About 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 dietitian 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.

Text taken from Going Gluten-Free pamphlet with permission.

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.

Congratulations on your diagnosis – you have just been given the key to better health.
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.

What is 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 dietitian 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.