No Need for Routine Endoscopy in Children With Celiac Disease on a Gluten-free Diet

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Recently, a press release with the head line “Twenty percent of children with celiac disease do not heal on a gluten-free diet” was published, based on a publication in this journal (1). This press release was based on a retrospective study on 103 patients with celiac disease (CD) from 2 children's hospitals in Boston, MA, and cites the first author, Dr. Maureen M. Leonard from the Mass General Hospital for Children: “While the long-term effects are not known, persistent enteropathy may predispose pediatric patients with celiac disease to future complications and suboptimal growth” and “These findings suggest the need not only for a baseline endoscopy to confirm the diagnosis of CD but also considerations of a repeat biopsy to evaluate for remission.” The authors call for further studies to confirm their findings, to better understand the response to a gluten-free diet (GFD), and to evaluate further treatment options.
This press release was published on different Web sites including those of pediatric associations, and has raised considerable uncertainty among both pediatricians and patient organizations. In patients and their parents it has induced anxiety on further complications and prompted requests for additional endoscopic examinations. It raised questions about the potential need for other therapeutic interventions in addition to gluten exclusion, due to the incomplete mucosal recovery on GFD.
The article, on which the press release was based, included chart reviews of 103 children with biopsy-proven CD who underwent a second upper endoscopy with duodenal biopsies at least 12 months after starting GFD. The endoscopies were not performed systematically. The reasons for repeating endoscopy were persistent or new symptoms in 72 children, and confirmation of mucosal healing only in 11. Results for autoantibodies against tissue transglutaminase (tTGA) were available in only 71 patients, with positive or borderline results in a third of them. Based on chart notes, adherence to GFD was considered to be excellent in 94 of the patients. The authors found villous atrophy (Marsh 3) in 20 patients. The presence of Marsh 3 lesions was neither related to tTGA positivity nor to symptoms reported in chart notes.
We consider the study to have important limitations:
The villous atrophy prevalence of 19% reported by Leonard et al is considerably higher than the 5% and 9%, respectively, found in follow-up studies in the Australian and Austrian cohorts (7,8). The authors of these well performed studies concluded that complete mucosal recovery is highly likely in children reporting to be compliant with a GFD. They also conclude that negative serological tests identify mucosal recovery, which obviates the need for repeat endoscopic biopsies in such cases. All 3 studies included children who were on a GFD for at least 12 months. It appears possible that some children with complete flattening of the villi at the time of diagnosis (Marsh 3c) may have improved to Marsh 3a after introducing GFD. It is more likely that children with continuous enteropathy may not have been fully compliant with the GFD. Nonadherence was reported by Leonard et al in 8 of 103 children and may have been detected in further patients with more detailed and standardized dietary assessment. As already stated, these patients should have been excluded from the analysis.

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