I would like to thank the National Foundation for Celiac Awareness (NFCA) for inviting me to be a part of their “Fuel the Family” blogger series during Celiac Awareness Month. The NFCA’s efforts on behalf of the celiac/non-celiac gluten-sensitive community continue to inspire me to spread awareness via my website. I look forward to reading the other invited bloggers’ and NFCA staff member stories throughout the month of May.
My celiac and lactose intolerance diagnoses were given to me by my gastroenterologist during a five minute cell phone conversation. Up until the day he suggested I get tested, I’d heard very little about this autoimmune disease. Of course, once diagnosed, that all changed and I began researching ad infinitum! When I learned celiac was genetic I immediately reached out via email to every first, second and even third degree relative I had, some of whom I hadn’t been in contact with for many years. The email went something like “Dear Cousin Jane, remember me? I now have celiac and maybe you do too, so you should get tested." Well, maybe I was a tad more diplomatic!
Surprisingly, it was my immediate family who were the least receptive to testing. I have a brother with lactose intolerance and stomach issues. I urged him to get tested at every opportunity (barbecues, birthdays, holiday get-togethers). I spoke of the symptoms and complications, yet he waited close to a year to be tested (negative result). I urged my nephew who suffers from debilitating migraines and stomach issues to get to the doctor sooner, rather than later – he waited about 8 months (negative). I emailed my aunt with severe psoriasis several times about being tested, as well as her daughter who has stomach issues. To this day I don’t think either has been tested. I frequently joked with my mum that I probably inherited celiac from her, because she was always popping peppermints claiming they “soothed her tummy," a remedy she inherited from her mum (hmm?). Eventually, she and my father were tested during hospital stays for other health conditions and both were negative. My non-celiac twin boys were both genetically tested and one was found to be in the “Category 4: High Relative Risk." He does have some symptoms which, according to his gastroenterologist, could be pre-celiac (constipation, reflux, tooth enamel erosion). Both boys are being monitored closely.
Though my relatives’ attitude initially towards testing was somewhat lackluster, I feel I was successful in my mission to get most of them tested. Fortunately for them, all blood tests were negative. I touched briefly on possible IgA deficiency, false negatives and was immediately met with resistance (in the form of eye rolls) so I ended the subject (for now!). So it would seem, I am the only one with celiac in my family … “on paper” that is. I believe there are others who may have it (or will likely develop it). I certainly hope not, but I will continue to advocate for the health of those family members experiencing symptoms, but have yet to be tested. I’ll remind them at the next family reunion, if not before!
Thank you for reading my celiac family story. I am happy to share it with you. Have you had similar experiences with your relatives?
For more information on celiac disease testing, please visit the Diagnosis & Treatment section of beyondceliac.org.