Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 May 27;5(3):276-283.
doi: 10.1002/jpr3.12087. eCollection 2024 Aug.

Celiac disease in North America: What is the current practice of pediatric gastroenterology providers?

Arunjot Singh  1   2 , Jocelyn Silvester  3   4 , Justine Turner  5 , Imad Absah  6 , Brandon A Sparks  7 , Catharine M Walsh  8 , Julia M Bracken  9 , Joanna Stanisz  10 , Temara Hajjat  11 , Vahe Badalyan  12 , Ankur Chugh  13 , Edward J Hoffenberg  14 , Jenna K Dowhaniuk  15
Affiliations

Celiac disease in North America: What is the current practice of pediatric gastroenterology providers?

Arunjot Singh et al. JPGN Rep. .

Abstract

Objectives: While guidelines exist for the diagnosis and management of pediatric celiac disease (CeD), current practices in North America are not well-described. This study aimed to explore current practice patterns to identify gaps and direct future clinical, training and research initiatives.

Methods: A 23-item survey designed by the Celiac Disease Special Interest Group was distributed electronically to its members. Questions explored four themes: (1) screening and diagnosis pre and post the coronavirus disease (COVID)-19 pandemic, (2) treatment and monitoring, (3) family screening and transition of care, and (4) CeD focused training.

Results: The survey response rate was 10.8% (278/2552). Most respondents were from the United States (89.9%, n = 250) and Canada (8.6%, n = 24). While endoscopy remained the gold standard, serology-based diagnosis was accepted by 47.5% (132/278). In response to the COVID-19 pandemic, 37.4% of providers changed their diagnostic practice. Barriers to care included: lack of insurance coverage for dietitians, wait times, and lack of CeD focused training. During fellowship 69.1% (192/278) reported no focused CeD training.

Conclusion: Survey results revealed practice variation regarding the diagnosis and management of CeD in North America including a substantial proportion accepting non-biopsy, serology-based diagnosis, which increased during the COVID-19 pandemic. Variations in screening, diagnosis, interval surveillance, and family screening were also identified. Dedicated CeD education in pediatric gastroenterology fellowship may be an opportunity for standardizing practice and advancing research. Future North American guidelines should take current care patterns into consideration and develop new initiatives to improve care of children with CeD.

Keywords: clinical practice; endoscopy; training.

PubMed Disclaimer

Conflict of interest statement

Dr. Jocelyn Silvester has served on advisory boards for Alimentiv, Mozart Therapeutics, Takeda Pharmaceuticals, and Teva Pharmaceuticals. She has served as site‐PI for clinical trials sponsored by Cour Pharmaceuticals and Takeda Pharmaceuticals and has research support from Milky Way Life Sciences. Research reported in this publication was supported by the National Institute Of Diabetes And Digestive And Kidney Diseases of the National Institutes of Health under Award Number K23DK119584. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The remaining authors declare no conflict of interest.

Figures

Figure 1
Figure 1
Responses to survey question “Do you offer non‐endoscopic diagnosis of celiac disease?”
See this image and copyright information in PMC

References

    1. McAllister BP, Williams E, Clarke K. A comprehensive review of celiac disease/gluten‐sensitive enteropathies. Clin Rev Aller Immunol. 2019;57(2):226‐243. 10.1007/s12016-018-8691-2 - DOI - PubMed
    1. Hill ID, Dirks MH, Liptak GS, et al. Guideline for the diagnosis and treatment of celiac disease in children: recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. J Pediatr Gastroenterol Nutr. 2005;40(1):1‐19. 10.1097/00005176-200501000-00001 - DOI - PubMed
    1. Hill ID, Fasano A, Guandalini S, et al. NASPGHAN clinical report on the diagnosis and treatment of gluten‐related disorders. J Pediatr Gastroenterol Nutr. 2016;63(1):156‐165. 10.1097/MPG.0000000000001216 - DOI - PubMed
    1. Raiteri A, Granito A, Giamperoli A, Catenaro T, Negrini G, Tovoli F. Current guidelines for the management of celiac disease: a systematic review with comparative analysis. World J Gastroenterol. 2022;28(1):154‐176. 10.3748/wjg.v28.i1.154 - DOI - PMC - PubMed
    1. Husby S, Koletzko S, Korponay‐Szabó I, et al. European Society Paediatric Gastroenterology, Hepatology and Nutrition guidelines for diagnosing coeliac disease 2020. J Pediatr Gastroenterol Nutr. 2020;70(1):141‐156. 10.1097/MPG.0000000000002497 - DOI - PubMed

LinkOut - more resources