Celiac Disease: The challenges of affording a gluten-free diet
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Date
2012-12
Authors
Neil, Lesley E.
Journal Title
Journal ISSN
Volume Title
Publisher
Mount Saint Vincent University
Mount Saint Vincent University
Mount Saint Vincent University
Abstract
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.
Description
Keywords
Celiac disease , Gluten-free diet , Food security