Illness beliefs among people living with treated coeliac disease

Abstract

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.

The psychosocial experiences of adults diagnosed with coeliac disease: a qualitative evidence synthesis

“…Table 3 presents the key characteristics of the 17 included articles [24][25][26][27][28][29][30][31][32][33][34][35][36][37][38][39][40]. Two pairs of articles are drawn from the same original studies: Jacobsson et al [27] and Ring Jacobsson et al [33], and Sverker et al [39] and Sverker et al [38]. Publication dates ranged from 2005-2021, with the majority (70%) published during or after 2015.…”

“…Despite maintaining a gluten-free diet, adults worried about the health risks associated with Coeliac Disease [24,25,27,29,30,[32][33][34][35][36][37][38][39][40]. Risks included damage incurred prediagnosis, ongoing symptoms, associated conditions, and heritability.…”

“…Many participants reconstructed their personal history postdiagnosis [25,26,32,33,35,40] and were often relieved to know coeliac disease had caused their symptoms. Some hypothesised about the cause of coeliac disease.…”

“…And I understood that later (after diagnosis), that you can get gluten intolerance from shift work." [33]. Some participants adopted an illness-based identity, while others felt their diagnosis had little or no impact on their identity (e.g.…”

“…Authors' confidence in the findings ranged from moderate-high (Table 6). Two pairs of papers report data from the same primary studies, these being Sverker et al [38] and Sverker et al [39]; and Jacobsson et al [27] and Ring Jacobsson et al [33]. The authors acknowledged this overlap and did not disproportionately apply data from these studies to any theme (Table 6).…”