Exploring Challenges Faced by Adults Living With Celiac Disease: A Food Literacy Perspective

Background

Coeliac disease (CD) is an autoimmune disorder treated with a gluten-free diet (GFD), requiring substantial changes in food choices and eating habits. This study explores the challenges faced by adults living with CD focusing on the theme of food literacy (FL), namely functional, relational, and system FL competencies.

Methodology

A secondary analysis of data obtained through an online questionnaire was conducted. Adults living with CD in Québec, Canada and subscribed to Coeliaque Québec's newsletter were invited to complete a questionnaire. Using the critical incident method, respondents described a negative experience in their journey living with CD. Content analysis was done in a deductive and inductive manner, based on the 2022 Slater Food Literacy framework adapted to CD.

Results

A total of 743 patients were included in the analysis. The qualitative analysis resulted in 11 codes under the three themes of FL. Patients reported challenges in finding reliable nutrition and medical information, managing a GFD in social settings, explaining CD and preventing gluten contamination, preparing balanced gluten-free (GF) meals, and making informed food choices. Patients reported on the negative impact of the GFD on their relationship with food, and how CD inhibits conviviality. Finally, patients addressed the need to advocate for GF food access in grocery stores and restaurants.

Conclusions

This study highlights the broad impacts of effectively managing CD and the GFD on patients’ functional, relational and system FL competencies. Future research should explore how social and economic factors further interact with FL competencies of adults living with CD.