In this section
A starter guide for people diagnosed with celiac disease
We know how you feel.
You or your family member has been diagnosed with celiac disease. You may be scared. You may feel all alone, wondering where you can turn for help. That's the purpose of this guide. To tell you that you're not alone, there are many resources available to help you deal with the emotions you're probably experiencing. Here, you also will find answers to questions you have about adopting the gluten-free diet.
This guide was developed by people who know the questions you have: three mothers of celiac children determined to spare other parents the difficulties they experienced; a registered dietician specializing in celiac disease and other food intolerances; the executive director and administrative assistant of the first nonprofit charitable corporation in the nation explicitly supporting the efforts in research and education of celiac disease; the program director for one of the nation's premier celiac centers; and two support group leaders, one of whom has been providing support to celiacs for more than 20 years. This guide has been reviewed and approved by several of the nation's leading medical authorities on celiac disease.
This is intended to serve only as a starter guide to help you through the initial days of your new gluten-free lifestyle. The information is current as of the time of this posting, but you should be diligent about staying abreast of the latest information, since product ingredients do change from time to time. The last section of this guide lists support groups and several resources that will be of great value to you and your family. We encourage you to seek out support groups in your area and study the information on Web sites and in the books we reference at the end of this guide. Education is vital, and knowing more about this condition will help you become more comfortable with the diagnosis and its accompanying lifestyle.
About celiac disease
The diagnosis of celiac disease may seem difficult at first, and to be truthful, it is. But while you may not feel lucky to have celiac disease, you should feel lucky to know you have it. Chances are, you have been sick for quite some time – in the United States, the average length of time between onset of symptoms and diagnosis of celiac disease is 10 years for adults, and two for children. If it took you less time than that to be diagnosed, you are among the fortunate. Many celiacs remain undiagnosed; one of the goals is to better educate medical professionals about celiac disease.
Celiac disease (also known as celiac sprue, gluten-sensitive enteropathy, or nontropical sprue) is a common genetic condition that presents itself as an inability to tolerate gluten. Gluten is a protein found in wheat, rye and barley, and can be hidden in additives and other ingredients. For most people, eating gluten is just like eating any other type of food. But when celiacs eat gluten, an autoimmune response occurs. Simply put, this means that the body views gluten as an "invader," and launches an attack against it. In the process of attacking the gluten, it destroys part of the body itself.
Specifically, the damage occurs in "villi" of the small intestine. Villi are small, hair-like projections that increase the surface area of the small intestine, providing more opportunity for nutrients to be digested and absorbed into the bloodstream. When the villi are damaged, they are less able to absorb nutrients from the food that is eaten.
Years ago it was thought that only people with classic gastrointestinal symptoms such as weight loss and IBS-like symptoms were candidates for a diagnosis of celiac disease. Today, we know that the symptoms of celiac disease can be mild or severe, and can be diverse, often with no gastrointestinal distress at all. Some of the more common symptoms include iron deficiency anemia, joint or muscle pain, infertility, dermatitis herpetiformis or osteoporosis.
Celiac disease doesn't go away, and research now shows that no one outgrows it. Many people don't feel the effects of gluten and, therefore, believe gluten isn't doing damage to their bodies. The truth is, even small amounts of gluten can do damage to your intestinal tract and can put you at significantly higher risk for associated conditions such as osteoporosis, whether you feel the symptoms or not.
The treatment for celiac disease is a strict, gluten-free diet for life. Consulting a registered dietician who is knowledgeable in celiac disease should be a priority. Your intestinal tract will begin repairing itself after beginning a gluten-free diet, and you likely will feel improvement within weeks. However, some people take longer than others to respond to the diet. If after a few weeks you are not feeling better, don't give up on the diet, but consult your physician.
How common is celiac disease?
Chances are, you've never heard of celiac disease; your doctor may have even told you that it is a rare condition. Actually, celiac disease is extremely common. Recent prevalence figures indicate that as many as 1 in 133 people – many with no symptoms whatsoever – have celiac disease. For those with classic symptoms, the figure jumps to 1 in 40. The problem is that many people who have celiac disease are misdiagnosed or not diagnosed at all. Celiac disease affects the same number of Americans as cystic fibrosis, Parkinson's Disease, autism and multiple sclerosis, combined.
About gluten and foods
For the purposes of this guide and most of the information you will encounter, gluten will be defined as a protein found in wheat, rye and barley.
The tricky part of the diet arises when ingredients are derived from gluten-containing grains. For instance, malt is usually derived from barley, and is therefore off-limits on a gluten-free diet. The following lists include safe and forbidden foods on the gluten-free diet.
Forbidden foods include, but aren't limited to:
- Beer (even used in cooking)*
- Seasoning and gravy mixes*
- Cheeses (blue, parmesan, roquefort)*
- Soy sauce*
- Communion wafers*
- Sprouted wheat or barley
- Teriyaki sauce*
- Flour (usually from wheat)*
- Worcestershire sauce*
- Modified food starch*
*Unless wheat-free and gluten-free.
Safe foods include, but aren't limited to:
- Maltodextrin (Made in the U.S.)
- Baking soda
- Masa (corn)
- Meat (plain)
- Buckwheat (beware of buckwheat being combined with wheat flour)
- MSG (from U.S.)
- Canola oil
- Nut flour
- Carob flour
- Cellulose gum
- Cheeses (see Forbidden Foods)
- Chickpeas (garbanzo beans)
- Cream of tartar
- Flax (can increase number of bowel movements)
- Fruit (plain)
- Guar gum
- Vegetables (plain)
- Kasha (roasted buckwheat-may be combined with wheat in the U.S.)
- Vegetable oil (including hydrogenated)
- Locust bean gum
- Vinegar (cider, wine, distilled, balsamic)
*See section "Are Oats Safe for Celiacs?"
Are oats safe for celiacs?
Oats in and of themselves are not toxic to celiacs. Given the fact that oats do not contain gluten, any perceived sensitivity could be caused by many other factors. However, there is some controversy about whether or not contamination could be a problem, since oats are sometimes grown and transported with wheat and other gluten-containing grains. This is an example of a topic you should research thoroughly and discuss with your physician, so you can feel comfortable with your decision to eat or avoid oats.
Is gluten hiding in your food?
There are some ingredients that might contain gluten – or they might not. Those ingredients include but aren't limited to:
- Modified food starch.
- Hydrolyzed vegetable protein.
- Hydrolyzed plant protein.
When you encounter these ingredients, it's important to call the manufacturer and ask if the ingredient is derived from a gluten-containing source. Thanks to the efforts of devoted gluten-free activists, labeling has improved substantially in the last several years, and there are fewer "hidden" sources of gluten.
Another source of hidden gluten can be from contamination. This occurs when a normally gluten-free product comes in contact with a gluten-containing substance. Examples are:
- A toaster that has been used to toast gluten-containing products.
- A deep-fat fryer that has been used for breaded products such as chicken nuggets, fried fish, etc.
- A conveyor belt that has been used for gluten-containing products.
Conflicting information: how to sort through the contradictions.
As you begin to learn more about the gluten-free diet, you'll most likely notice that there's a lot of conflicting information. Even among the national support groups, there can be differences of opinion about ingredients that are allowed on the diet. While you may find it frustrating to have to sort through contradictions, realize that there will always be differences of opinions. It may seem as though it should be straightforward – either an ingredient has gluten or it doesn't – but it's not that simple. Sometimes the way an ingredient is processed or where it comes from influences its ultimate gluten content. Different people may have different opinions about whether or not these foods are safe for celiacs. If you have questions, check with your physician or dietician.
When you think of a dietary restriction, it's obvious to examine the foods you eat. But it's important to consider whether or not a product is gluten-free, even if it's not typically thought of as food. If you can ingest it, you need to check into it. This applies to lipstick, medication, vitamins and supplements, toothpaste, mouthwash, and even Play-DohTM and other products that curious kids may be tempted to nibble on.
Getting started on the gluten-free diet – the practical information you need.
Even if you feel overwhelmed, frustrated, deprived or confused about the diet, it's important to jump in with both feet, trying to achieve and maintain a 100 percent gluten-free diet, right from the beginning. It's OK to make mistakes. You and others will make them, especially in the first six months. But forget the notion of "easing into" the gluten-free lifestyle. It's best to strive for a strict, gluten-free diet right off the bat.
Frequently asked questions
Has your child been diagnosed with celiac disease?
Families with a child who has recently been diagnosed with celiac disease may have a lot of questions. Here is some information that may help.
Q: How do I know for sure if a product is gluten-free?
A: There are at least three ways to determine if a product is gluten-free; sometimes you'll want to do all three, just to make sure.
Read labels. Reading labels is a way of life for celiacs. Label reading should be covered when you meet with a dietician. Learn to read them carefully, and try to memorize safe and forbidden ingredients. The first several times you shop, you should bring a print-out of the safe and forbidden ingredients and additives lists to the store with you. It's important to read product labels because companies will often substitute ingredients when making a product, changing its gluten-free status. Just because a product is gluten-free today doesn't mean it will be the next time you buy it.Call manufacturers. Get used to looking for the toll-free number on packages of products, and calling the manufacturer to ask if the product contains wheat, barley or rye. Today, most customer service representatives understand the question and have reliable information about the gluten-free status of their products. If the person you talk to doesn't appear to understand the question, be sure to ask to speak with a supervisor or quality control specialist, until you are satisfied with the information you've been given. If you feel that the person doesn't understand your question, you might want to ask for additional information.
Take your cell phone with you while you shop. If you're shopping during business hours and find a product with questionable ingredients, you can call the toll-free number on the package and make sure it's gluten-free while you're still in the store.
Check a gluten-free shopping guide or the Internet. There are several shopping guides that you can buy (check your local support group or the Internet to find them), as well as free listings of gluten-free products on the Internet (see the Resource section at the end of this guide). Also, many stores and restaurants list their gluten-free products and menu items on the Internet, or will mail them to you if you call. Remember, ingredients change, and product guides and listings can become outdated, so you still need to periodically call manufacturers.Q: What if something appears to be gluten-free, yet I get a reaction to it?
A: People have sensitivities to many different things. Celiacs tend to assume that when they feel badly, it must be because they've ingested gluten, yet that's not always the case. People with celiac disease also can have allergies or difficulty with absorption of some sugars. Symptoms related to food should be discussed with your physician. It is important to thoroughly check out the foods you're eating. Have the ingredients changed? Are there suspect ingredients that could contain "hidden" gluten? Or do you react to the food for an entirely different reason? The bottom line is that if a food doesn't sit well with you, talk to your doctor.Q: If I don't have a reaction to a food, can I assume it's gluten-free?
A: No. Celiacs have a variety of responses to gluten, ranging from no symptoms whatsoever to severe distress. Gluten is harmful to celiacs, whether there are symptoms present or not. Sometimes someone will accidentally or intentionally ingest gluten and have no reaction, and may assume they have "outgrown" the condition. No one outgrows celiac disease. Symptoms may not be present or overt, but gluten is always toxic to celiacs.Q: Will gluten-free foods always be marked "gluten-free?"
A: Usually not. In fact, most labels do not list gluten as "gluten." Instead, the label will say "wheat," "flour," "barley," "malt" or another ingredient that may have gluten in it, such as "flavorings." It's important not to make assumptions when you're reading labels. For instance, "flourless" means there's no wheat flour, but there could be sprouted wheat or other gluten-containing grains. And it's important to remember that while gluten-free may mean a product is wheat-free, wheat-free doesn't mean gluten-free. It's true that labeling is improving, but there still are no labeling laws specifically regulating gluten-free products in the United States, so all labels should be examined closely.
The Food Allergen Labeling and Consumer Protection Act (FALCPA) was signed into law by President Bush Aug. 2, 2004 (Public law 108-282). FALCPA applies to food products that are labeled on or after Jan. 1, 2006
The new law requires:
- Food statements to list in plain language what, if any, of the eight main food allergens (milk, egg, peanuts, tree nuts, fish, crustacean shellfish, soy and wheat) are contained in the product.
- Allergens to be listed if used in spices, natural or artificial flavoring, additives and colorings.
- The FDA to examine how best to address the problem of unintentional contamination and cross-contact of foods, and determine the best way to inform consumers with food allergies about the risk of cross-contact.
- The FDA to issue a proposed rule that will define and permit the voluntary use of the term "gluten-free" on the labeling of foods by August 2006 and a final rule no later than August 2008.
Source: The Gluten Intolerance Group of North America.
A quick lesson in reading labels
Since a previous ingredient is already identified as a source of wheat – this would not have to be. If modified food starch is not identified as wheat in a product that contains no other wheat, assume that it is from corn, potato, etc.
|INGREDIENTS: Enriched flour (wheat flour, niacin, reduced iron, thiamin mononitrate, riboflavin, folic acid), modified food starch, corn gluten, vegetable oil (corn, soybean and/or cottonseed), malt, artificial flavors, natural flavors, corn syrup, cocoa butter, lecithin, salt.||
Wheat is noted since it is one of the eight main food allergens.
May be derived from barley.
Q: How can I find out which gluten-free products are better than others?
A: Obviously, it is a matter of personal preference, and you will develop a list of your favorite products. But if you're interested in others' opinions, contact your local support group and ask the members which products they enjoy. Sometimes support group meetings offer samples of products so people can try them. Members may also be able to direct you to stores in your area that carry gluten-free products.
The gluten-free diet is difficult – at first
It's easy to get caught up in the difficulties of this diet. Realize that it's OK to be angry, scared, frustrated and confused. Deal with those emotions in whatever way you find most therapeutic – confide in close friends, seek counseling or find other emotional outlets. When first diagnosed, many people with celiac disease never imagine that the intricacies of the diet will come easily; but before they know it, studying labels and ingredients becomes second nature.
A: Admittedly, this can be difficult at first. Eating away from home requires planning and patience. It's important to remember that your diet is your responsibility; don't be offended if others don't understand or meet your special needs. There are several tips for eating away from home in the books and resources listed at the end of this guide, and with time you'll learn which restaurants and friends are especially accommodating. There are a few basic tips that will make eating out easier.
- Check the Internet for lists of gluten-free menu items. Many restaurants, especially the larger chains, have their gluten-free menu items posted on their Web sites. Some will even mail you a gluten-free menu.
- B.Y.O.F. – Bring Your Own Food.Whether it's a small snack or an entire meal, you can't go wrong if you bring your own food.
- Call ahead. Whether you're going to a friend's house or a restaurant, it's a good idea to call ahead and talk to the chef. Even restaurant chefs are glad to tell you what ingredients they use, and usually will arrange for your gluten-free meal to be ready for you when you arrive. Many will allow you to bring your own foods and will prepare them for you, especially if you call ahead. If you're going to a friend's house, offer to bring the dessert or another part of the meal that you can make gluten-free. Remember that contamination-free preparation and presentation are important considerations, too.
- Fill up before you go. It's always a good idea to fill up before you leave the house. That way, if there is little or nothing you can eat, you won't starve.
- Be assertive, but tactful. It can be embarrassing to ask a friend what they're preparing, talk to the chef at a restaurant, or ask to see a product so you can check ingredients. But it's crucial that you be assertive so that you avoid what could be painful and harmful mistakes.
Q: But it's my birthday – isn't just a little bit of cake OK?
A: No. Even if you are like some people who do not feel the symptoms from eating gluten, you can't sample, even a little. Instead, treat yourself to a candy bar, ice cream, gluten-free cake, or one of the other many delicious gluten-free delights that are available today.
There's no need to feel deprived on the gluten-free diet. Many commercial products, including candies and candy bars, chips, ice cream, and pudding (many of which are available at any grocery store) are gluten-free (call the manufacturer and read labels to be sure). But even pretzels, crackers, cookies, brownies and cakes aren't necessarily off limits, thanks to some excellent sources of gluten-free products now available online, by phone and at specialty stores.
A: This is worthy of several chapters in a book (see the Resource section at the end of this guide). A few basic tips will help.
Empower your child. As parents, our goal is to raise well-adjusted children who will be able to live healthy, gluten-free lives – and you won't always be there. Involve your child in his or her condition, no matter how young he or she is; read labels with him or her, encourage him or her to make food choices (help, but don't do it for your child), and allow your child to help with food preparation and menu selection. Teach your child to gracefully decline well-meaning friends and family who offer forbidden treats.Educate the teachers. Provide your child's teachers with as much information as they will accept about the condition and the diet. Copy the lists of safe and forbidden ingredients or gluten-free product listings from the Internet or books, and have your teachers keep them on file. If they will read the books or information contained in some of the other resources listed at the end of this guide, offer to buy or lend them a copy. Make sure they understand your child's symptoms, so that if he or she accidentally ingests gluten, the teacher will be aware of the consequences.
Q: What is dermatitis herpetiformis?
A: Dermatitis herpetiformis (DH) is sometimes referred to as a "sister" to celiac disease. It presents as a severe, itchy skin rash. Everyone with DH has intestinal damage, but generally without the gastrointestinal symptoms. Only about 5 percent of celiacs have these external symptoms of DH.
Treatment for DH is the same as for celiac disease: a strict, gluten-free diet for life. Sometimes, though, people with DH also must avoid iodine. Drugs such as Dapsone can be used to control the itch for the first few months until the gluten-free diet kicks in. However, Dapsone does not heal intestinal damage, has significant side effects and needs to be monitored with frequent blood tests. Dapsone helps the DH subside and the gluten-free diet keeps the skin rash under control.Q: How do I know if I accidentally eat gluten, and what should I do if I do?
A: Most celiacs who eat gluten experience a reaction, whether it's gastrointestinal in nature, headache, irritability, joint or muscle pain, or another symptom. Usually the response occurs within four to six hours after ingesting gluten; it's important to think back on the foods you've eaten to determine what you ate that may have contained gluten, so that you can avoid that product in the future.
If you do ingest gluten, the most important thing to remember is that you'll be OK. Don't panic. Mistakes will be made, and you'll survive them. There is no need to call 911 and no need to call or see a doctor. Be sure to make note of what you ate so you can avoid it in the future. Most importantly, don't let a mistake derail you from sticking to a 100 percent gluten-free diet. If you make a mistake, learn from it and get back on track.
Talking to friends and family about celiac disease
Everyone you talk to about this condition is likely to have a completely different reaction. Some will understand and put forth a lot of effort to learn about the diet; others will have a hard time accepting the diagnosis and may not be receptive to information about the condition. If you have trouble explaining it to others, use the resources listed in the back of this guide to help you. Loan books to people, refer them to websites, and encourage them to learn more about the condition. The better they understand it, the more support they will provide.
A: For specific dietary concerns, you should always consult a dietician or your physician. But the gluten-free diet can be a very healthy diet, and one that does not have any harmful effects.
Who else should be tested?
In first-degree relatives, the incidence of celiac disease is 1 in 22. For second-degree relatives, the incidence is 1 in 39. And remember, many of these people either have no symptoms whatsoever, or have symptoms that are not considered "classic" for celiacs. If you or your child has been diagnosed with celiac disease, all first- and second-degree relatives should have the blood screen for celiac-related antibodies every two or three years. Encourage your family members to get tested – you may dramatically improve their lives.
Another diagnosis! Celiac disease and other conditions
It is common for someone with celiac disease to be diagnosed with or to have additional conditions, such as diabetes, Down syndrome, lupus, arthritis, or thyroid disease. Often, these other conditions were diagnosed before celiac disease, so the diagnosis of celiac disease can be especially painful, begging the questions, "what now?" or "why me?" (or your child).
While it may seem at first as though this is insult upon injury, the truth of the matter is that once you begin the gluten-free lifestyle, you likely will find that symptoms arising from other conditions may improve and the quality of your life be enhanced. Certainly you will have more energy, and your body, finally able to absorb important nutrients, will be stronger and better equipped to withstand stress and trauma.
Being diagnosed with a condition that many people have never heard of can result in feelings of isolation and desperation. There are support groups throughout the country that can provide valuable information, contacts and support. We encourage you to contact any of the groups below and learn about support groups in your area and other available services.
Celiac Disease Foundation
13251 Ventura Boulevard, #1
Studio City, CA 91604
Celiac Sprue Association/U.S.A.
P.O. Box 31700
Omaha, NB 68131-0700
Gluten Intolerance Group
31214 124th Avenue SE
Auburn, WA 98092
R.O.C.K. (Raising Our Celiac Kids)
3527 Fortuna Ranch Road
Encinitas, CA 92024
National Institute of Health
Includes articles on celiac disease, treatment and the gluten-free diet.
BooksCase, Shelley, Glabus, Iona and Danchuk, Brian:
- Gluten-Free Diet: A Comprehensive Resource Guide - Expanded and Revised Edition. Case Nutrition Consulting, Inc.
- The Gluten-Free Gourmet: Living Well Without Wheat. Henry Holt & Co.
- More from the Gluten-Free Gourmet: Delicious Dining Without Wheat. Henry Holt & Co.
- The Gluten-Free Gourmet Cooks Fast and Healthy: Wheat-Free Recipes with Less Fuss and Less Fat. Henry Holt & Co.
- The Gluten-Free Gourmet Bakes Bread: More than 200 Wheat-Free Recipes. Henry Holt & Co.
- The Gluten-Free Gourmet Makes Desserts. Henry Holt & Co.
- Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten-Free Children. Woodbine House.
- Wheat-Free, Worry-Free: The Art of Happy, Healthy, Gluten-Free Living. Hay House.
- Gluten-Free Kitchen: Over 135 Delicious Recipes for People With Gluten Intolerance or Wheat Allergy. Prima Publishing.
Please note: New books come out frequently and this list is far from exhaustive. Keep an eye out for other titles by these authors.
Commercial product guides for food and drugs:
A good product guide should have contact information on manufacturers so you can call frequently. Update your product guide with new information, and remember to date the information as you add it, so you'll always know whether it's current. Brands vary from region to region. If a brand is not listed, it may be because it contains gluten, or it may just mean that the manufacturer was not contacted and, therefore, excluded in the publication.
Celiac Sprue Association/U.S.A.
The CSA Gluten-Free Product Listing
P.O. Box 31700
Omaha, NB 68131-0700
Phone: (877) 272.4272
Hawthorne, NY 10532
Sully's Living Without
1730 N. Clark St., Suite 415
Chicago, IL 60614
Going gluten-free guide sponsors
Friends of Celiac Disease Research Inc. is a nonprofit charitable corporation devoted to assisting people with celiac disease and dermatitis herpetiformis (CD/DH), primarily by supporting the efforts in research and education.
Ellen Mechanic-Schlossmann, founder and president
National spokesperson for celiac disease awareness
Author, Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten-Free Children
Author, Wheat-Free, Worry-Free: The Art of Happy, Healthy, Gluten-Free Living
Founder, R.O.C.K. (Raising Our Celiac Kids), a free national support group for families with gluten-free children.
Bev Lieven, coordinator of the Milwaukee Celiac Sprue Crew
8069 N. Sherman Blvd
Brown Deer, Wis. 53209
Judy Mayer, DTR (Diet Tech Registered)
Specialist in food allergies and intolerances, celiac disease
Nutrition Consultant, The Outpost Natural Foods
100 East Capitol Drive
Milwaukee, Wisconsin 53212
Phone: (414) 961-2597
University of Chicago Celiac Disease Program
The University of Chicago Celiac Disease Program (UCCDP) is one of the nation's premier celiac centers dedicated to research, education, patient services and consumer issues.
Michelle Melin-Rogovin, former program director
The contents of this guide have been approved for medical accuracy by the following medical advisors:
Alessio Fasano, MD
University of Maryland Center for Celiac Research
Peter H.R. Green, MD
Celiac Disease Center at Columbia
Stefano Guandalini, MD
University of Chicago Celiac Disease Program
Joseph Levy, MD
Children's Digestive Health Center
Susan Mikolaitis, RD, LD, CNSD
Rush Presbyterian St. Luke's Medical Center
Joseph Murray, MD
Michelle Pietzak, MD
Childrens Hospital Los Angeles