Celiac Disease Program and Support Group

Since the vast majority of patients diagnosed with celiac disease recover quickly on the gluten-free diet, subsequent visits to the gastroenterologist may seem unnecessary. However, for certain children, medical follow-up is critical both to confirm the response to dietary therapy and to supervise monitoring by blood tests.

This visit is also a chance for the physician to determine whether symptoms such as abdominal pain, diarrhea and poor weight gain are improving. Unless significant anemia, mineral or vitamin deficiency, or another serious problem was noted when the patient was initially diagnosed, no blood tests are usually performed at this visit. Although blood studies for celiac disease (such as the anti-endomysial antibody (EMA) and the tissue transglutaminase antibody (TTGA)), return to normal with a gluten-free diet, the levels decline slowly over months and may not be significantly changed by three months.

For example, if a child was diagnosed before the TTGA test was available, but did have a positive EMA test at diagnosis, monitoring should be done with the EMA test. If both the EMA and TTGA were elevated, only the TTGA should be repeated since it is the less expensive and more available test.

This visit is also an opportunity for the physician to confirm that the symptoms have resolved, monitor the child's growth, and make sure that there is no evidence of associated autoimmune diseases, such as diabetes, thyroid disease and arthritis.

Celiac antibody testing, as described above, is performed and additional tests such as a complete blood count (CBC) may be ordered at the discretion of the physician. Failure of the celiac antibody tests to return to normal or any increase in the levels should prompt a detailed review of the diet.

Follow-up visits are particularly important during the teenage years when children are entering their growth spurt, are maturing sexually, and are most apt to challenge the need for a gluten-free diet. Although routine tests of bone density are not recommended for all children with celiac disease, those children with documented low bone density should have follow-up studies performed on a yearly basis.

Follow-up medical visits are important to monitor for celiac disease activity and complications. For most children with celiac disease, these visits need not be traumatic, especially with adequate preparation for blood tests. Moreover, these visits are an ideal time for the physician to reinforce compliance to the gluten-free diet.