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    Perceptions of Quality of Life in Men and Women with Celiac Disease


    Scott Adams


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    Scand J Caring Sci. 2003 Sep;17(3):301-7

    Celiac.com 09/03/2003 - A recent study published in the Scandinavian Journal of Caring Sciences looked at the differences in how men and women cope with celiac disease. The study concludes that gender should be taken into account in the treatment of celiac disease to improve its outcome. The biggest flaw in this study is with the number of people in it—only 10. I think that it is difficult to draw such conclusions using such a small sample of people, and that a larger study of this type needs to be done to draw more solid conclusions. Additionally, the poorer outcome for women in this study may be due to the fact that they experienced more bowel-related symptoms than did the men, which may not be due at all to their "emotionally oriented strategy" of coping. It could just be a fact that women with celiac disease experience more real health problems than men, which is also in need of further study. - Scott Adams

    Here is the abstract:

    "Perceptions of health-related quality of life of men and women living with coeliac disease."

    Hallert C, Sandlund O, Broqvist M.

    Coeliac Centre, Faculty of Health Sciences, Linkoping University, Linkoping, Sweden.

    "Women with long-standing coeliac disease express poorer health-related quality of life (HRQoL) than men do for unclear reasons. This led us to explore differences in their understanding of HRQoL using a phenomenographic approach. We interviewed 10 coeliac subjects (mean age 57 years, range 35-73) who had been on a gluten-free diet for 10 years and had scored either high or low in the Short Form 36 Health Survey (SF-36) General Health and Vitality scales. Three dimensions were revealed that pertained to their perception of HRQoL: bodily sensations, social consequences and coping strategies. Within these, the women experienced more bowel symptoms than men did, despite keeping to a strict diet. This item was the only one predicting the SF-36 scores. The women also described more distress caused by the restrictions in daily life, closely related to their controlling of food contents. The coeliac men took advantage of using a problem-oriented coping approach while the women seeking an emotionally oriented strategy showed less satisfaction with the outcome. We conclude that the intriguing difference in HRQoL between coeliac men and women may have some of its origin in the way living with the disorder is conceptualized and coped with. The results imply that in the management of coeliac patients, gender-related aspects need to be taken into account to improve treatment outcome."

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  • About Me

    In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I founded The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.

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    Scott Adams
    The following Medline abstract describes a unique study that was done on the quality of life of two groups of people with celiac disease: One that was diagnosed as the result of having symptoms, and the other which had little or no symptoms and whose diagnosis was reached via screen-detection. Both groups were treated for one year with a gluten-free diet, and were then studied to determine their overall response, including their psychological response. Here is the abstract:
    Eff Clin Pract 2002 May-Jun;5(3):105-13
    Mustalahti K, Lohiniemi S, Collin P, Vuolteenaho N, Laippala P, Maki M.
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    CONTEXT: Since the advent of serologic testing for celiac disease, most persons who receive a diagnosis of celiac disease have few or no symptoms. Although pathologic changes of celiac disease resolve on a gluten-free diet, how a gluten-free diet affects the quality of life for patients with screen-detected celiac disease is unclear.
    OBJECTIVE: To evaluate the effect of a gluten-free diet on the quality of life of patients with screen-detected celiac disease.
    DESIGN: Prospective study of patients before and 1 year after initiating a gluten-free diet.
    PARTICIPANTS: 19 patients with screen-detected celiac disease (found by serologically testing first-degree relatives of celiac patients) and 21 consecutive patients with symptom-detected disease. In all cases, celiac diagnosis was confirmed by finding villous atrophy and crypt hyperplasia on small-bowel biopsy.
    INTERVENTION: Gluten-free diet (explained during a single physician visit). MAIN OUTCOME
    MEASURES: Gastrointestinal Symptoms Rating Scale (GSRS), in which scores range from 0 to 6 (higher scores represent worse symptoms); and quality of life measured with the Psychological General Well-Being Questionnaire (PGWB). Scores range from 22 to 132 (higher scores mean greater well-being).
    RESULTS: At baseline, patients with symptom-detected celiac disease had poorer quality of life and more gastrointestinal symptoms than those with screen-detected celiac disease. Reported compliance with the gluten-free diet was good. All mucosal lesions of the small bowel had resolved at the follow-up biopsy. After 1 year of following the diet, quality of life for patients with screen-detected disease significantly improved (mean PGWB score increased from 108 to 114; P
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    Scott Adams
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    Here is the abstract:


    Am J Gastroenterol. 2003 Sep;98(9):2023-6.
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