Prevalence of Diagnosed Celiac Disease and Associated Conditions in the United States between 2012-2017: Results from a National Electronic Patient Database

Daniel Burke Karb, Emad Mansoor, Sravanthi Parasa, Gregory S. Cooper


Background: Celiac Disease (CD) is an autoimmune condition caused by the ingestion of gluten in genetically susceptible individuals. Previous screening studies of CD have shown wide-ranging prevalence estimates. We sought to describe the prevalence of diagnosed CD in the United States (US) using a large, electronic, population-based database, and identify associated conditions of interest.

Methods: From a large commercial database (Explorys), we identified a cohort of patients with CD between April 2012 and April 2017, based on Systematized Nomenclature of Medicine-Clinical Terms (SNOMED-CT). From this cohort, we calculated the prevalence of CD and were able to identify associations between CD cases and other conditions.

Results: Of the 35,854,260 individuals in the database, we identified 83,090 cases of CD, with an overall prevalence of 231.7/100,000 persons (0.23%). Prevalence was higher in females than males [odds ratio (OR) 2.40; 95% Confidence Interval (CI) 2.36-2.43, p < 0.0001], whites versus non-whites (OR 2.25; 95% CI 2.20-2.30, p < 0.0001) and adults (≥ 18 years) versus children (< 18) (OR) 2.60; 95% CI 2.53-2.67, p < 0.0001). CD was found to be associated with many other medical conditions.

Conclusions: In this large study, we found that the estimated prevalence of diagnosed CD in the USA is considerably lower than previous screening estimates, suggesting a large burden of undiagnosed CD. We were also able to identify strong associations between CD and many other medical conditions.


Celiac disease; Prevalence; Epidemiology; Explorys; Electronic database; SNOMED; EMR

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