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Digestive Health and Wellness

Celiac Disease: The Importance of Getting Tested Before Going Gluten-Free

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celiac-gluten free-autoimmune-gluten-gut health

Gas or bloating? Tempted to ”try on” the gluten-free diet to see if it helps? Not so fast! You may be making it harder to know what’s wrong.

Alice Bast

CEO, Beyond Celiac

Celiac disease, a serious genetic autoimmune disease, affects approximately 3 million Americans. In people with celiac disease, gluten — a protein in wheat, barley, and rye — damages the small intestine, leading to hundreds of possible symptoms and health problems. Currently, the only treatment is to follow a strict gluten-free diet. Almost all systems and parts of the body can be affected by celiac disease. As a result, it is a clinical chameleon. Knowing to test for it is challenging because the symptoms often mimic those of other diseases, including irritable bowel syndrome (IBS), Crohn’s disease, lactose intolerance, and depression.

While many people try the gluten-free diet to see if they feel better, an official diagnosis made by a doctor will help you know definitively whether gluten is the cause of your symptoms and whether lifelong gluten avoidance is necessary for your health. You must be on a regular, gluten-containing diet to be accurately tested for celiac disease — going gluten-free before testing may result in a false negative. 

The testing process begins with a simple blood test for celiac-related antibodies. If the result is positive, a follow-up biopsy of your small intestine will be needed to confirm the diagnosis.

No piece of cake

Although gluten-free food, including bread, pizza, and cookies, seems to be everywhere, the gluten-free diet is no piece of cake. In a recent Beyond Celiac survey, respondents with celiac disease said that gluten-free food is expensive (80%), and dining out is difficult due to lack of gluten-free options (91%), making it hard to enjoy life. What’s more, the survey showed that nearly 73% of respondents with celiac disease are still accidentally exposed to gluten each year, resulting in symptoms. More than a third report “getting glutened” as often as 1-5 times a month, and two-thirds have very severe or bad symptoms as a result, with gastrointestinal (84%), neurological (56%), and psychological (40%) symptoms being the most common.

Work is being done to accelerate research for treatments and a cure, but until that time, people with celiac disease need to do their best to stick to a strict gluten-free diet.

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