A study published November 3, 2016 in the Journal of Pediatric Gastroenterology, found that nearly 20% of children with celiac disease continued to show intestinal damage, despite adhering to a gluten-free diet for one year or more. The study, conducted by researchers at the Celiac Research Program at Harvard Medical School, sought to assess the accuracy of IgA anti-tTG serologic testing as a measure of intestinal healing in pediatric patients. Current clinical guidelines do not recommend biopsy for this purpose, but these guidelines were drafted more than 25 years ago and do not take into account what has been learned in the interim about the presentation of celiac disease.

Researchers conducted chart review on 103 pediatric patients (under age 21) for whom celiac disease had been confirmed by diagnostic endoscopy/biopsy, and who underwent repeat endoscopy and duodenal biopsy after at least one year on the gluten-free diet. 91 percent of these patients were identified as having maintained “excellent” adherence to dietary guidelines; 92 of the patients had been IgA tTG positive at diagnosis as well.

Chart review found that at the time of the second endoscopy, a full third (33%) of patients still showed elevated serology, and two thirds (66%) of patients were still symptomatic, with 19% still having lesions indicative of active celiac disease. Nearly half of those with lesions were asymptomatic.

The study concludes that neither the presence or absence of symptoms, nor a positive serology result are accurate predictors of mucosal healing in pediatric celiac disease patients. While current clinical guidelines do not recommend biopsy for evaluation of remission, the results of this study suggest that biopsy is the only reliable way to assess for the presence of lesions, either at diagnosis or follow-up.

Additional study is necessary to understand the effectiveness of the gluten-free diet in juveniles, and to evaluate for any alternative treatments that can lessen the possibility of long-term effects on development.

Because children in particular struggle with strict adherence to the gluten-free diet, long-term follow-up is especially important for them. If you have a child with celiac disease, please use the Pediatric Follow-Up Checklist with your pediatrician and your dietitian to assure proper post-diagnosis treatment.

Read the original study here.

Gluten-Free Diet Does Not Heal Intestinal Damage in 20% of Children