How we rally behind our son with Celiac Disease
Original post May 2017. Updated and reposted May 2020. The short version is this: we are the Healthy Gluten-Free Family because of our son. Ten years ago this month (aptly during Celiac Disease Awareness Month), our youngest child was diagnosed with Celiac Disease just weeks before his fifth birthday.
Celiac disease is an autoimmune condition in which the body cannot tolerate any amount of gluten, the protein found in wheat, barley and rye. When gluten is consumed, the immune response damages the small intestine and interferes with nutrient absorption. The only effective treatment is a strict gluten-free diet. And so our journey began.
Flash back to 2010…
Back then, “gluten” and “celiac” were not household words, and the gluten-free market was tiny compared to what it is today. My son was almost five and his favorite food was pasta — a scary thought at first. I was determined he would not lose his love of food.
He’s always been a foodie at heart. Even as a small child he lingered at the table, savoring each bite, and would ask to try what others were eating. He loved helping in the garden and would happily eat kale and cucumbers straight from the vine. He preferred whole, real foods over packaged snack items.
I was determined that Celiac would not stand in the way of my little boy’s joy of food.
So I made a promise: if my son wanted a food we couldn’t find, I would learn to make it gluten-free. With the focus of a mom and the skills of a trained marketer, I dove into the gluten-free world headfirst.
We tested every product we could find — and in 2010 many of them tasted like cardboard — and experimented with countless recipes. My son would leaf through cooking magazines and point to dishes he wanted to try. Over time we learned how to cook and live gluten-free in a way that felt natural and joyful.
We made our home a gluten-free kitchen.
Today our household is roughly 90% gluten-free — we keep some bread and bagels for family members who still eat gluten, with precautions in place — but when we cook, bake or grill, everything is 100% gluten-free. We host gluten-free gatherings and when we dine out with our son, I eat gluten-free too so he can share my plate. To support him, we became the Healthy Gluten-Free Family.
Update May 2020:
The little boy in the photo is now nearly six feet tall and celebrating ten years gluten-free this month. So much has changed in the world and especially in the gluten-free landscape. Options are far more plentiful and, for the most part, taste much better than they did a decade ago.
That greater availability also brings new challenges: inconsistent labeling enforcement and the ongoing risk of cross-contamination in prepared foods and restaurant kitchens. Meanwhile, our family challenges have shifted. We moved from navigating birthday parties and day camps to managing sleepaway camps, team pasta dinners, nights out with friends, and soon the transition to college life.
Through these years our son has become his own advocate, learning to recognize what is safe and what is not. Our commitment, however, has not wavered: we remain dedicated to preparing easy, delicious gluten-free meals that everyone at the table can enjoy.
In fact, our dedication has only deepened as our boys grew, appetites increased, and our son became a confident and capable cook himself. Hosting holidays and family events pushed us to perfect recipes and techniques so guests eat well without compromise.
Each Celiac Awareness Month I reflect on our journey and recommit to sharing our story and practical guidance for living with celiac disease. I’ll be posting behind-the-scenes updates, tips and resources for families navigating the same path.
Leave a comment if you have questions about life with celiac disease or raising a child or teen with celiac disease.