What Do Patients with Celiac Disease Miss the Most Since Starting a Gluten-Free Diet? A Multicenter International Online Survey of Patients and Physicians

Background: The gluten-free diet (GFD) remains the cornerstone of treatment for celiac disease (CeD), yet it is associated with a substantial psychosocial and practical burden. As novel therapies are being developed, understanding patient priorities, and their alignment with physician perceptions, is essential to guide future therapeutic strategies. Methods: We conducted a multicenter, cross-sectional online survey of adults with confirmed CeD followed at tertiary referral centers in Italy (Salerno), the UK (Sheffield) and Malta (La Valletta). The questionnaire collected demographic data, a 0–10 visual analogue scale (VAS) assessing self-reported adherence to the GFD, and responses to a single-choice question exploring what participants missed most since starting the GFD. A parallel survey was administered to healthcare providers to assess their perception of patients’ unmet needs. Descriptive statistics and between-groups comparisons were performed. Results: A total of 486 patients (74.7% female; mean age 43.2 years; 215 from Italy, 196 from the UK and 75 from Malta) and 134 physicians were included. GFD adherence was high, with a median score of 10. The most frequently reported unmet need among patients was the desire for an unrestricted diet (25.9%), followed by a preference for a medication allowing occasional gluten exposure (16.9%), greater availability of gluten-free options during travel (15.0%), and improved safety when eating out (13.6%). Interest in a lifelong pharmacological alternative to the GFD was limited (9.5%). Despite minor differences in the distribution of responses across centers, the overall pattern of patient priorities was remarkably consistent. Among 134 physicians (76 (56.7% from the United Kingdom, 20 (14.9%) from Malta, and 38 (28.4%) from Italy)), the most frequently perceived patient need was also an unrestricted diet (17.9%), but a higher proportion attributed importance to lifelong pharmacological therapy (16.4%). The distribution of responses differed significantly between patients and physicians (χ2 test, p < 0.001). Conclusions: Patients with CeD across different European healthcare systems report consistent unmet needs driven primarily by lifestyle constraints and the burden of maintaining a strict GFD. Importantly, most patients do not seek complete replacement of the GFD, but rather strategies that provide greater flexibility and protection against occasional gluten exposure. A significant mismatch exists between patient priorities and physician perceptions, with clinicians overestimating the demand for a definitive cure and underestimating the importance of day-to-day disease burden. Future efforts should improve GFD practicality and prevent accidental gluten exposure, while an unrestricted diet remains the ultimate therapeutic goal.