Ms Elisabeth Baggus

Academic Unit of Gastroenterology, University of Sheffield

Title of the project: Non-responsive and refractory Coeliac Disease: the largest UK experience from the National Centre of the NHS England Rare Diseases Collaborative Network

Project Supervisor: Professor David Sanders

Over the past few years I have developed a keen interest in gastroenterology and the importance of research so pursuing an intercalated BMedSci which combined these interests was the perfect opportunity for me.

Coeliac disease (CD) is a common digestive disorder caused by an adverse reaction to gluten. The mainstay of treatment for CD is a gluten free diet, however in up to 30% of patients symptoms persist – non-responsive coeliac disease (NRCD). There are many causes for NRCD, one of which is refractory coeliac disease (RCD), of which there are two types (RCD I and II), with RCD II being associated with a poor prognosis.

The aims of my study were to investigate the causes responsible for NRCD, and to assess and compare mortality across different NRCD groups. I found that, of 2,199 patients seen at our centre with CD, 292 (13.3%) had persisting symptoms. The leading causes for persisting symptoms in patients without evidence of RCD were gluten contamination (24%), and functional/irritable bowel type symptoms (20%). In this cohort, 74 patients (26% of all NRCD) were diagnosed with RCD. Higher age at CD diagnosis, male gender, and hypoalbuminaemia at presentation were predictors for being in the RCD II group, which was associated with worse outcomes, with an estimated five-year survival of 76.2%.

This is the largest UK study of NRCD and RCD, and these findings have the potential to help guide management of patients with NRCD and RCD in the future by adding to the small but growing pool of evidence available for these patients.