Rate and determinants of non-adherence to a gluten-free diet and nutritional status assessment in children and adolescents with celiac disease in a tertiary Brazilian referral center: a cross-sectional and retrospective study

BACKGROUND: Compliance with a gluten-free diet (GFD) is difficult at all ages but particularly for teenagers due to social, cultural, economic, and practical pressures. The multidisciplinary team responsible for the treatment of patients with celiac disease and give support to their parents plays a special role on strengthening GFD and assessing the nutritional and physical health. METHODS: A cross-sectional and retrospective study including patients under 20 years of age, with biopsy-confirmed CD, followed regularly at the Department of Pediatrics, Division of Gastroenterology, Hospital das Clínicas, University of Sao Paulo, School of Medicine, Sao Paulo, Brazil, were surveyed using a questionnaire and serologic test applied between November 2011 and February 2012. A retrospective chart review of these patients was performed to collect the anthropometric data along with the results of the serologic test performed at the time of diagnosis and after at least 1 year of treatment with a GFD. RESULTS: We evaluated 35 patients aged between 2.4 and 19.9 years. Of these 68.6% were female, 88.6% had the typical form of the disease and 51.4% had other comorbidities. The mean age at diagnosis was 5.4 years. Despite dietary guidance, 20% reported non-adherence to the diet. Most children recovered the weight and height deficit after 5 years of treatment, and in some children, excessive weight gain became a concern. CONCLUSION: The majority of transgressions occurred intentionally at home or at parties. There was a risk of excessive weight gain, especially in the first two years of treatment. More alternatives and easier access to low cost gluten-free foods, increasing the discussion about the benefits of adhering to a GFD among patients, families, and the general population, besides the acquisition of self-management skills, are crucial to fostering independent children and adolescents who have the knowledge and tools to manage life with CD. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12876-018-0740-z) contains supplementary material, which is available to authorized users.