Have you suffered for years with undiagnosed gastrointestinal symptoms such as diarrhea, constipation, or gas? Have you ever been told you had irritable bowel disease? Do you suffer from iron deficiency anemia but no one has ever been able to identify the cause? In addition to type 1 diabetes do you have unexplained gastrointestinal symptoms? Do you have fertility problems with no known cause? Do you have a first or second degree relative who has celiac disease?

If you answered YES to any of these questions, you may want to consider being tested for celiac disease, a genetically-based autoimmune disease. It is estimated that 1 in 133 people in the United States have celiac disease, many of whom remained undiagnosed.

People with celiac disease can not eat gluten, a protein found in wheat, barley, and rye. If they do, the gluten in these grains triggers an immune system response that damages the lining of the small intestine, preventing nutrients from being properly absorbed.

While you may think you would rather not know whether you have this disease because you can’t imagine giving up pizza and beer, you may want to rethink your reasoning. Undiagnosed and untreated celiac disease can result in a number of complications, many of them serious. Plus, gluten-free pizza and beer are available—sometimes even in restaurants!

Four Steps to Diagnosis

The first step in getting diagnosed is to talk with your doctor about any symptoms you are having and why you think you should be tested for celiac disease.

The second step is to have a simple blood test. These blood tests will measure the levels of certain antibodies that are found in above normal levels in people who have celiac disease. According to the National Institutes of Health, the tests you should have include the IgA tTG test which stands for immunoglobulin A antihuman tissue transglutaminase and the IgA EMA test which stands for immunoglobulin A endomysial antibody immunoflourescence test.

If the results of the blood tests are positive, the third step is to have a medical procedure called an endoscopy. During the endoscopy, biopsies of the small intestine will be taken. With celiac disease there is shortening or flattening of the intestinal villi—fingerlike projections in the lining of the intestine that help absorb food. The biopsy samples will be studied by a pathologist to determine whether there is damage to the lining of your small intestine.

If the blood and biopsy findings are positive for celiac disease, you will be advised to follow step four, a gluten-free diet. If your symptoms subside while on a gluten-free diet, you will be given a diagnosis of celiac disease.

Sometimes the road to diagnosis is not so straight forward. You may have symptoms suggestive of celiac disease but your blood tests may be normal. In this case you may have a deficiency of IgA antibodies and may require different antibody tests. Blood tests for celiac disease often include testing for IgA deficiency but check just to make sure.

You may have symptoms and positive blood tests, but a negative biopsy. In this case you and your doctor may decide you should follow a gluten-free diet anyway.

If you would like to read more about who should be tested for celiac disease and how it is diagnosed, read the National Institutes of Health Consensus Development Conference Statement on Celiac Disease available online free of charge at http://consensus.nih.gov/2004/2004CeliacDisease118html.htm

Copyright © by Tricia Thompson, MS, RD

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Celiac disease: how to get diagnosed