Posted by Living Without contributor Sharon Wanunu at 12:22PM in blog -
May 22, 2013
My daughter Maya and I were diagnosed with celiac disease at the same time. This shared diagnosis connects us and divides us. It came about a year after my sister and her daughter received their diagnosis. I felt it was a gift--but that’s not how my daughter saw it.
I announced the good news: “Hooray! We have celiac disease just like Aunt Lisa and Cousin Ella. We get to eat gluten-free food just like them!”
“Hooray!” Maya chimed in. In her 4-year-old mind, she was thrilled at the prospect of consuming the special treats I’d been hoarding for her cousin. It didn’t take long, however, before she realized that the diagnosis also meant she couldn’t have Cheerios, McDonald’s or eat challah. The cookies from her favorite bakery and her great-grandmother’s rugelach were also off limits.
She was crushed.
I was thrilled. Finally, an answer. I’d been sick all my life. When I was Maya’s age, my mom had a thousand excuses for my poor eating habits: “She has a small stomach,” “She’s a picky eater,” “She has a stomach virus again.” As a kid, I was skinny as a rail and often bent over with stomach cramps. I stopped growing at 13. I had arthritis in every joint. By the age of 25, I had undergone four endoscopies. (How could the doctors have missed it?)
For me, going gluten free meant no more stomachaches. It also meant I was free to live life like everyone else. Suddenly, I could eat almost anything I wanted. I fell in love with food. Gluten-free fajitas, tamales, chocolate chip cookies, carrot cake with cream cheese frosting, pizza with roasted vegetables. So what if it didn’t taste like Pizza Hut? So what if I had to pay twice the price? I could eat all of it and not run to the bathroom halfway through. For me, going gluten free opened the door to the wonderful world of food. For Maya, that door closed.
“Why, Mommy? Why can’t I eat wheat?” Her questions pierced through my heart.
“But now you don’t have diarrhea. No more itchy rashes and no more stomachaches! Isn’t that great?”
Needless to say, she didn’t think so. She kept asking me why I was punishing her: “I didn’t do anything wrong. It’s not fair!” And then: “It’s okay, Mommy. I like diarrhea!”
The diagnosis has saved our lives. Because of it, Maya will never have to suffer in her childhood the way I did throughout mine. But how to convey this message to her?
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