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.
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References
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
Green PHR, Jabri B (2003) Coeliac disease. Lancet 362:383–391
Fasano A (2003) Celiac disease—how to handle a clinical chameleon. N Engl J Med 348:2568–2570
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
NIH (2005) NIH Consensus Development Conference Statement on Celiac Disease, June 28–30, 2004. Gastroenterology 128(4; Suppl 1):S1–S9
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
Mäki M, Collin P (1997) Coeliac disease. Lancet 349:1755–1759
Fasano A, Catassi C (2001) Current approaches to diagnosis and treatment of celiac disease: an evolving spectrum. Gastroenterology 120:636–651
Nelsen DA (2002) Gluten-sensitive enteropathy (celiac disease) more common than you think. Am Family Phys 66:2259–2266
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
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
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
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
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
Stazi AV, Mantovani A (2000) A risk factor for female fertility and pregnancy: celiac disease. Gynecol Endocrinol 14:454–463
Ludvigsson JF, Ludvigsson J (2001) Coeliac disease in the father affects the newborn. Gut 49:169–175
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
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
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
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
Cronin CC, Shanahan F (1997) Insulin-dependent diabetes mellitus and coeliac disease. Lancet 349:1096–1097
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
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
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
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
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
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
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
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
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
Zarkadas M, Case S (2005) Celiac disease and the gluten-free diet—an overview. Top Clin Nutr 20:127–138
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
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
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
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
Davidson AGF, Campbell JA (1992) Celiac disease and dermatitis herpetiformis. Can Fam Phys 38:2604–2608
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
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
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
Treem WR (2004) Emerging concepts in celiac disease. Curr Opin Pediatr 16:552–559
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
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
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
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
Mitka M (2004) Higher profile needed for celiac disease, underdiagnosis fosters treatment delays says panel. JAMA 292:913–914
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
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
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
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
Case S (2005) The gluten-free diet: how to provide effective education and resources. Gastroenterology 128:S128–S134
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
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
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
Bernstein CN, Leslie WD, LeBoff MS (2003) AGA technical review on osteoporosis in gastrointestinal diseases. Gastroenterology 124:795–841
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
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
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
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
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
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
Ludvigsson JF, Montgomery SM, Ekbom A (2005) Celiac disease and risk of adverse fetal outome: a population-based cohort study. Gastroenterology 129:454–463
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
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
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
Hallert C, Granno C, Hulten G (2002) Living with celiac disease. Controlled study on the burden of illness. Scand J Gastroenterol 37:39–42
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
Lee A, Newman J (2003) Celiac disease: its impact on quality of life. J Am Diet Assoc 103:1533–1535
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.
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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
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DOI: https://doi.org/10.1007/s10620-006-9258-2