Pediatric Celiac Disease Follow-up

Updated: Nov 02, 2018
  • Author: Stefano Guandalini, MD; Chief Editor: Carmen Cuffari, MD  more...
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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. [50] 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.



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.



Celiac disease is fully reversible—in the majority of patients—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. [47]

  • 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)

A population-based study by Canova et al found no evidence of an increased risk of fractures for pediatric celiac disease patients (overall hazard ratio 0.87). [62]



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


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) 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 eMedicineHealth's Digestive Disorders Center and Oral Health Center. Also, see eMedicineHealth's patient education articles Celiac Sprue, Anatomy of the Digestive System, and Canker Sores.