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Question – What annual tests should a child with celiac disease have to ensure that they are managing the gluten-free diet appropriately and their body is healing or staying healthy? 

Dr. Weir – Children with celiac disease should have annual monitoring labs (in addition to clinical checkups as discussed below).

Typically, every year, a tissue transglutaminase IgA should be checked to help assess if the diet is on track.  Overtime, an elevated TTG IgA should normalize on a gluten free diet. If the level doesn’t come down to normal or rises after being normal, that can be a warning sign of ongoing unrecognized gluten exposure.  It is important to know that a TTG IgA level is not a perfect predictor of gluten exposure or intestinal healing. A careful history by a specialist about how the diet is going and how the child is feeling is essential as well.

In New England, where vitamin D deficiency is prevalent, we recommend yearly vitamin D level assessment and supplementation if needed.  Children with celiac disease should have hepatitis B titers checked as well, to assess for adequate response to the hepatitis B vaccine series, as many people with celiac disease appear to have diminished response to the initial vaccine series.  Other appropriate lab studies may include periodic testing of thyroid function to assess for autoimmune thyroid disease and a complete blood count and iron studies to assess for iron deficiency and anemia.

Question – If it seems to be under control, is it sufficient to just be monitored by their primary care physician or should they continue to see a specialist? 

Dr. Weir – After a diagnosis of celiac disease, it is important for children to maintain a connection with a specialist and to see them regularly.  A primary care provider is a vital part of every child’s care, but a gastroenterologist adds another layer of expertise and specialized care for children with celiac disease.   It is generally recommended to see them annually as a way to monitor for complications of celiac disease and the gluten-free diet.  It is also an excellent way to stay up to date.

Like a primary care provider, a specialist will track for appropriate growth and transition into puberty.  They will also monitor for resolution of celiac related symptoms and assess for new symptoms, like constipation (a common side effect of the GF diet).  Because children with celiac disease are at higher risk of developing other autoimmune diseases, such as diabetes or hypothyroidism, they will also ask questions and look for subtle early signs of these conditions.  A specialist will also send yearly monitoring blood work as discussed above.

An important part of follow up is making sure that a child with celiac disease is doing well with the gluten-free diet.  Different challenges related to a gluten-free diet can arise at different developmental stages.  By asking specific questions about how the diet is going, a specialist can evaluate for adherence to the diet.  They can help patients and families navigate the tricky balance in being appropriately careful about avoiding gluten exposure without being too restrictive or hypervigilant.  Just as importantly, they can assess if a child is coping well with the diet.  They will observe for signs of stress, food related anxiety or early signs of disordered eating and help get additional supports in place as needed.

Another good reason to stay in touch with your specialist is to make sure you have access to updated information the gluten-free diet. You can also learn about new research and additional treatments as they become available in the future.