Living with coeliac disease and a gluten-free diet: A Canadian perspective

Canadian Celiac Association, Professional Advisory Board, Mississauga, ON, Canada.
Journal of Human Nutrition and Dietetics (Impact Factor: 1.99). 11/2012; 26(1). DOI: 10.1111/j.1365-277X.2012.01288.x
Source: PubMed


Strict adherence to a gluten-free diet is the only treatment for coeliac disease. The gluten-free diet is complex, costly and impacts on all activities involving food, making it difficult to maintain for a lifetime. The purpose of this cross-sectional study was to evaluate the difficulties experienced, the strategies used and the emotional impact of following a gluten-free diet among Canadians with coeliac disease.

A questionnaire was mailed to all members (n = 10 693) of both the Canadian Celiac Association and the Fondation québécoise de la maladie cœliaque in 2008.

The overall response rate was 72%. Results are presented for the 5912 respondents (≥18 years) reporting biopsy-confirmed coeliac disease and/or dermatitis herpetiformis. Two-thirds never intentionally consumed gluten. Women reported significantly greater emotional responses to a gluten-free diet but, with time, were more accepting of it than men. Difficulties and negative emotions were experienced less frequently by those on the diet for >5 years, although food labelling and eating away from home remained very problematic. Frustration and isolation because of the diet were the most common negative emotions experienced.

The present study quantifies the difficulties experienced, the strategies used and the emotional impact of following a gluten-free diet. It highlights the need to improve the training and education of dietitians, other health providers and the food service industry workers about coeliac disease and a gluten-free diet, with the aim of better helping individuals improve their adherence to a gluten-free diet and their quality of life.

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    • "Common activities such as shopping for food and dining with friends may change from being simple, to complicated, constrictive and costly (Zarkadas et al., 2013). While studies have demonstrated that individuals with coeliac disease generally possess good knowledge of their condition and its treatment, and strong beliefs in the importance of strict gluten-free diet adherence, adherence to the glutenfree diet is nonetheless highly variable (Black & Orfila, 2011; Hall, Rubin, & Charnock, 2009, 2013; Zarkadas et al., 2013). Significant research attention has been directed towards determining the factors that are associated with gluten-free diet adherence, with a systematic review of such studies conducted by Hall et al. (2009) having identified a range of cognitive, sociocultural and emotional factors. "
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    ABSTRACT: Objective: The aim of this study was to explore the mediating and moderating relationships between emotional perceptions of coeliac disease, negative emotional states, emotion regulation, emotional eating and gluten-free diet adherence. Method: Adults with coeliac disease (N = 253) were recruited from state organisations of Coeliac Australia and completed an online questionnaire measuring illness perceptions, emotion regulation strategies, negative emotional states, emotional eating and gluten-free diet adherence. Results: Participants' levels of depression and anxiety, but not stress or emotional eating, were associated with gluten-free diet adherence. Emotional perception of coeliac disease was also associated with gluten-free diet adherence, and this relationship was partially mediated by depression and anxiety. Furthermore, the emotion regulation strategies of cognitive reappraisal and expressive suppression moderated the relationship between emotional perceptions and depression, but not emotional perceptions and anxiety. Conclusions: Interventions to improve dietary adherence for adults with coeliac disease displaying depressive symptoms should aim to increase the use of cognitive reappraisal and reduce the use of expressive suppression. Future studies should also explore mechanisms that may moderate the relationship between emotional perceptions and anxiety.
    Full-text · Article · Feb 2015
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    • "CD patients have a diminished QOL in the social aspects of life. Women reported greater emotional responses to a GFD (31). About 90% from 98 adult patients with CD said they transgress the dietary pattern and about 58% consumed without knowing gluten products (32). "
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    ABSTRACT: Many recent studies overshadow the effects of gluten-free diet. Gluten-free diet positive effects were observed in celiac disease patients: increase in body mass index, higher energy intakes, reducing adiposity gain, moderates the risk of the associated complications. However, adhering to a gluten-free diet is difficult for many people. A new solution is needed for quality of life of celiac disease patients, not for celiac disease treatment. Health education on gluten-free diet at home and in society seems to be the solution. The aim of our study is to evaluate the recent research on gluten-free diet as a nutritional therapy for patients with celiac disease. To achieve this purpose we have analyzed the published studies from 2008 to the present on nutrition in celiac disease.
    Full-text · Article · Jul 2014 · Gastroenterology and hepatology from bed to bench
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    • "Clinically-detected adolescents have also reported that questions about their diet and disease are experienced as demanding [51]. Treatment with a GFD can be considered costly, complex, and impacts all activities involving food [52]. The adolescents in this study mostly described living with CD as manageable, although there were also some who said that being diagnosed was terrible and some who quit the diet. "
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    ABSTRACT: BackgroundMass screening could identify those with unrecognized celiac disease (CD), but the experience of being detected through screening and living with screening-detected CD should be explored before considering this as acceptable intervention. For this study we invited screening-detected adolescents to describe their experience living with screening-detected CD five years after diagnosis with the aim to explore how their perceptions, practices, and beliefs evolved.MethodsAdolescents who were diagnosed through a population-based CD screening were invited to write narratives after being diagnosed. Of 153 adolescents who were eventually diagnosed through the screening, 91 wrote narratives one year after diagnosis and 72 five years after diagnosis. A qualitative content analysis resulted in a theme and categories that describe the experience living with screening-detected CD five years after diagnosis.ResultsThe overall theme – Internalizing the threat of risk – illustrates that being detected through screening and the internalized threat of future health complications have impacted how these adolescents felt about the diagnosis, coped with the gluten-free diet (GFD), and thought about CD screening. This theme is supported by four categories: maintaining an imposed disease identity describes how they continued to define their diagnosis in relation to the screening. They also expressed moving from forced food changes to adapted diet routines by describing habits, routines, coping strategies, and the financial burden of the GFD. They had enduring beliefs of being spared negative consequences, however, even after five years, some doubted they had CD and worried that being detected and eating a GFD might not be beneficial, i.e. continuing to fear it is “all in vain”.ConclusionsThere was maintenance and evolution in the perceptions, practices, and beliefs of the adolescents after five years. Some have adjusted to the disease and adapted new habits and coping strategies to deal with the GFD, while others still doubt they have CD or that being detected was beneficial. The transition to adapting to the disease and GFD is ongoing, illustrating the importance of providing ongoing support for those with screening-detected CD as they adjust to this chronic disease and the GFD.
    Full-text · Article · Jun 2014 · Health and Quality of Life Outcomes
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