In a new medical study, researchers from MassGeneral Hospital for Children (MGHfC) and Boston Children’s Hospital (BCH) were surprised to discover that nearly one in five children with celiac disease sustained persistent intestinal damage, despite strict adherence to a gluten-free diet.1
These findings are consistent with research in adults, which showed that more than 33 percent of adult patients on a gluten-free diet have persistent intestinal damage, despite a reduction of symptoms or the results of blood tests.
Current guidelines for pediatric celiac disease patients recommend a single biopsy at diagnosis and follow-up blood testing to monitor recovery of the intestinal mucosa. It was assumed that intestinal mucosa (lining) healed in children after adopting a strict gluten-free diet and that the blood tests would accurately reflect whether healing was occurring or not. It appears this assumption was incorrect.
Another finding that surprised Dr. Alessio Fasano, one of the senior study authors, and director of the MGHfC center was that blood levels of the autoantibody IgA tTG – the primary lab test used to monitor celiac disease – did not accurately measure mucosal recovery. In fact, the authors note, neither blood test results nor patients’ symptoms accurately predicted repeat biopsy results, and the tTG antibodies that are most effective for diagnosis were not as useful for monitoring the rate of mucosal healing.2
Considering the results of the current study, Ivor Hill, MD, of Nationwide Children’s Hospital and the Ohio State University School of Medicine also called for revisiting current treatment guidelines and raised questions about the prevalence of intestinal damage in children with celiac disease and the best way to proceed. “Until we have a reliable non-invasive means of determining mucosal healing in children with CD, it seems the biopsy will remain important both for initial diagnosis and subsequent monitoring,” Hill wrote.3
Long-term risks for children with persistent intestinal damage are not clear, but such damage in adults has been linked to an increased risk of lymphoma, low bone density and fracture. The study authors also note, “malabsorption and inflammation in children may have negative repercussions on physical and cognitive development.”4
The study was carried out by members of the Celiac Research Program at Harvard Medical School (HMS), a collaboration between MGHfC, BCH and Beth Israel Deaconess Medical Center. As a result of the current findings, the Center for Celiac Research and Treatment at MGHfC – which treats both adults and children with celiac disease and other gluten-related disorders – plans to undertake a collaborative, prospective study on the rate of mucosal healing in children.5
The results of this recent study come as no surprise to us at Gluten Free Works. Gluten Free Works first reported similar results in medical studies performed in 2001 and 2003 in our medical reference, Recognizing Celiac Disease, published in 2007. Non-recovery is usually due to non-compliance with a 100% strict gluten-free diet, but may also be due to nutrient deficiencies or other causes. This is why we created our online resource. The Gluten Free Works Health Guide, to help patients and health professionals identify and correct symptoms and conditions related to, or caused by gluten, gluten sensitivity or celiac disease. Over 300 signs, symptoms, associated disorders and conditions are explained, including steps to treat each health problem.