‘Controlled by food’– lived experiences of coeliac disease

Aim  The aim of this study was to explore the dilemmas experienced by women and men in their everyday lives in relation to their coeliac disease, and to explore the qualities of these dilemmas in relation to specific situations and living conditions.

Methods  We interviewed 43 informants, aged 20–40 years, using ‘The Critical Incident Technique’. Interviews focused on situations that gave rise to confusion or discomfort in relation to disease. The interviews were transcribed verbatim and analysed qualitatively.

Results  We found 195 dilemmas, experienced in five arenas: food situation at work, during purchases, when travelling, in relation to meals at home and meals outside the home. Emotions, relationships and the management of daily life were the three main categories of dilemmas that emerged through the analysis. Specific emotions were experienced in relation to the disease, such as isolation, shame, fear of becoming contaminated by gluten and worries about being a bother. In the relationship with other persons the informants experienced a number of complicating dilemmas such as unwanted visibility, neglect, being forgotten, disclosure avoidance and risk taking. Dilemmas related to the management of daily life were restricted product choice, double work and constantly being on call.

Conclusions  The lived experiences of coeliac disease were more varied and profound than expected. It is important to take psychological and social aspects into account in the treatment of patients with coeliac disease.