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Going Gluten-FreeMay 22, 2013

Generation Gap

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?

 

 

Comments (2)

Sharon; include Maya in shopping trips, even at 4 she can be involved. I don't know where you live, but I hope you can find a good store that has gluten-free sections and organic sections of fruits and veggies, then standing in front of it ask her to point to the selections she wants as well as what you want...sort of a 'which ones do we want today?' game. It is a long learning curve. I am almost 80 and grew up with tummy aches all the time. I am also lactose intolerant - hard for a family where my Dad was in the dairy business! In addition I have several other food sensitivities that make it much harder. I was diagnosed with gluten intolerance about 10 years ago so I have had to learn a lot of new stuff. You might have Maya draw pictures of her favorite foods, or cut them out of a magazine, (like "Living Without") then take the pictures to the store and match them up. Over the years I have tried many GF packaged foods, and a lot of them ended up in the landfill, so it is trial and error. I am not a paid representative of any company, but I have found for me, the UDI brand of bakery goods is the best, and the recipes from Living Without are very good. My friends are very understanding when I am invited out with them and bring some of my own foods in a cute insulated carrying bag. I've not had any restaurant complain that I couldn't do so as I will order iced tea, etc. to drink from their menu. Being a retired nursing professor I am all about education and that is the key to successful eating/shopping. READ labels and don't be afraid to ask "What is in that?" When in doubt phone the customer service line that is on all packed/canned foods. They are very helpful and don't want any of their customers getting sick. I am glad to share my email with you for any other questions you might have: 4dcowens@sbcglobal.net. Good luck to you both. Donna

Posted by: Donna O | May 23, 2013 3:25 PM    Report this comment

Tell Maya that you aren't punishing her. You have to join right along with her. She should be estatic that she wasn't in my shoes. I am 70 and was born with celiac. I really didn't have much to eat. They didn't know alot about celiac then. Please tell her to keep her diet. Don't break it. "you don't need to tell her this part - I went off my diet for over 30 years. I thought that I had outgrown my Celiac. You don't out grow it. You will be on your diet for the rest of your life. Be thankful that thereare so many foods available to you today. Your really don't have to suffer. True you can't eat glutens like your friends, but such is life. Try and enjoy every day that you do have what to eat. I find new thinks every day. Be well and have fun.

Posted by: Neil B | May 23, 2013 2:11 PM    Report this comment

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