Sequence of acquisition of self-management skills to follow a gluten-free diet by adults with celiac disease

Clerx, Emma; Silvester, Jocelyn A.; Leffler, Daniel A.; DeGroote, Maya; Fishman, Laurie N.

doi:10.1016/j.dld.2019.02.008

Cited by 11 publications

(11 citation statements)

References 25 publications

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“…Recently, a novel viewpoint of benchmarks was suggested. It combines the knowledge and social skills required to navigate specific tasks while managing a GFD and the sequence of acquiring learning skills in different life settings [ 13 , 33 ].…”

Section: Discussionmentioning

confidence: 99%

Promoting Effective Self-Management of the Gluten-Free Diet: Children’s and Adolescents’ Self-Generated Do’s and Don’ts

Meyer

2022

IJERPH

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Celiac disease (CD) is a chronic health condition treated by managing a lifelong, strict, and demanding gluten-free diet. Managing the diet entails effective use of self-management skills. This study aimed to explore self-generated procedures children and adolescents with CD in Israel perform when participating in food-related activities considering their self-management skills and health requirements. Participants included children and adolescents with CD, aged 8 to 18 years, that had been diagnosed more than 6 months prior to the study. Parents completed a demographic questionnaire and reported their child’s constancy in adherence to the diet. Children and adolescents were asked to share the things they do themselves to prepare for participating in the various activities. Responses were qualitatively analyzed, and common themes were identified and categorized using directed analysis. Participants were 126 children and adolescents (Mage = 12.33 yr, SD = 2.85), 67.5% of whom had been diagnosed more than 3 yr prior to the study. Based on parents’ reports, almost all (97.6%) participants “always adhered” to the diet. A total of 10 categories were defined from the qualitative responses describing 125 do and don’t actions used by the children and adolescents to self-manage their diet. The do and don’t actions encompass cognitive planning far beyond the mere act of avoiding gluten. These actions can serve as an initial database of suggested strategies to support acquiring independent self-management. Understanding the cognitive complexity of routinely carrying out the diet while actively participating in everyday activities can assist health professionals in building support and intervention programs, promoting effective self-management, and facilitating optimal adherence to the diet.

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Section: Discussionmentioning

confidence: 99%

Promoting Effective Self-Management of the Gluten-Free Diet: Children’s and Adolescents’ Self-Generated Do’s and Don’ts

Meyer

2022

IJERPH

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“…Wheat is the most important cereal crop worldwide and has been used as an important staple crop for centuries but in certain individuals and genetically predisposed people, it causes certain disorders and conditions arising mainly from the gluten fraction [ Figure 1; (37)]. CD is caused by gluten proteins specifically gliadins but the problem lies not just with gluten protein but with other non-prolamins components of wheat as well which results in the onset of some other conditions as well (38). These include NCGS in which patients experience symptoms similar to CD but these get resolved when gluten is removed from the diet.…”

Section: Wheat Related Disordersmentioning

confidence: 99%

Pathogenesis of Celiac Disease and Other Gluten Related Disorders in Wheat and Strategies for Mitigating Them

et al. 2020

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Wheat is a major cereal crop providing energy and nutrients to the billions of people around the world. Gluten is a structural protein in wheat, that is necessary for its dough making properties, but it is responsible for imparting certain intolerances among some individuals, which are part of this review. Most important among these intolerances is celiac disease, that is gluten triggered T-cell mediated autoimmune enteropathy and results in villous atrophy, inflammation and damage to intestinal lining in genetically liable individuals containing human leukocyte antigen DQ2/DQ8 molecules on antigen presenting cells. Celiac disease occurs due to presence of celiac disease eliciting epitopes in gluten, particularly highly immunogenic alpha-gliadins. Another gluten related disorder is non-celiac gluten-sensitivity in which innate immune-response occurs in patients along with gastrointestinal and non-gastrointestinal symptoms, that disappear upon removal of gluten from the diet. In wheat allergy, either IgE or non-IgE mediated immune response occurs in individuals after inhalation or ingestion of wheat. Following a lifelong gluten-free diet by celiac disease and non-celiac gluten-sensitivity patients is very challenging as none of wheat cultivar or related species stands safe for consumption. Hence, different molecular biology, genetic engineering, breeding, microbial, enzymatic, and chemical strategies have been worked upon to reduce the celiac disease epitopes and the gluten content in wheat. Currently, only 8.4% of total population is affected by wheat-related issues, while rest of population remains safe and should not remove wheat from the diet, based on false media coverage.

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“…Executive functions—working memory, mental flexibility and self‐control—develop into early adulthood and deficits in these areas may be a risk factor for decreased participation in activities involving food 113 . While many self‐management skills needed to successfully follow a GFD may be mastered by mid‐adolescence, 114 adults report taking several years to feel comfortable navigating a GFD outside the home 115 . As well, those who are diagnosed in childhood often incorporate this into their sense of identity which may lead to more adaptive behaviours and less likelihood of being overwhelmed 116 .…”

Section: Adolescent Considerationsmentioning

confidence: 99%

“…113 While many self-management skills needed to successfully follow a GFD may be mastered by mid-adolescence, 114 adults report taking several years to feel comfortable navigating a GFD outside the home. 115 As well, those who are diagnosed in childhood often incorporate this into their sense of identity which may lead to more adaptive behaviours and less likelihood of being overwhelmed. 116 Changes in the availability of gluten-free foods and CD awareness have fundamentally altered the day-to-day realities of following a GFD and more work is needed to understand contemporary experiences; nevertheless, adolescents continue to identify social activities outside the home and travel as challenging situations.…”

Section: Adole Scent Cons Ider Ationsmentioning

confidence: 99%

Review article: Becoming and being coeliac—special considerations for childhood, adolescence and beyond

Chang

O'Shea

Therrien

et al. 2022

Aliment Pharmacol Ther

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Classically considered a disease of early childhood characterised by malabsorption and failure to thrive, coeliac disease is now recognised to arise in genetically susceptible individuals at any age. Although permissive HLA genotypes are the strongest predictor of coeliac disease, they are not sufficient. Several prospective cohort studies enrolling genetically at-risk infants have investigated the role of potential triggers of coeliac disease autoimmunity, such as timing of gluten introduction, viral infections and dietary patterns. Much less is known about triggers of coeliac disease in adulthood. Better understanding of factors leading to coeliac disease may be helpful in the management of those with potential coeliac disease (elevated serum celiac antibodies without villous atrophy in the small intestine), many of whom initiate a gluten-free diet without demonstration of villous atrophy. There are a range of clinical presentations of celiac disease in childhood and patterns of coeliac serology, including fluctuation and spontaneous reversion on a gluten-containing diet, vary.There is a current debate over best strategies to manage adults and children with potential coeliac disease to avoid over-treatment and under-treatment. Childhood and adolescence carry unique issues pertaining to the diagnosis and management of coeliac disease, and include nutrition and growth, rescreening, repeat biopsy, dietary adherence concerns and transition to adult care. In conclusion, while coeliac disease has similar pathogenesis and general clinical manifestations in paediatric and adult populations, diagnostic and management approaches need to adapt to the developmental stages.

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Sequence of acquisition of self-management skills to follow a gluten-free diet by adults with celiac disease

Cited by 11 publications

References 25 publications

Promoting Effective Self-Management of the Gluten-Free Diet: Children’s and Adolescents’ Self-Generated Do’s and Don’ts

Promoting Effective Self-Management of the Gluten-Free Diet: Children’s and Adolescents’ Self-Generated Do’s and Don’ts

Pathogenesis of Celiac Disease and Other Gluten Related Disorders in Wheat and Strategies for Mitigating Them

Review article: Becoming and being coeliac—special considerations for childhood, adolescence and beyond

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