Living with coeliac disease: a grounded theory study

Background
Coeliac disease can be controlled only through adherence to a gluten-free diet. This diet is highly restrictive and can be challenging to maintain. It has been linked with elevated levels of psychological distress, including depression, anxiety and social phobia.

Methods
Narratives on living with coeliac disease were written by 130 adult members of Coeliac UK (mean age 52.7 years; mean time since diagnosis 10.2 years; 67% sample female; 28% male). Qualitative analysis using grounded theory methods identified five key categories: living with widespread ignorance; social invisibility; creating a coeliac community; a changed identity; grief – and accepting the trade-off.

Results
A psychosocial model of living with coeliac disease was constructed from the findings, the central category of which was the changed identity of those diagnosed with the condition. Grief was experienced in relation to a loss of the former diet, changed personal and social identities, loss of social confidence and loss of social activities. Grief was generally mitigated over time as adjustments were made to changes in identity and lifestyle. Creating (or becoming part of) a coeliac community was a strategy enabling those with coeliac disease to re-establish their identities and increase social recognition and acceptance of the condition.

Conclusions
Gluten-free living entails a substantial restriction of food choice. The losses and changes entailed impact on the personal and social identities of those living with coeliac disease, and on the behaviour of others towards them. Psychosocial interventions focussed on facilitating coping and adjustment may benefit those experiencing difficulties.