Celiac Disease Narratives Contributions

Contributions and limitations

The purpose of this study way to examine the diagnosis narratives of individuals with celiac disease. I posed three research questions at the beginning of this study: 1) How do individuals diagnosed with Celiac Disease understand themselves in relationship to the medical establishment?, 2) How do individuals diagnosed with Celiac Disease understand their disease? and 3) How do individuals diagnosed with CD negotiate their identity in relationship to their disease? Three general themes emerged from the interviews, including dissatisfaction with the medical establishment, feelings of frustration and confusion before diagnosis and a feeling of empowerment through knowledge about CD after diagnosis. Participants narratives also displayed a very non-linear story line.

Hallert et al. (1998) found women to experience higher dissatisfaction with the gluten free diet than men. While that was not the focus of this study, there was no difference in the attitudes and experiences of men and women with CD. My findings are unique in several ways. Initially, and I would argue most importantly, my results are based on interviews with individuals and listening to their stories. Nearly all previous scholarship regarding CD has been medical or empirical. Additionally, my examination of celiac narratives indicates a comedic, tragic, satirical pattern that is similar to all of the individual’s stories. Using Arthur Frank’s categories, these stories fall cross two of his established categories: chaos and quest. Individual’s experiences began as chaos narratives, but then became quest narratives. The third unique aspect of my results is the perception of normality described by participants. Individuals still see their food as “not normal.” By extension, they perceive themselves to be “not normal” as well. Finally, participants’ ironic relationship with the medical profession is not new, but instead of being focused on doctors, many individuals anger was directed at dietitians.

My results confirm/deny previous examinations of patient narratives. While Ellingson and Buzzanell (1999) found that women's satisfaction with communication was part of an ongoing relationship with their physician, individuals with CD quickly move beyond dependence on their medical care professional and begin to empower themselves through the acquisition of knowledge. Similar to Troughton, et al.’s (2008) results, patients with CD looked to the medical establishment for information. When little information was forthcoming, they found alternative sources, such as support groups, friends, or the internet.

This study had some limitations. First, the individuals interviewed may not represent all of those currently living with CD. [There may or may not be demographic information available about the breakdown of sex, age, time living with the disease, and age at diagnosis.] Additionally, these individuals were only asked to tell their diagnosis story, and were not asked more pointed questions about their experiences. Third, most individuals were living in the upper midwest in a mid-sized city. Individuals from more rural or more urban areas may have different experiences based on medical care and availability of gluten free foods. Future studies should examine more closely CD patients’ experiences with the medical profession, rural/urban differences, the diagnosis experiences of children and their parents, or the difference based on the length of time living on the gluten free diet.

Living with Celiac Disease is not easy. In a world where wheat is one of the most common starches, not being able to consume it in any form is a severe limit on a person’s diet. The participants in my study, while initially being overwhelmed with their diagnosis, were able to empower themselves and learn to live with their disease.