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  • Roadmap
  • Published:

Society for the Study of Celiac Disease position statement on gaps and opportunities in coeliac disease

Nature Reviews Gastroenterology & Hepatology volume 18, pages 875–884 (2021)Cite this article

Subjects

Abstract

Progress has been made in understanding coeliac disease, a relatively frequent and underappreciated immune-mediated condition that occurs in genetically predisposed individuals. However, several gaps remain in knowledge related to diagnosis and management. The gluten-free diet, currently the only available management, is not curative or universally effective (some adherent patients have ongoing duodenal injury). Unprecedented numbers of emerging therapies, including some with novel tolerogenic mechanisms, are currently being investigated in clinical trials. In March 2020, the Celiac Disease Foundation and the Society for the Study of Celiac Disease convened a consensus workshop to identify high-yield areas of research that should be prioritized. Workshop participants included leading experts in clinical practice, academia, government and pharmaceutical development, as well as representatives from patient support groups in North America. This Roadmap summarizes key advances in the field of coeliac disease and provides information on important discussions from the consensus approach to address gaps and opportunities related to the pathogenesis, diagnosis and management of coeliac disease. The morbidity of coeliac disease is often underestimated, which has led to an unmet need to improve the management of these patients. Expanded research funding is needed as coeliac disease is a potentially curable disease.

Key points

  • Coeliac disease is a common and serious medical condition that is under-recognized among the health-care provider community, government and the public.

  • This Roadmap summarizes consensus recommendations to address gaps and opportunities in pathogenesis, diagnosis and management of coeliac disease.

  • Various animal models are available to translate hypotheses generated from human studies, and progress is being made in the development of physiological coeliac epithelial models based on organoid technology.

  • Coeliac-specific serology is highly reliable for the diagnosis of coeliac disease; however, there is disagreement between experts as to the necessity of intestinal biopsy to confirm the diagnosis.

  • There is increasing need for development of programmes for proper clinical management of coeliac disease, and the number of potential therapeutic targets and clinical trials has grown exponentially over the past 15 years.

  • Increased funding for coeliac disease research is crucial to improve clinical management and facilitate development of therapies for this condition.

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Fig. 1: Timeline of major advances and discoveries in coeliac disease.

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Acknowledgements

M.I.P.-S. received an Innovation Grant from CCC, Medicine Internal Career Research Award, Division of Gastroenterology AFP grant, and Farncombe Family Digestive Health Research Institute Award. J.A.S. is supported by the National Institute of Diabetes and Digestive and Kidney Diseases of the NIH under award number K23DK119584. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH or the Canadian Institutes of Health Research. E.F.V is funded by a CIHR grant 168840 and holds a Canada Research Chair. R.P.A. declares no funding. The authors thank the hospitality of the Faculty House at Columbia University and Implementation Committee, C. Beckman and K. Cervenka. The authors thank the organizing committee, P. H. R. Green and J. A. Murray, the scientific committee P. H. R. Green (Society for the Study of Celiac disease (SSCD) Past President), C.P.K. (SSCD President), B.L. (SSCD President Elect), J. A. Murray. (SSCD Past President) and E.F.V. (SSCD Past President). Special thanks for the contribution of other Consensus Workshop Faculty: D. Adams (Vanderbilt Center Celiac Clinic, USA); A. Alaedini, G. Bhagat, S. Krishnareddy, N. R. Reilly, A. R. Lee (Columbia University Celiac Disease Center, USA); S. Moleski (Jefferson Celiac Center, USA); B. Tycko (John Threurer Cancer Center, USA); M. J. Blaser (Rutgers University, USA); S. P. Burke, C. Elson; R. S. Chuong and L. Harris (Mayo Clinic. USA); B. Jabri, C. Semrad and R. Verma (University of Chicago, USA); M. Leonard and A. Fasano (Center for Celiac Research and Treatment at Massachussets General Hospital, USA); E. Liu (Children’s Hospital Colorado, USA); A. Cartee (University of Michigan, USA); E. Charles (University of Alabama, USA); A. Rothermel (NIAID, NIH, DHHS); M. Geller, D. Ceizler and R. English (Celiac Disease Foundation); F. Leon (Provention Bio) and A. Sapone (Takeda Pharmaceuticals). Only participants of the workshop included as authors were involved in the writing of this Roadmap Review.

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Author notes

  1. These authors contributed equally: M. Ines Pinto-Sanchez, Jocelyn A. Silvester.

Authors and Affiliations

  1. Farncombe Family Digestive Health Research Institute, Hamilton, Ontario, Canada

    M. Ines Pinto-Sanchez & Elena F. Verdu

  2. McMaster University Medical Center, Hamilton, Ontario, Canada

    M. Ines Pinto-Sanchez & Elena F. Verdu

  3. Harvard Medical School Celiac Research Program, Boston, MA, USA

    Jocelyn A. Silvester, Daniel A. Leffler, Amelie Therrien & Ciaran P. Kelly

  4. Boston Children’s Hospital, Boston, MA, USA

    Jocelyn A. Silvester

  5. Celiac Center, Beth Israel Deaconess Medical Center, Boston, MA, USA

    Jocelyn A. Silvester, Daniel A. Leffler, Amelie Therrien & Ciaran P. Kelly

  6. Celiac Disease Center, Columbia University, New York, NY, USA

    Benjamin Lebwohl

  7. Takeda Pharmaceuticals, Cambridge Massachusetts, Cambridge, MA, USA

    Daniel A. Leffler

  8. Wesley Medical Research, The Wesley Hospital, Auchenflower, Queensland, Australia

    Robert P. Anderson

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All authors participated in the conception, writing and editing of the article.

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Correspondence to Elena F. Verdu.

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Competing interests

B.L. has consulted for Takeda and Anokion. D.A.L. receives salary support from Takeda Pharmaceuticals unrelated to this manuscript. M.I.P.-S. has consulted for Takeda and Lupin unrelated to this manuscript. J.A.S. has consulted for Takeda Pharmaceuticals and received grant funding from Glutenostics, Milky Way Life Sciences, the Celiac Disease Foundation and BEYOND Celiac. E.F.V. received grant funding from Biocodex Foundation and Gilead unrelated to this manuscript. R.P.A. has served as consultant for Takeda, GSK, Anokion, Allero Therapeutics, TregTherapeutics and EVOQ Therapeutics. R.P.A. is founder and shareholder of Novoviah Pharmaceuticals and is the inventor of patents relating to the diagnosis and treatment of coeliac disease. The remaining authors declare no competing interests.

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Nature Reviews Gastroenterology & Hepatology thanks Stefano Guandalini, Knut Lundin, David Sanders and the other, anonymous, reviewer(s) for their contribution to the peer review of this work.

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Related links

Celiac Disease Foundation: https://celiac.org/

Coeliac disease centres: https://celiac.org/celiacdiseasecentersandprograms/

ImproveCareNow: https://www.improvecarenow.org/

SEER database: https://seer.cancer.gov/

Surveillance Research Program: https://surveillance.cancer.gov/

Society for the Study of Celiac Disease: https://www.theceliacsociety.org/

TrialNet: https://www.trialnet.org/

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Pinto-Sanchez, M.I., Silvester, J.A., Lebwohl, B. et al. Society for the Study of Celiac Disease position statement on gaps and opportunities in coeliac disease. Nat Rev Gastroenterol Hepatol 18, 875–884 (2021). https://doi.org/10.1038/s41575-021-00511-8

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