But now my family is too old unfortunately. But there is an opportunity for young families affected by celiac to help Mass General gather information that may help doctors predict who might get celiac disease, BEFORE it happens.
It’s called the Celiac Disease Genomic Environmental Microbiome and Metabolomic (CDGEMM) study.
Led by Dr. Alessio Fasano, the study’s goal is to create a model to identify a pattern of gut bacteria also known as microbial signatures. In combination with environmental factors, it could help doctors predict who will get celiac and who won’t. Once doctors have this information, their goal is to develop treatments (based off this research), and prevent celiac from occurring.
In my family, celiac disease impacts three generations! If we can take action now to help get the answers researchers need, then maybe our grandchildren won’t go through what our children (or we) went through.
Celiac research details
Mass General needs 500 infants (up to six-months old) to participate in the study. According to CDGEMM’s January newsletter, they already have 90 children enrolled in the US and 75 in Italy, but they need more. The infants can live anywhere in the US and need to have a first-degree relative (parent or sibling) with celiac disease. Moms who are currently pregnant can also get the process started.
- periodic testing of the child’s blood, stool and medical and dietary information
- no travel involved
- five-year commitment
- all tests are free of charge (including genetic testing)
- close monitoring of celiac disease since each blood draw will be tested for the antibodies for celiac