Digestive Diseases and Sciences

, Volume 53, Issue 6, pp 1573–1581 | Cite as

Factors that Influence Adherence to a Gluten-Free Diet in Adults with Celiac Disease

  • Daniel A. LefflerEmail author
  • Jessica Edwards-George
  • Melinda Dennis
  • Detlef Schuppan
  • Francis Cook
  • Debra L. Franko
  • Jessica Blom-Hoffman
  • Ciaran P. Kelly
Original Research


Objective The only treatment for celiac disease is lifelong adherence to a gluten-free diet, yet adherence is limited and factors influencing adherence are poorly understood. The purpose of this study was to determine factors influencing gluten-free diet adherence in adults with celiac disease. Methods A questionnaire was developed and administered to 154 adults with celiac disease who then underwent a standardized gluten-free diet evaluation by an experienced nutritionist. Multivariate analysis was conducted to determine factors associated with adherence level. Results Thirteen factors hypothesized to contribute to gluten-free diet adherence were found to be significantly associated with improved adherence including: understanding of the gluten-free diet, membership of a celiac disease advocacy group, and perceived ability to maintain adherence despite travel or changes in mood or stress (P < 0.001). Conclusions This study identified specific factors correlated with gluten-free diet adherence. These results provide a foundation for the design of educational interventions to improve adherence.


Celiac disease Gluten free diet Compliance Adherence 



Beth Israel Deaconess Medical Center


Celiac disease


Global celiac assessment scale


Gluten-free diet


Tissue transglutaminase



This study was supported by charitable donations to the Celiac Center at BIDMC, the Celiac Sprue Association, NIH T32 training grant DK07760, and the Harvard-Thorndike General Clinical Research Center M01 RR01032.


  1. 1.
    Dieterich W, Esslinger B, Schuppan D (2003) Pathomechanisms in celiac disease. Int Arch Allergy Immunol 132:98–108PubMedCrossRefGoogle Scholar
  2. 2.
    Fasano A, Berti I, Gerarduzzi T, Not T, Colletti RB, Drago S, Elitsur Y, Green PH, Guandalini S, Hill ID, Pietzak M, Ventura A, Thorpe M, Kryszak D, Fornaroli F, Wasserman SS, Murray JA, Horvath K (2003) Prevalence of celiac disease in at-risk and not-at-risk groups in the United States: a large multicenter study. Arch Intern Med 163:286–292PubMedCrossRefGoogle Scholar
  3. 3.
    Not T, Horvath K, Hill ID, Partanen J, Hammed A, Magazzu G, Fasano A (1998) Celiac disease risk in the USA: high prevalence of antiendomysium antibodies in healthy blood donors. Scand J Gastroenterol 33:494–498PubMedCrossRefGoogle Scholar
  4. 4.
    Catassi C, Fabiani E, Ratsch IM, Coppa GV, Giorgi PL, Pierdomenico R, Alessandrini S, Iwanejko G, Domenici R, Mei E, Miano A, Marani M, Bottaro G, Spina M, Dotti M, Montanelli A, Barbato M, Viola F, Lazzari R, Vallini M, Guariso G, Plebani M, Cataldo F, Traverso G, Ventura A et al (1996) The coeliac iceberg in Italy. A multicentre antigliadin antibodies screening for coeliac disease in school-age subjects. Acta Paediatr Suppl 412:29–35PubMedCrossRefGoogle Scholar
  5. 5.
    Maki M, Mustalahti K, Kokkonen J, Kulmala P, Haapalahti M, Karttunen T, Ilonen J, Laurila K, Dahlbom I, Hansson T, Hopfl P, Knip M (2003) Prevalence of Celiac disease among children in Finland. N Engl J Med 348:2517–2524PubMedCrossRefGoogle Scholar
  6. 6.
    Accomando S, Cataldo F (2004) The global village of celiac disease. Dig Liver Dis 36:492–498PubMedCrossRefGoogle Scholar
  7. 7.
    West J, Logan RF, Smith CJ, Hubbard RB, Card TR (2004) Malignancy and mortality in people with coeliac disease: population based cohort study. BMJ 329:716–719PubMedCrossRefGoogle Scholar
  8. 8.
    Corrao G, Corazza GR, Bagnardi V, Brusco G, Ciacci C, Cottone M, Sategna Guidetti C, Usai P, Cesari P, Pelli MA, Loperfido S, Volta U, Calabro A, Certo M (2001) Mortality in patients with coeliac disease and their relatives: a cohort study. Lancet 358:356–361PubMedCrossRefGoogle Scholar
  9. 9.
    Tau C, Mautalen C, De Rosa S, Roca A, Valenzuela X (2006) Bone mineral density in children with celiac disease. Effect of a Gluten-free diet. Eur J Clin Nutr 60:358–363PubMedCrossRefGoogle Scholar
  10. 10.
    Dewar DH, Ciclitira PJ (2005) Clinical features and diagnosis of celiac disease. Gastroenterology 128:S19–S24PubMedCrossRefGoogle Scholar
  11. 11.
    Green PH, Fleischauer AT, Bhagat G, Goyal R, Jabri B, Neugut AI (2003) Risk of malignancy in patients with celiac disease. Am J Med 115:191–195PubMedCrossRefGoogle Scholar
  12. 12.
    Zarkadas M, Cranney A, Case S, Molloy M, Switzer C, Graham ID, Butzner JD, Rashid M, Warren RE, Burrows V (2006) The impact of a gluten-free diet on adults with coeliac disease: results of a national survey. J Hum Nutr Diet 19:41–49PubMedCrossRefGoogle Scholar
  13. 13.
    Mustalahti K, Lohiniemi S, Collin P, Vuolteenaho N, Laippala P, Maki M (2002) Gluten-free diet and quality of life in patients with screen-detected celiac disease. Eff Clin Pract 5:105–113PubMedGoogle Scholar
  14. 14.
    Pynnonen PA, Isometsa ET, Verkasalo MA, Kahkonen SA, Sipila I, Savilahti E, Aalberg VA (2005) Gluten-free diet may alleviate depressive and behavioural symptoms in adolescents with coeliac disease: a prospective follow-up case-series study. BMC Psychiatry 5:14PubMedCrossRefGoogle Scholar
  15. 15.
    Addolorato G, Capristo E, Ghittoni G, Valeri C, Masciana R, Ancona C, Gasbarrini G (2001) Anxiety but not depression decreases in coeliac patients after one-year gluten-free diet: a longitudinal study. Scand J Gastroenterol 36:502–506PubMedCrossRefGoogle Scholar
  16. 16.
    Hogberg L, Grodzinsky E, Stenhammar L (2003) Better dietary compliance in patients with coeliac disease diagnosed in early childhood. Scand J Gastroenterol 38:751–754PubMedCrossRefGoogle Scholar
  17. 17.
    Ciacci C, Cirillo M, Cavallaro R, Mazzacca G (2002) Long-term follow-up of celiac adults on gluten-free diet: prevalence and correlates of intestinal damage. Digestion 66:178–185PubMedCrossRefGoogle Scholar
  18. 18.
    Van Meensel B, Hiele M, Hoffman I, Vermeire S, Rutgeerts P, Geboes K, Bossuyt X (2004) Diagnostic accuracy of ten second-generation (human) tissue transglutaminase antibody assays in celiac disease. Clin Chem 50:2125–2135PubMedCrossRefGoogle Scholar
  19. 19.
    Ciacci C, D’Agate C, De Rosa A, Franzese C, Errichiello S, Gasperi V, Pardi A, Quagliata D, Visentini S, Greco L (2003) Self-rated quality of life in celiac disease. Dig Dis Sci 48:2216–2220PubMedCrossRefGoogle Scholar
  20. 20.
    Pietzak MM (2005) Follow-up of patients with celiac disease: achieving compliance with treatment. Gastroenterology 128:S135–S141PubMedCrossRefGoogle Scholar
  21. 21.
    Mayer M, Greco L, Troncone R, Auricchio S, Marsh MN (1991) Compliance of adolescents with coeliac disease with a gluten free diet. Gut 32:881–885PubMedCrossRefGoogle Scholar
  22. 22.
    Fabiani E, Catassi C, Villari A, Gismondi P, Pierdomenico R, Ratsch IM, Coppa GV, Giorgi PL (1996) Dietary compliance in screening-detected coeliac disease adolescents. Acta Paediatr Suppl 412:65–67PubMedCrossRefGoogle Scholar
  23. 23.
    Fabiani E, Taccari LM, Ratsch IM, Di Giuseppe S, Coppa GV, Catassi C (2000) Compliance with gluten-free diet in adolescents with screening-detected celiac disease: a 5-year follow-up study. J Pediatr 136:841–843PubMedCrossRefGoogle Scholar
  24. 24.
    Kumar PJ, Walker-Smith J, Milla P, Harris G, Colyer J, Halliday R (1988) The teenage coeliac: follow up study of 102 patients. Arch Dis Child 63:916–920PubMedGoogle Scholar
  25. 25.
    Bardella MT, Molteni N, Prampolini L, Giunta AM, Baldassarri AR, Morganti D, Bianchi PA (1994) Need for follow up in coeliac disease. Arch Dis Child 70:211–213PubMedCrossRefGoogle Scholar
  26. 26.
    Rashid M, Cranney A, Zarkadas M, Graham ID, Switzer C, Case S, Molloy M, Warren RE, Burrows V, Butzner JD (2005) Celiac disease: evaluation of the diagnosis and dietary compliance in Canadian children. Pediatrics 116:e754–e759PubMedCrossRefGoogle Scholar
  27. 27.
    Vahedi K, Mascart F, Mary JY, Laberenne JE, Bouhnik Y, Morin MC, Ocmant A, Velly C, Colombel JF, Matuchansky C (2003) Reliability of antitransglutaminase antibodies as predictors of gluten-free diet compliance in adult celiac disease. Am J Gastroenterol 98:1079–1087PubMedCrossRefGoogle Scholar
  28. 28.
    Peters U, Askling J, Gridley G, Ekbom A, Linet M (2003) Causes of death in patients with celiac disease in a population-based Swedish cohort. Arch Intern Med 163:1566–1572PubMedCrossRefGoogle Scholar
  29. 29.
    Sheiner E, Peleg R, Levy A (2006) Pregnancy outcome of patients with known celiac disease. Eur J Obstet Gynecol Reprod Biol 129(1):41–45PubMedCrossRefGoogle Scholar
  30. 30.
    Cranney A, Zarkadas M, Graham ID, Switzer C (2003) The Canadian celiac health survey—the Ottawa chapter pilot. BMC Gastroenterol 3:8PubMedCrossRefGoogle Scholar
  31. 31.
    Green PHR, Stavropoulos SN, Panagi SG, Goldstein SL, McMahon DJ, Absan H, Neugut AI (2001) Characteristics of adult celiac disease in the USA: results of a national survey. Am J Gastroenterol 96:126–131PubMedCrossRefGoogle Scholar
  32. 32.
    Fera T, Cascio B, Angelini G, Martini S, Guidetti CS (2003) Affective disorders and quality of life in adult coeliac disease patients on a gluten-free diet. Eur J Gastroenterol Hepatol 15:1287–1292PubMedCrossRefGoogle Scholar
  33. 33.
    Lee SK, Lo W, Memeo L, Rotterdam H, Green PH (2003) Duodenal histology in patients with celiac disease after treatment with a gluten-free diet. Gastrointest Endosc 57:187–191PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2007

Authors and Affiliations

  • Daniel A. Leffler
    • 1
    Email author
  • Jessica Edwards-George
    • 1
    • 2
  • Melinda Dennis
    • 1
  • Detlef Schuppan
    • 1
  • Francis Cook
    • 3
  • Debra L. Franko
    • 2
  • Jessica Blom-Hoffman
    • 2
  • Ciaran P. Kelly
    • 1
  1. 1.Department of GastroenterologyThe Celiac Center, Dana 501, Beth Israel Deaconess Medical CenterBostonUSA
  2. 2.Department of PsychologyNortheastern UniversityBostonUSA
  3. 3.Department of EpidemiologyHarvard School of Public HealthBostonUSA

Personalised recommendations