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Experiences, Own Management and Beliefs regarding Residual Symptoms among People with Coeliac Disease
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping.
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.ORCID iD: 0000-0002-9606-3238
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Objective: To explore experiences and beliefs concerning residual symptoms despite a gluten-free diet in women and men with coeliac disease, with a focus on causes and management.

Background: Between 7% and 30% of people with coeliac disease suffer from residual symptoms, despite following a long-term gluten-free diet, and it has been proposed that women in particular, continue to experience such inconveniences. There is a lack of knowledge about own beliefs concerning the underlying causes of persistent symptoms among people with coeliac disease and their own management of these symptoms.

Methods: A qualitative explorative design with semi-structured interviews with 22 adults, 11 females and 11 males, with coeliac disease in Sweden. Data were analyzed using qualitative content analysis.

Results: The disease was continuing to have a substantial impact on the informants’ lives even after several years’ treatment. The interviews revealed residual symptoms of both a gastrointestinal and extra-intestinal nature, which were considered to influence their personality. The management of persistent symptoms resembled thorough detective work, and both efforts to find the missing puzzle piece and strategies to prevent problems were used. Beliefs about the underlying causes of these symptoms were bodily convictions and that it was impossible to live completely gluten-free.

Conclusion: People with treated coeliac disease, irrespective of gender, may experience residual symptoms of both a physical and psychological nature, causing major negative impacts on their lives in different ways. In the light of this, healthcare staff should change their practices regarding the follow-up of these people, and in addition to medical care should  provide guidance on management strategies to facilitate the daily life of these people. Furthermore, information to people who have just been diagnosed should make them aware of the possibility that they may come to experience continued symptoms, despite treatment.

Keyword [en]
Coeliac disease, chronic disease, content analysis, symptom experiences
National Category
Gastroenterology and Hepatology Clinical Medicine
Identifiers
URN: urn:nbn:se:liu:diva-122380OAI: oai:DiVA.org:liu-122380DiVA: diva2:866005
Available from: 2015-10-30 Created: 2015-10-30 Last updated: 2016-03-24Bibliographically approved

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Ring Jacobsson, LisaMilberg, AnnaHjelm, KatarinaFriedrichsen, Maria
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Division of Health, Activity and CareFaculty of Medicine and Health SciencesDepartment of Advanced Home Care in LinköpingCenter of Palliative Care
Gastroenterology and HepatologyClinical Medicine

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