The hardest part of being a parent by far is the constant worrying. I’m a big worrier as is but when it comes to my girls, my mama bear mode kicks in and my worrying goes to a whole new level. I think I share the same concerns that every parent has for their children. Of course the obvious ones regarding their health and happiness. But as a parent with health issues that can surely be genetic, I can speak from personal experience that not a moment goes by when I don’t worry about what tomorrow will look like for them.
I’m one of the lucky parents though. On both of my girl’s birth days, they were born healthy. They cried loud, fragile little cries with ten fingers and ten toes, both weighing in at healthy 8 pounds and some ounces. For those first moments of motherhood I was able to breathe a sigh of relief, little did I know it would be my last one for the rest of their lives. You see what I’ve realized since their births is that you never know what tomorrow will hold for your kids, just as I haven’t for myself. And while we’ve been lucky with only minor issues here and there with both girls, I catch myself watching them like time bombs.
I find myself praying constantly that my girls won’t face the same health challenges that I have. And while eating gluten free might not seem like the worst of challenges it’s the years of damage and pain that I went through that I hope they will be spared. I spent too many years just getting through each day, not enjoying life and I can only hope that they can avoid that. Since I can’t predict the future though I’m stuck here worrying, praying, and crossing my fingers and toes that they’ll get Daddy’s genes when it comes to this one.
Thankfully though, along with all of my hoping, we’re starting to see movement in this area of research thanks to Dr. Alessio Fasano, who’s taking huge steps to help the futures of little ones like my own.
Dr. Fasano and his team at the Center for Celiac Research over at MassGeneral Hospital for Children (MGHfC) are working in collaboration with the Celiac Program at Harvard Medical School to better identify, predict, and ultimately prevent the development of celiac disease. This kind of study is just what I’ve been hoping for and exactly what our children need for their future. To figure out their risk of developing the disease and hopefully prevent it down the road would be a massive improvement for the quality of life of many of our kids. Even though I’m not officially a diagnosed celiac, many of my relatives have celiac or another auto-immune disease so even without the official label myself, which is more than likely there just wasn’t tested for, I consider my kids at risk for someday classifying themselves as celiacs too. The good news, with the help of celiac parents everywhere, the Celiac Disease Genomic Environmental Microbiome and Metabolic Study (CDGEMM) could help change the future for our children.
Want to learn more and how you can participate?
What is the ultimate goal of the CDGEMM study? This is a prospective, observational, and multi-center, international study that will follow infants until they reach five years of age. With a child’s genetics and environmental conditions and more they’ll be able to identify the how these factors can contribute to celiac development. And with those contributions, they’ll be able to predict who will develop celiac before it actually happens. Sounds like a huge win for future and maybe eventually current celiacs everywhere!
Who can enroll?The CDGEMM study is enrolling infants under 6 months of age who have a parent or sibling who has diagnosed celiac. You can even enroll if you’re currently pregnant too! No worries about location either. This study is international and your participation is as simple and convenient as from your own home and local pediatrician.
What does participation in the study entail? Children will be tested for celiac auto-antibodies every 6 months throughout the duration of the study. Also, genetic tests will be performed to check to see if your child carries celiac-compatible genes.
To learn even more about this groundbreaking study by Dr. Fasano, head over to http://www.CDGEMM.org or email CDGEMM@mgh.harvard.edu with any questions.
Also like CDGEMM on Facebook (Center for Celiac Research) and follow them on Twitter (@CeliacDoc or @CeliacResearch).
There’s no question in my mind that this study will change the future for all celiacs and those suffering from gluten intolerance. I’m so grateful for this study and am hopeful that it will brighten the lives of many of my fellow gluten free individuals and their families!
Sincerely,
Lindsay
Jenny
January 19, 2016 at 3:50 pm (9 years ago)It’s hard I can imagine my son has severe allergies to many things including many foods and it gets tough to pin point it and narrow it down than learn to cook and live that way. Best of luck with your little ones. Thanks for linking up to Share With Me. #sharewithme