J Pediatr Gastroenterol Nutr. 2021 Mar 17. doi: 10.1097/MPG.0000000000003126.Online ahead of print.

Siba Prosad Paul ¹, Varathagini Balakumar, Peter Michael Gillett

Author information

• ¹*Department of Pediatrics, Yeovil District Hospital, Yeovil, United Kingdom †Medical School, Cardiff University, Cardiff, Wales ‡Department of Pediatric Gastroenterology, Royal Hospital for Sick Children, Edinburgh, Scotland.

Abstract

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 IgA-based anti-tissue transglutaminase (TGA-IgA) titres, positive anti-endomysial antibody and 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 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 guidelines, post-diagnosis care and long-term follow-up and discharge from pediatric services.

Results: All 29 responded. NBP was implemented in 28/29 centers. 5/29 centers had already stopped HLA-DQ2/8 testing for NBP diagnosis. 26/29 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 4/29 centers. All centers repeated IgA-TGA to assess normalisation but at varying times post-GFD. Follow-up was with a combination of doctors/dieticians [n = 26]. 11/29 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 Gastroenterology 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.