Since my diagnosis nearly four years ago, I’ve had the pleasure of conversing with some wonderfully pleasant people about living gluten-free, Celiac disease, other food allergies, and health obstacles. Reaching out to this community is probably my favorite thing in the world to do, as making connections with people who share the same winding road is an invaluable experience.
One thing in my conversations as of late has been more than troubling to me though. When faced with the facts that Celiac is a genetic disease, many people who were cordial to me just moments ago turn angry and lash out, refusing to believe that their parents, their children, or even their grandparents may carry the gene. I become the bearer of supposed “bad news” and am shunned as the “bad guy”. Well, bad girl I suppose. It is understandable that such breaking news may be a shock to some, but in the wake of an attitude that is truly reckless and selfish, I have to call foul.
The University of Chicago Celiac Disease Center states that genes related to Celiac disease are passed down through generations. A first degree relative (parent, child, brother or sister) of someone with Celiac disease has a 1 in 22 chance of developing the disease while a second degree relative (niece, nephew, aunt, uncle, grandparents, and half siblings, etc) has a 1 in 39 chance. A great place to start with the breakdown of testing is through this U of Chicago pdf. While some carriers of the gene may not have active Celiac, they could develop symptoms at any point in their lives. Routine testing is recommended in these cases. It’s also possible the gene was not inherited, which in that case is a fabulous thing to know.
So many people are brushing these facts aside in a “why bother testing?” attitude that is really doing a major injustice to themselves and the health of their family. In one instance, a mother struck up a conversation with me to talk about her recently diagnosed daughter. I responsibly let her know the risk that her other children may face as well as her and her husband. The genes had to come from somewhere in that immediate family, but she refused to believe me and stormed off.
I strongly urge all of us with celiac disease to speak out and make these facts well known! Knowledge is power and when lives could be at risk, we need to know we are doing all that we can to improve the situation. I’ve always said this disease was a blessing and a responsibility. It is now more than ever. It doesn’t have to be Celiac Disease Awareness Day, Month, or Year for us to spread the word and maybe save a life in the process. Please feel free to forward, repost, share, and link back to this post.
- The University of Chicago Celiac Disease Center
- Delight Gluten-Free Magazine
- Celiac Disease Center at Columbia University