OBJECTIVES: Accidental gluten exposure is common among adults with celiac disease (CeD) and can trigger multi-day symptomatic episodes that impair functioning and generate economic burden. National real-world estimates are limited, constraining value assessment of emerging adjunctive therapies. This study quantified the frequency, duration, productivity loss, financial strain, healthcare utilization, and behavioral restrictions associated with acute symptomatic gluten exposure among U.S. adults with self-reported biopsy-confirmed CeD.
METHODS: A national web-based survey was distributed to adults aged ≥18 years with self-reported biopsy-confirmed CeD who had followed a gluten-free diet for ≥12 months, lived in the United States, and experienced ≥1 acute symptomatic gluten-exposure episode in the prior 4 months. Participants were recruited through email and social media outreach. Outcomes included episode frequency and duration, impact on work and daily activities, healthcare utilization, direct and indirect financial burden, and avoidance behaviors between episodes.
RESULTS: Among 3,696 respondents, 2,001 met eligibility criteria, completed the survey, and reported acute or both acute and chronic symptoms. Acute symptomatic episodes were frequent: 22.8% experienced two to three episodes monthly, and 14.1% reported weekly or more frequent episodes. Duration and severity were meaningful, with 36.3% reporting three to four days of symptoms, 15.2% five to seven days, and 8.3% ≥8 days. Productivity loss was pronounced: 40.1% reported moderate impairment (1–2 day reduced function), 28.2% severe impairment (>2 days), and 9.8% required medical care. Financial burden was considerable, with 45.8% reporting moderate strain and 20.5% major economic consequences. Behavioral restrictions were widespread, as 79.4% avoided restaurants, travel, or social events due to perceived exposure risk.
CONCLUSIONS: Acute symptomatic gluten exposure imposes a substantial real-world functional, economic, and behavioral burden on adults with celiac disease. These findings highlight a clear unmet need and provide essential inputs for payer decision-making, economic modeling.