Ask Dr. Weir – November 2020

Question – My son was diagnosed with celiac disease because he wasn’t growing very well. How long does it take for the gluten-free diet to start working so we see progress in growth? 

Dr. Weir – Poor growth is a common way for celiac disease to show up in children.  In fact, more than 15% of all of the patients diagnosed with celiac disease at Boston Children’s Hospital have short stature or poor growth at the time of diagnosis.  Untreated celiac disease can lead to poor growth by a complex interaction of malnutrition, inflammation and disruption of the endocrine growth system.  When celiac disease is treated with the gluten-free (GF) diet, intestinal damage and inflammation heals over time, nutritional status improves and growth regulation is restored.  Improved weight gain is seen sooner than accelerated linear growth. Catch-up growth is the rapid compensatory growth that happens in the setting of this healing and is maximal in the first 6 months on a gluten-free diet.  The amount of growth to be expected depends on the age and pubertal stage at the time of diagnosis.  If increased growth isn’t seen 6 months into the GF diet, reinvolvement of our pediatric specialized dietitians is important to ensure that a strict gluten free and calorically appropriate diet is being followed.  If no catchup growth has occurred by 1 year on a GF diet, we often consult endocrinology to consider other causes of poor growth such as hypothyroidism or growth hormone deficiency.  If you are worried about your child’s growth, reach out to your gastroenterologist to discuss your concerns.

 
Question – I have three children and only one is diagnosed with celiac disease. How many times do the other kids need to be tested? Is once enough? 

Dr. Weir – Celiac disease can run in the family and is not something that you want to miss in your other kids.  People with celiac disease can have varied symptoms, even within the same family. Additionally, some children with celiac disease have subtle symptoms that are hard to recognize, while others have no symptoms at all. When one child is diagnosed with celiac disease, it is important to test siblings at the time of diagnosis with a tissue transglutaminase IgA and a total IgA level.  All siblings should be tested even if they don’t have symptoms.  It is important to remember that celiac disease can turn on at any time in a genetically susceptible person.  Because first degree family members are considered at somewhat higher risk to develop celiac disease in their lifetimes, we recommend retesting siblings for celiac disease every 3-5 years or sooner if any concerning symptoms develop.