Celiac Disease pp 161-175 | Cite as

Monitoring and Follow-Up of Patients with Celiac Disease

  • Margot L. Herman
  • Imad Absah
  • Amy S. Oxentenko
  • Alberto Rubio-Tapia
Part of the Clinical Gastroenterology book series (CG)


The goals of medical treatment of celiac disease (CD) are to: (1) encourage dietary compliance, (2) manage and monitor symptoms, and (3) prevent and detect associated diseases and/or complications. The underlying aim in the care of patients with CD is to ensure that patients have initial and sustained symptomatic improvement and to prevent long-term sequelae that can result from chronic gluten exposure. Currently, available guidelines on the follow-up of patients with CD are often incomplete or variable, partially due to a dearth of research on this topic. This chapter synthesizes available guidelines and expert opinion to recommend the essential components of medical follow-up of CD patients for practicing physicians.


Celiac Disease Alopecia Areata Mucosal Healing Celiac Disease Patient Duodenal Biopsy 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.



Supported by American College of Gastroenterology Junior Faculty Development Award (to A.R.T).


  1. 1.
    Catassi C, Fabiani E, Iacono G, D’Agate C, Francavilla R, Biagi F, et al. A prospective, double-blind, placebo-controlled trial to establish a safe gluten threshold for patients with celiac disease [Multicenter Study Randomized Controlled Trial Research Support, Non-U.S. Gov’t]. Am J Clin Nutr. 2007;85(1):160–6.PubMedGoogle Scholar
  2. 2.
    Leffler D. Celiac disease diagnosis and management: a 46-year-old woman with anemia [Case Reports Clinical Conference]. JAMA. 2011;306(14):1582–92.PubMedCentralPubMedCrossRefGoogle Scholar
  3. 3.
    Godfrey JD, Brantner TL, Brinjikji W, Christensen KN, Brogan DL, Van Dyke CT, et al. Morbidity and mortality among older individuals with undiagnosed celiac disease [Research Support, N.I.H., Extramural]. Gastroenterology. 2010;139(3):763–9.PubMedCentralPubMedCrossRefGoogle Scholar
  4. 4.
    Hall NJ, Rubin G, Charnock A. Systematic review: adherence to a gluten-free diet in adult patients with coeliac disease [Research Support, Non-U.S. Gov’t Review]. Aliment Pharmacol Ther. 2009;30(4):315–30.PubMedCrossRefGoogle Scholar
  5. 5.
    Rubio-Tapia A, Kyle RA, Kaplan EL, Johnson DR, Page W, Erdtmann F, et al. Increased prevalence and mortality in undiagnosed celiac disease [Research Support, N.I.H., Extramural]. Gastroenterology. 2009;137(1):88–93.PubMedCentralPubMedCrossRefGoogle Scholar
  6. 6.
    Ludvigsson JF, Montgomery SM, Ekbom A, Brandt L, Granath F. Small-intestinal histopathology and mortality risk in celiac disease [Research Support, Non-U.S. Gov’t]. JAMA. 2009;302(11):1171–8.PubMedCrossRefGoogle Scholar
  7. 7.
    Rubio-Tapia A, Rahim MW, See JA, Lahr BD, Wu TT, Murray JA. Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet [Research Support, N.I.H., Extramural]. Am J Gastroenterol. 2010;105(6):1412–20.PubMedCentralPubMedCrossRefGoogle Scholar
  8. 8.
    Matysiak-Budnik T, Malamut G, de Serre NPM, Grosdidier E, Seguier S, Brousse N, et al. Long-term follow-up of 61 coeliac patients diagnosed in childhood: evolution toward latency is possible on a normal diet. Gut. 2007;56(10):1379–86.PubMedCentralPubMedCrossRefGoogle Scholar
  9. 9.
    Murray JA, Watson T, Clearman B, Mitros F. Effect of a gluten-free diet on gastrointestinal symptoms in celiac disease [Research Support, U.S. Gov’t, P.H.S.]. Am J Clin Nutr. 2004;79(4):669–73.PubMedGoogle Scholar
  10. 10.
    Pietzak MM. Follow-up of patients with celiac disease: achieving compliance with treatment. Gastroenterology. 2005;128(4 Suppl 1):S135–41.PubMedCrossRefGoogle Scholar
  11. 11.
    Herman ML, Rubio-Tapia A, Lahr BD, Larson JJ, Van Dyke CT, Murray JA. Patients with celiac disease are not followed up adequately [Research Support, N.I.H., Extramural Research Support, Non-U.S. Gov’t]. Clin Gastroenterol Hepatol. 2012;10(8):893–9.e1.PubMedCentralPubMedCrossRefGoogle Scholar
  12. 12.
    Lanzini A, Lanzarotto F, Villanacci V, Mora A, Bertolazzi S, Turini D, et al. Complete recovery of intestinal mucosa occurs very rarely in adult coeliac patients despite adherence to gluten-free diet. Aliment Pharmacol Ther. 2009;29(12):1299–308.PubMedCrossRefGoogle Scholar
  13. 13.
    Hernandez L, Green PH. Extraintestinal manifestations of celiac disease [Review]. Curr Gastroenterol Rep. 2006;8(5):383–9.PubMedCrossRefGoogle Scholar
  14. 14.
    Haines ML, Anderson RP, Gibson PR. Systematic review: the evidence base for long-term management of coeliac disease [Review]. Aliment Pharmacol Ther. 2008;28(9):1042–66.PubMedCrossRefGoogle Scholar
  15. 15.
    Dias JA, Walker-Smith J. Down’s syndrome and coeliac disease [Case Reports]. J Pediatr Gastroenterol Nutr. 1990;10(1):41–3.PubMedGoogle Scholar
  16. 16.
    Bonamico M, Pasquino AM, Mariani P, Danesi HM, Culasso F, Mazzanti L, et al. Prevalence and clinical picture of celiac disease in Turner syndrome [Multicenter Study Research Support, Non-U.S. Gov’t]. J Clin Endocrinol Metab. 2002;87(12):5495–8.PubMedCrossRefGoogle Scholar
  17. 17.
    Giannotti A, Tiberio G, Castro M, Virgilii F, Colistro F, Ferretti F, et al. Coeliac disease in Williams syndrome. J Med Genet. 2001;38(11):767–8.PubMedCentralPubMedCrossRefGoogle Scholar
  18. 18.
    Nachman F, del Campo MP, Gonzalez A, Corzo L, Vazquez H, Sfoggia C, et al. Long-term deterioration of quality of life in adult patients with celiac disease is associated with treatment noncompliance [Comparative Study Research Support, Non-U.S. Gov’t]. Dig Liver Dis. 2010;42(10):685–91.PubMedCrossRefGoogle Scholar
  19. 19.
    Nachman F, Maurino E, Vazquez H, Sfoggia C, Gonzalez A, Gonzalez V, et al. Quality of life in celiac disease patients: prospective analysis on the importance of clinical severity at diagnosis and the impact of treatment [Comparative Study Research Support, Non-U.S. Gov’t]. Dig Liver Dis. 2009;41(1):15–25.PubMedCrossRefGoogle Scholar
  20. 20.
    Zanini B, Lanzarotto F, Mora A, Bertolazzi S, Turini D, Cesana B, et al. Five year time course of celiac disease serology during gluten-free diet: results of a community based “CD-Watch” program. Dig Liver Dis. 2010;42(12):865–70.PubMedCrossRefGoogle Scholar
  21. 21.
    AGA Institute Medical Position Statement on the Diagnosis and management of celiac disease [Practice Guideline]. Gastroenterology. 2006;131(6):1977–80.Google Scholar
  22. 22.
    National Institutes of Health Consensus Development Conference Statement on Celiac Disease, June 28–30, 2004 [Consensus Development Conference Consensus Development Conference, NIH Review]. Gastroenterology. 2005;128(4 Suppl 1):S1–9.Google Scholar
  23. 23.
    Hill ID, Dirks MH, Liptak GS, Colletti RB, Fasano A, Guandalini S, et al. Guideline for the diagnosis and treatment of celiac disease in children: recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition [Practice Guideline]. J Pediatr Gastroenterol Nutr. 2005;40(1):1–19.PubMedCrossRefGoogle Scholar
  24. 24.
    Bai JF, Corazza GR, Schuppan DL, Farthing M, Catassi C, Greco L, Cohen H, Ciacci C, Fasano A, González A, Krabshuis JH, LeMair A. World Gastroenterology Organisation Global Guidelines–Celiac disease. Milwaukee, WI: World Gastroenterology Organisation; 2012.Google Scholar
  25. 25.
    Guidelines for the management of patients with coeliac disease. Glasgow: British Society for Gastroenterology; 2010.Google Scholar
  26. 26.
    The management of adults with coeliac disease in primary care. London: Primary Care Society for Gastroenterology; 2006.Google Scholar
  27. 27.
    Fasano A, Catassi C. Celiac disease. N Engl J Med. 2012;367(25):2419–26.PubMedCrossRefGoogle Scholar
  28. 28.
    Silvester JA, Rashid M. Long-term follow-up of individuals with celiac disease: an evaluation of current practice guidelines [Review]. Can J Gastroenterol. 2007;21(9):557–64.PubMedCentralPubMedGoogle Scholar
  29. 29.
    Leffler DA, Edwards George JB, Dennis M, Cook EF, Schuppan D, Kelly CP. A prospective comparative study of five measures of gluten-free diet adherence in adults with coeliac disease [Comparative Study Research Support, N.I.H., Extramural Research Support, Non-U.S. Gov’t]. Aliment Pharmacol Ther. 2007;26(9):1227–35.PubMedCrossRefGoogle Scholar
  30. 30.
    Bebb JR, Lawson A, Knight T, Long RG. Long-term follow-up of coeliac disease–what do coeliac patients want? Aliment Pharmacol Ther. 2006;23(6):827–31.PubMedCrossRefGoogle Scholar
  31. 31.
    Ukkola A, Maki M, Kurppa K, Collin P, Huhtala H, Kekkonen L, et al. Patients’ experiences and perceptions of living with coeliac disease – implications for optimizing care [Clinical Trial Research Support, Non-U.S. Gov’t]. J Gastrointest Liver Dis. 2012;21(1):17–22.Google Scholar
  32. 32.
    Nachman F, Sugai E, Vazquez H, Gonzalez A, Andrenacci P, Niveloni S, et al. Serological tests for celiac disease as indicators of long-term compliance with the gluten-free diet [Research Support, Non-U.S. Gov’t]. Eur J Gastroenterol Hepatol. 2011;23(6):473–80.PubMedGoogle Scholar
  33. 33.
    Sugai E, Nachman F, Vaquez H, Gonzalez A, Andrenacci P, Czech A, et al. Dynamics of celiac disease-specific serology after initiation of a gluten-free diet and use in the assessment of compliance with treatment [Research Support, Non-U.S. Gov’t]. Dig Liver Dis. 2010;42(5):352–8.PubMedCrossRefGoogle Scholar
  34. 34.
    Monzani A, Rapa A, Fonio P, Tognato E, Panigati L, Oderda G. Use of deamidated gliadin peptide antibodies to monitor diet compliance in childhood celiac disease [Comparative Study Research Support, Non-U.S. Gov’t]. J Pediatr Gastroenterol Nutr. 2011;53(1):55–60.PubMedCrossRefGoogle Scholar
  35. 35.
    Vahedi K, Mascart F, Mary JY, Laberenne JE, Bouhnik Y, Morin MC, et al. Reliability of antitransglutaminase antibodies as predictors of gluten-free diet compliance in adult celiac disease [Comparative Study]. Am J Gastroenterol. 2003;98(5):1079–87.PubMedCrossRefGoogle Scholar
  36. 36.
    Tursi A, Brandimarte G, Giorgetti GM. Lack of usefulness of anti-transglutaminase antibodies in assessing histologic recovery after gluten-free diet in celiac disease. J Clin Gastroenterol. 2003;37(5):387–91.PubMedCrossRefGoogle Scholar
  37. 37.
    Wahab PJ, Meijer JW, Mulder CJ. Histologic follow-up of people with celiac disease on a gluten-free diet: slow and incomplete recovery. Am J Clin Pathol. 2002;118(3):459–63.PubMedCrossRefGoogle Scholar
  38. 38.
    Macdonald WC, Brandborg LL, Flick AL, Trier JS, Rubin CE. Studies of celiac sprue. IV. The response of the whole length of the small bowel to a gluten-free diet. Gastroenterology. 1964;47:573–89.PubMedGoogle Scholar
  39. 39.
    Rubio-Tapia A, Murray JA. Classification and management of refractory coeliac disease [Research Support, N.I.H., Extramural Review]. Gut. 2010;59(4):547–57.PubMedCentralPubMedCrossRefGoogle Scholar
  40. 40.
    Daum S, Ipczynski R, Schumann M, Wahnschaffe U, Zeitz M, Ullrich R. High rates of complications and substantial mortality in both types of refractory sprue. Eur J Gastroenterol Hepatol. 2009;21(1):66–70.PubMedCrossRefGoogle Scholar
  41. 41.
    Atlas DS, Rubio-Tapia A, Van Dyke CT, Lahr BD, Murray JA. Capsule endoscopy in nonresponsive celiac disease [Comparative Study Research Support, N.I.H., Extramural Research Support, Non-U.S. Gov’t]. Gastrointest Endosc. 2011;74(6):1315–22.PubMedCentralPubMedCrossRefGoogle Scholar
  42. 42.
    Sategna-Guidetti C, Volta U, Ciacci C, Usai P, Carlino A, De Franceschi L, et al. Prevalence of thyroid disorders in untreated adult celiac disease patients and effect of gluten withdrawal: an Italian multicenter study [Multicenter Study]. Am J Gastroenterol. 2001;96(3):751–7.PubMedCrossRefGoogle Scholar
  43. 43.
    Di Sabatino A, Carsetti R, Corazza GR. Post-splenectomy and hyposplenic states [Review]. Lancet. 2011;378(9785):86–97.PubMedCrossRefGoogle Scholar
  44. 44.
    Ludvigsson JF, Olen O, Bell M, Ekbom A, Montgomery SM. Coeliac disease and risk of sepsis [Multicenter Study Research Support, Non-U.S. Gov’t]. Gut. 2008;57(8):1074–80.PubMedCrossRefGoogle Scholar
  45. 45.
    Fouda MA, Khan AA, Sultan MS, Rios LP, McAssey K, Armstrong D. Evaluation and management of skeletal health in celiac disease: position statement. Can J Gastroenterol. 2012;26(11):819–29.PubMedCentralPubMedGoogle Scholar
  46. 46.
    Mora S, Barera G, Beccio S, Menni L, Proverbio MC, Bianchi C, et al. A prospective, longitudinal study of the long-term effect of treatment on bone density in children with celiac disease [Clinical Trial]. J Pediatr. 2001;139(4):516–21.PubMedCrossRefGoogle Scholar
  47. 47.
    Sategna-Guidetti C, Grosso SB, Grosso S, Mengozzi G, Aimo G, Zaccaria T, et al. The effects of 1-year gluten withdrawal on bone mass, bone metabolism and nutritional status in newly-diagnosed adult coeliac disease patients [Clinical Trial Research Support, Non-U.S. Gov’t]. Aliment Pharmacol Ther. 2000;14(1):35–43.PubMedCrossRefGoogle Scholar
  48. 48.
    Osteoporosis prevention, diagnosis, and therapy [Consensus Development Conference Consensus Development Conference, NIH Review]. JAMA. 2001;285(6):785–95.Google Scholar
  49. 49.
    Pinkerton JV, Dalkin AC, Crowe SE, Wilson BB, Stelow EB. Treatment of postmenopausal osteoporosis in a patient with celiac disease [Case Reports]. Nat Rev Endocrinol. 2010;6(3):167–71.PubMedCrossRefGoogle Scholar
  50. 50.
    Elfstrom P, Granath F, Ekstrom Smedby K, Montgomery SM, Askling J, Ekbom A, et al. Risk of lymphoproliferative malignancy in relation to small intestinal histopathology among patients with celiac disease [Multicenter StudyResearch Support, Non-U.S. Gov’t]. J Natl Cancer Inst. 2011;103(5):436–44.PubMedCrossRefGoogle Scholar
  51. 51.
    Ludvigsson JF. Mortality and malignancy in celiac disease [Research Support, Non-U.S. Gov’t]. Gastrointest Endosc Clin N Am. 2012;22(4):705–22.PubMedCrossRefGoogle Scholar
  52. 52.
    Catassi C, Fabiani E, Ratsch IM, Coppa GV, Giorgi PL, Pierdomenico R, et al. The coeliac iceberg in Italy. A multicentre antigliadin antibodies screening for coeliac disease in school-age subjects [Clinical Trial Multicenter Study]. Acta Paediatr Suppl. 1996;412:29–35.PubMedCrossRefGoogle Scholar
  53. 53.
    Cacciari E, Salardi S, Volta U, Biasco G, Lazzari R, Corazza GR, et al. Can antigliadin antibody detect symptomless coeliac disease in children with short stature? [Comparative Study Research Support, Non-U.S. Gov’t]. Lancet. 1985;1(8444):1469–71.PubMedCrossRefGoogle Scholar
  54. 54.
    Bottaro G, Cataldo F, Rotolo N, Spina M, Corazza GR. The clinical pattern of subclinical/silent celiac disease: an analysis on 1026 consecutive cases [Multicenter Study]. Am J Gastroenterol. 1999;94(3):691–6.PubMedGoogle Scholar
  55. 55.
    Rashid M, Cranney A, Zarkadas M, Graham ID, Switzer C, Case S, et al. Celiac disease: evaluation of the diagnosis and dietary compliance in Canadian children [Research Support, Non-U.S. Gov’t]. Pediatrics. 2005;116(6):e754–9.PubMedCrossRefGoogle Scholar
  56. 56.
    Paparo F, Petrone E, Tosco A, Maglio M, Borrelli M, Salvati VM, et al. Clinical, HLA, and small bowel immunohistochemical features of children with positive serum antiendomysium antibodies and architecturally normal small intestinal mucosa [Research Support, Non-U.S. Gov’t]. Am J Gastroenterol. 2005;100(10):2294–8.PubMedCrossRefGoogle Scholar
  57. 57.
    Leffler DA, Edwards-George J, Dennis M, Schuppan D, Cook F, Franko DL, et al. Factors that influence adherence to a gluten-free diet in adults with celiac disease [Research Support, N.I.H., Extramural Research Support, Non-U.S. Gov’t]. Dig Dis Sci. 2008;53(6):1573–81.PubMedCentralPubMedCrossRefGoogle Scholar
  58. 58.
    Fabiani E, Catassi C, Villari A, Gismondi P, Pierdomenico R, Ratsch IM, et al. Dietary compliance in screening-detected coeliac disease adolescents. Acta Paediatr Suppl. 1996;412:65–7.PubMedCrossRefGoogle Scholar
  59. 59.
    Biagi F, Bianchi PI, Marchese A, Trotta L, Vattiato C, Balduzzi D, Brusco G, Andrealli A, Cisarò F, Astegiano M, Pellegrino S, Magazzù G, Klersy C, Corazza GR. A score that verifies adherence to a gluten-free diet: a cross-sectional, multicentre validation in real clinical life. Br J Nutr. 2012;108(10):1884–8.PubMedCrossRefGoogle Scholar
  60. 60.
    Leffler DA, Dennis M, Edwards George JB, Jamma S, Magge S, Cook EF, et al. A simple validated gluten-free diet adherence survey for adults with celiac disease [Evaluation Studies Research Support, N.I.H., Extramural]. Clin Gastroenterol Hepatol. 2009;7(5):530–6, 6 e1–2.Google Scholar
  61. 61.
    Rubio-Tapia A. Seguimiento Médico del Paciente Celiaco. In: Rodrigo L, Pena A, editors. Enfermedad Celiaca. Barcelona: OmniaScience; 2012.Google Scholar

Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  • Margot L. Herman
    • 1
  • Imad Absah
    • 2
  • Amy S. Oxentenko
    • 1
  • Alberto Rubio-Tapia
    • 1
  1. 1.Division of Gastroenterology and Hepatology, Department of Internal MedicineMayo ClinicRochesterUSA
  2. 2.Division of Gastroenterology and Hepatology, Department of PediatricsMayo ClinicRochesterUSA

Personalised recommendations