Celiac Disease: Is Gluten-Free Really Gluten-Free?

Sandra Adamson Fryhofer, MD


October 31, 2013

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Hello. I am Dr. Sandra Fryhofer. Welcome to Medicine Matters. The topic: gluten sensitivity and celiac disease, new diagnosis and management guidelines, new FDA standards for gluten on food labels, and lymphoma risks in patients who have celiac disease. Here is why it matters. Gluten is found in foods. It is the storage protein for wheat, barley, and rye. It also triggers celiac disease, an autoimmune disease affecting as many as 1% of people living in Western nations. For these patients, exposure to gluten causes damage to the lining of the intestine. Symptoms include diarrhea, abdominal pain, bloating, gas, malabsorption, and weight loss. Some patients have no symptoms at all.

Patients with celiac disease may also have elevated liver tests, iron deficiency anemia, and low bone density. The American College of Gastroenterology recently released new clinical guidelines on diagnosis and management.[1] The mainstay of therapy: a gluten-free diet. For diagnosis, check for celiac antibodies, but it is best to test for celiac before going gluten-free. The first and best test is checking fortTG-IgA (immunoglobulin A anti-tissue transglutaminase antibody). Duodenal biopsy may be needed to confirm the diagnosis, especially in young children. Most, but not all, patients with celiac disease will get better on a gluten-free diet. In the past, trying to figure out which foods are gluten-free was challenging. Labels can be confusing and misleading. No more. New US Food and Drug Administration (FDA) labeling standards limit the gluten-free label only to foods containing less than 20 parts per million -- just like in Canada and the European Union.

The FDA has also tried to take out the loopholes. The same restrictive standard also applies to food labeled "no gluten," "free of gluten," or "without gluten." There is a grace period. The standards don't go into effect immediately. The FDA has given food manufacturers up to a year to comply. The good news is that FDA says most foods now labeled "gluten-free" are just that. Most are already in compliance. For patients with celiac disease, eliminating all gluten from the diet should allow the gut to heal. However, some celiac disease patients, especially those who are not compliant with a gluten-free diet, will have consistent villous atrophy of the intestinal mucosa. This can increase the risk for lymphoproliferative malignancy.

A new 9-year Swedish study published in the Annals of Internal Medicine quantifies this risk.[2] The study included more than 7500 patients with celiac disease. National registries were used to determine baseline risk for lymphoproliferative malignancies, including non-Hodgkin lymphoma as well as both B- and T-cell lymphomas. All of the patients had follow-up biopsies after the initial celiac diagnosis, and 43% were found to have persistent villous atrophy, indicating that the intestinal lining was still damaged. Compared with the general population, patients with persistent villous atrophy were up to 4 times more likely to have a malignancy, while those with biopsies showing healed mucosa had malignancy risks similar to the general population.

It is important for patients with celiac disease to adhere to a gluten-free diet. The new FDA standards should help make compliance a little easier to digest and to achieve. For Medicine Matters, I am Dr. Sandra Fryhofer.


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