Celiac Disease 30 Years after Diagnosis: Struggling With Gluten-free Adherence or Gaining Gluten Tolerance?

Objectives: Studies investigating patients with coeliac disease (CD) on very long-term follow-up are limited. We aimed to evaluate the characteristics of patients with CD diagnosed more than 30 years ago. Methods: Clinical, histologic, genetic and demographic data of patients with CD diagnosis made before 1985 were collected and their standardised mortality ratio (SMR) calculated. According to the gluten free diet (GFD) status, CD patients were divided into three groups and a specific questionnaire on GFD awareness and gluten-free products was administered to patients and caregivers. Results: 337 CD patients were included in the study. The SMR was 0.37 (CI 0.10 to 0.94) compared to a matched population. A total of 197 patients were grouped according to GFD compliance, with 35 CD patients reporting chronic voluntary gluten ingestion. No significant differences were found between groups regarding family history of CD, symptoms and histology at diagnosis, autoimmune disorders. Follow-up histology was performed in 63 patients. Twenty patients had normal histology on gluten containing diet (GCD). Questionnaire scores were lower in patients on GCD. Caregivers scores were not correlated with patients' gluten consumption. Conclusions: Although poor adherence to GFD is the major predictor of persistence of mucosal lesions at follow-up histology, a proportion of patients did not show a relapse of villous atrophy in spite chronic voluntary gluten ingestion, nor increase in mortality. Moreover, GFD knowledge and adherence could be partly lost during the transition between childhood and adulthood. Address correspondence and reprint requests to Luca Elli, MD PhD, Center for the Prevention and Diagnosis of Celiac Disease, Gastroenterology and Endoscopy Unit, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Via F. Sforza, 28, 20122 Milan, Italy (e-mail: dottorlucaelli@gmail.com). Received 3 October, 2017 Accepted 22 March, 2018 Lorenzo Norsa and Federica Branchi, Equal Contributors. Sources of Funding: Research support for this study was provided in part by grants from the Italian Ministry of Health and Lumbardy's Regional Government Authority (Ministero della Salute e Regione Lombardia call no. R.F.GR 2011–02348234). Conflicts of interest: none declared. Supplemental digital content is available for this article. Direct URL citations appear in the printed text, and links to the digital files are provided in the HTML text of this article on the journal's Web site (www.jpgn.org). © 2018 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology,

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