By Dacha Weir, MD and Alan Leichtner, MD
Your family’s relationship with your pediatric gastroenterology provider shouldn’t end after the diagnosis of celiac disease has been confirmed in your child.
When first facing the diagnosis of a chronic disease, families often have many questions about the medical aspects of celiac disease to discuss with their provider. Within the first weeks of the diagnosis, providers should be available to the families for these conversations, either face-to-face in the office or on the phone.
In addition to the emotional adjustment of your child and the entire family at the time of diagnosis, the practical aspects of celiac disease, specifically related to the gluten-free diet, are the focus of many questions. This is certainly understandable, as information about what foods are safe for your child and how to communicate the dietary restrictions to family, friends and your child’s school, rise to the top of the priority list. The early days of a family impacted by a new celiac diagnosis are often filled with nutrition visits, working out new food shopping lists, learning how to read food labels, meeting with teachers, consultation with a celiac disease social worker, and seeking out other families who have experience with celiac disease.
Even after new routines are established, it is important to remain connected with your medical provider. Providers will want to see children with celiac disease in their office at regular intervals within the first year of the diagnosis. Typically, these visits are scheduled at three months, six months and 12 months after the diagnosis is made and the gluten-free diet is started. If your child is doing well, yearly visits are then recommended.
Return visits give the provider the opportunity to monitor your child closely. They are also an important opportunity for you to ask additional questions and learn new information about celiac disease. At these visits, the provider will assess your child’s adherence to the gluten-free diet and general nutritional status. They will carefully evaluate your child’s symptoms and growth to assess for response to the gluten-free diet. The provider will also monitor for the potential development of other symptoms that could indicate the development of autoimmune diseases (such as joint pains, diabetes or thyroid disease) associated with celiac disease. As your child matures, new challenges to adherence to the gluten free diet may arise, such as the transition to school or sleep away camp, with attendant increases in peer pressure. These new challenges should be addressed and supported.
In children who had positive celiac blood tests at the time of diagnosis, repeating the levels of the tissue transglutaminase antibodies (or less commonly endomysial antibodies) can help assess intestinal healing and adherence to the gluten free diet. Generally, the antibody levels return to normal within the first year on a gluten-free diet. Persistently elevated levels after one year can be a red flag that there are still significant amounts of gluten in the diet and may prompt a return consultation with the dietitian.
In summary, follow-up visits with the pediatric gastroenterology provider are an essential part of the medical care of your child with celiac disease. If things are not going smoothly, appropriate evaluation, support and referrals can be made in a timely way to get things back on track. If things are going well, these visits are a nice way to confirm that all the consistent hard work and vigilance related to the gluten-free diet are paying off!