It doesn’t happen every time, but it happens often enough. There I am, six feet tall, and built like a tank, with a full beard and one lobotomy-covering American-flag headband away from a recurring role on Duck Dynasty, standing in the grocery store aisle crying like a baby. It’s not because mommy won’t buy me Chocolate Frosted Sugar Bombs but because I won’t buy them for my daughter. Or, more accurately, because I can’t buy them for my daughter.
A little over six months ago, my daughter was diagnosed with Celiac disease, an autoimmune disorder that causes the body to react badly to the presence of gluten. Gluten is a protein found it wheat, barley, and rye and is responsible for the chewiness of bread and pizza dough and a million other foods. There is no cure; the only option is to follow a strict gluten-free diet.
Early in 2014, Sara began getting out of bed after dinner to complain about stomach aches. At first, we thought it was just a ruse — an excuse to stay up later. We mostly gave her a TUMS and sent her back to bed. The situation became far more serious, however, when she started sitting out of dance classes and theatre rehearsals due to the stomach aches. That’s when we knew we had to take her to the doctor. In fact, it was Sara that asked to go to the doctor.
The doctor checked her out and ordered a whole mess of tests. About a week before Thanksgiving, we got a call. Sara had Celiac disease. At that time, we had no idea what that meant and Google left us with as many questions as it gave us answers. We scheduled an appointment with the gastrointestinal specialist to find out more and get our questions answered.
We broke the news to Sara just before Thanksgiving as we didn’t want her getting sick and not being able to play with her cousins and grandparents. She was okay with the idea of not eating rolls — she’d never really liked bread anyway — but was devastated by the thought of not being able to eat her Nana’s cookies and cakes.
On the one hand, it could have been much worse. I keep telling myself that at least it’s not cancer. But that doesn’t seem to help a whole lot.
The world of a ten-year-old girl is filled with flour-based treats. From her grandmother’s cookies to birthday cupcakes at school, ice cream cones to snacks, it seems everything is loaded with wheat flour. And that’s just the tip of the ice cream sundae. Soy sauce almost always contains wheat and flour is used to thicken all manner of sauces. Chicken nuggets are covered in breading, of course, but even french fries can lead to crippling stomach pain if cooked in the same fryer as breaded items.
It became clear that our whole life would have to change.
Tacos and enchiladas from the taqueria were no longer safe — there was too much chance of cross contamination. Chinese restaurants — another favorite — were right out due to the prevalence of soy sauce. In fact, eating out, something we had enjoyed regularly, became a major challenge, requiring planning and research. Our pocketbook took a hit as well as restaurants that take adequate precautions to prevent cross contamination tend to be far more expensive. Meals for the five of us jumped from $40-50 to $100 and up.
And yet, we’re learning to cope. My mother-in-law has embraced the notion of gluten free cakes and cookies; my father-in-law even says he prefers them. I have greatly expanded the number of Asian dishes I make, using, of course, gluten free soy sauce. We’ve found a reasonable, gluten-free, rice-based pasta that everyone likes and which is only double the cost of traditional pasta. Sara has found new, gluten-free snacks to put in her lunch to replace the ones she liked before her diagnosis. And she has discovered — and fallen in love with — Trader Joe’s gluten free chocolate chip cookies. (Although, despite being gluten free, they have given her a stomach ache — but only because she ate an entire package in one sitting.)
Life goes on. We’re making changes and adjusting to a life less glutinous. We’re educating ourselves and others about the seriousness of celiac disease, its consequences, and what it takes to avoid it.
But then, I find myself standing in the grocery aisle, tears leaking down my cheeks as I look at a package of brownies she can’t enjoy or a box of snacks she can’t share with her friends. I think of the determined effort she takes to avoid gluten at parties instead of being carefree and casually enjoying whatever suits her fancy. I think of the family gatherings and school potlucks where, hopefully, others will at least mark items that contain gluten even if they don’t bother to make something she can enjoy. I think of her working so hard to stay healthy when she shouldn’t have to worry. I think of her being forced by her own body to grow up and take on responsibilities far too soon.
And my tears flow.