In honor of Celiac Awareness Month
I wasn’t expecting to get a call from the doctor — I don’t mean the doctor’s office — the doctor herself.
“I’m so glad I caught you,” she said, and my first thought was: that’s not good. But her next words were even more unexpected. Celiac disease. My son’s test results confirmed he had celiac disease.
When she originally suggested that blood test, it was one of a handful of tests “just to rule out” any other causes for his symptoms. We had been seeking medical advice for about four years and had recently switched to her office. Other doctors had done x-rays and offered a variety of possible diagnoses, but nothing had really helped this strange mix of developmental and digestive issues — until this phone call.
I scribbled notes. He would need a procedure to check his intestines and then a “gluten-free diet.” She said we should buy a new toaster. Ok, I thought, new toaster, special diet. I can handle that. I had no idea how this was about to change our lives.
That was two years ago. Over these two years, I’ve become an expert food-label reader, a gluten-free baker, a meticulous restaurant investigator, and a birthday party hawk. Thanks to all that, my son started to grow, stopped having stomach cramps, became a better student, and so much more.
More than a Celiac Disease Diet
Celiac disease is an autoimmune disorder in which the body treats gluten like a threat. It produces antibodies — like those that fight viruses — but instead of targeting an invader, they attack the lining of your own intestine. This causes inflammation throughout the body, which is why celiac symptoms are so varied and easy to miss: brain fog, achy joints, headaches, and stomach aches. People often lose weight because their intestines stop absorbing nutrients properly, and children can grow more slowly than expected.
The most challenging part is that the immune response gets triggered by even the tiniest amount of gluten — a speck of flour, a few crumbs from a cracker. And research shows that even in people who don’t feel obvious symptoms, small amounts of gluten cause ongoing damage to the intestinal lining, making people with celiac more susceptible to cancers and other serious long-term health effects.
Once you start watching for it, gluten seems to be everywhere. It’s not just wheat — it’s also in rye and barley, and it hides in all kinds of additives. Unlike many allergens, gluten is not required to be specifically labeled on food packaging in the U.S. It shows up in soups as a thickener, in soy sauce, and even milkshakes as malt. And cross-contact is its own hazard: if a restaurant uses the same fryer for fried chicken and french fries, enough gluten transfers to cause a reaction — even when fries are marked “gluten free,” they may not be safe for someone with celiac.
The part nobody talks about
I’ve gotten more comfortable being assertive at restaurants, asking very detailed questions of waiters — but that’s still really hard to do with friends and family. Because food is part of community. It’s so often how we share and show care. When our son was diagnosed, our friends’ and families’ kitchens suddenly felt like minefields. Gluten gets stuck in sponges, cutting boards, toasters, and colanders. We have to say no to homemade desserts, and when we’re invited anywhere, I bring our son his own snacks and a special meal. It can feel isolating — for him, and honestly, for me too.
This is why celiac is a tricky disease to manage psychologically. Many patients develop food anxiety and even depression. Parents aren’t immune to that either. There’s a particular kind of exhaustion that comes from being the person who has to ask every question, read every label, and make every call — while also trying not to make your kid feel like a burden at every table he sits at.
But you know what helps? Awareness. As our whole community comes to understand what celiac means, our life gets better. Every teacher who understands why a classroom treat needs a safe substitute, every coach who thinks twice about team pizza night, every friend who calls ahead before a dinner party — these small acts of understanding add up to a safer, less isolating life for our son and the 3 million other Americans living with celiac disease.
Two years in, we are still learning, but my son knows what he can and can’t eat, advocates for himself better than most adults I know, and hasn’t let it slow him down. Looking back, I do wish we had gotten a diagnosis sooner. But here we are — watching him thrive. And the awareness are building around him, one conversation at a time, has made all the difference.
May is Celiac Awareness Month, and for families like mine, it’s a chance to open a wider conversation — to share our experience and answer your questions. Drop a comment below and we’ll do our best to answer them.
For more information on celiac disease, visit the Celiac Disease Foundation at www.celiac.org.
