Experiences and own management regarding residual symptoms among people with coeliac disease

Lisa Ring Jacobsson, Anna Milberg, Katarina Hjelm, Maria Friedrichsen

Between 7% and 30% of people with treated coeliac disease suffer from residual symptoms, and there is a knowledge gap about their own management of these symptoms. To explore experiences and management concerning residual symptoms despite a gluten-free diet in people with coeliac disease. A qualitative explorative design with semi-structured interviews with 22 adults with coeliac disease in Sweden. Data were analysed using qualitative content analysis. The informants had, at diagnosis, thought that their symptoms would disappear if they followed a gluten-free diet, but the disease was continuing to have a substantial impact on their lives, despite several years of treatment. They experienced cognitive, somatic as well as mental symptoms, including impact on personality (e.g. having a "shorter fuse", being more miserable or tired). However, only a few informants had sought medical care for persistent symptoms. Instead they tried to manage these by themselves, e.g. abstaining from food during periods of more intense symptom, or using distraction. The management of persistent symptoms resembled thorough detective work. To prevent problems related to residual symptoms the informants used withdrawal of social contact as well as acceptance of their situation. People with treated coeliac disease may experience residual symptoms of both a physical and psychological nature, causing major negative impacts on their lives in different ways. In the light of this, healthcare staff should change their practices regarding the follow-up of these people, and in addition to medical care should provide guidance on management strategies to facilitate the daily life. Furthermore, information to newly diagnosed persons should make them aware of the possibility to experience continued symptoms, despite treatment.