This past weekend I got a chance to bond once again with everyone at my local Greater Boston celiac support group, the Healthy Villi, during our spring conference. Like many folks around the country I find that these local celiac support groups give me the chance to re-connect with like-minded people, as well as share and discover new ideas, concepts, and solutions for living the gluten-free life.
And at every one of these meetings I always take home such a wealth of knowledge & information from Dr. Daniel Leffler, the Director of Clinical Research at the Celiac Center at Beth Israel Deaconess Medical Center and Assistant Professor of Medicine at Harvard Medical School. Lucky for us at the Healthy Villi, Dr. Leffler (who is also the co-editor of the book, “Real Life with Celiac Disease: Troubleshooting & Thriving Gluten-Free”) has become our “resident” go-to celiac expert – always willing to help us, give us answers, and most importantly support us.
But at this last meeting it was our time to give back… to support Dr. Leffler. The team at Beth Israel Deaconess Medical Center asked us to help with a research study. To potentially help celiacs everywhere. For once it was our chance to give back.
The research study we were asked to participate in involves having our first-degree relatives test themselves for celiac disease using a new “finger-stick” test kit. Research results of this testing will hopefully be beneficial in two ways: First, family members who tested positive for celiac disease will be assisted in arranging appropriate medical follow-up to lead to an earlier diagnosis & care of the disease; and second, this research will hopefully get these tests, which are currently approved in Canada, on the fast-track to get the final nod of approval by the USA so the medical community can more readily reach & treat more potential people with celiac disease, and allow these medical researchers the ability to conduct more efficient studies of the disease.
The test kit being used in Dr. Leffler’s test is distributed by GlutenPro and is called Biocard/CeliacSure. It is similar to the standard celiac blood test TTG used in doctor’s offices, but is super consumer-friendly. It involves using just a finger-stick and is able to be read directly by patients in less than 10-minutes right in their own homes. (Note: they can also be purchased on-line through the GlutenPro website).
My thoughts? The Biocard/CeliacSure tests will be a phenomenal help in getting more people diagnosed quickly & more efficiently with a celiac disease diagnosis. For years I have begged my Dad to go to the Doctors and get tested for celiac disease once I and other family members were diagnoses with the disease. He has every symptom in the book. But to get an old Italian guy, set in his bread-and-pasta-loving-ways to the doctor for this test is next to impossible. Begging, pleading and praying have yet to yield a trip to the doctor’s office to get the test and results of celiac disease that I suspect.
Maybe he is scared of going to the doctor? Maybe he is afraid of letting his traditional Italian bread and pasta recipes go? Maybe he is afraid of the change the disease demands? Maybe his positive diagnosis would be his way of feeling responsible for my, and other family members, celiac diagnosis?
Whatever the reason, I am going give my Dad one of these test kits so he can test himself – no doctor, no stress, no appointment needed. Then, regardless of the results, I’m going to treat him to a big delicious gluten-free Italian pasta dinner… and a great big thank you hug.
Just wondering… Your thoughts? Why won’t your relatives get diagnoses with celiac disease?