**As of January 2017 I have stopped updating this webpage and all comments are now closed. Please visit my new page, www.jessicamaddenmd.com, for my new posts, updated celiac information, and the ability to comment on my old posts. Thank you to all of you for your support!**
I came across on article on Medscape, a reputable site for medical information, a few days ago that scared me a bit. The title is “Gluten-Free Diet Does Not Repair Intestinal Damage in Some Children with Celiac Disease” and it discusses a recent study by Dr. Margaret Leonard and her team at the celiac center at Massachusetts General Hospital showing that nearly 20% of children with celiac disease continue to show signs of intestinal damage on biopsies after they’ve been on the gluten-free diet for quite a while (more than 12 months). In many cases the pediatric subjects with persistent damage had experienced a normalization of their celiac antibody levels and no longer had symptoms. The long term impact of the delayed healing is unclear, but the authors speculate that ongoing inflammation may effect physical and cognitive development as well as increase the risk of lymphoma, low bone mineral density, and/or fractures.
I think we all know that the currently accepted treatment for celiac disease is to stay on a strict gluten-free diet for life. However, the management of celiac disease requires more than just eating gluten-free, and a lot of follow-up.
A group of celiac disease experts, including Drs. Fasano and Guandalini, recently drafted updated guidelines for the management of pediatric celiac disease, which were published in the journal Pediatrics a few months ago. All recommendations are based on scientific evidence as well as their experiences taking care of patients with celiac disease. Below is a quick summary of their recommendations (please see reference at end of article for full details):
Bone Health: Celiac Disease can lead to problems such as bone pain, low bone mineral density and unexplained fractures. Fortunately, initiation of a gluten-free diet restores bone mass to normal density in almost all children and adolescents.
-all children should be screened for vitamin D deficiency at the time of diagnosis
-parents should be counseled on age-appropriate intake of both calcium and vitamin D
-children who do not adhere to the gluten-free diet should have bone density testing
Hematologic (Blood) Problems: Iron deficiency anemia is the most common.
-all children need to be screened for iron deficiency anemia at the time of diagnosis and
repeat complete blood counts (CBCs) should be done at follow-up visits
-children with celiac do not need to be routinely screened for folate deficiency
Endocrine-Associated (Hormonal) Problems: Autoimmune thyroid disease, type 1 diabetes, Addison disease, parathyroid disorders, and growth hormone deficiency are all associated with celiac disease.
-all children should be screened for thyroid disease at the time of celiac diagnosis AND
at their follow-up visits
-parents should be counseled on the signs of symptoms of type 1 diabetes, but children
do not need to be tested for diabetes unless symptoms develop
Liver Function: Celiac disease can be associated with elevated liver enzymes and hepatitis. Many patients with celiac disease do not respond to the Hepatitis B vaccine series.
-children with celiac disease should have their liver enzymes checked at the time of diagnosis
-Hepatitis B immunization status should be checked at the time of celiac diagnosis
Nutritional Problems and Celiac Disease: Nutritional problems can stem from both intestinal inflammation as well as of a result of the gluten-free diet.
-all children with celiac disease need to have their height, weight, and body mass index
-all should be referred to an experienced registered dietician who is knowledgeable
celiac disease (not all are!)
-multivitamins should be offered at the time of diagnosis
Testing and Monitoring for Celiac:
-the initial screening tests for celiac should include a quantitative IgA and IgA anti-tissue
transglutaminase (tTG). These tests should also be followed after diagnosis to monitor
compliance with the gluten-free diet.
-10% of celiac cases are seronegative, which means that the celiac antibodies are falsely negative even though celiac disease is present!
-celiac genetic testing can be helpful in trying to figure out whether to pursue a gluten challenge and further testing in kids who have been put on the gluten-free diet prior to testing.
I wish a Happy Thanksgiving to all who celebrate and I hope to reply back to your emails and Facebook messages as time permits over the next few weeks. I am so grateful for your readership. enthusiasm, and for motivating me to continue to keep up this page. I hope that you are all able to enjoy quality time with your loved ones as the holidays approach. We moved back to my hometown of Cleveland a few months ago and I’ll be hosting my side of the family for Thanksgiving for the first time in about 9 years! Please feel free to share your favorite GF Thanksgiving recipes in the comments section if you’d like as I’m a bit nervous about cooking for so many people!
Leonard, M., Weir, D., DeGroote, M., et al. Value of IgA tTG in Predicting Mucosal Recovery in Children with Celiac Disease on a Gluten Free Diet. Journal of Pediatric Gastroenterology and Nutrition. Published online Nov 3, 2016.
Snyder, J., Butzner, M., DeFelice, A., Fasano, A., Guandalini, S., Liu, E, Newton, K. Evidence-Informed Expert Recommendations for the Management of Celiac Disease in Children. Pediatrics. 138(3). September 2016.