How to manage adult coeliac disease: perspective from the NHS England Rare Diseases Collaborative Network for Non-Responsive and Refractory Coeliac Disease

Abstract

Adult coeliac disease (CD) affects approximately 1% of the population. Most patients diagnosed will respond to a gluten-free diet; however, up to 30% may have persisting symptoms. Such patients may have ongoing issues associated with adherence, non-responsive CD or refractory CD. This article provides a clinical overview of how to manage this group of patients with persisting symptoms, including an investigational algorithm and details of how to contact the National Health Service England Rare Diseases Collaborative Network for Non-Responsive and Refractory Coeliac Disease. We hope this will be a valuable source of contemporary information for all UK gastroenterologists and internationally.

Keywords: coeliac disease; small bowel; small bowel disease; small intestine.

Conflict of interest statement

Competing interests: DSS has received educational research grants from Dr Schaer (a gluten-free food manufacturer) for investigator led studies. Dr Schaer did not have any input in the study design, access to study data, interpretation of the findings or drafting of the manuscript.

© Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.

Figures

Figure 1

National service algorithm for investigating patients with persisting symptoms. Clinicians considering referring to the national centre may choose to undertake any of the investigations (particularly those outlined in the green box) prior to referral. in our experience, the patients who are most commonly referred have already had a gastroscopy that demonstrates persisting villous atrophy and/or presence of a monoclone. *Some clinicians may opt not to check faecal calprotectin and to go directly to colonoscopy. green box: we tend to plan for all of these tests at the initial clinic appointment for NRCD. CD, coeliac disease; GFD, gluten-free diet; HLA, human leucocyte antigen; NRCD, non-responsive CD; RCD, refractory CD; SIBO, small intestinal bacterial overgrowth.

Figure 2

Outcomes following the diagnosis of adult CD and withdrawal of gluten. Group 1: consider alternate causes for ongoing symptoms. Group 2: consider RCD once ongoing gluten exposure, super-sensitivity and slow response have been excluded. Group 3: discharge to primary care. Group 4: discuss presence of ongoing inflammation (villous atrophy) with the patient, and explain potential risks of long-term complications as a result of this. If the patient agrees, consider further dietetic support. CD, coeliac disease; RCD, refractory coeliac disease.