Ethel Kautto^1,, Cecilia Olsson², Anneli Ivarsson³, Phil Lyon⁴, Agneta Hörnell², Lena Alex⁵

From earlier studies, men diagnosed with celiac disease are known to be less troubled by their experiences of living with the disease than are diagnosed women. Previous studies, concentrating on men with celiac disease have been mostly quantitative, and have a bio-medical emphasis. The aim of this study was to explore the social experience of young men with screening-detected celiac disease and to highlight daily life situations five years after diagnosis. Seven young men, diagnosed with celiac disease when they were 13 years-olds through a large Swedish school-based celiac screening-study, were interviewed. The semi-structured interviews were analyzed from a gender perspective which resulted in three themes; being subjected to changes, striving for normality and emphasizing commitment. These were underpinned by several sub-themes. The young men dissociated themselves from being seen as a person with a life-long chronic disease. The analysis also showed that the young men’s daily experiences of living with celiac disease largely depended on their use of characteristics known to be associated with masculinity: such as being self-assured, demanding, and behaving authoritatively. In food situations, where the young men had the ability to make use of such characteristics in their informal group, they experienced fewer negative aspects of the disease. If the young men did not hold a strong position in their informal group, their situation was insecure and vulnerable and this could lead to avoidance of contacts and social meal situations.

celiac disease, young males, gender, masculinity, social norms