Cited by 76Celiac Disease Research and ManagementChild Nutrition and Feeding IssuesEating Disorders and Behaviors

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

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Cadenhead, J. W., Wolf, R. L., Lebwohl, B., Lee, A. R., Zybert, P., Reilly, N. R., Schebendach, J., Satherley, R. +1 more·2019·Journal of Human Nutrition and Dietetics

Abstract

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

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  1. [2]Rubio-Tapia A, Ludvigsson JF, Brantner TL (2012) The prevalence of celiac disease in the United States. Am J Gastroenterol 107, 1538– 1544. 22850429
  2. [3]Green PH, Cellier C (2007) Celiac disease. N Engl J Med 357, 1731– 1743. 17960014
  3. [4]Green PH (2005) The many faces of celiac disease: clinical presentation of celiac disease in the adult population. Gastroenterology 128, S74– 78. 15825130
  4. [5]Barratt SM, Leeds JS, Sanders DS (2013) Factors influencing the type, timing and severity of symptomatic responses to dietary gluten in patients with biopsy-proven coeliac disease. J Gastrointestin Liver Dis 22, 391– 396. 24369320
  5. [6]Green PH, Fleischauer AT, Bhagat G (2003) Risk of malignancy in patients with celiac disease. Am J Med 115, 191– 195. 12935825
  6. [7]Meyer D, Stavropolous S, Diamond B (2001) Osteoporosis in a north american adult population with celiac disease. Am J Gastroenterol 96, 112– 119. 11197239
  7. [8]Lebwohl B, Granath F, Ekbom A (2013) Mucosal healing and risk for lymphoproliferative malignancy in celiac disease: a population-based cohort study. Ann Intern Med 159, 169– 175. 23922062 PMC3788608
  8. [9]Mearin ML (2007) Celiac disease among children and adolescents. Curr Probl Pediatr Adolesc Health Care 37, 20. 17320793
  9. [10]Ludvigsson JF, Agreus L, Ciacci C (2016) Transition from childhood to adulthood in coeliac disease: the Prague consensus report. Gut 65, 1242– 1251. 27196596 PMC4975833
  10. [11]Wagner G, Berger G, Sinnreich U (2008) Quality of life in adolescents with treated coeliac disease: influence of compliance and age at diagnosis. J Pediatr Gastroenterol Nutr 47, 555– 561. 18955861
  11. [12]Biagetti C, Gesuita R, Gatti S (2015) Quality of life in children with celiac disease: A paediatric cross-sectional study. Dig Liver Dis 47, 927– 932. 26283211
  12. [13]Olsson C, Lyon P, Hörnell A (2009) Food that makes you different: the stigma experienced by adolescents with celiac disease. Qual Health Res 19, 9. 19556403
  13. [14]Rosen A, Ivarsson A, Nordyke K (2011) Balancing health benefits and social sacrifices: a qualitative study of how screening-detected celiac disease impacts adolescents’ quality of life. BMC Pediatr 11, 32. 21569235 PMC3120678
  14. [15]Chauhan JC, Kumar P, Dutta AK (2010) Assessment of dietary compliance to gluten free diet and psychosocial problems in Indian children with celiac disease. Indian J Pediatr 77, 649– 654. 20532683
  15. [16]Mazzone L, Reale L, Spina M (2011) Compliant gluten-free children with celiac disease: an evaluation of psychological distress. BMC Pediatr 11, 46. 21619651 PMC3149570
  16. [17]Bellini A, Zanchi C, Martelossi S (2011) Compliance with the gluten-free diet: the role of locus of control in celiac disease. J Pediatr 158, 463– 466 e465. 20870245
  17. [18]Wagner G, Zeiler M, Berger G (2015) Eating Disorders in Adolescents with Celiac Disease: Influence of Personality Characteristics and Coping. Eur Eat Disord Rev 23, 361– 370. 26100655
  18. [19]Karwautz A, Wagner G, Berger G (2008) Eating pathology in adolescents with celiac disease. Psychosomatics 49, 399– 406. 18794508
  19. [20]Ludvigsson JF, Lebwohl B, Chen Q (2018) Anxiety after coeliac disease diagnosis predicts mucosal healing: a population-based study. Aliment Pharmacol Ther 48, 1091– 1098. 30288774
  20. [22]Grilo C (2012) Eating and weight disorders. New York, NY: Psychology Press:
  21. [23]Arigo D, Anskis AM, Smyth JM (2012) Psychiatric comorbidities in women with celiac disease. Chronic Illn 8, 45– 55. 21933881
  22. [24]Rosen DS (2003) Eating disorders in children and young adolescents: etiology, classification, clinical features, and treatment. Adolesc Med Clin 14, 49– 59. 12529190
  23. [25]Freeland-Graves JH, Nitzke S, Academy of N (2013) Position of the academy of nutrition and dietetics: total diet approach to healthy eating. J Acad Nutr Diet 113, 307– 317. 23351634
  24. [26]Leffler DA, Dennis M, George JBE (2007) The interaction between eating disorders and celiac disease: an exploration of 10 cases. Eur J Gastroenterol Hepatol 19, 251– 255. 17301653
  25. [27]Satherley R, Howard R, Higgs S (2015) Disordered eating practices in gastrointestinal disorders. Appetite 84, 240– 250. 25312748
  26. [28]Passananti V, Siniscalchi M, Zingone F (2013) Prevalence of eating disorders in adults with celiac disease. Gastroenterol Res Pract 2013. PMC3867876 24369457
  27. [29]Mårild K, Størdal K, Bulik CM (2017) Celiac Disease and Anorexia Nervosa: A Nationwide Study. Pediatrics 139. 28557761
  28. [30]Hommer RE, Swedo SE (2017) Anorexia and Autoimmunity: Challenging the Etiologic Constructs of Disordered Eating. Pediatrics 140. PMC5703770 29122974
  29. [31]Zerwas S, Larsen JT, Petersen L (2017) Eating Disorders, Autoimmune, and Autoinflammatory Disease. Pediatrics 140. PMC5703777 29122972
  30. [32]Golden NH, Park KT (2017) Celiac Disease and Anorexia Nervosa-An Association Well Worth Considering. Pediatrics 139. 28557772
  31. [33]Satherley RM, Howard R, Higgs S (2016) The prevalence and predictors of disordered eating in women with coeliac disease. Appetite 107, 260– 267. 27521165
  32. [34]Sverker A, Hensing G, Hallert C (2005) ‘Controlled by food’- lived experiences of coeliac disease. J Hum Nutr Diet 18, 171– 180. 15882379
  33. [35]Schebendach JE, Mayer LE, Devlin MJ (2008) Dietary energy density and diet variety as predictors of outcome in anorexia nervosa. Am J Clin Nutr 87, 810– 816. 18400701
  34. [36]Wolf RL, Lebwohl B, Lee AR (2018) Hypervigilance to a Gluten-Free Diet and Decreased Quality of Life in Teenagers and Adults with Celiac Disease. Dig Dis Sci 63, 1438– 1448. 29387990
  35. [37]Hill ID, Dirks MH, Liptak GS (2005) NASPGHAN Guideline for the diagnosis and treatment of celiac disease in children: recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. J Pediatr Gastroenterol Nutr 63, 156– 165. 15625418
  36. [38]Jordan NE, Li Y, Magrini D (2013) Development and validation of a celiac disease quality of life instrument for North American children. J Pediatr Gastroenterol Nutr 57, 477– 486. 23689265
  37. [39]Leffler DA, Dennis M, Edwards George JB (2009) A simple validated gluten-free diet adherence survey for adults with celiac disease. Clin Gastroenterol Hepatol 7, 530– 536, 536 e531–532. 19268725
  38. [40]Fade SA, Swift JA (2011) Qualitative research in nutrition and dietetics: data analysis issues. J Hum Nutr Diet 24, 106– 114. 21091920
  39. [42]Bulik CM (2002) Eating disorders in adolescents and young adults. Child Adolesc Psychiatr Clin N Am 11, 201– 218. 12109318
  40. [43]Smith MM, Goodfellow L (2011) The relationship between quality of life and coping strategies of adults with celiac disease adhering to a gluten-free diet. Gastroenterol Nurs 34, 460– 468. 22129799
  41. [44]Roma E, Roubani A, Kolia E (2010) Dietary compliance and life style of children with coeliac disease. J Hum Nutr Diet 23, 176– 182. 20163513
  42. [45]Lee AR, Wolf R, Contento I (2016) Coeliac disease: the association between quality of life and social support network participation. J Hum Nutr Diet 29, 383– 390. 26194359
  43. [46]Esenyel S, Unal F, Vural P (2014) Depression and anxiety in child and adolescents with follow-up celiac disease and in their families. Turk J Gastroenterol 25, 381– 385. 25254519
  44. [48]Tokatly Latzer IT, Lerner-Geva L, Stein D (2018) Disordered eating behaviors in adolescents with celiac disease. Eat Weight Disord. 10.1007/s40519-018-0605-z [epub ahead of print] 30368766 · DOI
  45. [49]Dorn SD, Hernandez L, Minaya MT The development and validation of a new coeliac disease quality of life survey (CD-QOL). Aliment Pharmacol Ther 31, 666– 675. 20015103
  46. [50]Ludvigsson JF, Bai JC, Biagi F (2014) Diagnosis and management of adult coeliac disease: guidelines from the British Society of Gastroenterology. Gut 63, 1210– 1228. 24917550 PMC4112432
  47. [51]Rubio-Tapia A, Hill ID, Kelly CP (2013) ACG clinical guidelines: diagnosis and management of celiac disease. Am J Gastroenterol 108, 656– 676; quiz 677. 23609613 PMC3706994
  48. [52]Satherley RM, Howard R, Higgs S (2018) Development and Validation of the Coeliac Disease Food Attitudes and Behaviours Scale. Gastroenterol Res Pract 2018, 6930269. 30210536 PMC6120326

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Authors
Cadenhead, J. W., Wolf, R. L., Lebwohl, B., Lee, A. R., Zybert, P., Reilly, N. R., Schebendach, J., Satherley, R., & Green, P. H. R.
Affiliations
  • Columbia University (US)
  • Columbia University Irving Medical Center (US)
  • King's College London (GB)
Corresponding author
Cadenhead, J. W.
Venue
Journal of Human Nutrition and Dietetics
Publisher
Wiley
Published
2019-03-05
Volume
32
Issue
3
Pages
311-320
ISSN
  • 0952-3871 (ISSN-L)
  • 1365-277X
OpenAlex
W2919331625
Cited by
76
References
2
Citations by year
2026: 14 · 2025: 13 · 2024: 14 · 2023: 7 · 2022: 11 · 2021: 8 · 2020: 7 · 2019: 2
FWCI
6.38
Type
journal article
Language
en
Open access
Locations
  • Journal of Human Nutrition and Dietetics (publishedVersion)
  • PubMed (publishedVersion)
  • PubMed Central (acceptedVersion)
  • Research Portal (King's College London) (submittedVersion)
Funders
  • Columbia University
  • National Center for Advancing Translational Sciences (UL1 TR000040)
  • National Institutes of Health
Topics
  • Health Sciences › Medicine › Gastroenterology › Celiac Disease Research and Management
  • Health Sciences › Medicine › Psychiatry and Mental health › Child Nutrition and Feeding Issues
  • Social Sciences › Psychology › Clinical Psychology › Eating Disorders and Behaviors
Keywords
celiac disease, adolescents, gluten-free diet, quality of life, dietary adherence, disordered eating, psychosocial well-being, eating disorder risk
MeSH terms
Adaptation, Psychological, Adolescent, Feeding and Eating Disorders, Celiac Disease, Cross-Sectional Studies, Feeding Behavior, Female, Humans, Male, Patient Compliance, Quality of Life, Surveys and Questionnaires, Risk Factors, Qualitative Research, Diet, Gluten-Free

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