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Living with celiac disease seen from a male perspective
Umeå University, Faculty of Social Sciences, Department of Food and Nutrition. Umeå University, Faculty of Social Sciences, Umeå Centre for Gender Studies (UCGS).
Umeå University, Faculty of Social Sciences, Department of Food and Nutrition.ORCID iD: 0000-0002-3731-6565
Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.ORCID iD: 0000-0001-8944-2558
Umeå University, Faculty of Social Sciences, Department of Food and Nutrition.ORCID iD: 0000-0002-5464-5686
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(English)Manuscript (preprint) (Other academic)
Abstract [en]

Men diagnosed with celiac disease are in earlier scientific studies known to be less troubled by their experiences of living with disease than women with celiac disease. Previous studies, concentrating on men with celiac disease have been mostly quantitative, and the studies has dealt with physiology and pathology. The aim of this study was to give voice to young men with screening-detected celiac disease and to highlight the situations that they encounter in their daily lives five years after the screening. Seven Swedish young men were interviewed. They had been diagnosed with celiac disease as 12-13 years-olds through a large Swedish school based celiac screening-study. The semi-structured interviews were analyzed from a gender perspective using content analysis. The findings resulted in a main theme, conquering the disease and becoming a man, which was underpinned by several themes and sub-themes. The analysis showed that the young men’s experiences of living with celiac disease in their daily life, largely depended on their use of characteristics known to be in accordance with dominating masculinity; such as being self-assured, demanding, and behaving authoritative. In food situations, when the young men had the ability to make use of such characteristics in their informal group, they experienced much less negative aspects of the disease. If the young men did not have a position in their informal group where they could develop those features, their situation was expressed as being tough, they were bullied and withdrew from social meals. It seemed important for the young men to dissociate themselves from being seen as a person who had a life-long chronic disease.

National Category
Other Social Sciences not elsewhere specified
Research subject
Food and Nutrition
URN: urn:nbn:se:umu:diva-86021OAI: diva2:696965
Available from: 2014-02-17 Created: 2014-02-14 Last updated: 2015-11-04Bibliographically approved
In thesis
1. Is it the gluten-free diet that matters the most?: Food, gender and celiac disease
Open this publication in new window or tab >>Is it the gluten-free diet that matters the most?: Food, gender and celiac disease
2014 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: The only treatment for celiac disease consists of excluding gluten. Gluten is a protein complex found in wheat, rye, and barley, which are cereals commonly used in bread, pasta, pizza, etc. The overall aims of this thesis were to study; what happens with food choices and nutrient intakes when individuals are prescribed a gluten-free diet and what consequences this has on the everyday lives of young women and young men dealing with this disease.

Methods: A food frequency questionnaire (FFQ) was used to study nutrient intake and how food choices were affected after a change to a gluten-free diet. The FFQ was sent to 12-13 years-old adolescents who took part in a large Swedish celiac screening study. The following three groups were studied: previously diagnosed with celiac disease, screening-diagnosed and non-celiac controls. The first FFQ was sent out before the screening-diagnosed adolescents had been told they had celiac disease, and the second was sent 12-18 months after they had been prescribed the gluten-free treatment. Semi-structured interviews were performed five years later in order to study how everyday life was affected by celiac disease in seven young women and seven young men. The interviews were analyzed by content analysis.

Results: The previously diagnosed celiac disease group reported a nutrient intake in line with the non-celiac control group. Most of the participants reported nutrient intakes above the estimated average requirements. A diagnosis of celiac disease altered the intake of some foods, and this was shown by comparing the results from the baseline FFQ before the diagnosis and the follow-up FFQ after. The young women and young men reported similar experiences of the gluten-free food, but the perceived consequences of living with celiac disease differed between genders.

Conclusion: This thesis shows that after a diagnosis of celiac disease food changes are necessary in order to be compliant with the gluten-free diet. One common effect is that food options will be reduced. However, as long the food intake is gluten-free, varied, and in sufficient quantity there is no reason to worry more about the nutritional intake of adolescents diagnosed with celiac disease than there is for their non-celiac peers. The findings in this thesis also show that society’s gender order has a great impact on how young women and young men experience their everyday lives, with celiac disease, and with the gluten-free diet.

Place, publisher, year, edition, pages
Umeå: Umeå University, 2014. 76 p.
celiac disease, gluten-free diet, gender, dietary assessment, adolescents, qualitative interviews
National Category
Other Social Sciences not elsewhere specified Nutrition and Dietetics
Research subject
Food and Nutrition
urn:nbn:se:umu:diva-85866 (URN)978-91-7601-014-3 (ISBN)
Public defence
2014-03-21, Hörsal D, Samhällsvetarhuset, Umeå universitet, Umeå, 13:00 (Swedish)
Available from: 2014-02-28 Created: 2014-02-12 Last updated: 2015-11-04Bibliographically approved

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Kautto, EthelOlsson, CeciliaIvarsson, AnneliHörnell, AgnetaAléx, Lena
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Department of Food and NutritionUmeå Centre for Gender Studies (UCGS)Epidemiology and Global HealthDepartment of Nursing
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