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  • 1.
    Kautto, Ethel
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap. Umeå universitet, Samhällsvetenskapliga fakulteten, Umeå centrum för genusstudier (UCGS).
    Is it the gluten-free diet that matters the most?: Food, gender and celiac disease2014Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
    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.

  • 2.
    Kautto, Ethel
    et al.
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap. Umeå universitet, Samhällsvetenskapliga fakulteten, Umeå centrum för genusstudier (UCGS).
    Ivarsson, Anneli
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Epidemiologi och global hälsa.
    Norström, Fredrik
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Epidemiologi och global hälsa.
    Högberg, L
    Division of Pediatrics, Department of Clinical and Experimental Medicine, Faculty of Health Science, Linköping University, Linköping, Sweden and Department of Pediatrics in Norrköping, County Council of Östergötland, Norrköping, Sweden.
    Carlsson, A
    Department of Pediatrics, SUS University Hospital, Lund University, Lund, Sweden.
    Hörnell, Agneta
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap.
    Nutrient intake in adolescent girls and boys diagnosed with coeliac disease at an early age is mostly comparable to their non-coeliac contemporaries2014Ingår i: Journal of human nutrition and dietetics (Print), ISSN 0952-3871, E-ISSN 1365-277X, Vol. 27, nr 1, s. 41-53Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: Food habits, nutrient needs and intakes differ between males and females, although few nutritional studies on patients with coeliac disease (CD) have reported results stratified by gender.

    OBJECTIVES: To compare energy and nutrient intakes among 13-year olds diagnosed with CD in early childhood with those of a non-coeliac (NC) age- and gender-matched control group, and also with estimated average requirements (EAR).

    METHODS: A case-control study was conducted in Sweden 2006-2007 within the coeliac screening study ETICS (Exploring The Iceberg of Coeliacs in Sweden). Dietary intake was assessed among 37 adolescents (23 girls) diagnosed with CD at median age 1.7 years (CD group) and 805 (430 girls) NC controls (NC group) using a food-frequency questionnaire covering 4 weeks. Reported energy intake was validated by comparison with the calculated physical activity level (PAL).

    RESULTS: Regardless of CD status, most adolescents reported an intake above EAR for most nutrients. However, both groups had a low intake of vitamin C, with 13% in the CD-group and 25% in the NC-group below EAR, and 21% of boys in the CD-group below EAR for thiamine. The intake of fatty acids was unbalanced, with a high intake of saturated and a low intake of unsaturated fats. Girls and boys in the CD-group had an overall lower nutrient density in reported food intake compared to girls and boys in the NC-group.

    CONCLUSIONS: Nutrient intake of adolescent girls and boys with CD was mostly comparable to intakes of NC controls. Dietitians should take the opportunity to reinforce a generally healthy diet when providing information about the gluten-free diet.

  • 3.
    Kautto, Ethel
    et al.
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap. Umeå universitet, Samhällsvetenskapliga fakulteten, Umeå centrum för genusstudier (UCGS).
    Olsson, Cecilia
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap.
    Ivarsson, Anneli
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Epidemiologi och global hälsa.
    Hörnell, Agneta
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap.
    Alex, Lena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    An on-going gendered endeavour in silence: young women struggling with celiac diseaseManuskript (preprint) (Övrigt vetenskapligt)
    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.

  • 4.
    Kautto, Ethel
    et al.
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap. Umeå universitet, Samhällsvetenskapliga fakulteten, Umeå centrum för genusstudier (UCGS).
    Olsson, Cecilia
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap.
    Ivarsson, Anneli
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Epidemiologi och global hälsa.
    Hörnell, Agneta
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap.
    Aléx, Lena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Living with celiac disease seen from a male perspectiveManuskript (preprint) (Övrigt vetenskapligt)
    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.

  • 5.
    Kautto, Ethel
    et al.
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap. Umeå universitet, Samhällsvetenskapliga fakulteten, Umeå centrum för genusstudier (UCGS).
    Olsson, Cecilia
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap.
    Ivarsson, Anneli
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Epidemiologi och global hälsa.
    Lyon, Phil
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap.
    Hörnell, Agneta
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap.
    Alex, Lena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Living with celiac disease: norms of femininity and the complications of everyday life2017Ingår i: International Journal of Celiac Disease, ISSN 2334-3427, Vol. 5, nr 3, s. 115-124Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Women with celiac disease are often described as being exposed to negative emotions and experiences related to the treatment of celiac disease, the gluten-free diet. To explore the daily consequences of diagnosis and their daily experiences of living with celiac disease, interviews were conducted with seven Swedish young women who had been diagnosed with celiac disease by screening in early adolescence. The semi-structured interview transcripts were content analysed using a gender perspective. The analysis showed that these young women`s daily experiences were coloured by the conjunction of their dietary treatment, their social relationships, and social norms. This means that recurrent food situations often clash with the normative constructions of femininity and social norms of eating with an adverse effect on dietary compliance.

  • 6.
    Kautto, Ethel
    et al.
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap. Umeå universitet, Samhällsvetenskapliga fakulteten, Umeå centrum för genusstudier (UCGS).
    Olsson, Cecilia
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap.
    Ivarsson, Anneli
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Epidemiologi och global hälsa.
    Lyon, Phil
    School of Arts, Social Sciences and Management, Queen Margaret University, UK.
    Hörnell, Agneta
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap.
    Alex, Lena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Seeking a new normality: masculinity, interaction and a gluten free diet2016Ingår i: International Journal of Celiac Disease, ISSN 2334-3486, Vol. 4, nr 4, s. 138-145Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    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.

  • 7.
    Kautto, Ethel
    et al.
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap. Umeå universitet, Samhällsvetenskapliga fakulteten, Umeå centrum för genusstudier (UCGS).
    Rydén, Petra
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap.
    Ivarsson, Anneli
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Epidemiologi och global hälsa.
    Olsson, Cecilia
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap.
    Norström, Fredrik
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Epidemiologi och global hälsa.
    Högberg, Lotta
    Carlsson, Annelie
    Hagfors, Linda
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap.
    Hörnell, Agneta
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap.
    What happens to food choices when a gluten-free diet is required?: A prospective longitudinal population-based study among Swedish adolescent with coeliac disease and their peers2014Ingår i: Journal of Nutritional Science, ISSN 2048-6790, E-ISSN 2048-6790, Vol. 3, nr e2Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    A dietary survey was performed during a large screening study in Sweden among 13-year-old adolescents. The aim was to study how the intake of food groups was affected by a screening-detected diagnosis of celiac disease (CD) and its gluten-free (GF) treatment. Food intake, was reported using a food frequency questionnaires (FFQ) and intake reported by the adolescents who was screened to CD was compared with the intake of two same-aged referent groups: i) adolescents diagnosed to CD prior screening and ii) adolescents without CD.. The food intake groups were measured at baseline before the screening-detected cases were aware of their CD, and 12-18 months later.

    The result showed that the food intakes are affected by a screen detected CD and its dietary treatment. Many flour-based foods were reduced such as pizza, fish fingers, and pastries. The result also indicated that the bread intake was lower before the screened diagnosis compared to the other studied groups, but increased afterwards. Specially manufactured GF-products (e.g. pasta and bread) were frequently used in the screened CDgroup after changing to a GF-diet. Our results suggest that changing to a GF-diet reduces the intake of some popular foods, and the ingredients on the plate are altered, but this do not necessarily include a change of food groups. The availability of manufactured GF-replacement products makes it possible for adolescents to keep many of their old food habits when diagnosed with CD in Sweden.

  • 8.
    Rydén, Petra
    et al.
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap.
    Kautto, Ethel
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap.
    Ivarsson, Anneli
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin.
    Olsson, Cecilia
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap.
    Norström, Fredrik
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin.
    Högberg, L
    Department of Clinical and Molecular Medicine, Linköping University.
    Carlsson, A
    Department of Pediatrics, Lund University.
    Hagfors, Linda
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap.
    Hörnell, Agneta
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för kostvetenskap.
    What happens with the healthiness of the diet among Swedish adolescent  boys and girls when a gluten-free diet is required?Manuskript (preprint) (Övrigt vetenskapligt)
    Abstract [en]

    Objectives To explore how diagnosis of celiac disease (CD) in early adolescence affects overall food intake and healthiness of the diet in comparison with age- and sex matched controls and children with CD diagnosed in early childhood.

    Methods This is a longitudinal dietary sub-study of a school-based CD-screening of 12-year-olds (ETICS - Exploring the Iceberg of Coeliacs in Sweden), a part of the PreventCD project. The dietary study was conducted in 2005-2008 and included the following groups resulting from the screening: I) screening-detected CD cases (n=80), II) previously diagnosed CD cases (n=28), and III) two samples of age- and sex matched non-CD children (admission, n=619; follow-up, n=447). All CD cases completed two food-frequency-and-amount-questionnaires (FFQ), covering the previous four weeks; one at admission and one at a follow-up 18-24 months later. The screening-detected CD cases completed the first FFQ before a gluten free diet was initiated. The non-CD children consisted of a cross-sectional sample at each time point, and thus only completed one FFQ each (i.e. either at admission or follow-up). The Goldberg cut-off method was used to validate reported energy intake. The food choices at admission and follow-up were compared among the three groups, and the healthiness of the diet evaluated using two Swedish dietary indexes.

    Results and Conclusion Intakes of most food groups were similar at baseline. The adolescents diagnosed with CD did only minor changes in their overall food choices. Visible changes were reductions within food groups where gluten-free alternatives are not readily available, such as pastries and pizza. In contrast, total intake of bread and pasta did not change. All three groups scored fairly low on the dietary indexes at both time points, and there is an obvious need to improve the healthiness of the adolescent diet, whether CD is present or not.

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  • en-US
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