“Is that certified gluten free? Was that made in a dedicated gluten free facility? Do you have a dedicated fryer? Do you have a separate cook space?”
These are questions I ask every day. Every food item I pick up, everything I order, has these questions and more attached to it. But I don’t have Celiac Disease. My 11-year-old daughter does.
My daughter, Sophie, was diagnosed with Celiac Disease a year and a half ago.
She was having gastrointestinal symptoms, frequent nausea, and stomach pain that started out of nowhere. The doctor was grasping at straws trying to explain the symptoms. “She’s stressed. She’s constipated. She’s stressed and constipated.” Then he finally did blood work. BINGO. Once she was diagnosed, I started reading about Celiac Disease trying to learn all I could, because before this I had no idea what it even was. I learned that Sophie had other symptoms before the GI symptoms that I didn’t know had anything to do with Celiac. She was growing at a slow rate, she wasn’t gaining weight very rapidly, she had terrible, unexplained tooth decay at age 4 that resulted in 8 crowns and 2 root canals (the dentist blamed me—thanks a lot), she had frequent night terrors, she laid down right after eating but never complained of stomach pain, she had frequent headaches, she was always tired, she had excema. No doctor ever looked at any of these things and put two and two together. But luckily, once the almost constant nausea took hold, I didn’t back down until I had an answer.
So now we live a very different life than we did just a year and a half ago.
My husband and I, along with Sophie and Sophie’s two brothers Sam and Jack, now live in a gluten free household. We tried to have both gluten and gluten free foods in the house, but the stress of trying to prevent the cross contamination was enough to give me gray hair in 30 days flat. I realized the only way to keep her safe and keep me sane was to go all gluten free. There are things we all miss—flour tortillas and regular bread mostly—but for the most part we have figured it out and we eat very well. I love to cook, and my favorite thing to do has always been to scour cookbooks and cooking magazines for new recipes. That love of mine has served us very well. It is not drudgery for me to seek out and try four new recipes a week. My family is all game for trying new things. And Sophie’s brothers, being the dear hearts that they are, have accepted our gluten free way of life with smiles on their faces, never dreaming of complaining or turning their noses up at anything, at least not within earshot of their sister. My youngest, Jack, actually prefers many gluten free foods now, saying he likes my grilled cheese sandwiches and cupcakes better than their “regular” counterparts he can find at any restaurant or birthday party.
But having one child with Celiac and two without isn’t a piece of cake (no pun intended). There are so many instances where one of my boys innocently says, “Can we go out for ice cream?” “Hey, can we stop at that bakery and get dessert?” “Can I get fried dough?” (at the gazillion festivals in Rochester). It is HARD. It is hard to look at my sweet daughter, knowing she wants all of those things too. It is hard to say no to my well-meaning boys, who are simply asking to do the fun, spontaneous things we’ve always done. There’s no other way to say it. It’s just plain hard. And I look forward to sharing these honest, real-life experiences with you in future posts.
From the time Sophie was diagnosed, I knew I had to turn this into something. One cannot do all this research and gain all this knowledge, and not share it. When either you or your loved one is given this diagnosis, you are thrown into another world. You have to learn a lifetime of information in a few days, because that diet needs to change pronto to begin the healing process. It’s a full time job to find things that are safe AND delicious, to make dinners that satisfy everyone, to pack safe, yummy lunches, to get those birthday cupcakes just right so that all the kids say,
“These are better than regular cupcakes!” (yes, that actually happened).
So I am thrilled to share my perspective, humor and real life experiences with all of you as “The Celiac Mom”. (I’ll throw in a few recipes, too!) Until next time…happy gluten free eating…
Doris Diehl is CEO of Diehl Enterprises. Her duties include executive chef, pastry chef, taxi driver, housekeeper, kisser of boo boos, popsicle distributor, counselor, and champion Uno player. She is also the Content Coordinator and writer for Allens Creek Living Magazine. She lives in Pittsford with her husband and three children.