One mother's story: celiac disease

by Boston Children's Hospital staff on March 10, 2010

The Tafts have turned Erica's gluten-free diet into a family affair.

The Tafts have turned Erica's gluten-free diet into a family affair.

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.

The conversation continues on Facebook.
Click here to view comments and discussions related to this story on Facebook. Don’t forget to leave your thoughts below.

12 comments

  • Pingback: Learning About Gluten Free Cooking()

  • Lml

    where do you find the gluten free camps? We spend our summers in southern NH and have a nine year old who has been on the gluten free diet for a few years now.

  • Lml

    where do you find the gluten free camps? We spend our summers in southern NH and have a nine year old who has been on the gluten free diet for a few years now.

  • Kristin Cantu

    Hi Lml,

    Children’s has a Celiac Support Group that might have information about gluten free camps. Their phone number is 617-355-2127. I also found a gluten free camp taking place in Rhode Island in August. Here is the link.

    I hope this helps.

    - Kristin

  • Lisa Howard

    My daughter was dx at 14 months after a long history of FTT, a feeding tube placed and many, many, tests with no answers. She will be 11 tomorrow and has been on a whean and gluten free diet since her dx and had her g-tube removed at age 8. The support of the folks at Boston Children’s and the Children’s Floating Hospital helped our family deal with the ups and downs of the disease as well as educate us and provide us with resources. This is not an easy disease to live with as the initial diagnosis can be difficult in some cases as it was for us. Our rebound was very slow and she still struggles to gain weight. But thanks to BCH we are on the way to recovery.

  • Lisa Howard

    My daughter was dx at 14 months after a long history of FTT, a feeding tube placed and many, many, tests with no answers. She will be 11 tomorrow and has been on a whean and gluten free diet since her dx and had her g-tube removed at age 8. The support of the folks at Boston Children's and the Children's Floating Hospital helped our family deal with the ups and downs of the disease as well as educate us and provide us with resources. This is not an easy disease to live with as the initial diagnosis can be difficult in some cases as it was for us. Our rebound was very slow and she still struggles to gain weight. But thanks to BCH we are on the way to recovery.

  • kathleenreale

    Tara-

    Kudos to you, Erica and the rest of your family! Your article really hit home.

    I have a saying, “Once a Celiac, Never a Stranger”. Seeing someone in the grocery store with Van’s Waffles, Glutino Pretzels & Bob’s Red Mill GF Flour in their carts or a fellow restaurant patron beaming happily at a gluten-free menu just begs me to start-up a conversation!

    I have discovered a healthier and happier me; complete strangers that have become lifelong friends; the true appreciation of food, family and friend and most importantly, the sheer joy in sharing simple basic things (even hugs!)… all because of my diagnosis of celiac disease.

    Yup… life is good.

    Be Free!
    Kathleen
    Founder / BeFreeForMe.com

  • Anonymous

    Tara-

    Kudos to you, Erica and the rest of your family! Your article really hit home.

    I have a saying, “Once a Celiac, Never a Stranger”. Seeing someone in the grocery store with Van’s Waffles, Glutino Pretzels & Bob’s Red Mill GF Flour in their carts or a fellow restaurant patron beaming happily at a gluten-free menu just begs me to start-up a conversation!

    I have discovered a healthier and happier me; complete strangers that have become lifelong friends; the true appreciation of food, family and friend and most importantly, the sheer joy in sharing simple basic things (even hugs!)… all because of my diagnosis of celiac disease.

    Yup… life is good.

    Be Free!
    Kathleen
    Founder / BeFreeForMe.com

  • kathleenreale

    Tara-
    Kudos to you, Erica and the rest of your family! Your article really hit home.

    I have a saying, “Once a Celiac, Never a Stranger”. Seeing someone in the grocery store with Van’s Waffles, Glutino Pretzels & Bob’s Red Mill GF Flour in their carts or a fellow restaurant patron beaming at a gluten-free menu just begs me to start-up a conversation!

    I have discovered a healthier and happier me; complete strangers that have become lifelong friends; the true appreciation of food, family and friend and most importantly, the sheer joy in sharing simple basic things (even hugs!)… all because of my diagnosis of celiac disease.

    Yup… life is good.

    Be Free!
    Kathleen
    Founder / BeFreeForMe.com

  • Lisa Casserly

    Just wanted you to know that there is a new Gluten Free Bakery being built and opening this month in Randolph, MA called All Can Eat Foods This will be a huge welcome for all with Celiac!! Fresh baked breajs and cakes and homemade pasta!!!! a cafe as well :) This was a clip of an email I got when asking about the bakery:
    We at ALLCANEAT Foods Ltd. are working diligently to open in Spring 2010!

    Please frequent our web-site for up-dates as well as telling family and friends of our Gluten and Allergic-Free Retail and Manufacturing facility.

    ALLCANEAT Foods Ltd. will soon be providing healthy, delicious variety of products the entire family will enjoy eating together again!

    Warmest Regards,

    George E. Moufarrej
    CEO & Founder
    ALLCANEAT Foods, Ltd

  • Lisa Casserly

    Just wanted you to know that there is a new Gluten Free Bakery being built and opening this month in Randolph, MA called All Can Eat Foods This will be a huge welcome for all with Celiac!! Fresh baked breajs and cakes and homemade pasta!!!! a cafe as well :) This was a clip of an email I got when asking about the bakery:
    We at ALLCANEAT Foods Ltd. are working diligently to open in Spring 2010!

    Please frequent our web-site for up-dates as well as telling family and friends of our Gluten and Allergic-Free Retail and Manufacturing facility.

    ALLCANEAT Foods Ltd. will soon be providing healthy, delicious variety of products the entire family will enjoy eating together again!

    Warmest Regards,

    George E. Moufarrej
    CEO & Founder
    ALLCANEAT Foods, Ltd

  • http://www.injust10pages.com/blog/gluten_intolerance_blog Gluten Intolerance

    Celiac disease is a thief in the night. My wife didn’t know she has celiac disease until we went to the doctor asking what is wrong with her. Thank God we went to the doctor and adopted gluten-free diet.

Previous post:

Next post: