Whenever I tell my family’s story of getting tested for celiac disease, I can’t help but think of that old familiar saying – “Hindsight is 20/20.”
I am the only one in my family diagnosed with celiac disease. It took 6 years, a stillbirth, losing 25 pounds, and the family veterinarian for me to get my diagnosis, but once I did, I was on a mission to tell everyone about celiac – hence the beginning of the National Foundation for Celiac Awareness (NFCA). But that’s another story.
I quickly learned of the genetic component of celiac disease and started telling my siblings they needed to get themselves and their children tested. Not only did I have a confirmed diagnosis but, looking back, I firmly believe my mother lived with undiagnosed celiac disease for her entire life. Both of my parents passed away from cancers. My mom’s cancer could have been linked to undiagnosed celiac disease. The risk for my siblings was strong and I had an obligation to let them know.
Armed with this information, I presented the facts to my siblings and as you probably guessed, I was greeted with a slew of reasons why they wouldn’t get tested. “I don’t have any of the symptoms you had.” “I feel fine.” “I won’t eat gluten-free, even if I do have celiac.”
Discouraged, but not defeated, I tried a different approach. Since we lost our mother at a young age, I knew they would never want their children to grow up without a parent. I remember asking them, “Wouldn’t you rather know now, adopt the gluten-free diet and be there for your children as long as you can?” Their answer was yes –my siblings have now been tested.
As it turns out, my siblings and their children have tested negative for celiac disease, but some do carry the gene. My brother does not have the celiac gene but still felt he was gluten sensitive. He went gluten-free and discovered that his psoriasis, among other symptoms, cleared up. My two daughters have both been tested as well. One does not have the genes at all, while the other does carry the genes and gets tested yearly. Ironically enough, my daughter’s roommate was diagnosed while they were living together in college. It’s amazing what a little awareness can do, isn’t it?
Not too long ago, my cousin, Danielle, had her son tested for celiac disease because he was experiencing gastrointestinal symptoms. Danielle’s mother-in-law decided she would get tested as well. Celiac disease runs in her side of the family, but she never considered testing until celiac was a possibility for her grandson. Sure enough, both of their tests came back positive and they are now thriving on the gluten-free diet.
I know that my story of family testing doesn’t line up with the statistics – I am the only one living with celiac disease. While my family has been fortunate enough to not develop the disease yet, the risk is still there and they still need to recognize the symptoms and be diligent about regular testing. It is our duty as the lucky ones who have received a diagnosis to inform others so they can work towards being well. And while it may not have been my immediate family who benefited from testing, my extended family has received diagnoses, and it’s all because we’ve talked about it and shared the knowledge we’ve gained. With a little patience, a little persistence and a lot of understanding, we can talk to our families about celiac disease testing. We can restore health and reclaim lives.
To our families’ GREAT health,