Celiac Disease: The challenges of affording a gluten-free diet

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Neil, Lesley E.
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Mount Saint Vincent University
Mount Saint Vincent University
Treatment of celiac disease is a strict gluten-free diet for life. The gluten-free diet is a complex, socially restrictive and significantly more expensive diet than a regular wheat-based diet. There are both social and physical consequences to celiac disease. Social consequences include difficulty dining out and traveling as well as the negative impact on family life created by adherence to a gluten-free diet. Physical consequences related to non-adherence to the dietary treatment of celiac disease include malabsorption and malnutrition. Barriers to adhering to a gluten-free diet include limited availability of gluten-free food and the increased cost associated with purchasing gluten-free food. Food security encompasses physical and economic access to food for the dietary needs and requirements for the individual; therefore, it is important to determine how individuals with celiac disease experience and manage the dietary requirements of the disease and the costs associated with its treatment. The objectives of this thesis are to examine how families experience and manage the and nutritional and financial requirements of celiac disease, to discover enablers and barriers to celiac disease, to explore strategies that would aid in the nutritional and financial management of the disease, and to determine whether families experience food insecurity. Understanding family experiences with celiac disease and a gluten-free diet will help in developing strategies to improve affordability and hence adherence to the gluten-free diet. Participants in this study were primary food providers of children 16-years-of-age and younger with biopsy-confirmed celiac disease who were on a gluten-free diet for at least six months. A phenomenological approach was used to examine how families experienced and managed the nutritional and financial requirements of celiac disease. Bronfenbrenner’s socialecological systems theory provided a model to examine participants’ barriers and enablers to managing celiac disease in reference to the five layers of their environment (micro-, meso-, exo-, macro-, and chronosystems) that mediated their behaviours and experiences. Data were collected through semi-structured interviews with participants and through the administration of the Household Food Security Survey Module to determine food insecurity. Ten primary food providers (mothers) participated. How participants experienced celiac disease was greatly dependent on how knowledgeable they perceived the general population to be about the disorder. Positive experiences occurred when the participants met someone who knew about celiac disease or was interested in knowing about it. Negative experiences occurred when participants felt frustrated due to poor understanding of celiac disease in the general population and a perceived lack of seriousness of the disorder. Frustration was also observed through participants’ struggles with gluten-free food, specifically the cost. Though the participants were not found to experience food insecurity using the Household Food Security Survey Module, it was clear that many struggled with the cost of gluten-free foods and displayed characteristics of food insecurity. Most participants felt a lack of food choices, anxiety over eating away from the home due to fear of gluten contamination, and worry over the financial responsibility of a gluten-free diet. Families with celiac disease are struggling with both lack of availability and high cost of gluten-free diet. Knowledge of celiac disease is felt to be poor amongst the general public. Improving awareness of celiac disease and making gluten-free foods affordable through income supports should be high priorities for the public policy makers and health care professionals.
Celiac disease , Gluten-free diet , Food security