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  1. Roos, Susanne PhD, RN
  2. Liedberg, Gunilla M. PhD, OTR
  3. Hellstrom, Ingrid PhD, RN
  4. Wilhelmsson, Susan PhD, RN


Studies show that people with celiac disease have reduced well-being and have persistent symptoms, mainly related to the gastrointestinal tract. The aim of this study was to analyze how persons in a celiac disease member association report their symptoms, health, and life satisfaction. A questionnaire, with both open and closed questions, was distributed to all members (n = 726) of a celiac association in the southeast of Sweden. The response rate was 74.5%, of which 524 (72%) said they had received a celiac disease diagnosis and were thus included in the study. Almost half of the participants (40.7%-42.2%) stated that they had persistent celiac disease symptoms despite following a gluten-free diet. Diarrhea, abdominal pain, and congestion were persistent symptoms reported and could contribute to a lower health status compared with people without persistent symptoms. The life satisfaction scale (LiSat-9) showed differences in 5 of 9 variables between the groups. Living with celiac disease is far from easy when you have persistent symptoms. People with celiac disease require follow-up by healthcare services, and a new treatment needs to be developed because following the gluten-free diet alone does not seem to alleviate symptoms in everyone.