Abstract
BackgroundCoeliac disease (CD) is an immune-mediated enteropathy against dietary gluten. The treatment for CD is a strict life-long gluten-free (GF) diet, which has a profound effect on a person’s life. In recent years, there has been an increase in the availability of gluten-free products. This study investigates how people with CD experience and manage a GF diet.MethodsSemi-structured, individual interviews were conducted in different areas of Norway. The analysis was guided by Interpretative Phenomenological Analysis. Participants with CD (n = 12) varied in terms of gender, age, family composition and time since diagnosed.ResultsThe analysis revealed challenges for a GF diet at the individual, interpersonal, community and policy levels. At the individual level, the participants explained that it took time to gain knowledge about a GF diet, and they expressed uncertainty about the healthiness of a GF diet. At the interpersonal level, the feeling of being different and the fear of gluten contamination were barriers to the enjoyment of social meals. At the community level, the participants asked for a wider selection of tastier GF products to purchase and increased knowledge about CD among those who prepare and sell GF foods. At the policy level, the participants asked for political action to make GF products more affordable.ConclusionsThis study indicates that people with CD should be given information about how to manage a GF diet right after being diagnosed with CD. The food industry should be encouraged to produce healthy and tasty GF products.
Highlights
Coeliac disease (CD) is an immune-mediated enteropathy against dietary gluten
A qualitative study among 17 adults diagnosed with CD in Canada concluded that the sole medical recommendation of a GF diet fails to acknowledge the difficulties those with CD can endure in the current GF landscape [7]
A casecontrol study in the United Kingdom showed that quality of life in persons with CD is determined by the perceived degree of difficulty adhering to a GF diet [14]
Summary
Coeliac disease (CD) is an immune-mediated enteropathy against dietary gluten. Coeliac disease (CD) is an immune-mediated enteropathy against dietary gluten present in wheat, rye and barley [1]. People living with CD often experience a lower quality of life compared to the general population [13]. A casecontrol study in the United Kingdom showed that quality of life in persons with CD is determined by the perceived degree of difficulty adhering to a GF diet [14]. A qualitative study among 43 informants in Sweden identified dilemmas for persons with CD in five arenas: the food situation at work, during purchases, when travelling, in relation to meals at home and when eating meals outside the house [15]. In-depth interviews with 10 families in the United States identified social isolation and misunderstandings about CD as the most significant barriers to GF diet adherence [17]
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