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How to manage adult coeliac disease: perspective from the NHS England Rare Diseases Collaborative Network for Non-Responsive and Refractory Coeliac Disease
  1. Elisabeth Megan Rose Baggus1,
  2. Marios Hadjivassiliou1,
  3. Simon Cross1,
  4. Hugo Penny1,
  5. Heidi Urwin2,
  6. Sarah Watson3,
  7. Jeremy Mark Woodward4,
  8. David S Sanders5
  1. 1Academic Unit of Gastroenterology, Royal Hallamshire Hospital, Sheffield, UK
  2. 2Coeliac UK, High Wycombe, Buckinghamshire, UK
  3. 3Highly Specialised Services, NHS England, England, UK
  4. 4Department of Gastroenterology, Cambridge Intestinal Failure and Transplant, Cambridge, UK
  5. 5Gastroenterology and Liver Unit, Royal Hallamshire Hospital, Sheffield, UK
  1. Correspondence to Professor David S Sanders, Academic Unit of Gastroenterology, Royal Hallamshire Hospital, Sheffield S10 2JF, UK; david.sanders{at}


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.

  • coeliac disease
  • small bowel
  • small bowel disease
  • small intestine

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  • Contributors EMRB, MH, SC, HP, HU, SW, JMW and DSS were involved in the planning of this review, and worked on sequential versions. DSS is the review article guarantor.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • 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.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.