Nonresponsive Celiac Disease

In patients with nonresponsive celiac disease, symptoms persist even after following a gluten-free diet for six to 12 months or return after a long period of good health. A study in the Journal of Pediatric Gastroenterology and Nutrition found that nearly one in five children with celiac disease had persistent damage to the gut despite following a gluten-free diet for at least a year. Blood tests for tTG conventionally used in follow-up failed to predict damage.

The findings

The study involved 103 children who had follow-up biopsies between one and 12 years after an initial biopsy to diagnose celiac. Nineteen percent of the patients still had tissue damage.

Blood tests detected elevated tTG in 43 percent of those with persistent damage and 32 percent of those with healing. Only 55 percent of patients with persistent damage reported feeling any symptoms. A majority of healed patients also complained of symptoms possibly related to celiac.

Experts widely endorse tTG tests to monitor gluten-free adherence and recovery in patients with celiac. This study raises concern that the test, while accurate for initial diagnosis, is a poor indicator of healing. The authors argue an additional biopsy is the only way to confirm recovery.

This data set was small and relied on past medical histories, which is a statistically weak approach. While the findings raise an important concern, they will need confirmation by larger studies to recommend a change in health care practice.

Nonresponsive celiac disease

The study also corroborates rising concern about a significant proportion of celiac patients who respond poorly to the gluten-free diet. Persistent damage to the gut increases risk for complications, such as lymphoma. This adds urgency to the search for alternative treatments for patients with nonresponsive celiac disease.

Leonard MM, Weir DC, DeGroote M, Mitchell PD, Singh P, Silvester JA, Leichtner AM and Fasano A, “Value of IgA tTG in predicting mucosal recovery in children with celiac disease on a gluten free diet,” Journal of Pediatric Gastorenterology and Nutrition, Nov 3 2016, doi: 10.1097/MPG.0000000000001460 [Epub ahead of print].

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