Pediatric Celiac Disease Follow-up

  • Author: Stefano Guandalini, MD; Chief Editor: Carmen Cuffari, MD   more...
 
Updated: Oct 26, 2011
 

Further Outpatient Care

After the diagnosis of celiac disease (CD) has been established and a strict diet has been initiated, the first follow-up requirement is to monitor the patient's response to the diet. Depending on the severity of the clinical situation and the type of symptoms, the first outpatient appointment is typically scheduled for 4-8 weeks after the diagnosis. At this time, serologic tests for celiac disease are not needed because antibody levels still have not declined.

Further follow-up appointments are dedicated to assessing the patient's dietetic compliance and the adequacy of growth and well-being. Anti-tTG and the newer deamidated antigliadin antibodies should be periodically monitored for regression; their levels usually return to normal within 4-6 months after the beginning of a rigorous diet. However, the best indicator of dietary compliance is attainable by a careful review of the diet, and simple survey questionnaires have been developed for use in adults.[25] For patients whose initial levels of anti-tTG were particularly elevated, normalization can take up to 12-18 months. For asymptomatic patients and for those who are clinically responding well to diet, follow-up appointments are usually scheduled annually.

Celiac disease can be associated with numerous autoimmune disorders. If any are present (eg, type I diabetes mellitus, thyroiditis), follow-up care must include an adequate assessment of these conditions, which most often do not respond to the diet, and referral to other specialists is required (see Consultations).

A dietitian must be present at each of the follow-up appointments because the questions that most interest the patient's family are, by far, those concerning the diet.

In patients who had obvious malabsorption at diagnosis, assessment of the status of specific nutritional deficiencies (eg, iron deficiency, folate deficiency, zinc deficiency) is appropriate.

Next

Deterrence/Prevention

The only way to prevent recurrences is to closely monitor the patient's diet. Because celiac disease is more common in relatives of patients, first-degree relatives should at least be serologically screened (see Causes). Concerned parents usually accept this simple procedure, which often reveals previously undetected celiac disease, even in asymptomatic individuals. This effective preventive strategy must be encouraged.

Also, prevention of complications by early diagnosis (secondary prevention) may be achieved by applying a protocol of blood screening to all patients who belong to other at-risk categories (eg, type 1 diabetes mellitus, Down syndrome).

With elucidation of the role that infant feeding practices and rotavirus infections play, primary prevention of celiac disease no longer seems impossible. Primary prevention (at least in some cases) may be achieved through the expected reduction of rotavirus infections after the introduction of the vaccine and through proper breast feeding and gluten introduction in infants born to at-risk families.

Previous
Next

Complications

Celiac disease is fully reversible if trigger foods are avoided. However, when compliance is suboptimal, complications may occur. The level of gluten that is safe to consume widely varies among people with celiac disease; hence, a zero-tolerance policy must be enforced. Available evidence suggests that although almost no individuals with celiac disease show signs or symptoms of relapse while ingesting as much as 10-20 mg of gliadin per day, most react to ingestion of more than 100 mg/d.[23]

  • Complications in noncompliant patients include the following:
  • Osteopenia/osteoporosis
  • Adverse effects during pregnancy, including miscarriages
  • Anemia
  • Ulcerative jejunitis, colitis, refractory celiac disease (thought to be a low-grade intestinal lymphoma)
  • GI malignancies, most commonly an enteropathy-associated T-cell lymphoma (EATL)
Previous
Next

Prognosis

The prognosis is excellent; the disorder is fully reversible if trigger foods are avoided.

Previous
Next

Patient Education

In modern society, living a life without gluten is not easy. Educating patients and their families about how to select and properly maintain such a diet is a major, ongoing task.

The role of support groups can never be overestimated. The physician has a duty to care for patients with celiac disease and to adequately inform the family about how to connect with such groups.

Several university-associated centers that provide excellent materials for patient education are now available in the United States (eg, the University of Chicago Celiac Disease Center[26] ) and in Europe. In the United States, the American Celiac Disease Alliance (ACDA) offers patient education as well as links to other centers.

For excellent patient education resources, visit also eMedicine's Esophagus, Stomach, and Intestine Center and Teeth and Mouth Center. Also, see eMedicine's patient education articles Celiac Sprue, Anatomy of the Digestive System, and Canker Sores.

Previous
 
Contributor Information and Disclosures
Author

Stefano Guandalini, MD  Director, Celiac Disease Center, Chief, Section of Pediatric Gastroenterology, Hepatology and Nutrition, Department of Pediatrics, University of Chicago Medical Center; Professor, Department of Pediatrics, Section of Gastroenterology, Hepatology and Nutrition, University of Chicago Division of the Biological Sciences, The Pritzker School of Medicine

Stefano Guandalini, MD is a member of the following medical societies: American Gastroenterological Association, European Society for Paediatric Gastroenterology, Hepatology & Nutrition, and North American Society for Pediatric Gastroenterology and Nutrition

Disclosure: Nothing to disclose.

Coauthor(s)

Phyllis A Vallee, MD  Associate Program Director, Department of Emergency Medicine, Henry Ford Hospital

Phyllis A Vallee, MD is a member of the following medical societies: American Academy of Emergency Medicine, American Medical Association, and Michigan State Medical Society

Disclosure: Nothing to disclose.

Specialty Editor Board

Jorge H Vargas, MD  Professor of Pediatrics and Clinical Professor of Pediatric Gastroenterology, University of California, Los Angeles, David Geffen School of Medicine; Consulting Physician, Department of Pediatrics, University of California at Los Angeles Health System

Jorge H Vargas, MD is a member of the following medical societies: American Liver Foundation, American Society for Gastrointestinal Endoscopy, American Society for Parenteral and Enteral Nutrition, Latin American Society of Pediatric Gastroenterology, Hepatology & Nutrition, and North American Society for Pediatric Gastroenterology and Nutrition

Disclosure: Nothing to disclose.

Mary L Windle, PharmD  Adjunct Associate Professor, University of Nebraska Medical Center College of Pharmacy; Editor-in-Chief, Medscape Drug Reference

Disclosure: Nothing to disclose.

Carmen Cuffari, MD  Associate Professor, Department of Pediatrics, Division of Gastroenterology/Nutrition, Johns Hopkins University School of Medicine

Carmen Cuffari, MD is a member of the following medical societies: American College of Gastroenterology, American Gastroenterological Association, North American Society for Pediatric Gastroenterology, Hepatology and Nutrition, and Royal College of Physicians and Surgeons of Canada

Disclosure: Nothing to disclose.

Steven M Schwarz, MD, FAAP, FACN, AGAF  Professor of Pediatrics, Children's Hospital at Downstate, State University of New York Downstate Medical Center

Steven M Schwarz, MD, FAAP, FACN, AGAF is a member of the following medical societies: American Academy of Pediatrics, American College of Nutrition, American College of Physician Executives, American Gastroenterological Association, American Pediatric Society, Gastroenterology Research Group, New York Academy of Medicine, North American Society for Pediatric Gastroenterology and Nutrition, and Society for Pediatric Research

Disclosure: Curemark, LLC Consulting fee Board membership; Centocor, Inc. Grant/research funds Independent contractor; Johnson & Johnson, Inc. Grant/research funds Independent contractor

Chief Editor

Carmen Cuffari, MD  Associate Professor, Department of Pediatrics, Division of Gastroenterology/Nutrition, Johns Hopkins University School of Medicine

Carmen Cuffari, MD is a member of the following medical societies: American College of Gastroenterology, American Gastroenterological Association, North American Society for Pediatric Gastroenterology, Hepatology and Nutrition, and Royal College of Physicians and Surgeons of Canada

Disclosure: Nothing to disclose.

Additional Contributors

The authors and editors of Medscape Reference gratefully acknowledge the contributions of previous author Ginette V Busschots, MD, to the writing and development of this article.

References

  1. Guandalini S, Setty M. Celiac disease. Curr Opin Gastroenterol. Nov 2008;24(6):707-12. [Medline].

  2. [Best Evidence] Rubio-Tapia A, Kyle RA, Kaplan EL, et al. Increased prevalence and mortality in undiagnosed celiac disease. Gastroenterology. Jul 2009;137(1):88-93. [Medline].

  3. Tang F, Chen Z, Ciszewski C, et al. Cytosolic PLA2 is required for CTL-mediated immunopathology of celiac disease via NKG2D and IL-15. J Exp Med. Feb 23 2009;[Medline].

  4. Marsh MN, Hinde J. Inflammatory component of celiac sprue mucosa. I. Mast cells, basophils, and eosinophils. Gastroenterology. Jul 1985;89(1):92-101. [Medline].

  5. Catassi C, Kryszak D, Louis-Jacques O, et al. Detection of Celiac disease in primary care: a multicenter case-finding study in North America. Am J Gastroenterol. Jul 2007;102(7):1454-60. [Medline].

  6. Lohi S, Mustalahti K, Kaukinen K, Laurila K, Collin P, Rissanen H, et al. Increasing prevalence of coeliac disease over time. Aliment Pharmacol Ther. Nov 1 2007;26(9):1217-25. [Medline].

  7. Kondrashova A, Mustalahti K, Kaukinen K, Viskari H, Volodicheva V, Haapala AM, et al. Lower economic status and inferior hygienic environment may protect against celiac disease. Ann Med. 2008;40(3):223-31. [Medline].

  8. Catassi C, Cobellis G. Coeliac disease epidemiology is alive and kicking, especially in the developing world. Dig Liver Dis. Oct 2007;39(10):908-10. [Medline].

  9. Silano M, Volta U, Vincenzi AD, Dessì M, Vincenzi MD. Effect of a gluten-free diet on the risk of enteropathy-associated T-cell lymphoma in celiac disease. Dig Dis Sci. Apr 2008;53(4):972-6. [Medline].

  10. Metzger MH, Heier M, Maki M, et al. Mortality excess in individuals with elevated IgA anti-transglutaminase antibodies: the KORA/MONICA Augsburg cohort study 1989-1998. Eur J Epidemiol. 2006;21(5):359-65. [Medline].

  11. Guandalini S, ed. Celiac Disease. In. Textbook of Pediatric Gastroenterology and Nutrition. London: Taylor & Francis;. 2004: 435-50.

  12. Lionetti E, Francavilla R, Pavone P, et al. The neurology of coeliac disease in childhood: what is the evidence? A systematic review and meta-analysis. Dev Med Child Neurol. Mar 19 2010;[Medline].

  13. Pope R, Sheiner E. Celiac disease during pregnancy: to screen or not to screen?. Arch Gynecol Obstet. Jan 2009;279(1):1-3. [Medline].

  14. Akobeng AK, Ramanan AV, Buchan I, Heller RF. Effect of breast feeding on risk of coeliac disease: a systematic review and meta-analysis of observational studies. Arch Dis Child. Jan 2006;91(1):39-43. [Medline].

  15. Olsson C, Hernell O, Hornell A, Lonnberg G, Ivarsson A. Difference in celiac disease risk between Swedish birth cohorts suggests an opportunity for primary prevention. Pediatrics. Sep 2008;122(3):528-34. [Medline].

  16. Troncone R, Auricchio S. Rotavirus and celiac disease: clues to the pathogenesis and perspectives on prevention. J Pediatr Gastroenterol Nutr. May 2007;44(5):527-8. [Medline].

  17. Bonamico M, Mariani P, Thanasi E, et al. Patchy villous atrophy of the duodenum in childhood celiac disease. J Pediatr Gastroenterol Nutr. Feb 2004;38(2):204-7. [Medline].

  18. Rostom A, Murray JA, Kagnoff MF. American Gastroenterological Association (AGA) Institute technical review on the diagnosis and management of celiac disease. Gastroenterology. Dec 2006;131(6):1981-2002. [Medline].

  19. [Guideline] Hill ID, Dirks MH, Liptak GS, 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. J Pediatr Gastroenterol Nutr. Jan 2005;40(1):1-19. [Medline].

  20. Walker-Smith JA, Guandalini S, Schmitz J, Shmerling DH, Visakorpi JK. Revised criteria for diagnosis of coeliac disease. Report of Working Group of European Society of Paediatric Gastroenterology and Nutrition. Arch Dis Child. 1990;65:909-911. [Medline].

  21. Panetta F, Torre G, Colistro F, Ferretti F, Daniele A, Diamanti A. Clinical accuracy of anti-tissue transglutaminase as screening test for celiac disease under 2 years. Acta Paediatr. May 2011;100(5):728-31. [Medline].

  22. Kurppa K, Collin P, Viljamaa M, et al. Diagnosing mild enteropathy celiac disease: a randomized, controlled clinical study. Gastroenterology. Mar 2009;136(3):816-23. [Medline].

  23. [Best Evidence] Akobeng AK, Thomas AG. Systematic review: tolerable amount of gluten for people with coeliac disease. Aliment Pharmacol Ther. Jun 1 2008;27(11):1044-52. [Medline].

  24. Diamanti A, Ferretti F, Guglielmi R, et al. Thyroid autoimmunity in children with coeliac disease: a prospective survey. Arch Dis Child. Nov 2011;96(11):1038-41. [Medline].

  25. Leffler DA, Dennis M, Edwards GJ, et al. A Simple Validated Gluten-Free Diet Adherence Survey for Adults With Celiac Disease. Clin Gastroenterol Hepatol. Jan 11 2009;[Medline].

  26. University of Chicago Celiac Disease Center. Available at www.celiacdisease.net.

  27. Isselbacher KJ, Braunwald E, Wilson JD. Harrison's Principles of Internal Medicine. 13th ed. New York, NY: McGraw Hill; 1994:1398-400.

  28. McCance KL, Huether SE. Pathophysiology: The Biologic Basis for Disease in Adults and Children. St Louis, MO: Mosby; 1990:1277-80.

  29. Saltzman JR, Russell RM. The aging gut. Nutritional issues. Gastroenterol Clin North Am. Jun 1998;27(2):309-24. [Medline].

  30. USP. United States Pharmacopeial Convention: Drug Information (USP DI) for the Health Care Professional. 16th ed. Rockville, MD: United States Pharmacopeial Convention; 1996:978-95.

 
Previous
Next
 
Potbelly and muscle wasting in a child with celiac disease.
The celiac iceberg.
The different presentations of celiac disease.
Extraintestinal manifestations of celiac disease.
GI signs and symptoms of celiac disease.
Approximate prevalence of celiac disease in other autoimmune disorders.
 
 
 
All material on this website is protected by copyright, Copyright © 1994-2012 by WebMD LLC.
This website also contains material copyrighted by 3rd parties.

DISCLAIMER: The content of this Website is not influenced by sponsors. The site is designed primarily for use by qualified physicians and other medical professionals. The information contained herein should NOT be used as a substitute for the advice of an appropriately qualified and licensed physician or other health care provider. The information provided here is for educational and informational purposes only. In no way should it be considered as offering medical advice. Please check with a physician if you suspect you are ill.