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An on-going gendered endeavour in silence: young women struggling with celiac disease
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]

Women with celiac disease are in the literature described as feeling exposed to negative emotions and experiences related to the treatment of celiac disease - the gluten-free diet. In order to explore the daily experiences of being diagnosed to celiac disease we interviewed seven Swedish young women diagnosed to celiac disease by screening in early adolescence. The semi structured interviews were analysed inductively by using content analysis. The analysis showed that the young women continued to strive with their treatment and their relations toward others, even years after diagnosis. The young women found themselves in an environment where their strict adherence to the dietary treatment was an obstacle and could prevent the feeling of connectedness. We argue that the emphasized/normative femininity that these young women relate to complicates their daily life diagnosed with celiac disease.

Keyword [en]
Compliance, gluten-free diet, gender, women’s issues, young adults
National Category
Other Social Sciences not elsewhere specified Respiratory Medicine and Allergy Health Sciences
Research subject
Food and Nutrition
Identifiers
URN: urn:nbn:se:umu:diva-85864OAI: oai:DiVA.org:umu-85864DiVA: diva2:695796
Available from: 2014-02-12 Created: 2014-02-12 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.
Keyword
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
Identifiers
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)
Opponent
Supervisors
Available from: 2014-02-28 Created: 2014-02-12 Last updated: 2015-11-04Bibliographically approved

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Kautto, EthelOlsson, CeciliaIvarsson, AnneliHörnell, AgnetaAlex, Lena
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Department of Food and NutritionUmeå Centre for Gender Studies (UCGS)Epidemiology and Global HealthDepartment of Nursing
Other Social Sciences not elsewhere specifiedRespiratory Medicine and AllergyHealth Sciences

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