Delay in Celiac Disease Diagnosis Among Patients with High-Risk Screening Conditions: Results from a United States Claims Database

Introduction: Celiac disease (CeD) incidence has risen in the past two decades, but delays in diagnosis continue. The aim of this study is to evaluate sociodemographic factors associated with time to diagnosis in individuals at high risk for CeD in the United States (US). Methods: We performed a retrospective analysis using a random 25% sample of US private payer health insurance claims from 2007 to 2022. Patients with preceding high-risk conditions for CeD, as defined by professional societies, were identified. From this cohort, patients with CeD (ages >1 year) were selected. Time to diagnosis was calculated from the date of the high-risk condition to the date of biopsy via endoscopy. Associations between time to diagnosis and covariates were evaluated using descriptive statistics, including mean with standard deviation (SD), t tests, ANOVA, and Tukey’s HSD tests where applicable. Results: We identified 9344 patients with CeD with a high-risk condition preceding diagnosis. The mean time to diagnosis was about 3 years (SD 36.8), with a median of 20.4 months (range < 1 month to 190.2 months). The mean time to diagnosis was longer in females by 3.7 months compared to males (p < 0.0001). The average time to diagnosis for older adults aged 61–100 years was 9 months longer than that for adults aged 21–60 years and 18 months longer than that for children (p < 0.0001). Differences in mean time to diagnosis also varied by race and region (p < 0.0001). Conclusions: Despite the presence of high-risk conditions that typically call for heightened screening, CeD diagnosis is frequently delayed for years. These findings highlight that enhancing awareness of CeD remains essential for promoting timely diagnosis, especially in vulnerable populations.