New US Group to Study Celiac Disease

Last June, at the International Celiac Disease Symposium in Oslo, Norway, US representatives advocated for the formation of an US umbrella group for the study of Celiac Disease. 

It has long been felt that there was a need for a single US based group to foster the study of Celiac Disease among researchers in the US and to be a clearinghouse for major issues related to Celiac. Thus, the North American Society for the Study of Celiac Disease (NASSCD) was born.  This new group is still in the organizational stages.  They hope to be able to evaluate research projects that appear to be the best designed and obtain funding for them.  There is already a similar organization in Europe.  The new group will focus its efforts here in the US to fund the best new research among US scientists.

At that same symposium, the European group, the European Society for Pediatric Gastroenterology, Hepatology and Nutrition presented their recommendations for screening children. While the group's recommendations apply to children, it is expected that they will also be adopted to diagnose adults.  The guidelines are for diagnosing a child who is at risk for CD but not necessarily exhibiting gastrointestinal symptoms. This recognizes that CD is a multi-organ disease and not just an intestinal condition.  The child may in fact have no symptoms to warrant being tested.  The recommendation states that the at-risk child should first have a gene test.  Children are considered at risk if they have a close relative with Celiac Disease or other related condition such as Type 1 Diabetes.  If the gene shows one of the tell-tale genes for CD the next step is a Tissue Transglutaminase test (TTG-IgA).  If the results is three times the normal value the child would be referred for a biopsy.  If it is normal, the next test is for endomysial antibody (EMA).  If that is negative, no further testing is needed. If it is positive then a biopsy is needed. 

Symposiums such as the International Celiac Disease Symposium allow researchers to meet and compare findings.  They also serve to standardize diagnostic and other criteria so that is possible to compare studies among different countries.  To compare studies, it is important that  all the countries are on the same page with what is considered Celiac.