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Vagadori J, Trojanowski PJ, Keenan C, Bui HNT, Raber C, Perez-Junkera G, Hinds P, Streisand R, Harlan M, Coburn S. Behavioral telehealth intervention development for adolescents with celiac disease and their caregivers: The Gluten-Free Resilience and Overall Wellness (GROW) project. Nutr Health 2025:2601060251330938. [PMID: 40304638 DOI: 10.1177/02601060251330938] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 05/02/2025]
Abstract
BackgroundCeliac disease (CD) is a chronic autoimmune condition that, when left untreated, increases the risk of significant health challenges. The only medical treatment for CD is a strict gluten-free diet (GFD), which is behaviorally dependent. Despite quality of life (QOL) and adherence being impacted by the complicated and burdensome nature of the GFD, there exists a paucity of established behavioral interventions aimed to improve adherence and QOL in adolescents with CD.AimsDevelop and refine the Gluten-Free Resilience and Overall Wellness (GROW) Project, the first family-centered, online behavioral intervention to improve QOL and GFD self-management in adolescents with CD and their parents.MethodsStudy staff adapted and refined an existing online behavioral intervention for adults with CD. Two rounds of interviews with patient, parent, and clinician stakeholders were conducted to collect feedback and inform the final intervention structure and content. Qualitative interview data were analyzed using inductive content analysis.ResultsStakeholder feedback supported a group-based, virtual format across both rounds of interviews. Participants proposed format changes to the intervention to increase participant engagement. Content suggestions included enhancing information about reliable digital resources, building resilience, GFD and alcohol, and the scientific development of the program.ConclusionThe GROW Project addresses a critical need for interventions that strengthen behavioral self-management strategies in adolescents with CD and their families by providing virtual skill-building and psychoeducation that may improve family's QOL while managing CD and the GFD.
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Affiliation(s)
- Jack Vagadori
- Center for Translational Research, Children's National Hospital, Washington, DC, USA
| | - Paige J Trojanowski
- Center for Translational Research, Children's National Hospital, Washington, DC, USA
| | - Charlotte Keenan
- Center for Translational Research, Children's National Hospital, Washington, DC, USA
| | - Hong N T Bui
- Center for Translational Research, Children's National Hospital, Washington, DC, USA
- Department of Psychology, The University of Maryland, College Park, MD, USA
| | - Catherine Raber
- Center for Translational Research, Children's National Hospital, Washington, DC, USA
- Division of Gastroenterology, Children's National Hospital, Washington, DC, USA
| | - Gesala Perez-Junkera
- Center for Translational Research, Children's National Hospital, Washington, DC, USA
- GLUTEN3S Research Group, Department of Nutrition and Food Science, University of the Basque Country, Vitoria-Gasteiz, Spain
| | - Pamela Hinds
- Center for Translational Research, Children's National Hospital, Washington, DC, USA
- Department of Nursing Science, Professional Practice, and Quality, Children's National Hospital, Washington, DC, USA
- Division of Pediatrics, The George Washington School of Medicine and Health Sciences, Washington DC, USA
| | - Randi Streisand
- Center for Translational Research, Children's National Hospital, Washington, DC, USA
- Division of Pediatrics, The George Washington School of Medicine and Health Sciences, Washington DC, USA
- Division of Psychiatry and Behavioral Sciences, The George Washington School of Medicine and Health Sciences, Washington DC, USA
| | - Michelle Harlan
- Center for Translational Research, Children's National Hospital, Washington, DC, USA
- Department of Psychology, George Mason University, Fairfax, VA, USA
| | - Shayna Coburn
- Center for Translational Research, Children's National Hospital, Washington, DC, USA
- Division of Pediatrics, The George Washington School of Medicine and Health Sciences, Washington DC, USA
- Division of Psychiatry and Behavioral Sciences, The George Washington School of Medicine and Health Sciences, Washington DC, USA
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Aktaş EF, Ünlü Kaynakçı FZ. The adolescent celiac experience: a holistic perspective on self-care among the "invisible" segment of society. Disabil Rehabil 2025:1-10. [PMID: 40273321 DOI: 10.1080/09638288.2025.2496352] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/22/2024] [Revised: 04/11/2025] [Accepted: 04/17/2025] [Indexed: 04/26/2025]
Abstract
PURPOSE Strict adherence to a gluten-free diet, combined with the developmental needs of adolescence, can profoundly impact the lives of adolescents with celiac disease. This study aims to explore the life experiences of such individuals, a population often overlooked in society. MATERIALS AND METHODS The study utilized Interpretative Phenomenological Analysis (IPA) in semi-structured interviews with 14 adolescents (11 females and 3 males) aged 14-19 years. RESULTS Four experiential themes were identified: (1) The Role of Celiac Disease in Life Dimensions; (2) Strategies for Self-Care Maintenance; (3) The Role of Support Systems in Facilitating Self-Care; and (4) Challenges for Sustaining Self-Care Maintenance. CONCLUSION The current findings indicated that the disease impacts not only physical health but also social and emotional well-being, as well as academic and career aspirations. Social support emerged as a crucial factor in promoting effective self-care, whereas experiences of discrimination presented significant barriers to its maintenance.
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Affiliation(s)
- Emine Feyza Aktaş
- Department of Guidance & Counseling, Faculty of Education, Balıkesir University, Balıkesir, Turkey
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Enache I, Jinga M, Palaga A, Balaban DV, Galos F, Macovei DM, Popp A. Impact of ESPGHAN no-biopsy strategy on the outcome of celiac disease treatment in children. Front Pediatr 2025; 13:1546711. [PMID: 40181998 PMCID: PMC11965348 DOI: 10.3389/fped.2025.1546711] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/17/2024] [Accepted: 03/03/2025] [Indexed: 04/05/2025] Open
Abstract
Aim The European Society for Pediatric Gastroenterology Hepatology and Nutrition (ESPGHAN) allows a no-biopsy diagnostic of celiac disease under certain conditions. We assessed the impact of the diagnostic algorithm on the patient's long-term outcome by comparing the serology-based diagnosed patients to biopsy-proven ones. Methods We reviewed the charts of children presenting with antitransglutaminase IgA titers above ten times upper limit of normal and consecutively diagnosed with celiac disease between 2010 and 2014, a time-period overlapping with ESPGHAN diagnostic guideline change in 2012. Outcome measures for no-biopsy vs. biopsy-proven diagnosed patients were clinical and laboratory findings, compliance to gluten-free diet and to regular visits after one, two and 8-10 years of follow-up. Results Clinical and laboratory, i.e., serum chemistry and autoantibody outcome measures on gluten-free diet clearly showed worse patient healing in the 33 serology-based diagnosed children compared to the 30 biopsy-proven ones. The attendance of the follow-up visits was also higher in the biopsy group. Conclusions Our results indicate that dietary transgressions are common in childhood celiac disease resulting in slow healing. Therefore, there is a need of improvement of the management, with special attention regarding the ESPGHAN no-biopsy criteria diagnosed patients. Our study also indicates that novel treatments adjunctive to diet are warranted in children.
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Affiliation(s)
- Iulia Enache
- Department of Pediatrics, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania
- Department of Gastroenterology, Dr. Carol Davila Central Military Emergency University Hospital, Bucharest, Romania
| | - Mariana Jinga
- Department of Pediatrics, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania
- Department of Gastroenterology, Dr. Carol Davila Central Military Emergency University Hospital, Bucharest, Romania
| | - Alexandra Palaga
- Department of Pediatrics, Alessandrescu-Rusescu National Institute for Mother and Child Health, Bucharest, Romania
| | - Daniel Vasile Balaban
- Department of Pediatrics, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania
- Department of Gastroenterology, Dr. Carol Davila Central Military Emergency University Hospital, Bucharest, Romania
| | - Felicia Galos
- Department of Pediatrics, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania
- Department of Pediatrics, Marie-Curie Emergency Children’s Hospital, Bucharest, Romania
| | - Dhea-Maria Macovei
- Department of Pediatrics, Alessandrescu-Rusescu National Institute for Mother and Child Health, Bucharest, Romania
| | - Alina Popp
- Department of Pediatrics, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania
- Department of Pediatrics, Alessandrescu-Rusescu National Institute for Mother and Child Health, Bucharest, Romania
- Celiac Disease Research Center, Faculty of Medicine and Health Technology, Tampere University and Tampere Hospital, Tampere, Finland
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Fiori F, Bravo G, Neuhold S, Bartolone G, Pilo C, Parpinel M, Pellegrini N. Compliance and Attitudes towards the Gluten-Free Diet in Celiac Patients in Italy: What Has Changed after a Decade? Nutrients 2024; 16:2493. [PMID: 39125372 PMCID: PMC11314567 DOI: 10.3390/nu16152493] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/28/2024] [Revised: 07/19/2024] [Accepted: 07/22/2024] [Indexed: 08/12/2024] Open
Abstract
This study aims were (i) to describe Italian celiac patients who agreed to participate in the latest web survey and their attitudes toward the GF diet (compliance, perceived limitations, and worries) and (ii) to compare the answers given by the 2011 and 2022 responders. The self-administered questionnaire was distributed through the Italian Coeliac Association channels (link on social media, websites, and newsletters) to all of the celiac patients willing to participate in 2011 and 2022 (2427 and 3529 responders who answered the same questions, respectively). Descriptive analyses and the Pearson's chi-squared test were performed. The responders were 1 to 84 years old and mainly female. The prevalence of adherent patients in 2022 was 91%, with the highest value (94%) in children (≤10 years old) and adolescents (15-17 years old). Overall, young adults were the most worried group. About a decade after the first survey, we observed a decreasing prevalence of transgression events (-5%) and (at least) occasional temptation (-17%), a decreasing prevalence of health-related and general worries, but an increasing prevalence of social life withdrawal. In conclusion, it is important to periodically monitor celiac patients' compliance and attitudes towards the gluten-free diet. As also highlighted in international guidelines, a reorganization of the diagnosis/follow-up visits, including an expert dietary consultation, is needed.
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Affiliation(s)
- Federica Fiori
- Department of Medicine, University of Udine, 33100 Udine, Italy; (F.F.); (G.B.); (M.P.)
| | - Giulia Bravo
- Department of Medicine, University of Udine, 33100 Udine, Italy; (F.F.); (G.B.); (M.P.)
| | - Susanna Neuhold
- Associazione Italiana Celiachia (AIC), 16124 Genoa, Italy; (S.N.)
| | | | - Caterina Pilo
- Associazione Italiana Celiachia (AIC), 16124 Genoa, Italy; (S.N.)
| | - Maria Parpinel
- Department of Medicine, University of Udine, 33100 Udine, Italy; (F.F.); (G.B.); (M.P.)
| | - Nicoletta Pellegrini
- Department of Agricultural, Food, Environmental and Animal Sciences, University of Udine, 33100 Udine, Italy
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Macedo L, Catarino M, Festas C, Alves P. Vulnerability in Children with Celiac Disease: Findings from a Scoping Review. CHILDREN (BASEL, SWITZERLAND) 2024; 11:729. [PMID: 38929308 PMCID: PMC11201835 DOI: 10.3390/children11060729] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 05/05/2024] [Revised: 06/08/2024] [Accepted: 06/10/2024] [Indexed: 06/28/2024]
Abstract
(1) Background: The scientific literature highlights that children diagnosed with celiac disease (CD) are at a heightened risk of experiencing physical, psychological, and social challenges, impacting their overall healthy childhood development. However, there remains a lack of a clear understanding regarding the factors that contribute to this vulnerability. The purpose of this study is to analyze and map the evidence on the sociopsychosomatic vulnerability of these children and identify gaps in this topic. (2) Methods: Following Joanna Briggs Institute's guidelines for scoping reviews, we executed a detailed search of key electronic databases and explored the grey literature to capture a broad spectrum of studies. Our focus was on identifying research that looked into the multiple dimensions of vulnerability-physical, psychological, and social-in children with CD. We included a diverse range of study designs as well as systematic reviews, ensuring a comprehensive analysis. The selection process was stringent, utilizing clearly defined inclusion and exclusion criteria. (3) Results: We identified 61 studies that met our inclusion criteria. The review highlighted significant adverse health outcomes in children with CD and elucidated various individual and environmental determinants that influenced these vulnerabilities. It also underscored the lack of assessment tools to evaluate the risk of health problems in this population. (4) Conclusions: The findings underscore a critical need for further research to deepen our understanding of the vulnerabilities associated with CD in children. Developing targeted assessment tools will be crucial in stratifying health risks and enhancing care strategies for this vulnerable population.
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Affiliation(s)
- Lúcia Macedo
- Âncora Community Care Unit, Gaia and Espinho Local Health Unit, 4430-037 Gaia, Portugal
- Institute of Health Sciences (ICS), Universidade Católica Portuguesa, 4169-005 Porto, Portugal; (C.F.); (P.A.)
- Center for Interdisciplinary Research in Health (CIIS), Institute of Health Sciences (ICS), Universidade Católica Portuguesa, 4169-005 Porto, Portugal;
| | - Marta Catarino
- Center for Interdisciplinary Research in Health (CIIS), Institute of Health Sciences (ICS), Universidade Católica Portuguesa, 4169-005 Porto, Portugal;
- Health Department, Polytechnic Institute of Beja, 7800-111 Beja, Portugal
- Institute of Health Sciences (ICS), Universidade Católica Portuguesa, 1649-023 Lisboa, Portugal
| | - Constança Festas
- Institute of Health Sciences (ICS), Universidade Católica Portuguesa, 4169-005 Porto, Portugal; (C.F.); (P.A.)
- Center for Interdisciplinary Research in Health (CIIS), Institute of Health Sciences (ICS), Universidade Católica Portuguesa, 4169-005 Porto, Portugal;
| | - Paulo Alves
- Institute of Health Sciences (ICS), Universidade Católica Portuguesa, 4169-005 Porto, Portugal; (C.F.); (P.A.)
- Center for Interdisciplinary Research in Health (CIIS), Institute of Health Sciences (ICS), Universidade Católica Portuguesa, 4169-005 Porto, Portugal;
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Luque V, Crespo-Escobar P, Hård Af Segerstad EM, Koltai T, Norsa L, Roman E, Vreugdenhil A, Fueyo-Díaz R, Ribes-Koninckx C. Gluten-free diet for pediatric patients with coeliac disease: A position paper from the ESPGHAN gastroenterology committee, special interest group in coeliac disease. J Pediatr Gastroenterol Nutr 2024; 78:973-995. [PMID: 38291739 DOI: 10.1002/jpn3.12079] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/19/2023] [Revised: 08/10/2023] [Accepted: 08/20/2023] [Indexed: 02/01/2024]
Abstract
BACKGROUND AND OBJECTIVE Coeliac disease is a chronic, immune-mediated disorder for which the only treatment consists of lifelong strict adherence to gluten-free diet (GFD). However, there is a lack of evidence-based guidelines on the GFD dietary management of coeliac disease. This position paper, led by the Special Interest Group in coeliac disease of the European Society of Pediatric, Gastroenterology Hepatology, and Nutrition, supported by the Nutrition Committee and the Allied Health Professionals Committee, aims to present evidence-based recommendations on the GFD as well as how to support dietary adherence. METHODS A wide literature search was performed using the MeSH Terms: "diet, gluten free," "gluten-free diet," "diets, gluten-free," "gluten free diet," and "coeliac disease" in Pubmed until November 8th, 2022. RESULTS The manuscript provides an overview of the definition of the GFD, regulations as basis to define the term "gluten-free," which foods are naturally gluten-free and gluten-containing. Moreover, it provides recommendations and educational tips and infographics on suitable food substitutes, the importance of reading food labels, risk of gluten cross-contact at home and in public settings, nutritional considerations as well as factors associated to dietary adherence based on available evidence, or otherwise clinical expertise. CONCLUSIONS This position paper provides guidance and recommendations to support children with coeliac disease to safely adhere to a GFD.
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Affiliation(s)
- Veronica Luque
- Serra Húnter, Universitat Rovira i Virgili, Reus, Spain
- Paediatric Nutrition and Development Research Unit, IISPV, Reus, Spain
| | - Paula Crespo-Escobar
- Health Sciences Department, ADVISE Research Group, Miguel de Cervantes European University, Valladolid, Spain
- Nutrition and Dietetics Unit, Hospital Recoletas Campo Grande, Valladolid, Spain
| | - Elin M Hård Af Segerstad
- Paediatric Department, Skane University Hospital, Malmoe, Sweden
- Department of Clinical Sciences, Celiac Disease and Diabetes Unit, Faculty of Medicine, Lund University, Malmoe, Sweden
| | - Tunde Koltai
- Direction Board, Association of European Coeliac Societies, Brussels, Belgium
| | - Lorenzo Norsa
- Paediatric Hepatology, Gastroenterology and Transplantation, ASST Papa Giovanni XXIII, Bergamo, Italy
| | - Enriqueta Roman
- Paediatric Gastroenterology and Nutrition, Hospital Universitario Puerta de Hierro, Majadahonda, Spain
| | - Anita Vreugdenhil
- Department of Pediatrics, NUTRIM School of Nutrition and Translational Research in Metabolism, Maastricht University Medical Centre, Maastricht, The Netherlands
| | - Ricardo Fueyo-Díaz
- Department of Psychology and Sociology, Aragonese Primary Care Research Group (GAIAP, B21_20R), University of Zaragoza, Zaragoza, Spain
| | - Carmen Ribes-Koninckx
- Paediatric Gastroenterology, Hepatology and Nutrition, La Fe University Hospital & La Fe Research Institute, Valencia, Spain
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Guandalini S, Sansotta N. Celiac disease in pediatric patients. PEDIATRIC AND ADULT CELIAC DISEASE 2024:77-101. [DOI: 10.1016/b978-0-443-13359-6.00010-8] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 01/03/2025]
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Mozzillo E, Marigliano M, Cuccurullo I, Berchielli F, Auricchio R, Maffeis C, Maria Rosanio F, Iafusco D, Pedrolli C, Pertile R, Delvecchio M, Passanisi S, Salzano G, Di Candia F, Franceschi R. Maintaining the gluten-free diet: The key to improve glycemic metrics in youths with type 1 diabetes and celiac disease. Diabetes Res Clin Pract 2024; 207:111074. [PMID: 38142746 DOI: 10.1016/j.diabres.2023.111074] [Citation(s) in RCA: 3] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/23/2023] [Revised: 12/13/2023] [Accepted: 12/18/2023] [Indexed: 12/26/2023]
Abstract
AIMS Gluten-free diets (GFD) were considered as high glycemic index and/or high content of saturated fats; this could affect keeping good metabolic control in individuals with both type 1 diabetes (T1D) and celiac disease (CD). Our objective was to analyze time in range and other continuous glucose monitoring (CGM) metrics with real-time CGM systems, in youths with T1D and CD, compared to those with T1D only. METHODS An observational case-control study, comparing youths aged 8-18 years with T1D and CD, with people with T1D only was performed. The degree of maintaining GFD was assessed through anti-tissue transglutaminase antibodies and dietary interview, and maintaining Mediterranean diet through the KIDMED questionnaire. RESULTS 86 youths with T1D and CD, 167 controls with T1D only, were included in the study and the two groups reported similar real-time CGM metrics. Among the first group, 29 % were not completely maintaining GFD and compared to people with T1D only they showed higher hyperglycemia rates (% time above range: 38.72 ± 20.94 vs 34.34 ± 20.94; P = 0.039). CONCLUSIONS Individuals with T1D and CD who maintain GFD presented similar glucose metrics compared to youths with T1D only. Individuals not strictly maintaining GFD presented higher hyperglycemia rates.
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Affiliation(s)
- Enza Mozzillo
- Department of Translational Medical Science, University of Naples Federico II, Naples, Italy; European Laboratory for the Investigation of Food-Induced Diseases, University of Naples Federico II, Naples, Italy
| | - Marco Marigliano
- Department of Surgery, Dentistry, Pediatrics and Gynecology, Section of Pediatric Diabetes and Metabolism, University and Azienda Ospedaliera Universitaria Integrata of Verona, Verona, Italy
| | - Irene Cuccurullo
- Department of Translational Medical Science, University of Naples Federico II, Naples, Italy
| | | | - Renata Auricchio
- Department of Translational Medical Science, University of Naples Federico II, Naples, Italy; European Laboratory for the Investigation of Food-Induced Diseases, University of Naples Federico II, Naples, Italy
| | - Claudio Maffeis
- Department of Surgery, Dentistry, Pediatrics and Gynecology, Section of Pediatric Diabetes and Metabolism, University and Azienda Ospedaliera Universitaria Integrata of Verona, Verona, Italy
| | - Francesco Maria Rosanio
- Department of Translational Medical Science, University of Naples Federico II, Naples, Italy
| | - Dario Iafusco
- Department of Woman, Child and General and Specialistic Surgery, Regional Center of Pediatric Diabetes, University of Campania "L. Vanvitelli", Naples, Italy
| | - Carlo Pedrolli
- Dietology Unit, S. Chiara General Hospital, APSS, Trento, Italy
| | - Riccardo Pertile
- Clinical and Evaluative Epidemiology Unit, Department of Governance, APSS, Trento, Italy
| | - Maurizio Delvecchio
- Metabolic Disorders and Diabetes Unit, "Giovanni XXIII" Children's Hospital, Azienda Ospedaliero-Universitaria (AOU) Policlinico-Giovanni XXIII, Bari, Italy
| | - Stefano Passanisi
- Department of Human Pathology of Adulthood and Childhood G. Barresi, University of Messina, Messina, Italy
| | - Giuseppina Salzano
- Department of Human Pathology of Adulthood and Childhood G. Barresi, University of Messina, Messina, Italy
| | - Francesca Di Candia
- Department of Translational Medical Science, University of Naples Federico II, Naples, Italy.
| | - Roberto Franceschi
- Department of Pediatrics, S. Chiara Hospital of Trento, APSS, Trento, Italy
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Girard C, De Percin A, Morin C, Talvard M, Fortenfant F, Congy-Jolivet N, Le Tallec C, Olives JP, Mas E. Accuracy of Serological Screening for the Diagnosis of Celiac Disease in Type 1 Diabetes Children. MEDICINA (KAUNAS, LITHUANIA) 2023; 59:1321. [PMID: 37512132 PMCID: PMC10386403 DOI: 10.3390/medicina59071321] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 06/06/2023] [Revised: 07/12/2023] [Accepted: 07/14/2023] [Indexed: 07/30/2023]
Abstract
Background and Objectives: Patients with type 1 diabetes (T1D) are considered at high-risk for developing celiac disease (CD). The purpose of our study was to determine the prevalence of CD among children who were followed in our unit for T1D using the latest ESPGHAN guidelines, and avoiding intestinal biopsies in some of the children. Materials and Methods: We performed a prospective monocentric study, which included 663 T1D children between June 2014 and June 2016. We considered CD according to serological (tissue transglutaminase (TGAs) and endomysium antibodies) results. Children were included either at the time of T1D diagnosis or during their follow up. We looked for clinical and biochemical signs of CD, and for T1D characteristics. Results: The children's ages ranged from 11 months to 18 years. CD was confirmed in 32 out of 663 patients with T1D, with a prevalence of 4.8%. CD was excluded in 619 children and remained uncertain for 12 children, who had positive TGAs without the required criteria. We found that 95% of T1D children express HLA-DQ2 and/or -DQ8, which was 2.4 times higher than in the general population. Conclusions: An intestinal biopsy could be avoided to confirm CD in the majority of T1D children. Silent forms of CD are frequent and screening is recommended for all patients. Importantly, repeated TGA assessment is required in HLA genetically predisposed T1D patients, while it is unnecessary in the 5% who are HLA-DQ2 and -DQ8 negative.
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Affiliation(s)
- Chloé Girard
- Service de Gastroentérologie, Hépatologie, Nutrition, Diabétologie et Maladies Héréditaires du Métabolisme, Hôpital des Enfants, CHU de Toulouse, 31059 Toulouse, France
| | - Aurélie De Percin
- Service de Gastroentérologie, Hépatologie, Nutrition, Diabétologie et Maladies Héréditaires du Métabolisme, Hôpital des Enfants, CHU de Toulouse, 31059 Toulouse, France
| | - Carole Morin
- Service de Gastroentérologie, Hépatologie, Nutrition, Diabétologie et Maladies Héréditaires du Métabolisme, Hôpital des Enfants, CHU de Toulouse, 31059 Toulouse, France
| | - Maeva Talvard
- Service de Gastroentérologie, Hépatologie, Nutrition, Diabétologie et Maladies Héréditaires du Métabolisme, Hôpital des Enfants, CHU de Toulouse, 31059 Toulouse, France
| | | | - Nicolas Congy-Jolivet
- Department of Immunology, Rangueil Hospital, 31400 Toulouse, France
- Molecular Immunogenetics Laboratory, EA 3034, Faculty of Medicine Purpan, IFR150 (INSERM), 31400 Toulouse, France
| | - Claire Le Tallec
- Service de Gastroentérologie, Hépatologie, Nutrition, Diabétologie et Maladies Héréditaires du Métabolisme, Hôpital des Enfants, CHU de Toulouse, 31059 Toulouse, France
| | - Jean-Pierre Olives
- Service de Gastroentérologie, Hépatologie, Nutrition, Diabétologie et Maladies Héréditaires du Métabolisme, Hôpital des Enfants, CHU de Toulouse, 31059 Toulouse, France
- Faculté de Médecine, Université de Toulouse III, UPS, 31400 Toulouse, France
| | - Emmanuel Mas
- Service de Gastroentérologie, Hépatologie, Nutrition, Diabétologie et Maladies Héréditaires du Métabolisme, Hôpital des Enfants, CHU de Toulouse, 31059 Toulouse, France
- Institut de Recherche en Santé Digestive (IRSD), Université de Toulouse, INSERM, INRAE, ENVT, UPS, 31300 Toulouse, France
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Gluten-Free Diet in Co-Existent Celiac Disease and Type 1 Diabetes Mellitus: Is It Detrimental or Beneficial to Glycemic Control, Vascular Complications, and Quality of Life? Nutrients 2022; 15:nu15010199. [PMID: 36615856 PMCID: PMC9824312 DOI: 10.3390/nu15010199] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/12/2022] [Revised: 12/28/2022] [Accepted: 12/29/2022] [Indexed: 01/03/2023] Open
Abstract
Celiac disease (CeD) is associated with type 1 diabetes mellitus (T1DM), and both have the same genetic background. Most patients with T1DM who develop CeD are either asymptomatic or have mild CeD-related gastrointestinal symptoms. Therefore, children affected by T1DM should undergo screening for asymptomatic CeD. The aim of this review is to highlight the influence of a gluten-free diet (GFD) on glycemic control, growth rate, microvascular complications, and quality of life in patients with T1DM and CeD. PubMed, Google Scholar, Web of Science, and Cochrane Central databases were searched. Reports reviewed were those published from 1969 to 2022 that focused on the interplay of T1DM and CeD and examined the effect of diet on glycemic control, growth rate, and quality of life. The most challenging aspect for a child with T1DM and CeD is that most GFD foods have a high glycemic index, while low glycemic index foods are recommended for T1DM. Interestingly, dietary therapy for CeD could improve the elevated HbA1c levels. Avoiding gluten added to a diabetic dietary regimen in T1DM patients might impose practical limitations and lead to important restrictions in the lifestyle of a young patient. Consequently, non-adherence to GFD in patients with T1DM and CeD is common. GFD in patients with T1DM and CeD seems to lower the incidence of micro- and macrovascular complications, but this requires further investigation. It seems that adherence to GFD in young patients with T1DM and CeD leads to regular growth and a stable body mass index without any negative effect on HbA1c or insulin requirements. Furthermore, the lipid profile and quality of life seem to have improved with the introduction of GFD.
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Johansson K, Norström F, Green PHR, Ivarsson A, Richter Sundberg L, Själander A, Myleus A. Celiac disease and upper secondary school achievement in Sweden A retrospective cohort study. BMC Pediatr 2022; 22:709. [PMID: 36503420 PMCID: PMC9743674 DOI: 10.1186/s12887-022-03773-6] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/31/2022] [Accepted: 11/24/2022] [Indexed: 12/14/2022] Open
Abstract
BACKGROUND Both undiagnosed celiac disease and some chronic childhood diseases are associated with lower academic achievement. However, there is little knowledge of achievements in those diagnosed with celiac disease. Our aim was to investigate school achievements in upper secondary school among Swedish adolescents with celiac disease. METHODS We performed a retrospective cohort study using register data. We analyzed choice of upper secondary school program, completion of upper secondary school including achievements of basic eligibility for college/university, and final grade in individuals with celiac disease diagnosed before 15 years of age, born 1991-97. We compared with the Swedish population of the same birth years. Analyses were adjusted for sex, year of birth, living region at 17 years of age, and parental education as well as income. RESULTS The cohort included 734 074 individuals, whereof 3 257 (62% females) with celiac disease. There was no significant difference in choice of upper secondary school program. No significant difference was found in completion or achieving basic eligibility for college/university in adjusted analyses. The mean final grade in the celiac disease group was 13.34 (standard deviation 4.85) compared to 12.78 (standard deviation 5.01) in the reference population (p < 0.001), out of a maximum of 20. The effect of celiac disease on final grade remained in adjusted analyses (p = 0.012). CONCLUSIONS We found that diagnosed celiac disease does not negatively affect school achievements in upper secondary school. This finding suggests the diagnosis, treatment and follow-up programs of celiac disease could reverse potential deleterious academic processes.
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Affiliation(s)
- Katarina Johansson
- Department of Public Health and Clinical Medicine, Umeå University, 901 87, Sundsvall, Sweden.
| | - Fredrik Norström
- Department of Epidemiology and Global Health, Umeå University, 901 87, Umeå, Sweden
| | - Peter H R Green
- Department of Medicine, Celiac Disease Center, Columbia University College of Physicians and Surgeons, Columbia University, New York, NY, USA
| | - Anneli Ivarsson
- Department of Epidemiology and Global Health, Umeå University, 901 87, Umeå, Sweden
| | | | - Anders Själander
- Department of Public Health and Clinical Medicine, Umeå University, 901 87, Sundsvall, Sweden
| | - Anna Myleus
- Department of Public Health and Clinical Medicine, Umeå University, 901 87, Umeå, Sweden
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12
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Characterization of the recombinant PepX peptidase from Lactobacillus fermentum and its effect on gliadin protein hydrolysis in vitro. Biologia (Bratisl) 2022. [DOI: 10.1007/s11756-022-01273-7] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/29/2022]
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13
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Mozzillo E, Franceschi R, Di Candia F, Rosanio FM, Leonardi L, Fedi L, Rosà V, Cauvin V, Franzese A, Loredana Marcovecchio M. The impact of gluten-free diet on growth, metabolic control and quality of life in youth with type 1 diabetes and celiac disease: A systematic review. Diabetes Res Clin Pract 2022; 191:110032. [PMID: 35934174 DOI: 10.1016/j.diabres.2022.110032] [Citation(s) in RCA: 18] [Impact Index Per Article: 6.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/27/2022] [Revised: 07/06/2022] [Accepted: 08/01/2022] [Indexed: 12/16/2022]
Abstract
AIMS To evaluate the impact of gluten free diet (GFD) on growth, metabolic control and quality of life in children and adolescents with type 1 diabetes (T1D) and celiac disease (CD). METHODS A systematic search was performed including studies published in the last 15 years. PICOS framework was used in the selection process and evidence was assessed using the GRADE system. RESULTS Overall, studies comparing youth with T1D + CD on GFD to those with T1D only, showed no significant differences in growth parameters, HbA1c, number of episodes of hypoglycemia, total daily insulin doses. Studies assessing the effect of GFD introduction showed stable BMI and HbA1c. Only two studies assessed QoL of life, which was not different between T1D + CD vs T1D only youth, as well as pre- and post-CD diagnosis and introduction of GFD. CONCLUSION This systematic review, including only studies of moderate-high evidence quality level and reporting data on objectively assessed adherence to GFD, highlights that adherence to GFD in youth with T1D + CD leads to regular growth, stable BMI, without any negative effect on HbA1c and insulin requirements. Although assessed in few studies, lipid profile and QoL improved with the introduction of GFD.
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Affiliation(s)
- Enza Mozzillo
- Department of Translational Medical Science, Section of Pediatrics, Regional Center of Pediatric Diabetes, Federico II University of Naples, Naples, Italy
| | - Roberto Franceschi
- Pediatric Diabetology Unit, Pediatric Department, S. Chiara General Hospital, Trento, Italy.
| | - Francesca Di Candia
- Department of Translational Medical Science, Section of Pediatrics, Regional Center of Pediatric Diabetes, Federico II University of Naples, Naples, Italy
| | - Francesco Maria Rosanio
- Department of Translational Medical Science, Section of Pediatrics, Regional Center of Pediatric Diabetes, Federico II University of Naples, Naples, Italy
| | - Letizia Leonardi
- Pediatric Diabetology Unit, Pediatric Department, S. Chiara General Hospital, Trento, Italy
| | - Ludovica Fedi
- Department of Translational Medical Science, Section of Pediatrics, Regional Center of Pediatric Diabetes, Federico II University of Naples, Naples, Italy
| | - Valentina Rosà
- Pediatric Diabetology Unit, Pediatric Department, S. Chiara General Hospital, Trento, Italy
| | - Vittoria Cauvin
- Department of Translational Medical Science, Section of Pediatrics, Regional Center of Pediatric Diabetes, Federico II University of Naples, Naples, Italy
| | - Adriana Franzese
- Pediatric Diabetology Unit, Pediatric Department, S. Chiara General Hospital, Trento, Italy
| | - M Loredana Marcovecchio
- Department of Paediatrics, University of Cambridge and Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK
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Kostecka M, Kostecka-Jarecka J, Iłowiecka K, Kostecka J. An Evaluation of Nutritional Status and Problems with Dietary Compliance in Polish Patients with Celiac Disease. Nutrients 2022; 14:nu14132581. [PMID: 35807762 PMCID: PMC9268093 DOI: 10.3390/nu14132581] [Citation(s) in RCA: 10] [Impact Index Per Article: 3.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/10/2022] [Revised: 06/07/2022] [Accepted: 06/19/2022] [Indexed: 02/04/2023] Open
Abstract
Celiac disease (CD, enteropathy) is a genetic autoimmune disease (abnormal immune response that attacks healthy tissues) associated with gluten intolerance. The aim of this study was to evaluate and monitor the nutritional status of CD patients, explore the problems associated with diet planning and dietary adherence among children and adults, and assess the impact of these factors on the persistence of CD symptoms. This study was carried out as part of the project entitled “A gluten-free diet without obstacles—eating well and healthy” (POWR 03.01.00-00-T153/18), conducted in Lublin Voivodeship. The study involved 87 persons, including 23 children younger than 18. At the beginning of the study and after nine months, all adult participants (older than 18) were subjected to a body composition analysis with the SECA mBCA 515 analyzer. During the project, the participants attended three consultations with a dietician. During each visit, the subjects’ body weight, nutritional status and diets were evaluated; their diets were modified, and problems relating to dietary adherence were resolved. The initial body composition analysis revealed a risk of sarcopenic obesity in 30% of adult participants, in particular in women (p = 0.003) older than 45 (p = 0.001). The risk of being underweight was diagnosed in 25% of the subjects, in particular, in women younger than 35 (p = 0.0023) and in participants who had been affected by short stature and underweight in childhood, i.e., before CD diagnosis (p = 0.0024). The analysis demonstrated that patients with gastrointestinal symptoms (abdominal pain, diarrhea, vomiting) of CD were significantly more likely to avoid even accidental exposure to gluten and were more likely to strictly follow GFD recommendations (1.97; 95CI:1.56–2.12, p = 0.0001) and safety guidelines when preparing meals at home (1.76; 95CI: 1.34–192, p = 0.0023). Parents, in particular, parents of toddlers and preschoolers who are at significantly higher risk of CD, adhered strictly to dietary guidelines and did not allow for any exceptions when preparing meals (1.88; 95CI: 1.53–2.09, p = 0.001). Persons at risk of malnutrition were also far less likely to deliberately choose gluten-containing foods (0.74; 95CI: 0.53–0.91, p = 0.021), in particular, patients with Marsh type 3a and 3b classification (p = 0.01) and persons whose intestinal histology scores did not fully improve after switching to a GFD. An assessment of the effectiveness of diet therapy based on the phase angle revealed that dietary recommendations had a positive impact on patients who had been recently diagnosed with CD. In all age groups, the main problem was accidental exposure to gluten, in particular in foods that were not labeled with the crossed grain symbol. A comparative analysis of CDAT questionnaires revealed that dietary advice on eating out significantly improved adherence to a GFD and reduced the frequency of unintentional gluten exposure in all age groups.
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Affiliation(s)
- Malgorzata Kostecka
- Department of Chemistry, Faculty of Food Science and Biotechnology, University of Life Sciences, Akademicka 15, 20-950 Lublin, Poland
- Correspondence: ; Tel.: +48-814-456-846
| | | | - Katarzyna Iłowiecka
- Department of Food and Nutrition, Medical University of Lublin, Chodźki 4a, 20-093 Lublin, Poland;
| | - Julianna Kostecka
- Faculty of Medicine, Medical University of Lublin, Chodźki 19, 20-093 Lublin, Poland;
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15
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Pasternack C, Hervonen K, Mansikka E, Reunala T, Kaukinen K, Salmi T. Sex-differences in Gluten-free Dietary Adherence and Clinical Symptoms in Patients with Long-term Treated Dermatitis Herpetiformis. Acta Derm Venereol 2022; 102:adv00713. [PMID: 35393627 PMCID: PMC9558333 DOI: 10.2340/actadv.v102.1072] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/23/2022] Open
Abstract
Dermatitis herpetiformis is a blistering autoimmune skin disease, and a cutaneous manifestation of coeliac disease. The burden of coeliac disease is increased especially in females, but studies concerning sex differences in patients with long-term treated dermatitis herpetiformis are scarce. This questionnaire study compared adherence to a gluten-free diet, clinical symptoms and well-being between females and males in a cohort of 237 long-term treated (median 24 years) patients with dermatitis herpetiformis. Females had better adherence to a gluten-free diet (p = 0.022) and they used dapsone significantly less often at the time of the study than did males (4% vs 13%, p = 0.017). The occurrence of skin symptoms was equal in both sexes, but dermatological quality of life was lower in females (p = 0.024), and gastrointestinal symptoms were more severe among females with dermatitis herpetiformis than among males (p = 0.027). In conclusion, long-term treated female patients with dermatitis herpetiformis have better adherence to a gluten-free diet, but they also experience more severe clinical symptoms compared with males.
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Affiliation(s)
- Camilla Pasternack
- Celiac Disease Research Center, Faculty of Medicine and Health Technology, Tampere University, Tampere, Finland.
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16
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20-Year Follow-up Study of Celiac Patients Identified in a Mass School Screening: Compliance to Gluten-Free Diet and Autoimmunity. J Pediatr Gastroenterol Nutr 2022; 74:91-95. [PMID: 34508048 DOI: 10.1097/mpg.0000000000003295] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/17/2022]
Abstract
OBJECTIVES To investigate the compliance to the gluten-free diet in a cohort of adult celiac patients 20 years after the diagnosis, received in childhood through a mass screening. METHODS This is an observational historic cohort follow-up study. It was carried out at the Institute for Maternal and Child Health IRCCS Burlo Garofolo, Trieste, Italy. Two matched cohorts of adult celiac patients, diagnosed in childhood through a mass screening or for symptoms were enrolled. Adherence to the gluten free-diet and development of autoimmune diseases were investigated through a questionnaire administrated in the course of a phone interview.The primary study outcome was the adherence to the gluten-free diet, measured through the Biagi questionnaire, in the two cohorts of celiac patients. RESULTS We contacted 25 patients (mean age 28 years, 19 females) diagnosed with screening and 34 patients (mean age 25 years, 26 females) diagnosed in the same period for symptoms. After 20 years, in the cohort diagnosed with screening and in the cohort diagnosed for symptoms the adherence to the gluten-free diet was optimal in 14 (56%) and 26 (81%), improvable in 5 (20%) and 3 (9%), inadequate in 6 (24%) and 3 (9%), respectively. In the two cohorts, four patients (16%) and six patients (18%) developed other autoimmune diseases. CONCLUSIONS Twenty years after the diagnosis, near half of the patients diagnosed in a mass screening, does not have an optimal adherence to the gluten-free diet and a remarkable proportion of them have developed another autoimmune disease.
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Taşdelen Baş M, Çavuşoğlu H, Bükülmez A. Peer-Interactıon Group Support in Adolescents with Celiac Disease: A Randomized Controlled Study in Turkey. CHILD & YOUTH CARE FORUM 2021. [DOI: 10.1007/s10566-021-09664-8] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/25/2022]
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18
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Akhavan Sabbagh M, Mahdavi R, Shirmohammadi M, Nikniaz Z. Barriers of Adherence to a Gluten-Free Diet in Iranian Adults With Celiac Disease. Gastroenterol Nurs 2021; 44:320-327. [PMID: 34319935 DOI: 10.1097/sga.0000000000000575] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/03/2020] [Accepted: 09/29/2020] [Indexed: 11/25/2022] Open
Abstract
This cross-sectional study aimed to evaluate and classify barriers to adherence to the gluten-free diet in 137 Iranian adults with celiac disease. We used a 23-point Likert questionnaire and exploratory factor analysis to identify and classify the barriers. Adherence to gluten-free diet was assessed by measuring the serum level of anti-tTG-IgA. The correlation between the barriers and adherence to gluten-free diet was assessed using logistic regression. A total of 117 subjects completed the study. Seven factors were extracted: "gluten-free diet restrictions," "self-awareness and social awareness," "psychological barriers," "education," "situational barriers and gatherings," "lack of access/labeling," and "cost." There was a significant correlation between the situational barriers and gatherings and nonadherence to the diet in the adjusted model (odds ratio = 1.63; 95% confidence interval [1.03, 2.54], p = .03). Nutritionists and physicians should consider these barriers when consulting patients with celiac disease.
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Affiliation(s)
- Mojgan Akhavan Sabbagh
- Mojgan Akhavan Sabbagh, MS, is in Student Research Committee, Tabriz University of Medical Sciences, Tabriz, Iran
- Reza Mahdavi, PhD, is at Nutrition Research Center, Tabriz University of Medical Sciences, Tabriz, Iran
- Masood Shirmohammadi, MD, is a gastroenterologist at Liver and Gastrointestinal Diseases Research Center, Tabriz University of Medical Sciences, Tabriz, Iran
- Zeinab Nikniaz, PhD, is at Liver and Gastrointestinal Diseases Research Center, Tabriz University of Medical Sciences, Tabriz, Iran
| | - Reza Mahdavi
- Mojgan Akhavan Sabbagh, MS, is in Student Research Committee, Tabriz University of Medical Sciences, Tabriz, Iran
- Reza Mahdavi, PhD, is at Nutrition Research Center, Tabriz University of Medical Sciences, Tabriz, Iran
- Masood Shirmohammadi, MD, is a gastroenterologist at Liver and Gastrointestinal Diseases Research Center, Tabriz University of Medical Sciences, Tabriz, Iran
- Zeinab Nikniaz, PhD, is at Liver and Gastrointestinal Diseases Research Center, Tabriz University of Medical Sciences, Tabriz, Iran
| | - Masood Shirmohammadi
- Mojgan Akhavan Sabbagh, MS, is in Student Research Committee, Tabriz University of Medical Sciences, Tabriz, Iran
- Reza Mahdavi, PhD, is at Nutrition Research Center, Tabriz University of Medical Sciences, Tabriz, Iran
- Masood Shirmohammadi, MD, is a gastroenterologist at Liver and Gastrointestinal Diseases Research Center, Tabriz University of Medical Sciences, Tabriz, Iran
- Zeinab Nikniaz, PhD, is at Liver and Gastrointestinal Diseases Research Center, Tabriz University of Medical Sciences, Tabriz, Iran
| | - Zeinab Nikniaz
- Mojgan Akhavan Sabbagh, MS, is in Student Research Committee, Tabriz University of Medical Sciences, Tabriz, Iran
- Reza Mahdavi, PhD, is at Nutrition Research Center, Tabriz University of Medical Sciences, Tabriz, Iran
- Masood Shirmohammadi, MD, is a gastroenterologist at Liver and Gastrointestinal Diseases Research Center, Tabriz University of Medical Sciences, Tabriz, Iran
- Zeinab Nikniaz, PhD, is at Liver and Gastrointestinal Diseases Research Center, Tabriz University of Medical Sciences, Tabriz, Iran
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Miró M, Alonso-Garrido M, Lozano M, Peiró J, Manyes L. Adherence to dietary treatment and clinical factors associated with anti-transglutaminase antibodies in celiac disease during the follow-up. Heliyon 2021; 7:e06642. [PMID: 33889773 PMCID: PMC8047491 DOI: 10.1016/j.heliyon.2021.e06642] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/25/2020] [Revised: 01/30/2021] [Accepted: 03/26/2021] [Indexed: 11/30/2022] Open
Abstract
INTRODUCTION In clinical practice, celiac disease (CD) is monitored through anti-transglutaminase (TGA-IgA) antibody levels. The normalization of serum levels in successive periodic measurements indicates good response and adherence to dietary treatment. OBJECTIVES To evaluate the factors associated with the evolution of TGA-IgA antibodies and their association with dietary non-compliance and diseases related to CD. METHODS This prospective observational study was carried out in 254 participants, who were recruited from patients from a hospital in southern Spain. Information about sex, age, serological test results, HLA DQ2/DQ8 haplotypes, mucosal atrophy, gastrointestinal and extra-intestinal symptoms, as well as diagnosis of diseases related to CD, was collected. RESULTS Clinical manifestations, such as diarrhoea, abdominal pain and weight loss, showed differences according to sex and age. Children under 18 years of age presented a degree of total or severe atrophy of the intestinal villi. TGA-IgA antibodies concentrations were directly associated with the number of digestive disorders manifested by the patient and the record of dietary non-compliance and inversely related to the number of extra-digestive disorders. CONCLUSIONS Adolescents between 12 and 18 years old were the least monitored as well as the group with more extra-intestinal symptoms reported. Therefore, it is necessary to develop strategies in clinical practice aimed at this population group and continuous monitoring should be implemented to improve life quality and reduce complications that may arise in the long term.
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Affiliation(s)
- Marta Miró
- Preventive Medicine and Public Health, Food Sciences, Toxicology and Forensic Medicine Department, Universitat de València, Valencia, Spain
| | - Manuel Alonso-Garrido
- Preventive Medicine and Public Health, Food Sciences, Toxicology and Forensic Medicine Department, Universitat de València, Valencia, Spain
| | - Manuel Lozano
- Preventive Medicine and Public Health, Food Sciences, Toxicology and Forensic Medicine Department, Universitat de València, Valencia, Spain
- Epidemiology and Environmental Health Joint Research Unit, FISABIO−Universitat Jaume I−Universitat de València, Valencia, Spain
| | - Juanjo Peiró
- Department of Statistics and Operations Research, University of Valencia, Valencia, Spain
| | - Lara Manyes
- Preventive Medicine and Public Health, Food Sciences, Toxicology and Forensic Medicine Department, Universitat de València, Valencia, Spain
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Pedoto D, Troncone R, Massitti M, Greco L, Auricchio R. Adherence to Gluten-Free Diet in Coeliac Paediatric Patients Assessed through a Questionnaire Positively Influences Growth and Quality of Life. Nutrients 2020; 12:E3802. [PMID: 33322343 PMCID: PMC7764452 DOI: 10.3390/nu12123802] [Citation(s) in RCA: 13] [Impact Index Per Article: 2.6] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/18/2020] [Revised: 12/04/2020] [Accepted: 12/08/2020] [Indexed: 12/12/2022] Open
Abstract
Assessment of adherence to gluten-free diet (GFD) represents the cornerstone in the management of coeliac disease. The primary aim of this study was to assess diet adherence through a questionnaire adapted to children. The secondary aim was to identify influencing factors and outcomes related to diet adherence. In this study, data about diagnosis, education, quality of life (QoL) and anti-transglutaminase (anti-TG2) titers of 160 coeliac children were collected. For the assessment of diet adherence, all participants completed the questionnaire modified from Leffler et al. (2009), while a random sample of 37 also underwent an extensive dietary interview. According to the questionnaire, diet adherence was excellent in 95 (59.4%), fair in 46 (28.8%) and low in 19 (11.9%) patients. Children diagnosed with biopsy showed better adherence than those with a biopsy-sparing approach (p = 0.036). Adherence to GFD tended to worsen during the follow up, with the average length of follow up being associated with lower scores of diet adherence (p = 0.009). Moreover, adherence to GFD decreased throughout school career, dropping from elementary until high school (p = 0.037). A positive correlation was observed between adherence to GFD and growth percentiles, which increased when higher scores of adherence were achieved. Diet adherence positively correlated with QoL (p = 0.001). In conclusion, the questionnaire displayed good sensitivity in detecting problems in diet adherence, being useful as a screening tool. Better comprehension of influencing factors and outcomes may allow the development of new strategies to improve diet adherence.
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Affiliation(s)
- Deianira Pedoto
- Department of Medical Translational Sciences, University Federico II, 80131 Naples, Italy; (R.T.); (M.M.); (L.G.); (R.A.)
| | - Riccardo Troncone
- Department of Medical Translational Sciences, University Federico II, 80131 Naples, Italy; (R.T.); (M.M.); (L.G.); (R.A.)
- European Laboratory for the Investigation of Food-Induced Diseases, University Federico II, 80131 Naples, Italy
| | - Margherita Massitti
- Department of Medical Translational Sciences, University Federico II, 80131 Naples, Italy; (R.T.); (M.M.); (L.G.); (R.A.)
| | - Luigi Greco
- Department of Medical Translational Sciences, University Federico II, 80131 Naples, Italy; (R.T.); (M.M.); (L.G.); (R.A.)
- European Laboratory for the Investigation of Food-Induced Diseases, University Federico II, 80131 Naples, Italy
| | - Renata Auricchio
- Department of Medical Translational Sciences, University Federico II, 80131 Naples, Italy; (R.T.); (M.M.); (L.G.); (R.A.)
- European Laboratory for the Investigation of Food-Induced Diseases, University Federico II, 80131 Naples, Italy
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Evaluation of Daily Lives of Children and Adolescents with Celiac Disease and Nursing Approaches. Gastroenterol Nurs 2020; 43:E202-E213. [PMID: 33259438 DOI: 10.1097/sga.0000000000000509] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/06/2023] Open
Abstract
The incidence of celiac disease has been increasing in recent years. Celiac disease is an autoimmune enteropathy that emerges mostly in the childhood period. This disorder is a chronic condition of the small intestine due to gluten intake in individuals with genetic predisposition. In the treatment of celiac disease, gluten-free diet therapy is applied. However, the adaptation process to the diet may create difficulties for patients. Compliance with diet is much more difficult among patients with celiac disease in childhood and adolescence than in adult patients. Children and adolescents face distinct difficulties in their homes, at school, and in their social lives. Besides following dietary treatment, children and adolescents living with celiac disease need peer support to manage their daily routines. In this article, we aimed to discuss the problems experienced by children and adolescents living with celiac disease and nursing approaches to these problems.
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Russo C, Wolf RL, Leichter HJ, Lee AR, Reilly NR, Zybert P, Green PHR, Lebwohl B. Impact of a Child's Celiac Disease Diagnosis and Management on the Family. Dig Dis Sci 2020; 65:2959-2969. [PMID: 32415563 DOI: 10.1007/s10620-020-06316-0] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/17/2020] [Accepted: 05/02/2020] [Indexed: 02/06/2023]
Abstract
BACKGROUND Little attention has been paid to family-wide repercussions of a child's celiac disease diagnosis and concomitant gluten-free diet management. AIMS We quantitatively and qualitatively describe positive and negative family-wide effects of a child's celiac disease diagnosis and disease management. METHODS We interviewed 16 families with at least one child currently following a gluten-free diet, with a biopsy-confirmed celiac disease diagnosis ≥ 1 year prior. Mothers and fathers independently rated child's dietary adherence, concern about child's health status, burden in caring for child's dietary needs, and level of change in various aspects of life post- diagnosis. Children rated their own celiac-specific quality of life through a validated scale. Seventy-one in-depth semi-structured interviews were conducted with 16 children with celiac disease, 31 parents, and 24 siblings. RESULTS Mothers and fathers rated the effects of their child's celiac disease differently, with mothers reporting more lifestyle changes and heavier burden. Negative and positive themes emerged from the interviews. Mothers felt the burden of managing a gluten-free diet. Fathers felt guilty for carrying a celiac disease-associated gene and both fathers and siblings regretted limited food choices at restaurants and home. The need to be a more creative cook was seen as a positive effect by mothers. Fathers appreciated new family traditions. Siblings felt they had developed empathy for others. A framework is proposed to illustrate these family-wide interactions. CONCLUSIONS A child's celiac disease diagnosis and disease management affects the entire family. Our results will inform family-centered interventions that maximize quality of life for families.
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Affiliation(s)
- Carrie Russo
- Program in Nutrition, Department of Health and Behavioral Studies, Teachers College, Columbia University, 525 West 120th Street, Box 137, New York, NY, 10027, USA.
| | - Randi L Wolf
- Program in Nutrition, Department of Health and Behavioral Studies, Teachers College, Columbia University, 525 West 120th Street, Box 137, New York, NY, 10027, USA
| | - Hope J Leichter
- Department of International and Transcultural Studies, Teachers College, Columbia University, New York, NY, 10027, USA
| | - Anne R Lee
- Celiac Disease Center, Columbia University Irving Medical Center, New York, NY, 10032, USA
| | - Norelle R Reilly
- Celiac Disease Center, Columbia University Irving Medical Center, New York, NY, 10032, USA
| | - Patricia Zybert
- Program in Nutrition, Department of Health and Behavioral Studies, Teachers College, Columbia University, 525 West 120th Street, Box 137, New York, NY, 10027, USA
| | - Peter H R Green
- Celiac Disease Center, Columbia University Irving Medical Center, New York, NY, 10032, USA
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Adherence to Gluten-free Diet in a Celiac Pediatric Population Referred to the General Pediatrician After Remission. J Pediatr Gastroenterol Nutr 2020; 71:78-82. [PMID: 32097372 DOI: 10.1097/mpg.0000000000002676] [Citation(s) in RCA: 12] [Impact Index Per Article: 2.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/15/2022]
Abstract
OBJECTIVES Assessment of adherence to gluten-free diet in celiac disease (CD) is generally recommended. Few data are available about consequences of transition from the referral center to the general pediatrician (GP) once remission is achieved. METHODS Adherence was assessed in patients referred to the GP for an annual basis follow-up, called back for re-evaluation. Immunoglobulin A (IgA) antitissue transglutaminase (anti-tTG) antibodies and the Biagi score (BS) were determined at last follow-up at the referral center (V1), and at re-evaluation (V2). Patients were classified as adherent (BS 3-4, IgA anti-tTG <7 U/mL) and nonadherent (BS 0-2, IgA anti-tTG ≥7). Scores of adherence were correlated with personal and clinical data. RESULTS We evaluated 200 patients. Overall, we found good adherence rates in 94.95% of patients at V1 and 83.5% at V2. IgA anti-tTG were negative in 100% at V1 and 96.97% at V2. BS is 3 to 4 in 94.5% at V1 and 84% at V2. Adherence at V2 was significantly worse than V1 (P < 0.001). No significant associations were found between scores of adherence and sex, symptoms and age at diagnosis, family history of CD, comorbidity, and diagnosis by endoscopy. Age 13 years or older represents a risk factor for lack of compliance at V1 (P = 0.02) and V2 (P = 0.04), and foreign nationality at V2 (P = 0.001). CONCLUSIONS The BS, serology, and a clinical interview, integrated, are reliable tools for assessing pediatric adherence to gluten-free diet. We argue that referring patients to the GP after remission of CD is important, but the process must be improved and recommendations are required.
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Meyer S, Rosenblum S. Examining core self-management skills among adolescents with celiac disease. J Health Psychol 2020; 26:2592-2602. [PMID: 32441135 PMCID: PMC8458659 DOI: 10.1177/1359105320922304] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/20/2023] Open
Abstract
A strict gluten-free diet is the only treatment for celiac disease, and it is especially challenging among adolescents. Participation in food-related activities and self-managing the chronic health condition involve use of cognitive skills. This cross-sectional study examined how executive functions might be associated with participation in food-related activities. Adolescents aged 12-18 years (N = 65; Mage = 14.67) with celiac were interviewed about participation, and their parents completed an executive function questionnaire. Poorer participation significantly correlated with poorer executive abilities. Identifying executive function profiles may contribute to understanding and advancing resourceful daily functioning and participation in daily food-related activities.
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25
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Tokatly Latzer I, Lerner-Geva L, Stein D, Weiss B, Pinhas-Hamiel O. Disordered eating behaviors in adolescents with celiac disease. Eat Weight Disord 2020; 25:365-371. [PMID: 30368766 DOI: 10.1007/s40519-018-0605-z] [Citation(s) in RCA: 11] [Impact Index Per Article: 2.2] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/15/2018] [Accepted: 10/21/2018] [Indexed: 02/05/2023] Open
Abstract
PURPOSE Celiac disease (CD) is a chronic immune-mediated systemic disease characterized by inflammation and villous atrophy of the small intestine. A strict, lifelong gluten-free diet (GFD) is the only treatment for CD. Disordered eating behaviors (DEBs) prevail in adolescence and young adulthood, and confer a risk of developing into full-blown eating disorders. The aims of the current study were to assess the incidence and risk factors for DEBs among individuals with CD, and to examine an association between adherence to GFD and DEBs. METHODS A cohort of 136 individuals with CD responded to a web-mediated survey that assessed DEBs and adherence to a GFD. The survey included demographic data (gender, age, weight, disease duration) and two self-rating questionnaires: the Eating Attitudes Test-26 and the gluten-free diet questionnaire. RESULTS DEBs were found in 19% of female and 7% of male responders. These individuals were characterized by being overweight (p = 0.02), of an older age (p = 0.04) and female sex (p = 0.06). Strict adherence to a GFD was reported by 32% of the responders and was not correlated with age, disease duration, age at diagnosis of CD and with being overweight. CONCLUSIONS Caregivers should be aware of the increased occurrence of DEBs in adolescents with CD, especially those who are overweight, older and of a female gender. LEVEL OF EVIDENCE Level V, cross-sectional descriptive study.
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Affiliation(s)
- Itay Tokatly Latzer
- Department of Pediatrics A, Tel Aviv University, Tel Aviv, Israel.
- Affiliated to the Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel.
- Department of Pediatrics, Chaim Sheba Medical Center, Derech Sheba 2, 52621, Tel Hashomer, Israel.
| | - Liat Lerner-Geva
- Gertner Institute for Epidemiology and Health Policy Research, Tel Aviv University, Tel Aviv, Israel
- Affiliated to the Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel
| | - Daniel Stein
- Pediatric Psychosomatic Department, Tel Aviv University, Tel Aviv, Israel
- Affiliated to the Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel
| | - Batia Weiss
- Pediatric Gastroenterology Unit, Tel Aviv University, Tel Aviv, Israel
- Affiliated to the Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel
| | - Orit Pinhas-Hamiel
- Pediatric Endocrine and Diabetes Unit, Chaim Sheba Medical Center, Ramat-Gan, Israel
- Affiliated to the Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel
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26
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Kivelä L, Hekkala S, Huhtala H, Kaukinen K, Kurppa K. Lack of long-term follow-up after paediatric-adult transition in coeliac disease is not associated with complications, ongoing symptoms or dietary adherence. United European Gastroenterol J 2020; 8:157-166. [PMID: 32213072 DOI: 10.1177/2050640619900077] [Citation(s) in RCA: 13] [Impact Index Per Article: 2.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/19/2022] Open
Abstract
BACKGROUND Follow-up of coeliac disease is recommended to prevent complications associated with unsuccessful treatment. OBJECTIVE The objective of this article is to evaluate the implementation and significance of long-term follow-up. METHODS Medical data were collected from 585 and follow-up questionnaires sent to 559 current adult coeliac disease patients diagnosed in childhood. Diagnostic features and adulthood health outcomes were compared between those with and without adulthood follow-up. RESULTS Of paediatric patients, 92% were followed up 6-24 months after diagnosis. A total of 235 adults responded to the questionnaires a median of 18 years after diagnosis, and 25% of them reported regular follow-up. They were diagnosed more recently than those without follow-up (median year 2001 vs 1995, p = 0.001), being otherwise comparable at diagnosis. Those with follow-up were less often smokers (5% vs 16%, p = 0.042) and relatives of coeliac patients (48% vs 66%, p = 0.018), and more often students (48% vs 28%, p = 0.005) and type 1 diabetics (19% vs 4%, p = 0.001). Lack of follow-up was not associated with complications, ongoing symptoms, poorer general health or dietary adherence. All completely non-adherent patients were without follow-up. CONCLUSIONS Most coeliac disease patients diagnosed in childhood were not followed up according to recommendations in adulthood. The individual effect of this on long-term treatment outcomes varied markedly.
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Affiliation(s)
- Laura Kivelä
- Tampere Center for Child Health Research, Tampere University and Department of Paediatrics, Tampere University Hospital, Tampere, Finland.,University of Helsinki and Helsinki University Hospital, Children's Hospital, and Pediatric Research Center, Helsinki, Finland
| | - Sointu Hekkala
- Tampere Center for Child Health Research, Tampere University and Department of Paediatrics, Tampere University Hospital, Tampere, Finland.,Faculty of Medicine and Health Technology, Tampere University, Tampere, Finland
| | - Heini Huhtala
- Faculty of Social Sciences, Tampere University, Tampere, Finland
| | - Katri Kaukinen
- Faculty of Medicine and Health Technology, Tampere University, Tampere, Finland.,Department of Internal Medicine, Tampere University Hospital, Tampere, Finland.,Celiac Disease Research Center, Tampere University, Tampere, Finland
| | - Kalle Kurppa
- Tampere Center for Child Health Research, Tampere University and Department of Paediatrics, Tampere University Hospital, Tampere, Finland.,Faculty of Medicine and Health Technology, Tampere University, Tampere, Finland.,The University Consortium of Seinäjoki, Seinäjoki, Finland
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27
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Myléus A, Reilly NR, Green PHR. Rate, Risk Factors, and Outcomes of Nonadherence in Pediatric Patients With Celiac Disease: A Systematic Review. Clin Gastroenterol Hepatol 2020; 18:562-573. [PMID: 31173891 DOI: 10.1016/j.cgh.2019.05.046] [Citation(s) in RCA: 54] [Impact Index Per Article: 10.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/03/2019] [Revised: 05/21/2019] [Accepted: 05/24/2019] [Indexed: 12/11/2022]
Abstract
BACKGROUND AND AIMS The only treatment for celiac disease is strict adherence to a gluten-free diet (GFD). We performed a systematic review to investigate the rate of adherence to a GFD in children with celiac disease, risk factors that affect adherence, and outcomes of non-adherence. METHODS We searched PubMed, Cochrane Library, EBSCO, and Scopus for studies through January 2019. We included observational studies of ≥50 children diagnosed with celiac disease and recommended for placement on a GFD. We collected data on adherence assessment (self-report, serology tests, structured dietary interview, biopsies, or assays for gluten immunogenic peptides), risk factors, and outcomes related to adherence. Findings were presented with medians, range, and a narrative synthesis. RESULTS We identified 703 studies; of these, 167 were eligible for full-text assessment and 49 were included in the final analysis, comprising 7850 children. Rates of adherence to a GFD ranged from 23% to 98%. Comparable rates (median rates of adherence, 75%-87%) were found irrespective of how assessments were performed. Adolescents were at risk of non-adherence and children whose parents had good knowledge about celiac disease adhered more strictly. Non-adherence associated with patient growth, symptoms, and quality of life. CONCLUSION In a systematic review of 49 studies of children with celiac disease, we found substantial variation in adherence to a GFD among patients. Rate of adherence was not associated with method of adherence measurement, so all methods appear to be useful, with lack of consensus on the ideal metric. Studies are needed to determine the best method to ensure adherence and effects on long-term health.
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Affiliation(s)
- Anna Myléus
- Division of Family Medicine, Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden; Department of Epidemiology and Global Health, Umeå University, Umeå, Sweden.
| | - Norelle R Reilly
- Department of Pediatrics, Celiac Disease Center, Columbia University College of Physicians and Surgeons, Columbia University, New York, New York; Department of Medicine, Celiac Disease Center, Columbia University College of Physicians and Surgeons, Columbia University, New York, New York
| | - Peter H R Green
- Department of Medicine, Celiac Disease Center, Columbia University College of Physicians and Surgeons, Columbia University, New York, New York
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Celiac Dietary Adherence Test simplifies Determining Adherence to a Gluten-free Diet in Swedish Adolescents. J Pediatr Gastroenterol Nutr 2019; 69:575-580. [PMID: 31335839 DOI: 10.1097/mpg.0000000000002451] [Citation(s) in RCA: 16] [Impact Index Per Article: 2.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/11/2022]
Abstract
OBJECTIVES The aims of the study were to ascertain whether the Celiac Dietary Adherence Test (CDAT) could contribute in determining adherence to a gluten-free diet in patients with celiac disease and to evaluate the diet adherence and well being of a study population 5 years after a celiac disease screening known as "Exploring the Iceberg of Celiacs in Sweden." METHODS Through the screening, 90 adolescents (born 1997) were diagnosed with biopsy-proven celiac disease at 12 years of age. Of them, 70 (78%) came to a 5-year follow-up where anti-tissue transglutaminase antibodies 2 was tested and a questionnaire was filled in, including CDAT, which consists of 7 questions related to adherence. Nonparametrical tests were used to determine associations between adherence measures. RESULTS Among the adolescents, 86% were adherent to a gluten-free diet 5 years after screening, 38% reported their general well being as excellent, 50% very well, and 12% well. Statistically significant associations were seen between anti-tissue transglutaminase antibodies 2 and the CDAT score (P = 0.033), and the self-reported adherence question and the CDAT score (P < 0.001). CONCLUSIONS The screening-detected adolescents reported a high level of well being and adherence to a gluten-free diet 5 years after screening. We conclude that the CDAT can be used in clinical practice as an estimation of adherence to a gluten-free diet. It would be most suitable to use in conjunction with currently used adherence measures, but can also be used as a stand-alone method when others are not accessible.
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Diagnosing Celiac Disease: Towards Wide-Scale Screening and Serology-Based Criteria? Gastroenterol Res Pract 2019; 2019:2916024. [PMID: 31467522 PMCID: PMC6701393 DOI: 10.1155/2019/2916024] [Citation(s) in RCA: 19] [Impact Index Per Article: 3.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/18/2019] [Accepted: 07/16/2019] [Indexed: 12/12/2022] Open
Abstract
Celiac disease is one of the most common food-related chronic disorders in children. Unfortunately, this multifaceted disease is challenging to recognize and remains markedly underdiagnosed. Screening of either known at-risk groups or even the whole population could increase the suboptimal diagnostic yield substantially. Many recent guidelines recommend screening of at least selected risk groups, but more wide-scale screening remains controversial. The increasing prevalence of celiac disease and the development of autoantibody assays have also led to a gradual shift in the diagnostics towards less invasive serology-based criteria in a subgroup of symptomatic children. The main open questions concern whether these criteria are applicable to all countries and clinical settings, as well as to adult patients. On the other hand, widening screening and the mistaken practice of initiating a gluten-free diet before the appropriate exclusion of celiac disease increase the number of borderline seropositive cases, which may also challenge the classical histopathological diagnostics. Sophisticated diagnostic methods and a deeper understanding of the natural history of early developing celiac disease may prove useful in these circumstances.
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Leinonen H, Kivelä L, Lähdeaho ML, Huhtala H, Kaukinen K, Kurppa K. Daily Life Restrictions are Common and Associated with Health Concerns and Dietary Challenges in Adult Celiac Disease Patients Diagnosed in Childhood. Nutrients 2019; 11:nu11081718. [PMID: 31349675 PMCID: PMC6723871 DOI: 10.3390/nu11081718] [Citation(s) in RCA: 12] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/28/2019] [Revised: 07/19/2019] [Accepted: 07/23/2019] [Indexed: 12/20/2022] Open
Abstract
The prevalence and associated factors of daily life restrictions due to a gluten-free diet in adult celiac disease patients diagnosed in childhood are poorly known. We investigated these issues by collecting the medical data of 955 pediatric patients and sending questionnaires evaluating various health outcomes to the 559 patients who had reached adulthood. Of the 231 respondents, 46% reported everyday life restrictions caused by dietary treatment. Compared with those without restrictions, they more often had anemia at diagnosis (37% vs. 22%, p = 0.014), but the groups were comparable in other diagnostic features. In adulthood, patients with restrictions reported more overall symptoms (32% vs. 17%, p = 0.006), although the symptoms measured with the Gastrointestinal Symptom Rating Scale questionnaire were comparable. Despite strict dietary adherence in both groups, the experience of restrictions was associated with dietary challenges (34% vs. 9%, p < 0.001), health concerns (22% vs. 13%, p = 0.050), and lower vitality scores in the Psychological General Well-Being questionnaire. The groups did not differ in their current age, socioeconomic status, family history of celiac disease, general health or health-related lifestyle, the presence of co-morbidities, or regular follow up. Our results encourage healthcare professionals to discuss the possible health concerns and dietary challenges with patients to avoid unnecessary daily life restrictions, especially when young patients start to take responsibility for their treatment.
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Affiliation(s)
- Heini Leinonen
- Faculty of Medicine and Health Technology, Tampere University, 33014 Tampere, Finland
- Center for Child Health Research, Tampere University and Department of Pediatrics, Tampere University Hospital, 33014 Tampere, Finland
| | - Laura Kivelä
- Center for Child Health Research, Tampere University and Department of Pediatrics, Tampere University Hospital, 33014 Tampere, Finland.
- Pediatric Research Center, Children's Hospital, University of Helsinki and Helsinki University Hospital, 00029 Helsinki, Finland.
| | - Marja-Leena Lähdeaho
- Center for Child Health Research, Tampere University and Department of Pediatrics, Tampere University Hospital, 33014 Tampere, Finland
| | - Heini Huhtala
- Faculty of Social Sciences, Tampere University, 33014 Tampere, Finland
| | - Katri Kaukinen
- Faculty of Medicine and Health Technology, Tampere University, 33014 Tampere, Finland
- Department of Internal Medicine, Tampere University Hospital, 33014 Tampere, Finland
- Celiac Disease Research Center, Tampere University, 33014 Tampere, Finland
| | - Kalle Kurppa
- Faculty of Medicine and Health Technology, Tampere University, 33014 Tampere, Finland
- Center for Child Health Research, Tampere University and Department of Pediatrics, Tampere University Hospital, 33014 Tampere, Finland
- The University Consortium of Seinäjoki, 60320 Seinäjoki, Finland
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31
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Sample D, Turner J. Improving gluten free diet adherence by youth with celiac disease. Int J Adolesc Med Health 2019; 33:/j/ijamh.ahead-of-print/ijamh-2019-0026/ijamh-2019-0026.xml. [PMID: 30875325 DOI: 10.1515/ijamh-2019-0026] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/04/2019] [Accepted: 02/17/2019] [Indexed: 01/09/2023]
Abstract
INTRODUCTION Celiac disease (CD) is a gluten-triggered autoimmune disorder of the small intestine, which can occur in genetically susceptible individuals at any age. A strict life-long gluten free diet (GFD) is the only medically approved treatment, and non-adherence is associated with significant morbidity. However, gluten use is widespread, complicating efforts to follow the diet. Youth with CD are especially challenged with dietary adherence, as they strive for peer acceptance and personal autonomy in the context of managing a chronic disease. METHODS A scoping review was conducted to identify mechanisms to assist youth with remaining gluten free. RESULTS There is a paucity of literature regarding best approaches to improve diet adherence by youth, however, lessons can also be learned by borrowing ideas from self-management approaches of other chronic diseases. Several mechanisms for improving GFD adherence among youth are identified, including regular engagement of the youth with CD and their family with an experienced multidisciplinary team, electronic tool utilization and awareness of accurate resources for self-guided education and resources. CONCLUSIONS Improvement in GFD adherence by youth is achievable and may influence long-term health outcomes.
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Affiliation(s)
- Dory Sample
- Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada, Phone: +780-248-5599
| | - Justine Turner
- Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada
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Kilincalp S, Haji AY. Letter: anxiety after coeliac disease diagnosis predicts mucosal healing-a population-based study. Aliment Pharmacol Ther 2019; 49:619. [PMID: 30746773 DOI: 10.1111/apt.15110] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/11/2022]
Affiliation(s)
- Serta Kilincalp
- Department of Gastroenterology, Lanstinghet Gävleborg, Region Gävleborg, Sweden
| | - Amil Younes Haji
- Department of Gastroenterology, Lanstinghet Gävleborg, Region Gävleborg, Sweden
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Celiac Disease 30 Years After Diagnosis: Struggling With Gluten-free Adherence or Gaining Gluten Tolerance? J Pediatr Gastroenterol Nutr 2018; 67:361-366. [PMID: 29620596 DOI: 10.1097/mpg.0000000000001995] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/11/2022]
Abstract
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 calculated. According to the gluten-free diet (GFD) status, CD patients were divided into 3 groups and a specific questionnaire on GFD awareness and gluten-free products was administered to patients and caregivers. RESULTS A total of 337 CD patients were included in the study. The standardised mortality ratio was 0.37 (confidence interval 0.10 to 0.94) compared with 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.
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Zingone F, Massa S, Malamisura B, Pisano P, Ciacci C. Coeliac disease: factors affecting the transition and a practical tool for the transition to adult healthcare. United European Gastroenterol J 2018; 6:1356-1362. [PMID: 30386608 DOI: 10.1177/2050640618787651] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/21/2018] [Accepted: 05/15/2018] [Indexed: 01/25/2023] Open
Abstract
Background As of now, no established model for the transition from childhood to adulthood in coeliac disease exists. We aim to describe the dietary compliance and the quality of life of a population of young coeliac disease patients around transition age and to develop a practical tool (TRANSIT-CeD disk) which can be used during the transition process effectively to transmit young adults to the adult healthcare giver. Methods We consecutively recruited all coeliac disease patients with a paediatric diagnosis (≤16 years) and aged between 9 and 20 years at the time of the study. The patients were asked to answer some questions concerning their adherence to a gluten-free diet, knowledge about coeliac disease, relationship with healthcare givers and quality of life. Results We included 58 subjects, mean age 14.5 ± 3.6 years, of which 62% were girls/young women. We observed that dietary compliance was independently and positively related to age at diagnosis and coeliac disease knowledge, while quality of life was only independently and positively related to coeliac disease knowledge. Conclusion A good coeliac disease knowledge is positively related to dietary compliance and quality of life. With the help of the TRANSIT-CeD disk we proposed, paediatricians and adult gastroenterologists can follow the patients during the transition and identify some points to work on.
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Affiliation(s)
- Fabiana Zingone
- Department of Surgery, Oncology and Gastroenterology, University of Padua, Padua, Italy
| | - Serana Massa
- Department of Medicine, University of Salerno, Salerno, Italy
| | | | - Pasquale Pisano
- Department of Medicine, University of Salerno, Salerno, Italy
| | - Carolina Ciacci
- Department of Medicine, University of Salerno, Salerno, Italy
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Wessels MM, te Lintelo M, Vriezinga SL, Putter H, Hopman EG, Mearin ML. Assessment of dietary compliance in celiac children using a standardized dietary interview. Clin Nutr 2018; 37:1000-1004. [DOI: 10.1016/j.clnu.2017.04.010] [Citation(s) in RCA: 18] [Impact Index Per Article: 2.6] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/04/2017] [Revised: 03/12/2017] [Accepted: 04/11/2017] [Indexed: 12/01/2022]
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Holbein CE, Carmody JK, Hommel KA. Topical Review: Adherence Interventions for Youth on Gluten-Free Diets. J Pediatr Psychol 2018; 43:392-401. [PMID: 29096013 PMCID: PMC6658851 DOI: 10.1093/jpepsy/jsx138] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/01/2017] [Revised: 10/16/2017] [Accepted: 10/19/2017] [Indexed: 02/07/2023] Open
Abstract
Objective To summarize gluten-free diet (GFD) nonadherence risk factors, nonadherence rates, and current intervention research within an integrative framework and to develop a research agenda for the development and implementation of evidence-based GFD adherence interventions. Methods Topical review of literature published since 2008 investigating GFD adherence in pediatric samples. Results Reviews of pediatric studies indicate GFD nonadherence rates ranging from 19 to 56%. There are few evidence-based, published pediatric GFD adherence interventions. Novel assessments of GFD adherence are promising but require further study. Nonmodifiable and modifiable factors within individual, family, community, and health systems domains must be considered when developing future interventions. Clinical implications are discussed. Conclusions Avenues for future research include development and refinement of adherence assessment tools and development of evidence-based GFD adherence interventions. Novel technologies (e.g., GFD mobile applications) require empirical study but present exciting opportunities for adherence intervention.
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Affiliation(s)
- Christina E Holbein
- Division of Behavioral Medicine and Clinical Psychology, Center for Adherence and Self-Management, Cincinnati Children’s Hospital Medical Center
| | - Julia K Carmody
- Division of Behavioral Medicine and Clinical Psychology, Center for Adherence and Self-Management, Cincinnati Children’s Hospital Medical Center
| | - Kevin A Hommel
- Division of Behavioral Medicine and Clinical Psychology, Center for Adherence and Self-Management, Cincinnati Children’s Hospital Medical Center
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Daily Experiences and Challenges Among Children and Adolescents With Celiac Disease: Focus Group Results. J Pediatr Gastroenterol Nutr 2018; 66:58-63. [PMID: 28574969 DOI: 10.1097/mpg.0000000000001635] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/10/2022]
Abstract
OBJECTIVES Maintaining a restrictive gluten-free diet is the only treatment for celiac disease (CD). Adherence among children and adolescents presents unique challenges and is often inadequate. The International Classification of Functioning, Disability and Health: Children and Youth version (ICF-CY) model encompasses all aspects of human health and daily function while dealing with a disease and interacting with the environment. The purpose was to explore everyday life experiences and challenges as perceived by children and adolescents with CD and their parents in light of the ICF-CY concepts to identify the most crucial components in management challenges. The present study was the first stage in developing a standardized questionnaire to assess these needs. METHODS Children and adolescents diagnosed with CD for more than 6 months and their parents participated in 4 separate focus group interviews: 12 children (8-12 years) and 13 of their parents, and 10 adolescents (13-16 years) and 10 of their parents. RESULTS The ICF-CY body functions component that includes higher-level cognitive functions, such as organization, planning, and problem solving was largely reflected. Food-related activities in and out of the home were discussed, yet thorough activity analysis was lacking in the available literature. CONCLUSIONS The focus groups revealed a wide scope of coping issues that contribute to a deeper understanding of specific CD characteristics including daily management, participation in food-related activities, roles, strategies, and supporting or hindering factors in everyday life with CD.
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Meyer S, Rosenblum S. Development and Validation of the Celiac Disease-Children's Activities Report (CD-Chart) for Promoting Self-Management among Children and Adolescents. Nutrients 2017; 9:nu9101130. [PMID: 29039796 PMCID: PMC5691746 DOI: 10.3390/nu9101130] [Citation(s) in RCA: 7] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/24/2017] [Revised: 10/11/2017] [Accepted: 10/15/2017] [Indexed: 12/15/2022] Open
Abstract
Adherence to a restrictive gluten-free diet is the only known treatment for celiac disease (CD). Children and adolescents with CD encounter challenges while managing the diet in daily activities. Understanding their participation characteristics is lacking. The aim was to describe the development and validation process of the Celiac Disease-Children's Activities Report (CD-Chart). The final CD-Chart includes nine food-related activities that are measured by six core dimensions: frequency, preference, preparation, involvement, help, and self-determination. Participants were 126 children (8-11 years) and adolescents (12-18 years) with CD, and 30 healthy matched controls. Factor analysis was performed and psychometric properties were measured. Content and face validity was established and the CD-Chart showed adequate internal consistency as measured by the preference dimension (α = 0.81). Factor analysis revealed two distinct factors, social environment and close family environment. Construct validity demonstrated that the group with CD required significantly more pre-preparation for food-related activities than controls, (t(38) = 76.25, p < 0.001) and further differences as well as similarities were found between groups. Primary results indicate that the CD-Chart may serve as a practical tool for acquiring information about participation characteristics in food-related activities, strengths and challenges of children and adolescents with CD, to promote self-management, diet adherence, and well-being.
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Affiliation(s)
- Sonya Meyer
- The Laboratory of Complex Human Activity and Participation, Department of Occupational Therapy, Faculty of Social Welfare & Health Sciences, University of Haifa, Haifa 3498838, Israel.
| | - Sara Rosenblum
- The Laboratory of Complex Human Activity and Participation, Department of Occupational Therapy, Faculty of Social Welfare & Health Sciences, University of Haifa, Haifa 3498838, Israel.
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Meyer S, Rosenblum S. Activities, Participation and Quality of Life Concepts in Children and Adolescents with Celiac Disease: A Scoping Review. Nutrients 2017; 9:E929. [PMID: 28837103 PMCID: PMC5622689 DOI: 10.3390/nu9090929] [Citation(s) in RCA: 22] [Impact Index Per Article: 2.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/26/2017] [Revised: 08/10/2017] [Accepted: 08/21/2017] [Indexed: 02/06/2023] Open
Abstract
Celiac disease (CD) is a food-related chronic condition and adherence to a strict gluten-free diet is the only available treatment. Adherence to the restrictive diet is challenging among children, especially adolescents. The aim was to describe existing knowledge about food-related activities, participation, and quality of life in daily life among children and adolescents with CD and to illuminate gaps in knowledge. The scoping review methodology was applied and literature searches were conducted in electronic databases. Twenty-three articles met the inclusion criteria. Food-related activities were identified, classified, and coded under the International Classification of Functioning, Disability, and Health adapted for children and youth (ICF-CY) concepts of activities and participation. A wide variety of study populations, objectives, methods, and tools involving 55 different food-related activities were found. Incorporation of the ICF-CY concepts and quality of life captures new insights into everyday challenges. Reviewing the CD literature using this different lens reveals areas yet to receive sufficient attention. Further research can deepen the understanding of daily functioning of children with CD and the underlying skills required to participate in daily food-related activities while adhering to the diet. This can lead to the development of standardized disease-specific assessment tools and suitable intervention programs.
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Affiliation(s)
- Sonya Meyer
- The Laboratory of Complex Human Activity and Participation, Department of Occupational Therapy, Faculty of Social Welfare & Health Sciences, University of Haifa, Haifa 3498838, Israel.
| | - Sara Rosenblum
- The Laboratory of Complex Human Activity and Participation, Department of Occupational Therapy, Faculty of Social Welfare & Health Sciences, University of Haifa, Haifa 3498838, Israel.
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Sarkhy A, El Mouzan MI, Saeed E, Alanazi A, Alghamdi S, Anil S, Assiri A. Socioeconomic Impacts of Gluten-Free Diet among Saudi Children with Celiac Disease. Pediatr Gastroenterol Hepatol Nutr 2016; 19:162-167. [PMID: 27738597 PMCID: PMC5061657 DOI: 10.5223/pghn.2016.19.3.162] [Citation(s) in RCA: 5] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/21/2016] [Revised: 02/15/2016] [Accepted: 02/18/2016] [Indexed: 11/26/2022] Open
Abstract
PURPOSE To determine the socio-economic impact of gluten free diet (GFD) on Saudi children and their families. METHODS A cross-sectional study was conducted in which an online questionnaire was sent to all families registered in the Saudi celiac patients support group. We included only children (age 18 years of age and younger) with biopsy-confirmed celiac disease (CD). RESULTS A total of 113 children were included in the final analysis, the median age was 9.9 years; 62.8% were females. One hundred (88.5%) of the participating families reported that GFD food was not easily available in their areas, 17% of them reported that it was not available at all in their area. One hundred and six (93.8%) reported that the price of GFD food was very expensive and 70 (61.9%) families that the diet was heavily affecting their family budget. Significant social difficulties were reported among the participating families and their children including interference with the child's interaction with other children (49.6%), the families' ability to attend social gatherings (60.2%), the families' ability to eat in restaurants (73.5%), and the families' ability to travel (58.4%). CONCLUSION There is significant negative socio-economic impact of GFD on children with CD & their families. Health care providers should be aware of these psycho-social difficulties and be well trained to provide a proper education and psychological support for these patients and their families.
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Affiliation(s)
- Ahmed Sarkhy
- Division of Gastroenterology, Department of Pediatrics, King Khalid University Hospital, King Saud University, Riyadh, Saudi Arabia
- Prince Abdullah Bin Khalid Celiac Disease Research Chair, College of Medicine, King Saud University, Riyadh, Saudi Arabia
| | - Mohammad I. El Mouzan
- Division of Gastroenterology, Department of Pediatrics, King Khalid University Hospital, King Saud University, Riyadh, Saudi Arabia
- Prince Abdullah Bin Khalid Celiac Disease Research Chair, College of Medicine, King Saud University, Riyadh, Saudi Arabia
| | - Elshazaly Saeed
- Prince Abdullah Bin Khalid Celiac Disease Research Chair, College of Medicine, King Saud University, Riyadh, Saudi Arabia
| | - Aziz Alanazi
- Division of Gastroenterology, Department of Pediatrics, King Abdulaziz Medical City, National Guard Health Affairs, Riyadh, Saudi Arabia
| | - Sharifa Alghamdi
- Division of Gastroenterology, Department of Pediatrics, King Faisal Specialist Hospital and Research Center, Jeddah, Saudi Arabia
| | - Shirin Anil
- Consultant Epidemiologist, College of Medicine, King Saud University, Riyadh, Saudi Arabia
| | - Asaad Assiri
- Division of Gastroenterology, Department of Pediatrics, King Khalid University Hospital, King Saud University, Riyadh, Saudi Arabia
- Prince Abdullah Bin Khalid Celiac Disease Research Chair, College of Medicine, King Saud University, Riyadh, Saudi Arabia
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Srivastava A, Chaturvedi S, Dabadghao P, Mathias A, Shukla U, Singh U, Yachha SK. Prevalence of celiac disease in Indian children with type 1 diabetes. Indian J Gastroenterol 2016; 35:372-378. [PMID: 27663711 DOI: 10.1007/s12664-016-0692-6] [Citation(s) in RCA: 7] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/09/2016] [Accepted: 08/31/2016] [Indexed: 02/04/2023]
Abstract
BACKGROUND Type 1 diabetes (T1D) patients are at an increased risk of having celiac disease (CD). We evaluated the prevalence and clinical profile of CD in children and adolescents with T1D and reviewed the Indian literature to determine prevalence and reasons for variability. METHODS In this cross-sectional study, subjects with T1D were prospectively evaluated with a demographic and gastrointestinal (GI) questionnaire, human IgA-tissue transglutaminase (IgA-tTGA), and endoscopic duodenal biopsy in serology positive patients. Studies evaluating prevalence of CD in T1D from India were reviewed. RESULTS Fourteen (13.6 %) of the 103 (52 boys, 13 years [2-20]) T1D patients were IgA-tTGA (182 U [47-300]) positive and 3.8 % (4/103) had villous atrophy on histology. Subjects with T1D and CD (n = 4) were younger at onset of T1D (32.5 ± 12.6 vs. 110.5 ± 53.8 months; p < 0.005) and more often had GI symptoms (pain abdomen [2/4 vs. 6/89; p = 0.01], stool frequency of 2-3/day [3/4 vs. 38/89; p = 0.004]) than screen negative T1D (n = 89). Growth and glycemic control were not different between the groups. In the 7 Indian studies involving 915 children and adults, 13.8 % (8 % to 17.8 %) T1D were serology positive. Prevalence of CD was reported as 6.9 % (2.3 % to 11.1 %), but only 3.1 % (2.3 % to 4.2 %) had villous atrophy on histology. CONCLUSIONS Potential CD and CD were present in 13.6 % and 3.8 % children with T1D respectively. T1D with CD have onset of diabetes at younger age and were more often symptomatic than screen negative T1D.
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Affiliation(s)
- Anshu Srivastava
- Department of Pediatric Gastroenterology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Raebareli Road, Lucknow, 226 014, India.
| | - Saurabh Chaturvedi
- Department of Pediatric Gastroenterology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Raebareli Road, Lucknow, 226 014, India
| | - Preeti Dabadghao
- Department of Endocrinology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Raebareli Road, Lucknow, 226 014, India
| | - Amrita Mathias
- Department of Pediatric Gastroenterology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Raebareli Road, Lucknow, 226 014, India
| | - Umesh Shukla
- Department of Pediatric Gastroenterology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Raebareli Road, Lucknow, 226 014, India
| | - Uttam Singh
- Department of Biostatistics, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Raebareli Road, Lucknow, 226 014, India
| | - Surender Kumar Yachha
- Department of Pediatric Gastroenterology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Raebareli Road, Lucknow, 226 014, India
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Taghdir M, Honar N, Mazloomi SM, Sepandi M, Ashourpour M, Salehi M. Dietary compliance in Iranian children and adolescents with celiac disease. J Multidiscip Healthc 2016; 9:365-70. [PMID: 27574439 PMCID: PMC4993563 DOI: 10.2147/jmdh.s110605] [Citation(s) in RCA: 16] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/23/2022] Open
Abstract
INTRODUCTION Celiac disease (CD) is caused due to intake of gluten, a protein component in wheat, barley, and rye. The only treatment currently available for CD is strict lifetime adherence to a gluten-free diet (GFD) which is a diet that excludes wheat, barley, and rye. There is limited information on barriers to following a GFD. The present study aimed to investigate the compliance with a GFD, barriers to compliance, and the impact of compliance on the quality of life (QOL) in Iranian children and adolescents suffering from CD. METHODS In this cross-sectional study, a total of 65 known cases of CD (both males and females), diagnosed in Namazi Hospital, a large referral center in south of Iran, selected by census were studied in 2014. Dietary compliance was assessed using a questionnaire. A disease-specific QOL questionnaire for children with CD (the celiac disease DUX [CDDUX]) was used. Comparisons between categorical variables were performed using chi-square test. RESULTS Sixty-five patients, 38 females (58.5%) and 27 (41.5%) males, were surveyed. Mean (± standard deviation [SD]) age of the respondents was 11.3 (±3.8) years. Dietary compliance was reported by 35 (53.8%) patients. The mean (± SD) CDDUX score was higher in dietary-compliant patients (33.5 [±19.4] vs 26.7 [±13.6], respectively, P=0.23). The score of CDDUX in parents of patients in dietary-compliant group was more than the noncompliant patients (28.1 [±13.5] vs 22.1 [±14], respectively, P=0.1). Barriers to noncompliance were poor or unavailability (100%), high cost (96.9%), insufficient labeling (84.6%), poor palatability (76.9%), and no information (69.23%). CONCLUSION Approximately half of the patients with CD reported dietary compliance. Poor or unavailability was found to be the most important barrier contributing to noncompliance. The QOL was better in compliant patients. Proposed strategies to improve compliance are greater availability of gluten-free products, better food labeling, and better education about the diet and condition.
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Affiliation(s)
- Maryam Taghdir
- Student Research Committee, Department of Clinical Nutrition, School of Nutrition and Food Sciences, Shiraz University of Medical Sciences, Shiraz, Iran
| | - Naser Honar
- Department of Pediatric Gastroenterology and Hepatology, Shiraz University of Medical Sciences, Shiraz, Iran
| | - Seyed Mohammad Mazloomi
- Nutrition Research Center, Department of Food Hygiene and Quality Control, School of Nutrition and Food Sciences, Shiraz University of Medical Sciences, Shiraz, Iran
| | - Mojtaba Sepandi
- Department of Epidemiology and Biostatistics, Baqyiatallah University of Medical Sciences, Tehran, Iran
| | - Mahkameh Ashourpour
- Student Research Committee, Department of Clinical Nutrition, School of Nutrition and Food Sciences, Shiraz University of Medical Sciences, Shiraz, Iran
| | - Musa Salehi
- Nutrition Research Center, Department of Clinical Nutrition, School of Nutrition and Food Sciences, Shiraz University of Medical Sciences, Shiraz, Iran
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Ludvigsson JF, Agreus L, Ciacci C, Crowe SE, Geller MG, Green PHR, Hill I, Hungin AP, Koletzko S, Koltai T, Lundin KEA, Mearin ML, Murray JA, Reilly N, Walker MM, Sanders DS, Shamir R, Troncone R, Husby S. Transition from childhood to adulthood in coeliac disease: the Prague consensus report. Gut 2016; 65:1242-1251. [PMID: 27196596 PMCID: PMC4975833 DOI: 10.1136/gutjnl-2016-311574] [Citation(s) in RCA: 72] [Impact Index Per Article: 8.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/01/2016] [Revised: 03/23/2016] [Accepted: 03/27/2016] [Indexed: 12/20/2022]
Abstract
The process of transition from childhood to adulthood is characterised by physical, mental and psychosocial development. Data on the transition and transfer of care in adolescents/young adults with coeliac disease (CD) are scarce. In this paper, 17 physicians from 10 countries (Sweden, Italy, the USA, Germany, Norway, the Netherlands, Australia, Britain, Israel and Denmark) and two representatives from patient organisations (Association of European Coeliac Societies and the US Celiac Disease Foundation) examined the literature on transition from childhood to adulthood in CD. Medline (Ovid) and EMBASE were searched between 1900 and September 2015. Evidence in retrieved reports was evaluated using the Grading of Recommendation Assessment, Development and Evaluation method. The current consensus report aims to help healthcare personnel manage CD in the adolescent and young adult and provide optimal care and transition into adult healthcare for patients with this disease. In adolescence, patients with CD should gradually assume exclusive responsibility for their care, although parental support is still important. Dietary adherence and consequences of non-adherence should be discussed during transition. In most adolescents and young adults, routine small intestinal biopsy is not needed to reconfirm a childhood diagnosis of CD based on European Society for Pediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) or North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) criteria, but a biopsy may be considered where paediatric diagnostic criteria have not been fulfilled, such as, in a patient without biopsy at diagnosis, additional serology (endomysium antibody) has not been performed to confirm 10-fold positivity of tissue transglutaminase antibodies or when a no biopsy strategy has been adopted in an asymptomatic child.
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Affiliation(s)
- Jonas F Ludvigsson
- Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden
- Department of Paediatrics, Örebro University Hospital, Örebro, Sweden
- Division of Epidemiology and Public Health, School of Medicine, University of Nottingham, Nottingham, UK
| | - Lars Agreus
- Division of Family Medicine, Karolinska Institutet, Sweden
| | - Carolina Ciacci
- Department of Medicine and Surgery, University of Salerno, Salerno, Italy
| | - Sheila E Crowe
- University of California, San Diego (UCSD), San Diego, California, USA
| | | | - Peter H R Green
- Celiac Disease Center at Columbia University, New York, New York, USA
| | - Ivor Hill
- Division of Gastroenterology, Nationwide Children's Hospital, Columbus, Ohio, USA
| | - A Pali Hungin
- Primary Care and General Practice, School of Medicine, Pharmacy and Health, Durham University, Stockton on Tees, UK
| | - Sibylle Koletzko
- Ludwig-Maximilians-University of Munich, Dr. von Hauner Children's Hospital, Munich, Germany
| | - Tunde Koltai
- Hungary (for the Association of European Coeliac Societies, AOECS), Budapest, Hungary
| | - Knut E A Lundin
- Department of Gastroenterology and Centre for Immune Regulation, Oslo University Hospital Rikshospitalet, Oslo, Norway
| | - M Luisa Mearin
- Department of Paediatrics, Leiden University Medical Center, Leiden, The Netherlands
| | - Joseph A Murray
- Division of Gastroenterology and Hepatology, Department of Immunology Mayo Clinic, Rochester, Minnesota, USA
| | - Norelle Reilly
- Columbia University Medical Center-Division of Paediatric Gastroenterology, New York, New York, USA
| | - Marjorie M Walker
- Anatomical Pathology, Faculty of Health and Medicine, University of Newcastle, School of Medicine & Public Health, Newcastle, Australia
| | - David S Sanders
- Academic Unit of Gastroenterology, Royal Hallamshire Hospital & University of Sheffield, Sheffield, UK
| | - Raanan Shamir
- Institute of Gastroenterology, Nutrition and Liver Diseases Schneider Children's Medical Center of Israel, Tel-Aviv University, Tel Aviv, Israel
| | - Riccardo Troncone
- Department of Medical Translational Sciences & European Laboratory for the Investigation of Food Induced Diseases, University Federico II, Naples, Italy
| | - Steffen Husby
- Hans Christian Andersen Children's Hospital, Odense University Hospital, Odense C, Denmark
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Wagner G, Zeiler M, Grylli V, Berger G, Huber WD, Woeber C, Rhind C, Karwautz A. Coeliac disease in adolescence: Coping strategies and personality factors affecting compliance with gluten-free diet. Appetite 2016; 101:55-61. [PMID: 26924559 DOI: 10.1016/j.appet.2016.02.155] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/12/2015] [Revised: 02/09/2016] [Accepted: 02/22/2016] [Indexed: 11/19/2022]
Abstract
OBJECTIVES Patients suffering from a chronic condition such as coeliac disease (CD) need to develop coping strategies in order to preserve emotional balance and psychosocial functioning while adhering to their obligatory life-long gluten free diet (GFD). However, this can be particularly challenging for adolescents and may lead to dietary transgressions. Little is currently known about the influence of coping strategies and personality factors on dietary compliance. This study aims to explore these factors for the first time in adolescents with biopsy-proven CD. STUDY DESIGN We included 281 adolescents with CD and 95 healthy controls. We classified patients according to their GFD adherence status (adherent vs. non-adherent) and assessed coping strategies using the KIDCOPE and personality traits using the Junior-Temperament and Character Inventory (J-TCI). RESULTS Adolescents with CD adherent to GFD used less emotional regulation and distraction as coping strategies than non-adherent patients. In terms of personality traits, adherent patients differed from non-adherent patients with respect to temperament, but not with respect to character, showing lower scores in novelty seeking, impulsivity and rule transgressions and higher scores in eagerness with work and perfectionism compared to non-adherent patients. No differences were found between healthy controls and adherent CD patients across these personality traits. CONCLUSIONS Coping strategies and personality traits differ in adolescent patients with CD adherent to GFD from those not adherent, and may therefore relate to risk or protective factors in adherence. Targeting coping and temperament using psychological interventions may therefore be beneficial to support adolescents with CD and optimise their adherence to GFD.
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Affiliation(s)
- Gudrun Wagner
- Department of Child and Adolescent Psychiatry, General Hospital of Vienna, Medical University of Vienna, Waehringer Guertel 18-20, A-1090, Vienna, Austria.
| | - Michael Zeiler
- Department of Child and Adolescent Psychiatry, General Hospital of Vienna, Medical University of Vienna, Waehringer Guertel 18-20, A-1090, Vienna, Austria
| | - Vasileia Grylli
- Department of Child and Adolescent Psychiatry, General Hospital of Vienna, Medical University of Vienna, Waehringer Guertel 18-20, A-1090, Vienna, Austria
| | - Gabriele Berger
- Gastroenterology Unit at the Department of Paediatrics and Adolescent Medicine, General Hospital of Vienna, Medical University of Vienna, Waehringer Guertel 18-20, A-1090, Vienna, Austria
| | - Wolf-Dietrich Huber
- Gastroenterology Unit at the Department of Paediatrics and Adolescent Medicine, General Hospital of Vienna, Medical University of Vienna, Waehringer Guertel 18-20, A-1090, Vienna, Austria
| | - Christian Woeber
- Department of Neurology, General Hospital of Vienna, Medical University of Vienna, Waehringer Guertel 18-20, A-1090, Vienna, Austria
| | - Charlotte Rhind
- Institute of Psychiatry, Psychology & Neuroscience, Kings College London, London, UK
| | - Andreas Karwautz
- Department of Child and Adolescent Psychiatry, General Hospital of Vienna, Medical University of Vienna, Waehringer Guertel 18-20, A-1090, Vienna, Austria.
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White LE, Bannerman E, Gillett PM. Coeliac disease and the gluten-free diet: a review of the burdens; factors associated with adherence and impact on health-related quality of life, with specific focus on adolescence. J Hum Nutr Diet 2016; 29:593-606. [PMID: 27214084 DOI: 10.1111/jhn.12375] [Citation(s) in RCA: 102] [Impact Index Per Article: 11.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/17/2022]
Abstract
Adherence and non-adherence to a gluten-free diet (GFD) may impact negatively on health-related quality of life (HRQoL). Understanding the factors that influence compliance could help inform management and also guide support. With a particular focus on adolescence, this narrative review critiques current literature on the burdens associated with following a GFD and the factors associated with adherence. Studies highlight a variety of burdens faced by individuals with coeliac disease, including the cost, access and availability of gluten-free (GF) foods, as well as the dilemmas experienced when eating out, travelling and socialising with friends. A number of studies report that adolescents face stigmatisation and feel isolated in social situations and at school. Additional burdens that are highlighted are a lack of knowledge regarding CD and GFD difficulties in interpreting food labels, as well as dissatisfaction with the organoleptic properties of GF foods. Factors associated with poor adherence in adolescence include older age, an absence of immediate symptoms, difficulties eating out and poor palatability of GF foods. Conversely, better emotional support and stronger organisation skills have been associated with superior adherence. Significant associations have been reported between HRQoL measures and adherence, although the findings are inconsistent. Limitations in research methodologies exist and data are restricted to just a few countries. Further research specific to adolescence is required to identify independent predictors of adherence.
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Affiliation(s)
- L E White
- Department of Health Sciences, Queen Margaret University, East Lothian, UK.
| | - E Bannerman
- Department of Health Sciences, Queen Margaret University, East Lothian, UK
| | - P M Gillett
- Department of Paediatric Gastroenterology and Nutrition, Royal Hospital for Sick Children, Edinburgh, UK
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Bakker SF, Tushuizen ME, von Blomberg BME, Bontkes HJ, Mulder CJ, Simsek S. Screening for coeliac disease in adult patients with type 1 diabetes mellitus: myths, facts and controversy. Diabetol Metab Syndr 2016; 8:51. [PMID: 27478507 PMCID: PMC4966870 DOI: 10.1186/s13098-016-0166-0] [Citation(s) in RCA: 12] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/25/2016] [Accepted: 07/10/2016] [Indexed: 12/23/2022] Open
Abstract
This review aims at summarizing the present knowledge on the clinical consequences of concomitant coeliac disease (CD) in adult patients with type 1 diabetes mellitus (T1DM). The cause of the increased prevalence of CD in T1DM patients is a combination of genetic and environmental factors. Current screening guidelines for CD in adult T1DM patients are not uniform. Based on the current evidence of effects of CD on bone mineral density, diabetic complications, quality of life, morbidity and mortality in patients with T1DM, we advise periodic screening for CD in adult T1DM patients to prevent delay in CD diagnosis and subsequent CD and/or T1DM related complications.
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Affiliation(s)
- Sjoerd F. Bakker
- Department of Gastroenterology and Hepatology, VU University Medical Centre, De Boelelaan 1117, 1081 HV Amsterdam, The Netherlands
| | - Maarten E. Tushuizen
- Department of Gastroenterology and Hepatology, VU University Medical Centre, De Boelelaan 1117, 1081 HV Amsterdam, The Netherlands
| | | | - Hetty J. Bontkes
- Department of Pathology, Unit Medical Immunology, VU University Medical Centre, Amsterdam, The Netherlands
| | - Chris J. Mulder
- Department of Gastroenterology and Hepatology, VU University Medical Centre, De Boelelaan 1117, 1081 HV Amsterdam, The Netherlands
| | - Suat Simsek
- Department of Internal Medicine, North West Clinics, Alkmaar, The Netherlands
- Department of Internal Medicine, VU University Medical Centre, Amsterdam, The Netherlands
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Picascia S, Mandile R, Auricchio R, Troncone R, Gianfrani C. Gliadin-Specific T-Cells Mobilized in the Peripheral Blood of Coeliac Patients by Short Oral Gluten Challenge: Clinical Applications. Nutrients 2015; 7:10020-31. [PMID: 26633487 PMCID: PMC4690067 DOI: 10.3390/nu7125515] [Citation(s) in RCA: 14] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/14/2015] [Revised: 11/17/2015] [Accepted: 11/26/2015] [Indexed: 12/20/2022] Open
Abstract
Celiac disease (CD) is a common lifelong food intolerance triggered by dietary gluten affecting 1% of the general population. Gliadin-specific T-cell lines and T-cell clones obtained from intestinal biopsies have provided great support in the investigation of immuno-pathogenesis of CD. In the early 2000 a new in vivo, less invasive, approach was established aimed to evaluate the adaptive gliadin-specific T-cell response in peripheral blood of celiac patients on a gluten free diet. In fact, it has been demonstrated that three days of ingestion of wheat-containing food induces the mobilization of memory T lymphocytes reactive against gliadin from gut-associated lymphoid tissue into peripheral blood of CD patients. Such antigen-specific T-cells releasing interferon-γ can be transiently detected by using the enzyme-linked immunospot (ELISPOT) assays or by flow cytometry tetramer technology. This paper discusses the suitability of this in vivo tool to investigate the repertoire of gluten pathogenic peptides, to support CD diagnosis, and to assess the efficacy of novel therapeutic strategies. A systematic review of all potential applications of short oral gluten challenge is provided.
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Affiliation(s)
- Stefania Picascia
- Institute of Protein Biochemistry-CNR, Via Pietro Castellino 111, Naples 80131, Italy.
| | - Roberta Mandile
- Department of Translational Medical Science (DISMET), Section of Pediatrics, University of Naples Federico II, Via S Pansini 5, Naples 80131, Italy.
| | - Renata Auricchio
- Department of Translational Medical Science (DISMET), Section of Pediatrics, University of Naples Federico II, Via S Pansini 5, Naples 80131, Italy.
- European Laboratory for the Investigation of Food-Induced Diseases (ELFID), University of Naples Federico II, Via S Pansini 5, Naples 80131, Italy.
| | - Riccardo Troncone
- Department of Translational Medical Science (DISMET), Section of Pediatrics, University of Naples Federico II, Via S Pansini 5, Naples 80131, Italy.
- European Laboratory for the Investigation of Food-Induced Diseases (ELFID), University of Naples Federico II, Via S Pansini 5, Naples 80131, Italy.
| | - Carmen Gianfrani
- Institute of Protein Biochemistry-CNR, Via Pietro Castellino 111, Naples 80131, Italy.
- European Laboratory for the Investigation of Food-Induced Diseases (ELFID), University of Naples Federico II, Via S Pansini 5, Naples 80131, Italy.
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Abstract
Coeliac disease is a global disease, and the only currently available treatment is a gluten-free diet (GFD). Although conceptually simple, the diet changes are substantial and have a profound effect on a patient's life. Untreated coeliac disease is associated with complications, including excess mortality, most of which can be avoided with a strict GFD. However, there are many barriers, including availability, cost and safety of gluten-free foods, and gluten cross-contamination. The GFD can be restrictive in social situations, leading to poor quality of life and, ultimately, nonadherence. As the number of patients with coeliac disease increases worldwide, clinicians need to be aware of the challenges patients face. Heightened awareness by physicians, dietitians and other providers can help maximize successful treatment, improve outcomes, and reduce health-care costs and disease burden. Routine follow-up is necessary to reinforce the need for a GFD, provide social and emotional support, and achieve mucosal healing, leading to reduced risk of complications. Unfortunately, there is wide variation in follow-up practices. The objective of this Review is to increase awareness of the challenges, management and follow-up of patients with coeliac disease to help them achieve GFD adherence and prevent complications whilst preserving their quality of life.
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Affiliation(s)
- Jacalyn A See
- Division of Endocrinology, Diabetes, and Nutrition, Mayo Clinic, 200 1st Street SW, Rochester, MN 55905, USA
| | - Katri Kaukinen
- Department of Medicine, Building Finn-Medi 3, University of Tampere, Tampere, FI-33014, Finland
| | - Govind K Makharia
- Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, Ansari Nagar, New Delhi-110029, India
| | - Peter R Gibson
- Department of Gastroenterology, Central Clinical School, Monash University, Level 6, The Alfred Centre, 99 Commercial Road, Melbourne, VIC 3004, Australia
| | - Joseph A Murray
- Division of Gastroenterology and Department of Immunology, Mayo Clinic, 200 1st Street SW, Rochester, MN 55905, USA
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Kakleas K, Soldatou A, Karachaliou F, Karavanaki K. Associated autoimmune diseases in children and adolescents with type 1 diabetes mellitus (T1DM). Autoimmun Rev 2015; 14:781-97. [PMID: 26001590 DOI: 10.1016/j.autrev.2015.05.002] [Citation(s) in RCA: 66] [Impact Index Per Article: 6.6] [Reference Citation Analysis] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/28/2015] [Accepted: 05/06/2015] [Indexed: 12/16/2022]
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Abstract
OBJECTIVES The aim of the study was to evaluate the gluten-free diet (GFD) adherence after 1 year of follow-up in children with screening-detected celiac disease (CD) in a general population. METHODS A total of 18,325 twelve-year-olds were invited to participate in a population-based CD screening (Exploring the Iceberg of Celiacs in Sweden), of whom 13,279 participated. In 240 children, CD was detected through elevated anti-tissue transglutaminase antibodies 2 (TG2-IgA) and verified by a small-intestinal biopsy. This substudy included 210 children with TG2-IgA, evaluated both at the initial biopsy occasion and at 1-year follow-up. GFD adherence was evaluated by a combination of TG2-IgA measurements and self-reported adherence (n = 193). RESULTS After 1 year, 85% (179/210) had normalized TG2-IgA levels (<5 U/mL). Among those who had >50 U/mL at diagnosis, 25% (16/63) still had elevated TG2-IgA, but for the majority their initial values were more than halved. Most reported a high level of GFD adherence ("always" 82% [158/193] and "often" 16% [30/193]), and 75% [145/193] reported always adhering combined with normalized TG2-IgA. Although reporting that they were always adherent, 13 (6.7%) had not yet normalized their TG2-IgA levels completely; however, a majority of these initially had the highest TG2-IgA levels. CONCLUSIONS GFD adherence is high in adolescents with CD detected by screening of the general population of Swedish 12-year-olds. Almost all of them had normalized serology and reported GFD adherence at the 1-year follow-up. A few adolescents who reported GFD adherence, however, had elevated TG2-IgA levels, suggesting more severe disease and/or nonadherence.
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