Skip to main content

Advertisement

Log in

The Canadian Celiac Health Survey

  • Original Paper
  • Published:
Digestive Diseases and Sciences Aims and scope Submit manuscript

Abstract

The purpose of this study was to characterize the diagnostic process, frequency of associated disorders, family history, and impact of a gluten-free diet in individuals with celiac disease. All members of the Canadian Celiac Association (n=5240) were surveyed with a questionnaire. Respondents included 2681 adults with biopsy-proven celiac disease. The mean age was 56 years. Most common presenting symptoms included abdominal pain (83%), diarrhea (76%), and weight loss (69%). The mean delay in diagnosis was 11.7 years. Diagnoses made prior to celiac disease included anemia (40%), stress (31%), and irritable bowel syndrome (29%). Osteoporosis was common. Prior to diagnosis, 27% of respondents consulted three or more doctors about their symptoms. Delays in diagnosis of celiac disease remain a problem. Associated medical conditions occur frequently. More accurate food labeling is needed. Improved awareness of celiac disease and greater use of serological screening tests may result in earlier diagnosis and reduced risk of associated conditions.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  1. Catassi C, Ratsch IM, Fabiani E, Rossini M, Bordicchia F, Candela F, Coppa GV, Giorgi PL (1994) Celiac disease in the year 2000; Exploring the iceberg. Lancet 343(8891):200–203

    Article  PubMed  CAS  Google Scholar 

  2. Green PHR, Jabri B (2003) Coeliac disease. Lancet 362:383–391

    Article  PubMed  CAS  Google Scholar 

  3. Fasano A (2003) Celiac disease—how to handle a clinical chameleon. N Engl J Med 348:2568–2570

    Article  PubMed  Google Scholar 

  4. Bardella MT, Fredella C, Saladino V, Trovato C, Cesana BM, Quatrini M, Prampolini L (2005) Gluten intolerance: gender and age related differences in symptoms. Scand J Gastroenterol 40(1):15–19

    Article  PubMed  Google Scholar 

  5. NIH (2005) NIH Consensus Development Conference Statement on Celiac Disease, June 28–30, 2004. Gastroenterology 128(4; Suppl 1):S1–S9

    Google Scholar 

  6. Tommasini A, Not T, Kiren V, Baldas V, Santon D, Trevisiol C, Berti I, Neri E, Gerarduzzi T, Bruno I, Lenhardt A, Zamuner E, Spano A, Crovella S, Martellossi S, Torre G, Sblattero D, Marzari R, Bradbury A, Tamburlini G, Ventura A (2004) Mass screening for celiac disease using antihuman transglutaminase antibody assay. Arch Dis Child 89(6):512–515

    Article  PubMed  CAS  Google Scholar 

  7. Mäki M, Collin P (1997) Coeliac disease. Lancet 349:1755–1759

    Article  PubMed  Google Scholar 

  8. Fasano A, Catassi C (2001) Current approaches to diagnosis and treatment of celiac disease: an evolving spectrum. Gastroenterology 120:636–651

    Article  PubMed  CAS  Google Scholar 

  9. Nelsen DA (2002) Gluten-sensitive enteropathy (celiac disease) more common than you think. Am Family Phys 66:2259–2266

    Google Scholar 

  10. Lanzini A, Villanacci V, Apillan N, Lanzarotto F, Pirali F, Amato M, Indelicato A, Scarcella C, Donato F (2005) Epidemiological, clinical and histopathologic characteristics of celiac disease: results of a case-finding population-based program in an Italian community. Scand J Gastroenterol 40(8):950–957

    Article  PubMed  Google Scholar 

  11. Fasano A, Berti I, Gerdarduzzi 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(3):286–292

    Article  PubMed  Google Scholar 

  12. Baldas V, Tommasini A, Trevisiol C, Berti I, Fasano A, Sblattero D, Bradbury A, Marzari R, Barillari G, Ventura A, Not T (2000) Development of a novel rapid non-invasive screening test for celiac disease. Gut 47(5):628–631

    Article  PubMed  CAS  Google Scholar 

  13. Meyer D, Stavropoulos S, Diamond B, Shane E, Green PHR (2001) Osteoporosis in a North American adult population with celiac disease. Am J Gastroenterol 96:112–119

    PubMed  CAS  Google Scholar 

  14. Gasbarrini A, Torre ES, Trivellini C, De Carolis S, Caruso A, Gasbarrini G (2000) Recurrent spontaneous abortion and intrauterine fetal growth retardation as symptoms of coeliac disease. Lancet 356:399–400

    Article  PubMed  CAS  Google Scholar 

  15. Stazi AV, Mantovani A (2000) A risk factor for female fertility and pregnancy: celiac disease. Gynecol Endocrinol 14:454–463

    Article  PubMed  CAS  Google Scholar 

  16. Ludvigsson JF, Ludvigsson J (2001) Coeliac disease in the father affects the newborn. Gut 49:169–175

    Article  PubMed  CAS  Google Scholar 

  17. Holmes GKT, Prior P, Lane MR, Pope D, Allan RN (1989) Malignancy in coeliac disease—effect of a gluten free diet. Gut 30(3):333–338

    PubMed  CAS  Google Scholar 

  18. Green PHR, Goyal RK, Lo W, Fleischauer AT, Neugut AI (2001) Increased risk of malignancies in celiac disease (CD) patients in the US. Am J Gastroenterol 96(9):S106

    Article  Google Scholar 

  19. Smedby KE, Akerman M, Hildebrand H, Glimelius B, Ekbom A, Askling J (2005) Malignant lymphomas in coeliac disease: evidence of increased risks for lymphoma types other than enteropathy type T cell lymphoma. Gut 54(1):54–59

    Article  PubMed  CAS  Google Scholar 

  20. De Vitis I, Ghirlanda G, Gasbarrini G (1996) Prevalence of coeliac disease in type I diabetes: a multicentre study. Acta Paediatr Suppl 412:56–57

    PubMed  CAS  Google Scholar 

  21. Cronin CC, Shanahan F (1997) Insulin-dependent diabetes mellitus and coeliac disease. Lancet 349:1096–1097

    Article  PubMed  CAS  Google Scholar 

  22. Gillett PM, Gillett HR, Israel DM, Metzger DL, Stewart L, Chanoine J-P, Freeman HJ (2001) High prevalence of celiac disease in patients with type I diabetes detected by antibodies to endomysium and tissue transglutaminase. Can J Gastroenterol 15(5):297–301

    PubMed  CAS  Google Scholar 

  23. Ventura A, Magazzu G, Greco L (1999) Duration of exposure to gluten and risk for autoimmune disorders in patients with celiac disease. Gastroenterology 117:297–303

    Article  PubMed  CAS  Google Scholar 

  24. Hakanen M, Luotola K, Salmi J, Laippala P, Kaukinen K, Collin P (2001) Clinical and subclinical autoimmune thryoid disease in adult celiac disease. Dig Dis Sci 46(12):2631–2635

    Article  PubMed  CAS  Google Scholar 

  25. Sategna Guidetti C, Grosso SB, Grosso S, Mengozzi G, Aimo G, Zaccaria T, Di Stefano M, Isaia GC (2000) The effects of 1-year gluten withdrawal on bone mass, bone metabolism and nutritional status in newly-diagnosed adult coeliac disease patients. Aliment Pharmacol Ther 14:35–43

    Article  PubMed  CAS  Google Scholar 

  26. Vazquez H, Mazure R, Gonzalez D, Flores D, Pedreira S, Niveloni S, Smecuol E, Mauriño E, Bai JC (2000) Risk of fractures in celiac disease patients: a cross-sectional, case-control study. Am J Gastroenterol 95(1):183–189

    Article  Google Scholar 

  27. Ciacci C, Cirillo M, Auriemma G, Di Dato G, Sabbatini F, Mazzaca G (1996) Celiac disease and pregnancy outcome. Am J Gastroenterol 91(4):718–722

    PubMed  CAS  Google Scholar 

  28. Martinelli P, Troncone R, Paparo F, Torre P, Trapanese E, Fasano C, Lamberti A, Budillon G, Nardone G, Greco L (2000) Coeliac disease and unfavourable outcome of pregnancy. Gut 46(3):332–335

    Article  PubMed  CAS  Google Scholar 

  29. 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, Club del Tenue Study Group (2001) Mortality in patients with celiac disease and their relatives: a cohort study. Lancet 358:356–361

    Article  PubMed  CAS  Google Scholar 

  30. Hervonen K, Vornanen M, Kautiainen H, Collin P, Reunala T (2005) Lymphoma in patients with dermatitis herpetiformis and their first-degree relatives. Br J Dermatol 152(1):82–86

    Article  PubMed  CAS  Google Scholar 

  31. Zarkadas M, Case S (2005) Celiac disease and the gluten-free diet—an overview. Top Clin Nutr 20:127–138

    Google Scholar 

  32. Riddle DL, Lee MS, Stratford PW (2001) Use of SF-36 and SF-12 health status measures a quantitative comparison for groups versus individual patients. Med Care 30:867–878

    Article  Google Scholar 

  33. Cranney A, Zarkadas M, Graham ID, Switzer C (2003) Canadian Celiac Health Survey–Ottawa Pilot. Biomed Central 3:8. http://www.biomedcentral.com/1471-230X/3/8

  34. Hopman WM, Towheed T, Anastassiades T, Tenenhouse A, Poliquin S, Berger C, Joseph L, Brown JP, Murray TM, Adachi JD, Hanley DA, Papadimitropoulos E (2000) Canadian normative data for the SF-36 health survey. CMAJ 163(3):265–271

    PubMed  CAS  Google Scholar 

  35. Green PHR, Stavropoulos SN, Panagi SG, Goldstein S, McMahon D, Absan H, Neugut A (2001) Characteristics of adult celiac disease in the USA: results of a national survey. Am J Gastroenterol 96(1):126–131

    Article  PubMed  Google Scholar 

  36. Davidson AGF, Campbell JA (1992) Celiac disease and dermatitis herpetiformis. Can Fam Phys 38:2604–2608

    Google Scholar 

  37. Zipser RD, Patel S, Yahya KZ, Baisch DW, Monarch E (2003) Presentations of adult celiac disease in a nationwide patient support group. Dig Dis Sci 48:761–764

    Article  PubMed  Google Scholar 

  38. O'Leary C, Wieneke P, Buckley S., O'Regan P, Cronin CC, Quigley EM, Shanahan F (2002) Celiac disease and irritable bowel-type symptoms. Am J Gastroenterol 97(6):1463–1467

    Article  PubMed  Google Scholar 

  39. Sanders DS, Carter MJ, Hurlstone DP Pearce A, Ward AM, McAlindon ME, Lobo AJ (2001) Association of adult coeliac disease with irritable bowel syndrome: a case-control study in patients fulfilling ROME II criteria referred to secondary care. Lancet 358:1504–1508

    Article  PubMed  CAS  Google Scholar 

  40. Treem WR (2004) Emerging concepts in celiac disease. Curr Opin Pediatr 16:552–559

    Article  PubMed  Google Scholar 

  41. Logan RFA, Tucker G, Rifkind E, Heading RC, Ferguson A (1983) Changes in clinical features of celiac disease in adults in Edinburgh and the Lothians 1960–70. Br Med J 286:95–97

    Article  CAS  Google Scholar 

  42. Murray JA, Watson T, Clearman B, Mitros F (2004) Effect of a gluten-free diet on gastrointestinal symptoms in celiac disease. Am J Clin Nutr 79(4):669–673

    PubMed  CAS  Google Scholar 

  43. Gabrielli M, Cremonini F, Fiore G, Addolorato G, Padalino C, Candelli M, De Leo ME, Santarelli L, Giacovazzo M, Pola P, Gasbarrini A (2003) Association between migraine and celiac disease: results from a preliminary case-control and therapeutic study. Am J Gastroenterol 98(3):625–629

    Article  PubMed  Google Scholar 

  44. Ojetti V, Nucera G, Migneco A, Gabrielli M, Lauritano C, Danese S, Assunta Zocco M, Nista EC, Cammarota G, De Lorenzo A, Gasbarrini G, Gasbarrini A (2005) High prevalence of celiac disease in patients with lactose intolerance. Digestion 71(2):106–110

    Article  PubMed  Google Scholar 

  45. Mitka M (2004) Higher profile needed for celiac disease, underdiagnosis fosters treatment delays says panel. JAMA 292:913–914

    Article  PubMed  CAS  Google Scholar 

  46. Hill ID, Dirks MH, Liptak GS, Colletti RB, Fasano A, Guandalini S, Hoffenberg EJ, Horvath K, Murray JA, Pivor M, Seidman EG, North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (2005) 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 40(1):1–19

    Article  PubMed  Google Scholar 

  47. Midhagen G, Aberg A-K, Olcen P, Jarnerot G, Valdimarsson T, Dahlbom I, Hansson T, Strom M (2004) Antibody levels in adult patients with coeliac disease during gluten-free diet: a rapid initial decrease of clinical importance. J Int Med 256(6):519–524

    Article  CAS  Google Scholar 

  48. Midhagen G, Hallert C (2003) High rate of gastrointestinal symptoms in celiac patients living on a gluten-free diet: controlled study. Am J Gastroenterol 98:2023–2026

    Article  PubMed  CAS  Google Scholar 

  49. Abdulkarim AS, Burgart LJ, See J, Murray JA (2002) Etiology of nonresponsive celiac disease; results of a systematic approach. Am J Gastroenterol 97:2016–2021

    Article  PubMed  Google Scholar 

  50. Case S (2005) The gluten-free diet: how to provide effective education and resources. Gastroenterology 128:S128–S134

    Article  PubMed  Google Scholar 

  51. Kemppainen TA, Kosma V-M, Janatuinen EK, Julkunen RJ, Pikkarainen PH, Uusitupa MI (1998) Nutritional status of newly diagnosed celiac disease patients before and after the institution of a celiac disease diet—association with the grade of mucosal villous atrophy. Am J Clin Nutr 67(3):482–487

    PubMed  CAS  Google Scholar 

  52. Annibale B, Severi C, Chistolini A, Giorgio Antonelli G, Edith Lahner E, Adriana Marcheggiano A, Carlo Iannoni C, Bruno Monarca B, Delle Fave G (2001) Efficacy of gluten-free diet alone on recovery from iron deficiency anemia in adult celiac patients. Am J Gastroenterol 96(1):132–137

    Article  PubMed  CAS  Google Scholar 

  53. Ferretti J, Mazure R, Tanoue P, Marino A, Cointry G, Vazquez H, Niveloni S, Pedreira S, Maurino E, Zanchetta J, Bai JC (2003) Analysis of the structure and strength of bones in celiac disease patients. Am J Gastroenterol 98(2):382–390

    Article  PubMed  Google Scholar 

  54. Bernstein CN, Leslie WD, LeBoff MS (2003) AGA technical review on osteoporosis in gastrointestinal diseases. Gastroenterology 124:795–841

    Article  PubMed  Google Scholar 

  55. Valdimarsson T, Toss G, Löfman O, Ström M (2000) Three years' follow-up of bone density in adult coeliac disease: significance of secondary hyperparathyroidism. Scand J Gastroenterol 35:274–280

    Article  PubMed  CAS  Google Scholar 

  56. Cranney A, Rostom A, Richmond S, Dube C, Saloogee N, Garritty C, Moher D, Sampson M, Zhang L, Yazdi F, Mamaladze V, Pan I, MacNeil J (2005) Consequences of testing for celiac disease. Gastroenterology 128(4):S109–S120

    Article  PubMed  Google Scholar 

  57. Gale J, Simmonds PD, Mead GM, Sweetenham JW, Wright DH (2000) Enteropathy-type intestinal T-cell lymphoma: clinical features and treatment of 31 patients in a single center. J Clin Oncol 18(4):795–803

    PubMed  CAS  Google Scholar 

  58. Askling J, Linet M, Gridley G, Halstensen TS, Ekstrom K, Ekbom A (2002) Cancer incidence in a population-based cohort of individuals hospitalized with celiac disease or dermatitis herpetiformis. Gastroenterology 123(5):1428–1435

    Article  PubMed  Google Scholar 

  59. 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(3):191–195

    Article  PubMed  Google Scholar 

  60. Norgard B, Fonager K, Sorensen HT, Olsen J (1999) Birth outcomes of women with celiac disease: a nationwide historical cohort study. Am J Gastroenterol 94:2435–2440

    Article  PubMed  CAS  Google Scholar 

  61. Ludvigsson JF, Montgomery SM, Ekbom A (2005) Celiac disease and risk of adverse fetal outome: a population-based cohort study. Gastroenterology 129:454–463

    Article  PubMed  Google Scholar 

  62. Greco L, Veneziano A, Di Donato L, Zampella C, Pecoraro M, Paladini D, Paparo F, Vollaro A, Martinelli P (2003) Undiagnosed coeliac disease does not appear to be associated with unfavorable outcome of pregnancy. Gut 53(1):149–151

    Article  Google Scholar 

  63. Petaros P, Martelossi S, Tommasini A, Torre G, Caradonna M, Ventura A (2002) Prevalence of autoimmune disorders in relatives of patients with celiac disease. Dig Dis Sci 47:1427–1431

    Article  PubMed  CAS  Google Scholar 

  64. Hallert C, Granno C, Grant C, Hulten S, Midhagen G, Strom M, Svensson H, Valdimarsson T, Wickstrom T (1998) Quality of life of adult coeliac patients treated for 10 years. Scand J Gastoenterol 33(9):933–938

    Article  CAS  Google Scholar 

  65. Hallert C, Granno C, Hulten G (2002) Living with celiac disease. Controlled study on the burden of illness. Scand J Gastroenterol 37:39–42

    CAS  Google Scholar 

  66. Usai P, Minerba I, Marini B, Cossu R, Spada S, Carpiniello B, Cuomo R, Boy MF (2002) Case control study on health-related quality of life in adult coeliac disease. Dig Liver Dis 34(8):547–552

    Article  PubMed  CAS  Google Scholar 

  67. Lee A, Newman J (2003) Celiac disease: its impact on quality of life. J Am Diet Assoc 103:1533–1535

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

The authors would like to thank the CCA Board of Directors and the Institute of Research and Education for their generous financial support, the members of the CCA for their participation in the survey, Drs. A. Fasano, P. Green, and K. Stobart for reviewing the questionnaire, Dialogos consultants J. Lawn and Dr. D. Harvey for assisting with questionnaire development, and M. Prince for assistance with data entry and analysis.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Mohsin Rashid.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Cranney, A., Zarkadas, M., Graham, I.D. et al. The Canadian Celiac Health Survey. Dig Dis Sci 52, 1087–1095 (2007). https://doi.org/10.1007/s10620-006-9258-2

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10620-006-9258-2

Keywords

Navigation