{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T03:59:33Z","timestamp":1788839973383,"version":"build-2803163510"},"reference-count":35,"publisher":"MDPI AG","issue":"13","license":[{"start":{"date-parts":[[2022,7,5]],"date-time":"2022-07-05T00:00:00Z","timestamp":1656979200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Nutrients"],"abstract":"<jats:p>We characterised the aetiology of non-responsive coeliac disease (NRCD) and provided contemporary mortality data in refractory coeliac disease (RCD) from our centre. We also measured urine gluten immunogenic peptides (GIPs) in patients with established RCD1 to evaluate gluten exposure in these individuals. Methods: This was a longitudinal cohort study conducted in Sheffield, UK. Between 1998 and 2019, we evaluated 285 adult (\u226516 years) patients with NRCD or RCD. Patients with established RCD1 and persisting mucosal inflammation and\/or ongoing symptoms provided three urine samples for GIP analysis. Results: The most common cause of NRCD across the cohort was gluten exposure (72\/285; 25.3%). RCD accounted for 65\/285 patients (22.8%), 54\/65 patients (83.1%) had RCD1 and 11\/65 patients (16.9%) had RCD2. The estimated 5-year survival was 90% for RCD1 and 58% for RCD2 (p = 0.016). A total of 36\/54 (66.7%) patients with RCD1 underwent urinary GIP testing and 17\/36 (47.2%) had at least one positive urinary GIP test. Conclusion: The contemporary mortality data in RCD2 remains poor; patients with suspected RCD2 should be referred to a recognised national centre for consideration of novel therapies. The high frequency of urinary GIP positivity suggests that gluten exposure may be common in RCD1; further studies with matched controls are warranted to assess this further.<\/jats:p>","DOI":"10.3390\/nu14132776","type":"journal-article","created":{"date-parts":[[2022,7,6]],"date-time":"2022-07-06T05:41:06Z","timestamp":1657086066000},"page":"2776","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":33,"title":["Non-Responsive and Refractory Coeliac Disease: Experience from the NHS England National Centre"],"prefix":"10.3390","volume":"14","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1610-2282","authenticated-orcid":false,"given":"Hugo A.","family":"Penny","sequence":"first","affiliation":[{"name":"Academic Unit of Gastroenterology, Royal Hallamshire Hospital, Sheffield S10 2JF, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1787-2003","authenticated-orcid":false,"given":"Anupam","family":"Rej","sequence":"additional","affiliation":[{"name":"Academic Unit of Gastroenterology, Royal Hallamshire Hospital, Sheffield S10 2JF, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elisabeth M. R.","family":"Baggus","sequence":"additional","affiliation":[{"name":"Academic Unit of Gastroenterology, Royal Hallamshire Hospital, Sheffield S10 2JF, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah. H.","family":"Coleman","sequence":"additional","affiliation":[{"name":"Academic Unit of Gastroenterology, Royal Hallamshire Hospital, Sheffield S10 2JF, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rosalie","family":"Ward","sequence":"additional","affiliation":[{"name":"Academic Unit of Gastroenterology, Royal Hallamshire Hospital, Sheffield S10 2JF, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Graeme","family":"Wild","sequence":"additional","affiliation":[{"name":"Academic Unit of Gastroenterology, Royal Hallamshire Hospital, Sheffield S10 2JF, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gerd","family":"Bouma","sequence":"additional","affiliation":[{"name":"Department of Gastroenterology, Vrije Universiteit Medical Center, 1117 Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nick","family":"Trott","sequence":"additional","affiliation":[{"name":"Academic Unit of Gastroenterology, Royal Hallamshire Hospital, Sheffield S10 2JF, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6819-3476","authenticated-orcid":false,"given":"John A.","family":"Snowden","sequence":"additional","affiliation":[{"name":"Department of Haematology, Royal Hallamshire Hospital, Sheffield Teaching Hospital NHS Foundation Trust, Sheffield S10 2JF, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Josh","family":"Wright","sequence":"additional","affiliation":[{"name":"Department of Haematology, Royal Hallamshire Hospital, Sheffield Teaching Hospital NHS Foundation Trust, Sheffield S10 2JF, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Simon S.","family":"Cross","sequence":"additional","affiliation":[{"name":"Academic Unit of Gastroenterology, Royal Hallamshire Hospital, Sheffield S10 2JF, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marios","family":"Hadjivassiliou","sequence":"additional","affiliation":[{"name":"Department of Neurology, Royal Hallamshire Hospital, Sheffield Teaching Hospital NHS Foundation Trust, Sheffield S10 2JF, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David S.","family":"Sanders","sequence":"additional","affiliation":[{"name":"Academic Unit of Gastroenterology, Royal Hallamshire Hospital, Sheffield S10 2JF, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2022,7,5]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"823","DOI":"10.1016\/j.cgh.2017.06.037","article-title":"Global Prevalence of Celiac Disease: Systematic Review and Meta-analysis","volume":"16","author":"Singh","year":"2018","journal-title":"Clin. 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