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Experts craft guidance for managing celiac disease :

August 30, 2016

A panel of experts has compiled guidance on the best practices for managing celiac disease (CD).

The advice spans a variety of topics, including testing, nutrition and endocrine problems.

“Serious concerns have been raised about the lack of effective long-term management programs to optimize the treatment of CD and the diagnosis and management of associated disease states,” authors wrote in the study “Evidence-Informed Expert Recommendations for the Management of Celiac Disease in Children” (Snyder J, et al. Pediatrics. Aug. 26, 2016,

Celiac, an autoimmune disorder marked by sensitivity to gluten, occurs in about 1% of children and puts patients at risk of associated diseases, according to the study. Existing guidelines tend to focus on diagnosis and treatment and less on long-term management of the disease.

Celiac is an autoimmune disorder marked by sensitivity to gluten that occurs in about 1% of children.Celiac is an autoimmune disorder marked by sensitivity to gluten that occurs in about 1% of children.

To fill that gap, a panel of experts including several AAP Fellows reviewed more than 600 publications and used 172 to develop the recommendations. Often finding the evidence lacking, they also relied on their own expertise when voting on the worthiness of 25 practices in six categories — bone health, hematologic issues, endocrine problems, liver disease, nutrition and testing.

Among the practices garnering unanimous support were use of quantitative immunoglobulin A (IgA) and IgA anti-tissue transglutaminase antibody testing; vitamin supplementation; screening for anemia and thyroid disease at diagnosis; access to a dietitian; and routine assessment of height, weight and body mass index.

The guidance has not been officially endorsed by the Academy, but Ivor D. Hill, M.B., Ch.B., M.D., FAAP, author of a related commentary (, applauded the work.

“I think it’s kind of mainstream with what most of us think, but nobody has ever put it down on paper before so I think it’s very valuable,” said Dr. Hill, a member of the AAP Section on Gastroenterology, Hepatology and Nutrition Executive Committee.

A message throughout the guidance is the importance of follow-up.

“Children, once they’ve been diagnosed, should be followed up at regular intervals to make sure they are recovering completely … and when they are doing well, be seen at least annually and have regular screening for certain things like vitamin D level, thyroid function test,” Dr. Hill said.

He also stressed that pediatricians should not put children on gluten-free diets before testing for celiac. Doing so will make it difficult for a specialist to diagnose celiac down the road, and the diet presents its own challenges.

“They need to understand a strict gluten-free diet is not easy, it’s cumbersome, it has quality of life implications and it’s expensive,” Dr. Hill said. “So you want to make sure the child needs it before they go on that diet.”

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