Living with celiac disease presents a lot of challenges, from having a restricted diet to explaining to others that your gluten-free diet isn’t just a fad. If you have a child with celiac disease, it can be even more challenging to navigate a world full of gluten. Understanding why some people have celiac disease and what factors contribute to its development is important for better understanding how it could be treated or prevented.
A groundbreaking new study is set to try to uncover some of these mysteries about gluten and celiac disease. Called the Celiac Disease Genomic Environmental Microbiome and Metabolomic (CDGEMM) study, it will investigate several of the many factors that are thought to contribute to the disease. The research is being led by Dr. Alessio Fassano from the Center for Celiac Research at Massachusetts General Hospital for Children and Harvard Medical School’s Celiac Program. They are looking for participants, and you may be able to help.
Goals of the Celiac Research Study
The goals of this landmark study are to better understand the development of celiac disease from genomic, environmental and microbiome perspectives. Researchers have already discovered a group of genes that are related to the development of celiac disease, but not everyone who has these genes will develop the condition. The researchers want to find out why and also find other genes that may be involved.
The study will also consider environmental factors that may contribute to celiac disease. These include how a baby is delivered, use of antibiotics, formula feeding and breast feeding, and exposure to certain kinds of food. Finally, the CDGEMM study will look at the microorganisms that live in the gut (the small and large intestines) to determine how this microbiome may impact the development of celiac disease.
These are the specific goals of the celiac research study, but more broadly it is hoped that the findings will lead to better prediction of who gets this disease and who does not. If celiac disease can be predicted in an individual before it actually develops, preventing or treating it successfully may become possible.
If this subject is important to you, you may be able to contribute to celiac research. The CDGEMM study researchers need infants with a first-degree relative diagnosed with celiac disease. First-degree relatives include a mother, father or sibling. If you have a baby or are pregnant and have someone in your family with celiac, you can help by allowing him or her to participate.
Participation requires completing questionnaires and undergoing simple examinations (including stool samples and blood draws) at the beginning of the study and every six months until your child is 5 years old. Parents will also be asked to keep a diary of diet and antibiotic use for the baby’s first year. Participating centers for research are in Italy and Boston, but you can participate from your pediatrician’s office.
In addition to helping to contribute to celiac research, your child gets the benefit of early and regular screening for celiac disease. Researchers will be checking blood samples for celiac markers, and if your child has them, he or she can benefit from early detection and treatment.
How You Can Get Involved
Getting involved in the CDGEMM study is a great way to help contribute to the knowledge about celiac disease and to be a part of something that will make a real difference in the lives of people who live with this condition. If you want more information about signing up as a participant, you can visit the study website or send an email (CDGEMM@mgh.harvard.edu) to get your questions answered or to get started.