Living with coeliac disease in unsupportive systems: a qualitative study of women's free-text narratives

Coeliac disease requires lifelong dietary management that extends beyond biomedical treatment and profoundly shapes everyday life across social, emotional, and structural domains.

To explore how women living with coeliac disease describe the everyday experience of managing the condition using large-scale free-text narratives.

Qualitative descriptive study.

Free-text responses were drawn from a large national survey conducted in Spain of 310 women aged 18-65 years with a medical diagnosis of coeliac disease confirmed by a gastroenterologist. Data were analyzed using reflexive thematic analysis, focusing on recurring patterns of meaning across narratives rather than individual trajectories, consistent with the nature of open-ended survey data.

Four interrelated themes were identified. Home was described as a space of safety, while public and social food environments were experienced as sites of vulnerability. Everyday management was characterized by constant vigilance and emotional exhaustion driven by fear of gluten contamination. Social restriction, stigma, and feeling like a burden shaped relationships and participation. Economic burden, limited institutional support, and difficulties navigating food and social environments perceived as insufficiently protective of women with coeliac disease further compounded daily management, with food frequently framed as a form of treatment lacking adequate systemic backing.

Coeliac disease was experienced by women as sustained everyday work embedded in ongoing social negotiation and structural constraints, underscoring the potential need for more supportive social, food service, and healthcare systems. We have highlighted the need for nursing and health service responses that move beyond dietary instruction to address psychosocial burden, risk management in social eating contexts, and structural sources of inequity.