Disability and Health Care Interactions in Patients with Celiac Disease in the United States

BACKGROUNDS AND AIMS: Celiac disease (CeD) presents with various gastrointestinal and systemic comorbidities, causing significant social and health burdens. Given the substantial symptom burden and lack of therapeutic options beyond the gluten-free diet, patients with CeD may have limited or unsatisfying interactions with healthcare providers. METHODS: Using the All of Us Research Program, we analyzed five categories of surveys: basic, lifestyle, overall health, social factors of health, and healthcare access and utilization, for participants with self-reported or electronic health records-documented CeD. To increase diagnostic accuracy, we excluded CeD patients without compatible HLA haplotypes or with a polygenic risk score associated with a low probability of CeD. Each patient with CeD was matched to cohort participants without CeD using the following matching parameters: age, genetically inferred ancestry, and sex. RESULTS: Individuals with CeD (n=1816) were more likely to report severe fatigue (12.0% vs. 8.4%), frequent specialist visits (≥13 per year: 6.6% vs. 4.3%), and negative interactions with healthcare. On multivariate logistic regression, the following symptoms and healthcare interactions were independently associated with CeD: fatigue severity (OR=1.19, 95% CI [1.11-1.27]), more frequent medical specialist visits OR=1.69, 95% CI: 1.51-1.90, and negative provider interactions were all positively associated with increased likelihood of CeD. CONCLUSIONS: Participants with CeD reported significantly greater functional limitations, higher difficulty assessing care, and a higher degree of fatigue, compared to participants without CeD, underscoring the need to integrate social determinants of health and patient-reported experiences into clinical management.