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Diminished quality of life among adolescents with coeliac disease using maladaptive eating behaviours to manage a gluten-free diet: a cross-sectional, mixed-methods study.

ABSTRACT: BACKGROUND:Certain approaches to managing a strict gluten-free diet (GFD) for coeliac disease (CD) may lead to impaired psychosocial well-being, a diminished quality of life (QOL) and disordered eating. The present study aimed to understand adolescents' approaches to managing a GFD and the association with QOL. METHODS:Thirty adolescents with CD (13-17 years old) following the GFD for at least 1 year completed the Celiac Dietary Adherence Test (CDAT) and QOL survey. Their approaches to GFD management were explored using a semi-structured interview, where key themes were developed using an iterative process, and further analysed using a psychosocial rubric to classify management strategies and QOL. CDAT ratings were compared across groups. RESULTS:Gluten-free diet management strategies were classified on a four-point scale. Adaptive eating behaviours were characterised by greater flexibility (versus rigidity), trust (versus avoidance), confidence (versus controlling behaviour) and awareness (versus preoccupation) with respect to maintaining a GFD. Approximately half the sample (53.3%) expressed more maladaptive approaches to maintaining a GFD and those who did so were older with lower CD-Specific Pediatric Quality of Life (CDPQOL) scores, mean subscale differences ranging from 15.0 points for Isolation (t = 2.4, P = 0.03, d.f. = 28) to 23.4 points for Limitations (t = 3.0, P = 0.01, d.f. = 28). CONCLUSIONS:Adolescents with CD who manage a GFD with maladaptive eating behaviours similar to known risk factors for feeding and eating disorders experience diminished QOL. In accordance with CD management recommendations, we recommend ongoing follow-up with gastroenterologists and dietitians and psychosocial support referrals, as needed.

SUBMITTER: Cadenhead JW

PROVIDER: S-EPMC6467807 | biostudies-literature | 2019 Jun

REPOSITORIES: biostudies-literature

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Diminished quality of life among adolescents with coeliac disease using maladaptive eating behaviours to manage a gluten-free diet: a cross-sectional, mixed-methods study.

Cadenhead J W JW Wolf R L RL Lebwohl B B Lee A R AR Zybert P P Reilly N R NR Schebendach J J Satherley R R Green P H R PHR

Journal of human nutrition and dietetics : the official journal of the British Dietetic Association 20190305 3

<h4>Background</h4>Certain approaches to managing a strict gluten-free diet (GFD) for coeliac disease (CD) may lead to impaired psychosocial well-being, a diminished quality of life (QOL) and disordered eating. The present study aimed to understand adolescents' approaches to managing a GFD and the association with QOL.<h4>Methods</h4>Thirty adolescents with CD (13-17 years old) following the GFD for at least 1 year completed the Celiac Dietary Adherence Test (CDAT) and QOL survey. Their approach ...[more]

PMID: 30834587

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Project description:Non-coeliac gluten sensitivity (NCGS) refers to patients with primarily gastrointestinal symptoms without enteropathy that symptomatically benefit from gluten-free diet (GFD). Little is known about its pathophysiology, propensity to neurological manifestations, and if these differ from patients with coeliac disease (CD). We investigated the clinical and immunological characteristics of patients presenting with neurological manifestations with CD and those with NCGS.We compared clinical, neurophysiological, and imaging data of patients with CD and NCGS presenting with neurological dysfunction assessed and followed up regularly over a period of 20 years.Out of 700 patients, 562 were included. Exclusion criteria included no bowel biopsy to confirm CD, no HLA type available, and failure to adhere to GFD. All patients presented with neurological dysfunction and had circulating anti-gliadin antibodies. Out of 562 patients, 228 (41%) had evidence of enteropathy (Group 1, CD) and 334 (59%) did not (Group 2, NCGS). The most common neurological manifestations were cerebellar ataxia, peripheral neuropathy, and encephalopathy. There was a greater proportion of patients with encephalopathy in Group 1 and with a greater proportion of neuropathy in Group 2. The severity of ataxia did not differ between the two groups. Patients in Group 1 had more severe neuropathy. All patients from both groups responded to gluten-free diet. Anti-tissue transglutaminase (TG2) antibodies were found in 91% of patients in Group 1 and in 29% of patients in Group 2. Comparison between those patients in Group 2 with HLA-DQ2/DQ8 and those without as well as those with positive TG2 compared with those with negative TG2 antibodies identified no differences within these subgroups. Serological positivity for TG6 antibodies was similar in the two groups (67 and 60%).The neurological manifestations of CD and NCGS are similar and equally responsive to a GFD suggestive of common pathophysiological mechanisms.

Project description:This cross-sectional study aims to assess eating competence (EC-an intra-individual approach to food, behaviors, and attitudes related to food) and aspects related to a gluten-free diet (GFD) in Brazilian adults with gluten-related disorders (GRDs). The research was conducted using an online survey with a self-reported instrument consisting of 40 items, organized into three parts: (I) Socioeconomic and demographic data; (II) the Brazilian version of the Eating Competence Satter Inventory (ec-SI2.0™BR); and (III) questions about adherence and difficulties in following the gluten-free diet. EC was measured by the ecSI2.0™BR instrument, with scores ≥32 were considered competent eaters. The instrument was applied nationwide through the GoogleForms® platform from 14 February 2022 to 30 March 2022. The publicity for the recruitment was supported by Brazilian celiac local and national associations (Acelbras and Fenacelbra), pages of food services or personal pages of tips and posts about gluten-related disorders, and specialized stores that offer gluten-free foods. The recruitment occurred through social networks (emails, Facebook groups, WhatsApp, and Instagram). A total of 1030 Brazilians with GRDs answered the questionnaire. Most participants were female, aged 40 years or older, with an income >R$3000, and a high education level. The main difficulty regarding adherence to GFD was the high cost of gluten-free foods. Individuals younger than 40 years old had lower EC scores, with no differences between men and women. Increasing socioeconomic status, schooling, and culinary practices increased the total score. Participants who "never/almost never" felt socially judged because their diet had higher scores for total EC. Competent eaters GRD individuals (EC ≥ 32) were mostly individuals aged ≥40 y/o; with income > R$3000; following a GFD; satisfied with purchased gluten-free products; consuming gluten-free products prepared at home, mainly by themselves; who do not feel judged because of the GRD and who feel that they can live a normal life with GRD. Our study showed that individuals who strictly adhere to the GFD have higher scores on eating competence than those who sometimes follow the treatment.

Dataset Information

Diminished quality of life among adolescents with coeliac disease using maladaptive eating behaviours to manage a gluten-free diet: a cross-sectional, mixed-methods study.

Publications

Diminished quality of life among adolescents with coeliac disease using maladaptive eating behaviours to manage a gluten-free diet: a cross-sectional, mixed-methods study.

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