Illness beliefs among people living with treated coeliac disease

BACKGROUND: Evidence suggests that many people with coeliac disease (CD) suffer from continuing illness despite following a strict gluten-free diet. Beliefs affect how people experience and manage their residual symptoms. Illness beliefs therefore provide a useful framework for understanding these problems. AIM: To explore illness beliefs among people living with treated coeliac disease. METHODS: The design was qualitative descriptive with semi-structured interviews including 22 adults with coeliac disease. Data were analysed with qualitative content analysis. The study follows the ethical guidelines given in the Declaration of Helsinki and was approved by the local ethical committee (DN 2014/92-31). FINDING: The source of experienced continuing illness, despite following a gluten-free diet, was believed to be a bodily imbalance affecting participants' lives in many ways, both private and in contact with the health services. Due to a feeling of exhaustion and lack of energy, this imbalance had prevented them from participating in school, work life and social activities. Since the participants had often been ill for many years before diagnosis, they believed their intestine to be so damaged that it was no longer possible to achieve a bodily balance. CONCLUSIONS: Illness beliefs in people diagnosed and treated for CD showed that they explained various continuing conditions, physiological and/or psychological, by a bodily imbalance, originally caused by the CD. By uncovering these illness beliefs, the possibility of finding an adequate and facilitative strategy grows stronger.