by Tara Taft
Although my husband called her “Smiley,” our happy baby, Erica, was clingy and cranky. For two months, we cleaned up after our 22-month-old as she vomited every day and watched in growing alarm as her tummy grew more and more distended, while her arm and leg muscles atrophied. Her pediatrician thought she had a virus, but she wasn’t getting any better. After four weeks, he referred us to Children’s Hospital Boston, where her gastrointestinal doctor suspected celiac disease.
A blood test and endoscopy confirmed it, and the diagnosis brought relief. The disease was causing Erica’s immune system to damage the villi in her small intestine, resulting in her body’s inability to absorb nutrients. The prescription was simple: All we had to do was eliminate gluten, a protein found in wheat, rye and barley, from her diet. But my husband, Sandy, and I were overwhelmed and at a loss. What could Erica eat? What would we eat? Giving up rye and barley would be easy, but not wheat. Our family ate a lot of pasta and pizza, crackers and pretzels. I thought Erica would never have an easy-bake oven, go out for pizza or bake chocolate chip cookies.
I threw away every food with wheat: flour, crackers, bread, cookies, soy sauce. I began giving away my favorite baking cookbooks and scrubbed every pan. I bought a new toaster and forbade my husband from putting wheat toast in it. The gluten-free tapioca bread I bought at the health food store tasted like cardboard, the specialty crackers crumbled and the wheatless cookies had an after-taste. Keeping gluten-tainted crumbs away from the gluten-free food was stressful, so for the first few months, the whole family ate gluten-free. It wasn’t easy, but it worked: As we rid wheat from her diet, Erica’s demeanor began to change and she was happier. Once again, she deserved the nickname Smiley.
Our lives had changed. We ate out less frequently and found it difficult to be spontaneous. We had to be assertive at restaurants, holiday gatherings, birthday parties and, later on, at schools. Not everyone was understanding and helpful. But then our lives changed again. Our nutritionist at Children’s introduced us to the hospital’s Celiac Support Group. Here, the parent of another patient said, “I’m sorry,” when I told her my daughter had been diagnosed. I realized she was recognizing my grief and my loss. A few months later, I sat at a support group meeting listening to a social worker describe the five stages of loss and explaining how people with celiac disease experience those stages. It was comforting to know that my feelings were not unusual. In fact, they were expected, especially the first year on the diet.
The group offered education, resources, tips, discussions about research, recipes and, best of all, friends for me and for my daughter who completely understand what it’s like to live gluten-free. I learned where to buy gluten-free products and which restaurants had gluten-free menus. I was introduced to list-servs and Web sites and was able to sample and buy gluten-free products at meetings. I discovered a whole new way of baking through their recipes and cooking demonstrations.
While these meetings continue to inform me, it’s the people who make the group so worthwhile. Erica and her gluten-free friends decorate cookies and dance at the annual holiday parties, swim and scramble for piñata candy at the summer picnic, and play games or participate in a scavenger hunt with other kids at the fall and spring meetings. At these functions, Erica knows that she can eat everything. They are the only events where she doesn’t feel different or left out.
I have made friends as well. Zelia gave me the name of her favorite cake mix; Susan gave me her favorite pumpkin muffin recipe; Mary listened to my concerns; Sue gave me a cupcake holder; Maria recommended a cookbook. As I became more comfortable with the diet and the disease, I began sharing what I’ve learned with newly diagnosed families. I hosted a gluten-free holiday cookie swap and made gluten-free ice cream sandwiches for a few of the kids we’d met. After six years of mostly taking, I decided it was my turn to give, so I joined the board.
I’m now co-chair of Children’s Celiac Support Group, and while I enjoy editing the newsletter and making sure the events run smoothly, I find connecting people and helping them discover that they’re not alone to be the most rewarding. When the moderator of our expert panel at our members’ forum asked how many people in the audience were new members, 75 percent raised their hands. I knew then that everything we’d done to make that meeting happen was worth it.
When Erica was diagnosed, my family entered a whole new world we didn’t know existed. People have helped us, and we’ve helped others. My son, Tommy (12), and Erica (now 10) look forward to arriving early at group events and helping to set up. Erica has written for the newsletter, Tommy has helped with childcare and Sandy has acted as moderator. With so much information available now over the Internet, I’m sure there are some people who don’t feel it’s necessary to join a support group, yet being part of one has had a tremendously positive impact on our lives. My daughter has learned to overcome adversity, and both my son and daughter have learned the rewards of helping people. Although living gluten-free can still have its challenges, being part of a support group has made all the difference.
A new study shows that gluten free camps are extremely helpful for kids with celiac disease.
For more information on celiac disease, watch these helpful videos.
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