Celiac Disease Management in the United Kingdom Specialist Pediatric Gastroenterology Centers-A Service Survey

J Pediatr Gastroenterol Nutr. 2021 Jun 1;72(6):e149-e153. doi: 10.1097/MPG.0000000000003126.


Objectives: The 2012 European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) guidelines on celiac disease (CD) recommended a no-biopsy pathway (NBP) for symptomatic children with high immunoglobin A (IgA)-based anti-tissue transglutaminase (TGA-IgA) titers, positive anti-endomysial antibody and human leukocyte antigen (HLA)-DQ2/DQ8 status. We aimed to understand variations in practice amongst specialist pediatric gastroenterology centers (SPGIC) in the United Kingdom (UK).

Methods: A survey questionnaire was sent to all UK SPGIC (n = 29) providing endoscopy services for CD diagnosis. It was divided into four main subgroups: analyzing diagnosis of CD through adherence to the ESPGHAN (2012) guidelines, post-diagnosis care and long-term follow-up and discharge from pediatric services.

Results: All 29 responded. NBP was implemented in 28 of 29 centers. Five of 29 centers had already stopped HLA-DQ2/DQ8 testing for NBP diagnosis. Twenty six of 29 centers were performing endoscopy on screening-identified children (mostly asymptomatic, "at-risk" patients). Diagnosis was communicated by a doctor in 65% SPGIC (n = 19). Most centers (n = 23) waited 6-12 months post-diagnosis to start gluten-free oats. Routine vitamin D supplementation was commenced by 4 of 29 centers. All centers repeated TGA-IgA to assess normalization but at varying times post-GFD. Follow-up was with a combination of doctors/dieticians (n = 26). Eleven of 29 centers discharged their patient to primary care.

Conclusions: There was excellent uptake of ESPGHAN guidelines (2012) in the UK and adherence to guidelines is generally good. Despite published evidence and pragmatic advice from the British Society of Paediatric Gastroenterology Hepatology and Nutrition and National Institute for Health and Care Excellence, significant differences remain in diagnostic and ongoing management practice and are opportunities for research and directive evidence-based follow-up guidance.