Making Tracks for Celiacs

I thought about writing two separate posts but with this year’s celiac walk falling on my daughter’s birthday, I decided to incorporate information on both my local Central New York Celiac Support Group (CNY Celiacs) and some of my journey about what it was like raising a celiac child way before the gluten-free diet was trendy.

As many of you may know, May is Celiac Awareness Month. This past Saturday, May 3, I had the privilege of participating in the Central New York Celiac Support Group’s 13th Annual “Making Tracks for Celiacs” Walk-a-Thon. The Walk was held at Jamesville Beach Park, Jamesville, New York.  The CNY Celiac Support Group sponsors this event and works tirelessly to put it all together. There were fabulous raffle baskets with great prizes as well as several local vendors offering samples.

Local contributing main sponsors to the walk included Wegmans, King David’s Restaurant, and Haylor, Freyer & Coon, Inc. Other contributors included Price Chopper, UNO Chicago Grill; Lockheed Martin; Holistic Blends; Tops; Yum Yum’s Gluten Free Bakery and Broadway Café and Arctic Island.

After expenses, all funds benefited the Center for Celiac Research at Mass General.

According to The Central New York Celiac Support Group website ( the group was formed “to share support and understanding in helping us manage our lives well without gluten, and to create greater understanding of celiac disease and gluten sensitivity in both the lay and professional community.”  The group has a board of directors as well as a medical advisory board; they also work with a registered dietitian.

My older daughter—who was diagnosed with celiac disease at 15 months of age—celebrated her 23rd birthday on the day of the Walk so this year’s event held special meaning for me. My daughter was diagnosed in the early ‘90s--way before the Internet and before being on a gluten-free diet was all the rage in Hollywood. Back then, there were no gluten-free bakeries like Yum Yum’s nor did restaurants offer gluten-free pasta on their menus. Heck, people didn’t even know what gluten was back then. Dining out was stressful and birthday parties even more so. I was working full-time outside of the house when my daughter was diagnosed so my days off consisted of trying new recipes—and tossing many of them in the garbage. At that time, it was nearly unheard of to blend anything other than rice flour, potato starch and tapioca flour when baking. Blending flours to turn out great-tasting gluten-free foods was unheard of. Most finished products resulted in that awful grainy taste that most celiacs know all too well. Yuck.

I made bagels from scratch and probably could have gotten hired by H&H after perfecting the gluten-free version of their heavenly offerings. (“Seinfeld” fans and Manhattanites will appreciate this reference.) I spent countless hours calling food manufacturers (no websites to jump on or people to tweet) to request gluten-free product lists that they would then send by regular postal mail. It would be about two weeks or so before I received any information and by then it was possible that that information was already outdated. I was told by customer service reps all the time that “formulations change” and the best thing to do was check the labels in supermarkets, as if there was time for that during each grocery trip. I was too busy hoping my daughter wouldn’t throw up in the cart from hidden gluten as I tried to navigate this new, frustrating diet.

Though it wasn’t easy, I take pride in the fact that I “earned my stripes” as a parent of a celiac child when dealing with the gluten-free diet seemed like the least fun ever. Back then, the world seemed chock-full of people who thought your child was a picky eater because she wasn’t enjoying pizza like everyone else. They’d ask, “Can’t she just have ‘a little bit?’” (Umm…no.)
I refused to say that my child had an allergy just so strangers—and even some family members—could understand what it meant for a little girl to watch other kids eat cupcakes until her mom learned to make (and decorate!) ones that looked and tasted like the real thing.

The celiac community has come a long way—“making tracks”--and I am proud to be a part of its evolution. This progress is thanks to many different people--not the least of which are groups like CNY Celiacs--for sharing information, helping others and holding fundraisers like the Walk-a-thons; vendors like Wegmans and Price Chopper for expanding their product lines to include gluten-free options; and people like Erin Gridley of Yum Yum’s taking chances on starting gluten-free businesses. Thanks to all of you, and to all the others that I haven’t mentioned here.

I hope that after reading this post you will make a commitment to support one or more of the above organizations or businesses and any others in your area that you know that are “celiac friendly,” especially the small businesses. I also hope you will sign up to follow my blog and join me on my journey to help you be “CeliacSavvy,” too. After all, it is a great time to be gluten-free!