Children diagnosed with celiac disease through screening report improved quality of life

Diagnosis benefits children even if they previously had no symptoms, preliminary study finds

By Amy Ratner, director of scientific affairs

Children who had no symptoms but were diagnosed with celiac disease as part of a mass pediatric screening program reported a better quality of life overall after a year on the gluten-free diet, preliminary results of a study funded by Beyond Celiac show. In particular, the children said they felt they were doing better socially.

Evaluations by the children’s caregivers were even more positive. Parents and other caregivers reported significant improvement in their children socially, emotionally and academically, the early findings of the study by researchers at Colorado Children’s Hospital found.

Twenty-four children with an average age of about 11 years and their caregivers were included in the early results. The children are participating in an on-going study of those were diagnosed with celiac disease when screened for type 1 diabetes and celiac disease as part of the Autoimmunity Screening for Kids (ASK) program.

Of about 10,000 children screened through ASK, 242 had an initial positive celiac disease test. Of the 185 children who returned for follow-up, 149 had a positive confirming test.

Related: Universal screening may be only way to find all children with celiac disease

The two dozen children surveyed about their health-related quality of life come from that group. Researchers plan to include 50 children in the study, each of whom will be followed for about two years.

Since these children have no obvious symptoms of celiac disease, they would have been unlikely to be diagnosed otherwise. The children and their caregivers filled out health-related quality of life questionnaires before and after diagnosis. Researchers compared the questionnaire responses to determine the impact being diagnosed through screening had on the children.

This is the first study in the United States to look at quality of life on the gluten-free diet specifically in children diagnosed through screening as opposed to children diagnosed because they had symptoms or risk factors, such as parents or siblings with celiac disease.

Results provide preliminary evidence that participating in screening, with a subsequent diagnosis of celiac disease and the start of a gluten-free diet, has benefits for children even if they were not showing symptoms beforehand. Questions have been raised about whether the diagnosis and diet benefit children who did not seem be suffering from gastrointestinal and other symptoms of celiac disease before finding out they have the condition.

The children in the study on average reported a significant improvement in answers to questions about how they were functioning socially and overall. Their scores also showed improvement academically, emotionally and in physical health, but these were to a lesser degree.

Meanwhile, caregivers on average also reported improvement in social functioning but to a lesser degree than the children. The caregivers noted significant improvement in their children’s overall and emotional health, followed by academic and physical functioning.

Researchers also noted that although racially and ethnically diverse children participated in ASK, in preliminary results those who went on to be diagnosed with celiac disease were predominantly white.

The ongoing study is funded in part by the $150,000 Society for the Study of Celiac Disease/Beyond Celiac Early Career Investigator grant.