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Celiac Disease

You’ve heard of Crohn’s disease, cystic fibrosis, multiple sclerosis, and Parkinson’s disease. How much have you heard of celiac disease? Celiac disease affects more people than all of these disorders combined – about 1% of the population. It is one of the most common genetic conditions in the world. Ninety-seven percent of Americans with celiac disease go undiagnosed.

What are the symptoms?

When people with celiac disease eat a protein called gluten - found in wheat, rye and barley -  their immune system responds by damaging the small intestine, where nutrients are absorbed. The resulting malnutrition affects multiple systems in the body, and can lead to one or more of a wide variety of seemingly unrelated symptoms and conditions: gastrointestinal distress, anemia, infertility, intestinal cancers, osteoporosis, short stature, growth failure in children, bone and joint pain, depression, an itchy skin rash, and dental defects. For a checklist of symptoms, go to the Celiac Disease Foundation or the National Foundation for Celiac Awareness.

Atypical and Silent Celiac

Only a small portion of celiacs have the classic gastrointestinal symptoms of celiac disease. Many others have atypical (non-gastrointestinal) symptoms. Recent research found that the majority of celiacs are not aware of any symptoms at all – they have “silent celiac.” If left untreated, even atypical or silent celiac disease can lead to the serious medical complications described above. Since celiac disease is genetic, celiac experts recommend that the first-degree relatives (parents, siblings, children) of a diagnosed celiac be tested, whether or not symptoms are present. It is also recommended that symptomatic second-degree relatives be tested (grandparents, grandchildren, aunts and uncles, cousins, niceces and nephews). Silent celiac disease is often found when family members of a diagnosed celiac are tested.

Who Gets Celiac Disease?

Until very recently, celiac disease was mistakenly believed to be a rare childhood disease found in people of European ancestry. Now researchers are finding that celiac is a very common disease that can be found in people of any nationality, race, weight and age, from infants to senior citizens. Celiac disease may be triggered in infancy when gluten is first consumed, or later in life, sometimes following a physical or emotional trauma. Family members of a celiac, and people with Type 1 diabetes, thyroid disease, and other autoimmune diseases have a higher rate of celiac disease.

How is it treated?

The only known treatment for celiac disease is a gluten-free diet for life, which heals the small intestine, and often relieves most or all of the symptoms. Consultation with a dietitian and referral to a patient support group help newly diagnosed celiacs adjust. The popularity and availability of gluten-free products is soaring. Celiac disease treament and research is the subject of a number of studies, some of them in human trial.

How Do You Test for Celiac Disease?

The first step in diagnosing celiac disease is a blood test. There is no one perfect blood test to screen for celiac disease so the blood test is a panel of several different tests. If the result is positive, a biopsy of the small intestine is usually performed to confirm the diagnosis. For detailed testing information, consult the Wm. K. Warren Medical Research Center for Celiac Disease at the University of California at San Diego. Testing for celiac disease must be conducted prior to attempting a gluten-free diet. Persons wishing to be tested are advised to educate themselves and talk to their doctors about the latest information on symptoms and diagnostic methods, which may be found on the web sites of celiac disease centers around the country.

           This information was adapted from materials provided by:

Celiac Disease Foundation

National Institutes of Health Celiac Disease Awareness Campaign

National Foundation for Celiac Awareness

Celiac Disease Center at Columbia University

American Celiac Disease Alliance

For more information, please see Resources

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North Bay Celiacs serves people with celiac disease and others on a gluten-free diet in the Northern California Counties of Sonoma, Napa and Marin. Provides support groups and runs a Celiac Disease Awareness Campaign to educate doctors, hospitals, restaurants, hotels, wineries, grocery stores and tourist and travel destinations.