• Celiac Disease and the Use of Anecdotal Evidence to Profess Expertise

      Copelton, Denise A.; Herman, Marie; State University of New York College at Brockport (2020-09-15)
      Celiac disease is a complex autoimmune disease associated with adverse effects after ingesting gluten, the main storage protein of wheat, barley, and rye. Gluten triggers an autoimmune response in the small intestine, destroying the villi that absorbs nutrients, causing gastrointestinal distress, malnourishment, iron deficiency anemia, and other symptoms. The only treatment is a gluten-free diet. Celiac diseases’ often lengthy diagnosis process, disproportionate rate of diagnosis, and high prevalence in the United States makes it an excellent disease to study in an effort to gain a better understanding of people’s experience of the diagnosis process. I analyzed a systematic random sample of 142 posts on pre-diagnosis and symptoms on a public celiac discussion board using QDA Miner, a free qualitative analysis program. I used the grounded theory method of open and focused coding to explore how participants request, give, and receive information on the diagnosis process. People on the forum establish lay expertise through the use of the anchor of medical jargon; profess knowledge of celiac disease tests, genetics, and symptoms; and use anecdotes alongside these anchors to support their claims. Unlike the artificial settings used in experimental research, this ethnography of an online discussion board demonstrates how people use both anecdotal and statistical evidence to profess expertise in the real world.