300 Longwood Avenue Boston, MA 02115 (617) 355-6000 Clinical Services (Celiac Disease Program and Support Group): Celiac Patient Education Information What is celiac disease? Summary Points > Individuals with celiac disease have a permanent sensitivity to gluten, which is a protein found in wheat, rye and barley. > Celiac disease is an autoimmune disease. An autoimmune disease occurs when your body's immune system, which usually fights infections to keep you healthy, attacks one of your organs or tissues inappropriately. In the case of celiac disease, the organ that is damaged is the small intestine. This damage only occurs when gluten is eaten. > Celiac disease damages the villi in your intestinal lining and your body can't absorb nutrients as it should. Food that we eat is normally broken down into small particles in the stomach and then digested and absorbed in the small intestine. If you have celiac disease, gluten crosses the lining of the intestine and activates the immune system. The villi, which are finger-like projections on the surface of the intestinal lining, are then damaged.     Intestinal lining with damaged villa Intestinal lining with healthy villa > The first step in the diagnosis of celiac disease is a blood test. This is used to see if there are high levels of celiac antibodies in the bloodstream. If the levels are high, an upper endoscopy is then performed. This procedure involves inserting a tube through the mouth, down the esophagus, and through the stomach into the small intestine. Biopsies, or tiny samples of the intestinal lining, are taken and examined under a microscope. If the biopsies show changes consistent with celiac disease, the diagnosis is confirmed. > You can not "grow out" of celiac disease. Your body will always be sensitive to gluten. > There is currently no medication to treat celiac disease. If you have celiac disease, you must follow a strict gluten-free diet, which means that you may not eat anything that contains wheat, rye, barley, and their derivatives. Oats should also be avoided since oat products are frequently contaminated by wheat. A few people with celiac disease may develop intestinal damage even from eating oats that are pure. > On a gluten-free diet, the intestinal damage will heal, the villi will regrow, and the symptoms will disappear. Some individuals with celiac disease only realize that they had symptoms after they start to feel better on the gluten-free diet. > A meeting with a dietician or nurse educator with special knowledge about celiac disease is very important, and should occur as soon as possible after the diagnosis is made. In addition, support groups are a valuable resource for information about the diet and lifestyle changes. > Children with celiac disease on a gluten-free diet are expected to lead a completely normal life. > Schedule a follow up visit with your diagnosing doctor within one to three months of diagnosis. Repeat blood tests are usually performed after six months to see if the antibody levels have returned to normal. If blood levels remain high, the first step is to schedule an appointment with the dietician. Together, you can look for hidden sources of gluten in the diet. > We recommend that brothers, sisters and parents of children with celiac disease have blood drawn to screen for celiac disease. The usual tests done are a tissue transglutaminase antibody level and a total serum IgA. Most individuals with celiac disease don't have obvious gastrointestinal symptoms. More commonly, they may have atypical symptoms, such as fatigue due to anemia, or no symptoms at all. > Even in individuals without symptoms, following a strict gluten-free diet may avoid serious complications of celiac disease, such as nutritional deficiencies and an increased risk of certain types of cancer and other autoimmune diseases. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. Copyright © Children's Hospital Boston. All rights reserved.