Living with coeliac disease: a grounded theory study

Area of Science:

• Psychology
• Gastroenterology
• Sociology

Background:

• Coeliac disease management necessitates a strict gluten-free diet, which is challenging and linked to psychological distress.
• Individuals with coeliac disease may experience depression, anxiety, and social phobia due to dietary limitations.

Purpose of the Study:

• To explore the lived experiences of adults with coeliac disease.
• To understand the psychosocial impact of adhering to a gluten-free diet.

Main Methods:

• Qualitative analysis of narratives from 130 adult members of Coeliac UK.
• Grounded theory methods were used to identify key themes in their experiences.

Main Results:

• A psychosocial model revealed 'changed identity' as central to living with coeliac disease.
• Participants experienced grief related to diet, identity, and social activities, which often lessened over time.
• Building a coeliac community helped individuals re-establish identity and gain social acceptance.

Conclusions:

• Gluten-free living significantly restricts food choices, impacting personal and social identities.
• Adjusting to these changes and fostering a sense of community are crucial for coping.
• Psychosocial interventions can support individuals in managing the challenges of coeliac disease.