Digestive Diseases and Sciences

, Volume 48, Issue 4, pp 761–764 | Cite as

Presentations of Adult Celiac Disease in a Nationwide Patient Support Group

  • Robert D. Zipser
  • Sunil Patel
  • Kareem Z. Yahya
  • Donald W. Baisch
  • Elaine Monarch


Recent epidemiological studies primarily from Europe document that adult celiac disease often lacks the classic presentation of steatorrhea and weight loss. There are few surveys of adult celiac disease in the United States. We surveyed the large population of a nationwide patient support group to determine their disease presentations. In the initial survey (N = 1032 respondents), the median age at onset was 46 years, and the diagnosis of adult celiac disease was often delayed (median 12 months, with 21% delayed over 10 years). Only 32% of adults were underweight, and only about 50% reported frequent diarrhea and weight loss. A second survey documented that common presenting symptoms were fatigue (82%), abdominal pain (77%), bloating or gas (73%), and anemia (63%). Initial physician diagnoses were often irritable bowel syndrome (37%), psychological disorders (29%), and fibromyalgia (9%). These initial presentations are similar to those in Europe and often resemble irritable bowel syndrome.

celiac disease irritable bowel syndrome diarrhea anemia 


Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.


  1. 1.
    Ciclitira PJ: AGA technical review on celiac sprue. Gastroenterology 120:1526-1540, 2001Google Scholar
  2. 2.
    Fasano A, Catassi C: Current approaches to diagnosis and treatment of celiac disease: an evolving spectrum. Gastroenterology 120:636-651, 2001Google Scholar
  3. 3.
    Mann JG, Brown WR, Kern F Jr: The subtle and variable clinical expressions of gluten-induced enteropathy (adult celiac disease, nontropical sprue). Am J Med 48:357-366, 1970Google Scholar
  4. 4.
    Logan RFA, Tucker C, Rifkind EA, Heading RC, Ferguson A: Changes in clinical features of coeliac disease in adults in Edinburgh and the Lothians 1960–1979. BMJ 286:95-97, 1983Google Scholar
  5. 5.
    Maki M, Collin P: Coeliac disease. Lancet 349:1755-1759, 1997Google Scholar
  6. 6.
    Farrell RJ, Kelly CP: Current concepts: celiac sprue. N Engl J Med 346:180-188, 2002Google Scholar
  7. 7.
    Holmes G, Catassi C: Coeliac Disease. Oxford, England, Health Press—Fast Facts, 2000Google Scholar
  8. 8.
    Talley NJ, Valdovinos M, Petterson TM, Carpenter HA, Melton LJ III: Epidemiology of celiac sprue: a community-based study. Am J Gastroenterol 89:843-846, 1994Google Scholar
  9. 9.
    NHLBI: Clinical guidelines on the identification, evaluation, and treatment of overweight and obesity in adults. NIH Publication No. 98-4083, Washington, DC, National Institutes of Health, 1998Google Scholar
  10. 10.
    Horwitz BJ, Fisher RS: Current concepts: The irritable bowel syndrome. N Engl J Med 24:1846-1850, 2001Google Scholar
  11. 11.
    de Freitas IN, Sipahi AM, Damiao AOMC, de Brito T, Cancado ELR, Leser PG, Laudanna AA: Celiac disease in Brazilian adults. J Clin Gastroenterol 34:430-434, 2002Google Scholar
  12. 12.
    Sollid LM, Thorsby E: HLA susceptibility genes in celiac disease: genetic mapping and role in pathogenesis. Gastroenterology 105:910-922, 1993Google Scholar
  13. 13.
    Smecuol E, Maurino E, Vazquez H, Pedreira S, Neveloni S, Mazure R, Boerr L, Bai JC: Gynecological and obstetric disorders in coeliac disease: frequent clinical onset during pregnancy or the puerperium. Eur J Gastroenterol Hepatol 8:63-89, 1996Google Scholar
  14. 14.
    Paulley JW, Fairweather FA, Leeming A: Post-gastrectomy steatorrhea and patchy jejunal atrophy. Lancet 1:406-407, 1957Google Scholar
  15. 15.
    Kagnoff MF, Austin RK, Hubert JJ, Bernardin JE, Kasarda DD: Possible role for a human adenovirus in the pathogenesis of celiac disease. J Exp Med 160:1544-1557, 1984Google Scholar
  16. 16.
    Howdle PD: Clinical presentation and course of celiac disease in adults. In Gluten-Sensitive Enteropathy. Frontiers of Gastrointestinal Research, Vol 19. D Branski, P Rozen, MF Kagnoff (eds). Basel, Karger, 1992, pp 141-152Google Scholar
  17. 17.
    Snook JA, Duyer L, Lee-Elliott C, Khan S, Wheeler DW, Nicholas DS: Adult coeliac disease and cigarette smoking. Gut 30:60-62, 1996Google Scholar
  18. 18.
    Catassi C, Fabiani E, Ratsch IM, Coppa GV, Giorgi PL, Peerdomenico 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, Ughi C, Chiaravalloti G, Baldassarre M, Scarcella P, Bascietto F, Ceglie L, Valenti A, Paolucci P, Caradonna M, Bravi E, Ventura A: The coeliac iceberg in Italy. A multicentre antigliadin antibodies screening for coeliac diseae in school-age subjects. Acta Paediatr 85 (suppl 412):29-35, 1996Google Scholar
  19. 19.
    Kolho KL, Farkkila MA, Savilahti E: Undiagnosed coeliac disease is common in Finnish adults. Scand J Gastroenterol 33:1280-1283, 1998Google Scholar
  20. 20.
    Ascher H, Krantz I, Kristiansson B: Increasing incidence of coeliac disease in Sweden. Arch Dis Child 66:608-611, 1991Google Scholar
  21. 21.
    Johnston SD, Watson RGP, McMillan SA, Sloan J, Love AHG: Prevalence of coeliac disease in Northern Ireland. Lancet 350:1370, 1997Google Scholar
  22. 22.
    Csizmadia CGDS, Mearin ML, von Blomberg BME, Brand R, Verloove-Vanhorik SP: An iceberg of childhood coeliac disease in The Netherlands. Lancet 353:813-814, 1999Google Scholar
  23. 23.
    Hovdenak N, Hovlid E, Aksnes L, Fluge G, Erichsen MM, Eide J: High prevalence of asymptomatic coeliac disease in Norway: a study of blood donors. Eur J Gastroenterol Hepatol 11:185-187, 1999Google Scholar
  24. 24.
    Bottaro G, Cataldo F, Rotolo N, Spina M, Corazza GR: The clinical pattern of subclinical/silent celiac disease: an analysis on 1026 consecutive cases. Am J Gastroenterol 94:691-696, 1999Google Scholar
  25. 25.
    Not T, Horvath K, Hill ID, Partanen J, Hammed A, Magazzu G, Fasano A: Celiac disease risk in the USA: high prevalence of antiendomysium antibodies in healthy blood donors. Scand J Gastroenterol 33:494-498, 1998Google Scholar
  26. 26.
    Green PHR, Stavros SN, Panagi SG, Goldstein SL, McMahon DJ, Absan H, Neugut AI: Characteristics of adult celiac disease in the USA: results of a national survey. Am J Gastroenterol 96:126-131, 2001Google Scholar

Copyright information

© Plenum Publishing Corporation 2003

Authors and Affiliations

  • Robert D. Zipser
    • 2
  • Sunil Patel
    • 1
    • 2
  • Kareem Z. Yahya
    • 1
    • 2
  • Donald W. Baisch
    • 1
    • 2
  • Elaine Monarch
    • 1
    • 2
  1. 1.Department of MedicineHarbor-UCLA Medical CenterCalifornia
  2. 2.Celiac Disease FoundationCaliforniaUSA

Personalised recommendations