Those living with celiac disease are experiencing frustration and isolation when newly diagnosed, but also after several years of living on the gluten-free diet, according to a new survey. Conducted by the Canadian Celiac Association and Health Canada, the study was based on nearly 6,000 participants and explores the emotional toll of living with the disease.
About two-thirds of those on the gluten-free diet for more than five years who responded to the questionnaire survey were frustrated with others feeling sorry for them, while a quarter felt embarrassed by their dietary needs. Nearly one-third of participants felt as though they were a burden to others.
An astonishing 40 percent still had trouble with family members or friends thinking “just a little” gluten wouldn’t be harmful. Overall, frustration and isolation were the most common negative emotions expressed, even after five years of living gluten-free.
“To think after five years people are feeling isolated is very, very sad. That’s not an easy thing,” says Marion Zarkadas, lead author of the study and a retired member of the CCA’s advisory board. “If you can’t eat out with your friends or your family when away from home, that’s very isolating.”
Information was also gathered from individuals who had been on a gluten-free diet for fewer than five years. In that group, negative emotions tended to be even stronger. For instance, a greater proportion felt a burden to others, and those new to going gluten-free had difficulty asking others to accommodate the diet.
Researchers also discovered that emotional difficulties such as feelings of embarrassment and neglect, dropped significantly with time on the diet. This suggests that it does become more manageable as time goes on.
“The people who really need help are the newly diagnosed,” says Zarkadas. “They need to know what the problems are and how to solve them, and they need to know early on.” She thinks the information gleaned from this survey could be incorporated in support groups and sessions for the newly diagnosed.