Author Description

How can research in the area of celiac disease take patients into account? Celiac disease is an intolerance for gluten, for which a lifelong gluten-free diet is the only treatment currently available. The aim of this thesis is to gain insight into the everyday life of patients, so as to better align genomics research with their specific needs and wants. We study patients’ conversations in various settings: with each other on Internet forums, with family members during mealtime conversations, and with scientists during discussions about research findings. In our analysis we focus not so much on the content of the conversations, but on what people do with their talk. We show, for instance, that patients treat the diet as a collective phenomenon rater than an individual matter; that incidental deviations from the diet are not treated as inconsistent with the diet, but as a part of it; and that taste, rather than the health aspect of food, is used to maintain the diet.