How we rally behind our son with Celiac Disease
Original post May 2017. Updated and reposted May 2020. The short version is this: we became the Healthy Gluten-Free Family because of our son. Ten years ago this month—fittingly during Celiac Disease Awareness Month—our youngest son was diagnosed with celiac disease just weeks before his fifth birthday.
Celiac disease is an autoimmune condition in which the body cannot tolerate 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 widely known and gluten-free products were scarce and often disappointing. My son was nearly five and his favorite food was pasta. My immediate fear was: no pasta? No way.
He has always been a little foodie, which became the biggest motivation for this blog. He loved trying new flavors and savoring meals. Even as a toddler he would linger at the table, asking to try bites from other plates at home or in restaurants.
He loved helping in the garden and eating vegetables straight from the vine. He preferred real, whole food over processed snacks. That curiosity and enjoyment of food made it clear we needed to make gluten-free eating joyful and satisfying, not restrictive.
I was determined that celiac would not take away my son’s joy of food.
I decided that if he wanted to try something we couldn’t find in stores, I would learn to make it at home. With the passion of a mother and the skills of a marketer, I dove into the gluten-free world.
We sampled every available product (remember, some early gluten-free foods tasted like cardboard) and tested countless recipes. My son would flip through cooking magazines and point to dishes he wanted to try. Gradually we taught ourselves to cook, bake and live gluten-free.
How we live now
Today our home is mostly gluten-free. There are a few items for my older, gluten-eating son, but when we cook, bake or grill for the family it’s 100% gluten-free. We host gluten-free gatherings and when we dine out with our son I choose gluten-free options too, so he can safely try food from my plate.
In short, 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. The gluten-free landscape has changed dramatically. Options are far more available and taste much better than they did a decade ago.
Greater availability has introduced new issues: inconsistent labeling, lapses in enforcement, and ongoing concerns about cross-contact in prepared foods and restaurants. Over the years our challenges shifted from navigating birthday parties and day camps to managing sleepaway camps, team pasta dinners, nights out with friends, and soon college life.
Through it all, our son has grown into his own advocate and learned to judge what’s safe to eat. Our commitment hasn’t wavered: we remain dedicated to cooking easy, delicious gluten-free meals everyone at the table can enjoy.
As our boys grew and appetites expanded, our focus on making great-tasting food intensified. Our son has become a capable cook himself, and as hosts of family holidays and events, we aim to make every meal inclusive and satisfying.
Each Celiac Awareness Month I recommit to sharing our story and the practical ways we manage life with celiac disease. I’ll be posting behind-the-scenes content and answering common questions about raising a child or teen with celiac disease.
Please leave a comment if you have a question about life with celiac disease or raising a child or teen with celiac disease.