Unmet medical needs in coeliac disease: consequences on adherence and costs

Background: A strict lifelong gluten-free diet (GFD) is the cornerstone for coeliac disease (CeD). However, maintaining long-term adherence and sustainable GFD management remains challenging due to a combination of individual, healthcare-related, and socioeconomic factors. This narrative review aims to synthesize evidence on the long-term GFD management in adults with CeD with particular focus on dietary adherence and economic aspects, to identify key challenges and opportunities for improving patient care. Methods: PubMed was searched for English-language publications from April 2016 to April 2026 with the following terms: "celiac disease", "management", "economic" and "adherence". Twenty-seven studies of adult CeD addressing the domains adherence patterns, the role of the dietitian, remote tools for monitoring and support, and costs and economic burden were included. A narrative, interpretative approach was used because of marked heterogeneity in designs, settings, and outcomes. Results: Adherence emerged as a dynamic and context-dependent outcome influenced by time since diagnosis, continuity of care, health literacy, emotional adjustment, social participation, food environments, and financial constraints. Self-reported adherence frequently differed from findings obtained with validated tools, serology, or detailed dietetic assessment. Specialist dietitians were central to identifying inadvertent gluten exposure, supporting nutritional adequacy, and translating recommendations into sustainable self-management, although evidence for specific service models was predominantly observational. Telemedicine and telephone-based follow-up may improve accessibility and support risk-stratified monitoring but should complement rather than replace specialist assessment. The economic burden extended beyond healthcare utilization to the higher cost and limited availability of gluten-free foods and to work impairment, with disproportionate effects on patients facing socioeconomic or clinical vulnerability. Conclusions: Long-term CeD management should move beyond a narrow focus on individual dietary adherence towards structured, equitable, and risk-stratified care. Early specialist dietetic input, multimodal assessment of adherence, hybrid follow-up pathways, and attention to affordability and work participation are likely to be important components. Prospective comparative studies using standardized outcomes and integrated economic evaluation are needed to determine which models deliver sustained clinical and patient-reported benefits.