variety of electronic formats. Some content that appears in print may not be available in electronic books.
Library and Archives Canada Cataloguing in Publication Data
Blumer, Ian
Celiac disease for dummies / Ian Blumer, Sheila Crowe.
Includes index.
ISBN 978-0-470-16036-7
1. Celiac disease--Popular works.
I. Crowe, Sheila II. Title.
RC862.C44B58 2010 616.3’99 C2010-900051-X
Printed in the United States
1 2 3 4 5 RRD 14 13 12 11 10
About the Authors
Ian Blumer, MD, FRCPC, is a specialist in internal medicine in the Greater Toronto Area of Ontario, Canada. He has a teaching appointment with the University of Toronto, is the medical advisor to the adult program of the Charles H. Best Diabetes Centre in Whitby, Ontario, and is a member of the Clinical and Scientific Section of the Canadian Diabetes Association (CDA), where he currently serves as Chair of the Dissemination and Implementation Committee for the 2008 CDA Clinical Practice Guidelines.
Dr. Blumer is the author of What Your Doctor Really Thinks (Dundurn, 1999), and the co-author of Diabetes For Canadians For Dummies and Understanding Prescription Drugs For Canadians For Dummies (co-written with Dr. Heather McDonald-Blumer). He can be found on the Web at www.ourdiabetes.com. Dr. Blumer would love to get your comments about this book; please email him at [email protected].
Sheila Crowe, MD, FRCPC, FACP, FACG, AGAF is a Professor of Medicine at the University of Virginia in Charlottesville, Virginia, USA. She is a gastroenterologist with special interests in immune, infectious and food-mediated gastrointestinal disorders including celiac disease and food allergies. Dr. Crowe is named in “Best Doctors in America” and nationally known as an educator, clinician and researcher. She has served on various committees and panels of the American Gastroenterological Association and many other organizations. Dr. Crowe is the medical advisor to the local “Charlottesvilli” Celiac Support Group. She especially enjoys the opportunity to educate gastroenterologists, other physicians and patients and their families about celiac disease whether it is in Charlottesville, elsewhere in the USA or overseas.
Dedication
Ian: This book is dedicated to those many people — some of whom I know and love (like you, Laura!), some of whom are my patients, and most of whom I’ve never met — who live with, but refuse to be beaten back by, the challenges of co-existing with celiac disease.
Sheila: This book is dedicated to my mother-in-law, Kay Ernst, who passed away in 2002. In 1972 she co-founded the first national support group in North America, the Canadian Celiac Association, and spent much of her remaining life working for the benefit of individuals with celiac disease. I am also dedicating this book to everyone who lives with celiac disease including my patients and my husband Peter and those individuals whose mission it is to help those who have celiac disease. These include a growing group of gastroenterologists, nutritionists, and other health care professionals whose main interest is in caring for patients with celiac disease and others like Kay who donate their time and energy in organizations providing information and support to the increasing numbers of people with celiac disease and their families.
Authors’ Acknowledgements
Ian: I would like to thank my Wiley editors, Robert Hickey, Tracy Barr, and Colleen Totz Diamond for continuing to mentor me in my ongoing journey as I strive to eventually write an entire page — oh heck, even a single paragraph — free of a red edit. On the medical front, I would like to (again) thank Dr. Sloane Waitzer for her helpful advice.
Sheila, my co-author, deserves an incredible thank you, not only for the efforts that she’s invested in helping bring this book to life, but also for the incalculable other ways — scientific, clinical, volunteer, . . . that she has helped people living with celiac disease lead healthy lives.
Sheila: I am most grateful to my co-author Ian for his energy, humor, hard-work and support as we have worked together making this book a reality. I wish to acknowledge the helpful contributions of the members of our local “Charlottesvilli” celiac disease support group, of Janet Rinehart, chairman and founder of the Houston Celiac Support Group and a friend and colleague from the nine years I spent in Texas, and the excellent group of nutritionists that I have worked with at the University of Virginia since 2001 including Carol Parrish, Amy Pagano, and others over the years. I am also grateful to Shelley Case as her efforts provide outstanding resources on the gluten-free diet whether you are a patient or a health professional like me. Thanks also to our Wiley editors, Robert Hickey, Tracy Barr, and Colleen Totz Diamond for their assistance.
Publisher’s Acknowledgements
We’re proud of this book; please send us your comments at http://dummies.custhelp.com. For other comments, please contact our Customer Care Department within the U.S. at 877-762-2974, outside the U.S. at 317-572-3993, or fax 317-572-4002.
Some of the people who helped bring this book to market include the following:
Acquisitions and Editorial
Project Editors, U.S.: Tracy L. Barr and Colleen Totz Diamond
Acquiring Editor: Robert Hickey
Project Coordinator, Canada: Pauline Ricablanca
Cartoons: Rich Tennant (www.the5thwave.com)
Composition
Project Coordinator, U.S.: Lynsey Stanford
Layout and Graphics: Kelly Kijovsky, Christine Williams
Proofreader: Leeann Harney
Indexer: Cheryl Duksta
John Wiley & Sons Canada, Ltd
Bill Zerter, Chief Operating Officer
Karen Bryan, Vice-President, Publishing Services
Jennifer Smith, Publisher, Professional & Trade Division
Alison Maclean, Managing Editor
Publishing and Editorial for Consumer Dummies
Diane Graves Steele, Vice President and Publisher, Consumer Dummies
Kristin Ferguson-Wagstaffe, Product Development Director, Consumer Dummies
Ensley Eikenburg, Associate Publisher, Travel
Kelly Regan, Editorial Director, Travel
Composition Services
Debbie Stailey, Director of Composition Services
Introduction
What a difference a few years make! It was only a short time ago that few people had ever heard of celiac disease. And, when it was a subject of discussion, the conversation was typically rife with misconceptions, misapprehensions, and misinformation. Compounding this unfortunate scenario was the fact that celiac disease was little taught in medical schools, and, outside of select health care disciplines, was off the medical radar. Heck, it wasn’t just off the radar; it was somewhere south of Alpha Centauri. Well, that was then and this is now. How topical is celiac disease these days? How much importance is now properly placed on this common condition? Well, let’s put it this way: You have in your hands an entire book devoted to the subject!
There’s not much to love about having celiac disease. Celiac disease can make you feel crummy. It can lead to damage to your body. It requires constant treatment and vigilance. And it’s a lifelong condition. So if you think that being dealt a celiac disease diagnosis is patently and profoundly unfair, we won’t disagree because you’re right; it is unfair. But here’s the thing: Although having celiac disease is no piece of cake, the wonderful thing — the absolutely . . . wonderful . . . thing — is that you can be entirely healthy with your celiac disease. You can live a full, active, long and productive life with your celiac disease. You can explore the ocean depths or climb the Himalayas. You can work on the city subway or have a top-floor office in the nearest skyscraper. You can play in the NFL or play in the backyard sandbox (age permitting!). And, as for celiac disease not being a piece of cake, well, actually you can have a piece of cake . . . so long as it doesn’t contain a nutrient called gluten. As we look at in detail in this book, avoiding gluten is the key to successfully living with celiac disease. The world can be your oyster (hey, oysters are gluten-free so have as many as you want) and in this book we show you how.
About This Book
We’ve written this book for people living with celiac disease, and in case you think this phrase is ambiguous, this is by intention because if one member of a family has celiac disease, everyone in the family is very much living with celiac disease. Which is all to say that we hope Celiac Disease For Dummies is helpful whether you are the one who has celiac disease or you are reading this book because someone you care about — a child, another family member, or another loved one — has the condition.
Throughout this book, when we discuss celiac disease as causing one or another problem, we are typically talking about untreated or insufficiently treated celiac disease. Celiac disease that is properly treated (by, as you will discover, meticulously following a diet free of a nutrient called gluten) typically causes . . . nothing! Also, whenever we use the term active celiac disease, we are again referring to celiac disease that is untreated or insufficiently treated, in which case there is still active inflammation in the small intestine (something which we explain in detail in Chapter 2).
We hope you find this book helpful, interesting, informative, and even entertaining. We’d truly love to get your feedback. You can reach us by e-mail at [email protected].(We apologize in advance, however, for our being unable to provide responses for medical advice.)
Conventions Used in This Book
This book is co-written by Sheila (hi) and Ian (hello). Sheila lives in Charlottesville, Virginia, and Ian lives in Toronto, Ontario. So, begging the indulgence of our Canadian readers, we’ve elected to use U.S. spelling since that is what most of our readers use.
Most people living in Canada and the United States receive the bulk of their health care from a physician, but increasingly people are also (or, instead) seeing physician assistants, nurse practitioners, and other important allied health care professionals. Because it would be onerous to repeatedly write out (and, we suspect, boring for you to read) each of these titles, we hope you will indulge us and, when we write that we recommend you “see your physician” or “see your primary care provider,” that you will read this to mean we are advocating that you contact whichever health care professional acts as your main health care provider.
And speaking of health care providers, throughout this book we discuss the terribly important role of registered dietitians in assisting people living with celiac disease to take charge of their condition by healthy, gluten-free eating. Registered dietitians have passed stringent academic requirements and are part of an officially certified health care profession. Again, because it gets awfully repetitious to add the word “registered” before each use of the word “dietitian,” whenever we use the word “dietitian” we are specifically (and only) referring to registered dietitians. Similarly, when we use the word nutritionist we are once again using this term interchangeably with registered dietitian.
Following are a few other standard conventions you’ll see in this book:
Italic typeisused for emphasis and to introduce new terms.
Bold indicates the action parts in numbered steps. It also emphasizes the keywords in a bulleted list.
Web addresses show up in monofont.
What You Don’t Have to Read
We hope that you’ll find everything in this book to be both interesting and helpful; however, there are a couple of things that, should you wish, you can take a pass on without missing out on any essential information.
Sidebars are shaded areas that contain additional, often scientifically-based detail on selected topics.
Paragraphs that follow a Technical Stuff icon (we explain what icons are all about later in this Introduction) are, as you might surmise, comprised of, well, technical stuff.
Reading these materials can be deferred indefinitely (unless you’re married to us in which case — Peter and Heather take note — we’ll be mortally offended and deeply hurt if you don’t read every single word we’ve written!).
Foolish Assumptions
We have written this book based on the assumption that whatever your knowledge of celiac disease, you want to learn more. Period. If you know nothing about celiac disease you will find this book allows you to readily discover the basics, and if you’re already acquainted with the condition, you’ll discover additional details to meet your needs.
How This Book Is Organized
This book is divided into six parts to help you readily find the information you’re seeking.
Part I: Dealing with the Diagnosis of Celiac Disease
In this part, we define the condition and look at how it can impact you emotionally and psychologically. We also take a journey down the gastrointestinal tract and look at how it functions both normally and when injured by celiac disease. You’ll discover possible causes for celiac disease (gluten triggers the condition, but why this happens to some people and not others is largely a mystery), the way in which celiac disease is diagnosed, who should be tested for it, and the different types of celiac disease.
Part II: How Celiac Disease Can Make You Feel
Some people with undiagnosed celiac disease have nary a symptom while others feel like they’ve been hit by a train. In this part, we look at the many different symptoms that can be caused by celiac disease and we point out symptoms that might otherwise be potentially passed off as being unrelated. We also look at conditions, like anemia, that can be caused by celiac disease, and other conditions, like type 1 diabetes with which celiac disease can be associated.
Part III: Treating Celiac Disease
The key to successfully managing celiac disease is the complete elimination of gluten from your diet. We explore this essential nutritional consideration in detail in this part. We also provide helpful tips for shopping and cooking gluten-free and what to do should your diet seem not to be working. Also, we explore alternative and complementary treatments.
Part IV: The Long Term: Living and Thriving with Celiac Disease
Until a cure is found, if you have celiac disease today, you’re going to have it tomorrow, the next day, and for the foreseeable future. Therefore, it’s helpful to know how to deal with celiac disease at various stages of life. In this part, we look at how celiac disease can be managed from childhood to adulthood. We also look at how you and your health care team can monitor your celiac disease both when it’s under control and when it seems not to be. Lastly, we explore some potentially exciting future therapies that may make living with celiac disease a lot simpler.
Part V: The Part of Tens
The Part of Tens presents key information that you won’t want to miss. Here you discover ten frequently asked questions (likely including those you may have asked yourself), ten tips for living normally, and ten myths, misperceptions, and falsehoods you may have heard about celiac disease.
Part VI: Appendixes
The Internet is an invaluable, but sometimes intimidating (or, even worse, misleading) resource. In this part, we provide a handy-dandy list of helpful celiac disease Web sites worth visiting and a listing of organizations for people living with celiac disease.
Icons Used in This Book
There exist political, intellectual, social, and goodness knows how many other icons in society. Well, we don’t discuss those here! No, the icons we mention here are those that serve as little flags or identifiers — bookmarks if you will — that let you know what information you’re going to find in the paragraph that follows.
This icon signifies that we’re sharing a story about a patient. These stories have been specifically selected because they contain elements that you may well relate to. (The names and other identifiers have been changed to maintain confidentiality.)
This icon lets you know that we’re about to drop some medical jargon on you. Don’t be alarmed; we then define or explain the term before we move on.
This icon indicates we’re providing information of a technical nature. You may find this interesting to read, but it is not fundamental to your understanding of celiac disease.
When you see this icon, it means the information is essential and you would be well served to pay special attention.
Many — indeed most — aspects of living with celiac disease you can manage quite nicely on your own, thank you very much. But there are times when you need to seek medical attention. This icon lets you know we’re discussing something that will require you to see your primary care provider (be it your family physician, physician assistant, nurse practitioner, and so forth), your celiac disease specialist physician, your dietitian or another member of your health care team in order to get help.
This icon indicates that we’re sharing a practical piece of information that will arm you with a time-saving or grief-avoiding measure.
This icon means we’re discussing critical issues and that immediate or imminent harm could come to you if the information is overlooked or not heeded.
Where to Go from Here
Celiac Disease For Dummies is written in modular format, which is basically a fancy way of saying that this book is structured so that you can open it to whatever topic interests you at a particular time rather than having it to read it from front to back. Having said that, if you have no familiarity with celiac disease, you may find that reading it in just that way works best for you.
Not sure where to start? Well, recognizing there isn’t a bad place to begin your journey of discovery, if you’ve just been diagnosed and are finding the whole notion of having celiac disease overwhelming, have a look at Chapter 1 to discover the emotional impact of being told you have celiac disease. Alternatively, you may want to flip to Chapter 2 and delve right into an exploration of the human gut, how it works, and what happens to the gut if you have celiac disease. Or you may want to do what Ian does whenever he takes a For Dummies book home (other than the ones he’s written!) and start by reading the Part of Tens chapters. Sure, some of it won’t make sense until you’ve read other parts of the book, but you may still find it the most interesting section of all to read.
Part I
Dealing with the Diagnosis of Celiac Disease
In this part . . .
Being diagnosed with celiac disease is, for many people, both a shock (who wants to be told you have a disease for which there is no cure?) and a relief (knowing that with a change to your diet you can maintain good health). In this part, you find out how the diagnosis of celiac disease is made, the psychological and physical impact of the condition, and the various types of celiac disease.
Chapter 1
Finding Out You Have Celiac Disease
In This Chapter
Understanding celiac disease
Coming to terms with the diagnosis of celiac disease
Considering how celiac disease can make you feel
Treating celiac disease
Living well with celiac disease
Coping with a celiac disease diagnosis
Looking at celiac disease support groups
When you first find out that you or your loved one has celiac disease, you may be shocked. No one likes to hear bad news, and, as so often happens in this type of situation, you may recall little other than the words celiac disease from the conversation you have with your doctor that day.
Over the next few days and weeks, your mind may race non-stop as you mull over your new diagnosis and try to come to grips with it. Or, if the diagnosis is brand new to you, perhaps you are right now in the process of trying to deal with the news.
Celiac Disease For Dummies provides you not just with the facts about celiac disease, but the tools to help you master it. In this chapter, our goal is to help you understand and come to terms with your diagnosis.
Getting to Know Celiac Disease
Celiac disease, also known as celiac sprue, non-tropical sprue, and gluten-sensitive enteropathy, is a condition in which consuming gluten — a protein found in wheat, rye, barley, and some other grains — leads, in susceptible people, to damage to the lining of the small intestine, resulting in the inability to properly absorb nutrients into the body. This can lead to many different symptoms, including fatigue, malaise (feeling generally poorly), bloating, and diarrhea. Left untreated or insufficiently treated, celiac disease can lead to damage to other organs. If properly treated, celiac disease typically leads to . . . nothing!
In your travels, you may see the word celiac spelled as coeliac. Both terms refer to the same condition. Celiac is the spelling far more commonly used in North America and, hence, the spelling we use throughout this book. Incidentally, the term celiac (or coeliac) comes from the Greek word Koila, which refers to the abdomen.
Doctors have known about celiac disease for a long time. Articles describing individuals suffering from diarrhea (most likely due to what we now call celiac disease) first appeared over two thousand years ago. It was, however, Dr. Samuel Gee who, in London, England in 1887, first described the condition in detail and even presciently observed that successful therapy was to be found in changing a patient’s diet.
Dealing with the Diagnosis of Celiac Disease
Perhaps you are already aware (and if you’re not, you soon will be as it is a recurring theme in this book) of the key role that a nutrient called gluten plays in triggering celiac disease. As we discuss in Chapter 2, however, although gluten triggers the condition, that’s not quite the same as saying it causes the condition.
By way of analogy, if ever you were working on your computer and you routinely pressed a key only to suddenly have your computer crash, one could appropriately say that pressing the key triggered the crash, but an underlying software glitch caused the problem in the first place.
What, then, causes celiac disease? The quick answer is we don’t know. The more complicated answer is a combination of having a susceptibility to the condition by virtue of one’s genetic make-up in conjunction with some as yet unknown environmental factor. Chapter 2 contains the full story on the cause, as best we understand it, of celiac disease.
Unless people are ill with some sort of gastrointestinal (GI) ailment, they understandably generally think little, if at all, about the incredibly complex processes involved in extracting the good from the food we eat and ridding our bodies of the stuff we don’t need. That makes sense. When celiac disease enters your life (either directly or by virtue of a family member now being affected by it), however, having some familiarity with your GI system proves beneficial. Chapter 2 explains how your GI system works when you’re healthy and how it malfunctions when you have celiac disease.
Discovering celiac disease
The first definitive report of celiac disease was made by Dr. Samuel Gee in London, England in 1887 in his seminal study “On the Coeliac Affection.” Dr. Gee astutely observed that “if the patient can be cured at all, it must be by means of diet.”
He experimented with various diets and noted that “A child, who was fed upon a quart of the best Dutch mussels daily, throve wonderfully, but relapsed when the season for mussels was over.” It is, perhaps no surprise to any parent that Dr. Gee also reported, “Next season (the child) could not be prevailed upon to take them.”
In 1950, the link between celiac disease and wheat was finally established. In that year, Dr. Willem-Karel Dicke, a Dutch pediatrician, reported that children with symptoms of celiac disease got better when wheat was removed from their diet.
His discovery was based on observations that during World War II — during which wheat products were in short supply in Holland — previously unwell children, now deprived of wheat-based products, had relief from their symptoms with them only to return upon the reintroduction of wheat into their diet after the end of the war.
With the realization that the absence of wheat relieved symptoms and the availability of wheat resulted in symptoms, Dr. Dicke joined that pantheon of clever people who, by using just their keen powers of observation, had made discoveries that were to improve the lives of millions of people.
Some diseases are easy to diagnose. Tell a doctor you have spells where you see flashing lights followed by a throbbing headache, and, dollars to donuts, the doctor will quickly inform you that you may be suffering from migraine headaches.
Diagnosing celiac disease is never that simple. It involves an interview and examination by a physician, and necessitates investigations typically including blood tests and always having a fiberoptic scope passed through your mouth, down your esophagus, through your stomach and into your small intestine where a biopsy is then taken. Okay, we admit, that may not sound particularly pleasant, but as you see in Chapter 3, it ain’t so bad at all.
If you are diagnosed with celiac disease, or if a close relative has it, you may be wondering whether other family members are similarly affected. In Chapter 4, we look at who should be screened (tested) for celiac disease and how the screening should be done. In Chapter 5, we discuss the different types of celiac disease, including those forms typically found at the time of screening.
Knowing How Having Celiac Disease Feels
It could well be that you were diagnosed with celiac disease after having been unwell for quite some time. If so, then when you read this section’s heading (“Knowing How Having Celiac Disease Feels”), you may have said to yourself, “Hey, I can tell you how it feels. It feels crummy. I had belly pain and I had indigestion and I had . . . ” Yup, those things sure can happen. But so too can many other symptoms or, on the other side of the spectrum, few or even no symptoms at all.
In Chapter 6, we look at the whole panoply of symptoms one can experience if one has celiac disease. Some of these may lead you to nod your head in recognition (such as the symptoms we just mentioned), and some may take you by surprise (such as discovering the link between celiac disease and conditions as varied as skin rash and infertility).
As we mentioned earlier in this chapter, if left untreated or insufficiently treated, celiac disease can not only make you feel unwell, but it can lead to serious damage to your body (including causing complications like osteoporosis, anemia, and more).
In Chapter 7, we take a detailed look at these potential complications and how to avoid them. In Chapter 8, we look at the many ailments that are not directly caused by celiac disease, but are associated with it. We describe the kinds of symptoms these ailments cause and the symptoms to which you should pay the most heed.
For many people, the most feared complication of celiac disease is cancer. Thankfully, celiac disease seldom leads to this, but it can. In Chapter 9, we make you aware of the types of cancer that are linked to celiac disease and, most important, early warning signs on which you should keep a close watch.
Treating Celiac Disease
Celiac disease can make you feel unwell. It can be a hassle to live with. It can cause complications, including damage to your body. Oh joy. So now the good news: You have ultimate power over this condition. Even better, this power is derived not from taking a truckload of pills — or, indeed, any pills at all; no, this power is derived from you modifying your diet to eliminate any and all gluten.
Modifying your diet to eliminate gluten intake, however, isn’t simple and requires lots of work and, like they say about the price of freedom, eternal vigilance. In Chapter 10, we look in detail at what constitutes a gluten-free diet and provide all sorts of tips to help you make the necessary changes to the way you eat and how you eat. And, speaking of vigilance, we also look at hidden sources of gluten for which you should be on the lookout.
When it comes to celiac disease, gluten is the most important nutrient that affects the health of your GI system, but it’s not the only one. As you see in Chapter 11, celiac disease can lead to low iron levels and difficulty digesting certain milk products (a condition called lactose intolerance).
Infrequently, but sometimes, despite carefully following a gluten-free diet, a person continues to feel unwell. Could it be that gluten is sneaking its way into your diet? Or could it be, perhaps, that you either don’t have celiac disease (doctors do make mistakes, including mistaken diagnoses) or that you have an additional ailment that’s causing your symptoms. In Chapter 12 we explore these possibilities.
Chapter 13 looks at alternative and complementary therapies that some people with celiac disease sometimes consider employing.
Living and Thriving with Celiac Disease
Although people living with celiac disease share many similar challenges, differences exist for some people based on age, living condition (home or in a college dorm for instance), and special circumstances such as attempting to conceive, or being pregnant. Chapters 14 and 15 cover living — and thriving — with celiac disease in these situations.
Perhaps it’s been some time since you were diagnosed with celiac disease and you are nicely on track with your gluten-free existence. What then? Do you need to be monitored for celiac disease-related health issues? If so, how should the monitoring be done? Chapter 15 describes the ongoing care of celiac disease and ways that you can continue to empower yourself.
Better ways of managing celiac disease may emerge in the future. Indeed, there may come a time when you may not need to follow a gluten-free diet. In Chapter 16, we explore these and other possible options for dealing with celiac disease that may come about someday.
Handling the News
From the time you were first told you (or your loved one) had celiac disease until the time you picked up and started reading this book, you probably have experienced many different feelings and conflicting emotions.
If you were feeling poorly — especially if this had been going on for a long time — with typical symptoms of celiac disease (we discuss these in Chapter 6), you likely felt relief that the cause of your troubles was identified and that treatment would make you feel better. At the same time, you may have been understandably upset that you had been saddled with a diagnosis for which there is no cure. All these feelings are perfectly normal.
In this section, we look at a few of the different types of feelings that people experience after being diagnosed with celiac disease.
Experiencing denial
Your first reaction upon being told that you had celiac disease may have been surprise; indeed, you may have been stunned. And it could be that, as the impact of being told you had this life-changing disease sunk in, you doubted it could be the case.
“Me? Celiac disease? No way,” you may have said to yourself or others.
You may have then looked up information on the Internet and found that your symptoms didn’t match all of those listed on some Web sites; this may have provided additional justification to your feelings of denial.
But you still weren’t feeling as well as you should or your lab tests showed you were deficient in certain nutrients, or your bone density was low (as seen with osteoporosis), or you had some other feature of celiac disease which, try as you might, wasn’t going to disappear. Eventually, you likely came — perhaps grudgingly — to accept that you had the condition. Or perhaps as you read this book, you have only recently been diagnosed and you still can’t believe it. Either way, these feelings are perfectly natural.
Being angry
If you felt angry after you were told you had celiac disease, rest assured, this is normal and perfectly understandable. You’ve got enough going on in your life without being told there is another issue you have to contend with.
“Celiac disease? Me? It can’t be.”
A long, long time ago, when Ian was a naïve young thing in second year medical school, he was asked by the attending physician in the teaching hospital clinic to inform a 45 year-old patient that his test results had come back showing that he had celiac disease. Ian recalls sitting down beside the man and telling him the news and then explaining in great detail — and over considerable time — the rationale leading to the diagnosis, how the patient’s symptoms fit, how the blood tests were abnormal, and how a small intestine biopsy showed irrefutable evidence.
Finishing his lengthy monologue, Ian prepared to answer the patient’s first question which surely was going to be “Okay, so how do we treat this?” or, perhaps, “What caused this?” or some such thing. Instead, the man looked Ian square in the eyes and said, “I don’t believe it.” And added, “I don’t mean to sound rude, but your tests must be wrong; there’s been some mistake. There’s no way I have celiac disease.”
With that, the man stood up, thanked Ian for his time, and left. Ian recalls feeling stunned that, despite incontrovertible evidence to the contrary, the patient was convinced that he didn’t have celiac disease. As it turned out, the gentleman returned to the clinic a few months later after having continued to feel unwell and having come — with reluctance — to accept the diagnosis and begin treatment. (And Ian came to learn that denial is a normal part of the process of coming to terms with unwelcome news.)
Having celiac disease isn’t like having a strep throat or bladder infection that will quickly go away after a few days of antibiotics; if you have celiac disease today, you will have it tomorrow and next week and next month and next year, too. And who wants that? Nobody.
It’s also perfectly understandable to be angered by the “work” of having celiac disease. All of a sudden, you need to spend far greater effort when shopping and cooking, not to mention the additional expense of buying food that is gluten-free. Also, in addition to the usual considerations regarding fat content, calories, sodium, and so forth, you now also need to scrutinize everything you eat to ensure that it doesn’t have gluten.
The diagnosis of celiac disease may not be what led to anger. You may be angry that the diagnosis wasn’t made earlier. Many people go months or even years, feeling unwell all the time, before their celiac disease is discovered. During this time, other, incorrect diagnoses may have been made or people may have been told that their problem was “all in your head” or “due to nerves.” No wonder a person in this situation feels frustrated or angry.
Another source of anger arises when a person with a delayed diagnosis reflects on the lost opportunity to have prevented complications from celiac disease (such as, for example, osteoporosis).
By the way, we are not casting stones here. Celiac disease is an ailment that can both mimic and masquerade as many other diseases and a delayed or missed diagnosis is not uncommon; indeed, many an excellent physician has overlooked this diagnosis.
Regardless of the source of your anger, the thing is, feeling angry isn’t useful treatment. Eventually, anger has to be left behind so that you can get on with your life and get back to and maintain a state of good health.
Feeling sad
Feeling sad upon hearing bad news is perfectly understandable and normal. You may find, however, that if you’ve been feeling unwell (especially if it’s been for quite some time), your sadness will be mixed with relief now that treatment will get you feeling better in short order. You should realize, however, that even after your celiac disease symptoms are controlled, you may at times feel sad that you have celiac disease. With time, that too will pass.
Taking the next step
Upon finding out that you have celiac disease, you experienced times when you felt angry or sad, and perhaps you even denied that you had celiac disease. None of these feelings have gotten your symptoms to go away or your blood tests to normalize, and now you’re ready to take the bull by the horns (speaking of which, if you choose, you can take more than the bull’s horns because unprocessed meat doesn’t contain gluten!) and deal with your diagnosis. Wonderful. As you learn the ins and outs of living a gluten-free existence, don’t get mad at yourself if, from time to time, some of your old angst shows up. That is normal and will pass.
When you’re feeling down or frustrated or simply upset at having celiac disease, you may find the following coping strategies helpful:
Be a positive thinker. Focus on how much better you will feel once you’re following a gluten-free diet or, if you’re already on treatment, how much better you already feel. Unlike so many other diseases, you have the power to control things without requiring medication.
Know that you’re not alone. Recognize that there are health care professionals — most importantly, dietitians — who are there to help you learn what you need to know. You’re not on your own!
Involve your family. As you learn about living gluten-free, you can share your newfound knowledge about nutrition with your partner and your children. You will find that you are — or will shortly become — a true nutrition resource! Also, involving your family allows them to provide you with the support and encouragement you may need and want from time to time.
Seek out a celiac disease support group. Find a support group, either one that meets in your community or an online one. We discuss online support groups in the next section.
Finding Information and Support on the Internet
We certainly hope that you will find this book a helpful tool to assist you in your quest to find out more about your celiac disease, but we also recognize that a vast amount of additional information is available in Cyberspace. (How vast? Last time we checked, using our favorite search engine on the term celiac disease, we got 4.6 million hits. Wow!)
Some of the information you find online is good, and some is, to put it charitably, not quite as good (or downright awful to be quite frank). In this section, we look at how you can use the Web to find more information about celiac disease and how you can seek out Internet support groups to lend you a cyber-hand when you need it.
Knowing whether an Internet site is reputable
Okay, sure, sometimes it’s obvious when an Internet site is not to be trusted, like if you were to come across a site called www.wesellusedcarsandwealsocureceliacdisease.com. But most of the time, it’s not nearly so easy to tell whether you’ve reached a cutting edge, state-of-the-art site, or one that is far less reputable.
A Web site that is credible and provides reliable information and advice (recognizing that, of course, none of these criteria guarantees the site will be sound) generally does the following:
Reports facts objectively. The site provides information in an even-handed way and avoids sensationalism.
Relies on science. The site doesn’t rely on testimonials to the exclusion of science. An unusual or unique treatment that appeared to help a person with celiac disease isn’t proof that it worked; perhaps the person got better for an unrelated reason.
Uses ads responsibly. The site doesn’t have advertising or, if it does, the ads, like the site, are not over-the-top declarations encouraging you to buy “instant cure” miracle-type products.
Aims primarily to inform, not to sell. If the site is run by a scientific organization, hospital, health care clinic, or recognized expert on celiac disease, the site is likely very reputable. If the site is owned and run by a company that is marketing a product, question whether the information on the site is appropriately dispassionate and even-handed. Such company-owned sites may be perfectly reasonable and good sources of information; it’s just necessary to question it, that’s all.
One clue that a site is run by a scientific or academic — rather than a commercial — institution is the appearance of “.org” or “.edu” rather than “.com” in its Web address. You can find many exceptions to this general rule, but it represents a good starting point.
Identifies its author. The author or authors of the site are identified and, ideally, the site provides background information regarding important details such as their professional qualifications and academic affiliations (if any).
Use a search engine, such as Google or Yahoo, to search the Internet for the names of a Web site’s authors. You may discover an author has written hundreds of scientific articles, which is good, or you may discover that they’ve just lost their medical license because of incompetence — which, ahem, is bad.
Uses verifiable facts. Information on the site is referenced or at least supported by verifiable facts rather than just being “stream of consciousness” opinion. Also, if the site quotes scientific studies, check to see whether they were published in obscure-sounding journals; they may be obscure for good reason. (Although, of course, some excellent scientific journals have unusual names.)
Does not engage in conspiracy thinking. If the site talks about conspiracies amongst the medical community or “big business” or government or some other organization said to be participant in some Machiavellian scheme to “hide the cure” to celiac disease, then not only should you take a pass on the site, we would recommend you use your imagination to conjure up a cyber-toilet and flush away this offensive and disreputable site.
In Appendix A, we list some helpful and reputable Web sites where you can find useful information on celiac disease.
Finding a celiac disease support group on the Web
An Internet-based support group (which, depending on the specific nature of the group, may also be referred to as a discussion group,discussion forum, or chat group) is a place where people affected by a condition, either directly because they have it or indirectly because a loved one has it, can exchange thoughts, ideas, facts, and suggestions.
Although forums may require you to join (done by filling out an electronic form on their site) before you can post comments, most groups allow you to see any already posted material without having to sign up.
Support groups are designed to provide support. That is, however, just the tip of the iceberg. Indeed, support groups provide myriad other functions above and beyond this. They can also have their downsides, however. In the sections that follow, we look at these issues.
Understanding how a online support group can help you
An Internet-based support group can help you by providing the following:
Other people’s stories. If you don’t know other people with celiac disease and as a result are feeling isolated, reading other peoples’ stories about how they have been affected by celiac disease can help you realize that you’re not the only person out there battling the condition.
Patient-provided tips. You can find many tips that others with celiac disease have posted regarding helpful shopping, cooking, and other “living with celiac disease” topics. For example, a person may have discovered a great place to buy gluten-free foods (either online or at a bricks-and-mortar store) and may be keen to share this information.
Opportunities to share your story. You may find it cathartic or stress-relieving to share with others your own trials and tribulations with celiac disease.
Encouragement. Support groups are designed to provide support! Having a bad day? Feeling fed-up with living gluten-free? Let the group know and you’ll likely find members quickly commiserate and encourage you to keep up your efforts.
Opportunities to help others. You can gain satisfaction by helping others if you share your own how-to tips with the cyber-community.
Success stories. If celiac disease is new to you, you may find it reassuring to read postings from people who have successfully lived with celiac disease for many years.
Substitute for a “real” support group. If you don’t have a local, “real” (as opposed to online) support group, or if you do but are unable to attend (out of shyness or scheduling conflicts or lack of time or whatever), online forums allow you to still participate in group discussion and to do so at times that are convenient for you.
Worldwide support.
