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Celiac Disease -- An Overlooked Disorder
Last reviewed by Faculty of Harvard Medical School on August 28, 2012
By Linda Antinoro, R.D., L.D.N., J.D., C.D.E.
Brigham and Women's Hospital
Celiac disease is a digestive disorder in which the body can't tolerate gluten, a protein found in wheat, rye, barley and sometimes oats. The gluten triggers an immune reaction and causes inflammation at the surface of the small intestine. This can eventually interfere with the absorption of nutrients from food.
Celiac used to be considered a relatively rare condition, but it's estimated to affect almost 1% of the U.S. population (1 in 133 people). People with a family history of celiac are at greater risk of developing the disease.
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Symptoms of Celiac
Celiac disease can be difficult to diagnose because the symptoms are varied and similar to other intestinal conditions. Some people have no apparent symptoms or their symptoms are so subtle that they never mention them to their doctor. As a result, celiac may be misdiagnosed or go undiagnosed for years. Symptoms that may signal celiac disease include:
- Diarrhea and/or constipation
- Abdominal pain
- Unintentional weight loss
- Lactose intolerance
- Delayed growth (in children)
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If you have any of the above symptoms, especially the intestinal ones, ask your doctor about testing for celiac. A positive blood test for antibodies to the protein in gluten means there's a strong likelihood of having the disease. However, the gold standard for diagnosis is an intestinal biopsy. (Your doctor removes a tiny piece of tissue from the small intestine and examines it under a microscope for signs of damage and inflammation.)
It's essential not to limit the gluten in your diet before the antibody blood test or biopsy because it can skew the results and affect the diagnosis.
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Living With Celiac
Treatment for celiac means eliminating gluten from your diet for life. This may sound simple, but it isn't.
Gluten is found in foods such as pasta, bread, wheat cereals and many baked goods. But many other less-obvious items, such as sauces, soups, and salad dressings, contain gluten. Even corn and rice cereals can have gluten-containing ingredient, such as barley malt extract or flavoring.
You have to be a dedicated food-label reader and pay close attention to all ingredients. Fortunately, there is an increasing number of companies that offer gluten-free products to keep the guessing and sleuthing to a minimum.
A minority of individuals with celiac can't tolerate pure oat products either. Until recently, most commercial oat products were contaminated with wheat, barley and/or rye during harvesting, transportation, storage, milling and processing. But there are some companies that provide pure, uncontaminated oat products. So a good general rule for oats and all food products is: if in doubt, leave it out.
It's also very important for a person with celiac to avoid cross-contamination. This happens when a gluten-free product comes into contact with something that is not gluten-free. To avoid cross-contamination:
- Buy separate containers of foods, such as peanut butter, jam, mayonnaise and margarine to avoid any contact with a knife or spoon that has been used on bread.
- Buy squeeze bottles of condiments.
- Use a separate cutting board for gluten-free foods.
- Have a separate toaster or one with a removeable rack that can be washed.
- Wipe counter space frequently to get rid of any stray bread crumbs or flour dust.
- Don't buy products from bulk bins because the scoops could have been used in other bins of gluten-containing products,
- Be careful at buffets where utensils may be used for a variety of dishes, including those with gluten.
- When eating out, ask how food is prepared and if arrangements can be made to prevent contamination.
A gluten-restricted diet can be challenging. So consult with a registered dietitian (RD) for expert advise and to ensure that your diet contains adequate nutrients, calories, fiber and variety. Some individuals may also need to eliminate lactose from their diet while the small intestine heals. Because gluten can be found in various multivitamin and mineral supplements, an RD can help you choose the right supplement.
A pharmacist can tell you which medications contain gluten and gluten-free alternatives. It's essential to schedule and keep follow-up appointments with your doctor who can monitor your symptoms and change your treatment as needed. Your doctor can also give you advice that is tailored to your individual needs and concerns.
Two books I recommend are:
- Gluten-Free Diet: A Comprehensive Resource Guide (Expanded Edition), by Shelley Case, 2006, Case Nutrition Consulting, Canada
- The Gluten-Free Gourmet series by Bette Hagman, Henry Holt and Company, LLC, New York
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Celiac Disease Foundation
13251 Ventura Blvd. #1
Studio City, Ca. 91604
The Gluten Intolerance Group of North America
31214 124th Ave SE
Auburn, WA 98092-3667
National Institute of Diabetes & Digestive & Kidney Disorders
Office of Communications and Public Liaison
Building 31, Room 9A04
31 Center Drive, MSC 2560
Bethesda, MD 20892-2560
Linda Antinoro, R.D., L.D.N., J.D., C.D.E. is a senior nutritionist at Brigham and Women's Hospital. She is also a certified diabetes educator. Ms. Antinoro counsels patients at the Nutrition Consultation Service.