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From Gluten-Free Isolation to Allergen-Free Involvement

3/14/2012

This is the story of how, in a world of wheat, I helped my daughter find her own, delicious gluten-free path.

As an infant, my daughter Maya was just like any other baby. She would vomit every meal, scream and cry with her back arched as if she were in pain and never, ever, ever slept. What? Do you mean to tell me that these aren’t the typical behaviors of babies? No kidding. And how come, when it’s so obvious to us, one doctor, not one, could figure out what was wrong?

Fast forward a year and 9 months of severe sleep deprivation, countless doctors, and useless blood tests. My sister had told me about a friend who took her son off dairy products to see if it would help him sleep through the night, so I thought I’d give it a try. (Heck, I was just hoping for more than 3 hours!) Eureka! It was like magic. She slept 5 hours the first night, 6 the next and then 7, 8. It was a miracle! It was a godsend. I gradually came out from under my rock. For the first time in almost 2 years I actually smiled and laughed. Did I forget to mention the postpartum depression? Yes, after a difficult labor and nursing a child for nearly two years with almost no sleep at all, a woman will most certainly not be a happy camper!

Maya was thriving, she was happy, she walked and talked and yet… she still had diarrhea every day. Can you imagine diarrhea every day of your life? And rashes. All over her body. A rash around her mouth after she ate, rashes on her arms, her neck, her legs. ‘Itchy spots’ we called them. Why? We just couldn’t figure it out. More blood tests. More doctor visits. The funniest sounding diagnosis we got was “Chicken Skin.” She giggled every time she said it.

Finally, at the age of 31, my sister was diagnosed with celiac disease. She diagnosed herself by pleading with her hematologist to do the blood work because her gastroenterologist refused. She read about celiac online and matched up her symptoms: 12 large pre-cancerous polyps in her colon, severe anemia, hair loss, weight loss, lethargy, arthritis, not to mention stomachaches, bloating, etc. It was then recommended to have all immediate family members tested.

First her 4 ½ year-old daughter’s results came back positive, and then mine. “Shut up!” was her response when I called her on the phone to tell her.  “Who else?” was all we kept thinking.

“Mommy, can I eat that?”

I didn’t know what was more painful: for me to have to answer this question while watching the look on her face, or for her to hear the answer, each time the same thing. “No, sorry sweetheart. It isn’t gluten-free.

It used to be that Maya could eat the snacks and pizza at parties, with dessert being the big challenge. After her celiac diagnosis, we quickly realized that living lactose-free was really actually a piece of cake (pun intended) compared to the gluten-free lifestyle.

All of a sudden, she began to feel isolated from everything and everyone - all because of the food she couldn’t eat or touch. "Sorry I don't have any pretzels. Don’t touch the table. Go wash your hands because you played with Play-Doh. Hurry. Maya, go grab some chips before anyone else does."  And the typical birthday party one, "But Maya, your gluten-free cupcake looks just like hers!"

And the worst part of it was the tears. She would cry all the time: cry over the cookies that Michael’s mom brought into school that day, the Goldfish crackers that she missed so much, and the worst was over the fact that her baby sister got to eat Cheerios. (After that incident I got rid of them and made the entire kitchen gluten-free. From then on, my husband would have to eat his bagels at my family's bagel store. Yes, my family owns a bagel store - three of them to be exact. A bit ironic don't you think? What, with four celiacs in the family?)

Birthday parties, play dates, and snack time at school all became hurtful experiences for her. She felt confused, sad, angry, and most of all very lonely. Even the fanciest gluten-free cupcake meant nothing to her if she was going to be the only one eating it!

The isolated feelings she was experiencing from not getting to eat what the other kids were having pushed her towards rejecting food altogether. It was a chore to get her to come to the dinner table. She squirmed and contorted her body at school during snack time and she wanted to stop going to birthday parties altogether.

It drove me insane! All I could think about was how I could help her feel special and part of the group even though her food wasn’t. I wanted to validate her feelings, but at the same time teach her that having celiac didn’t mean that she shouldn't try to enjoy the food she could eat. I showed her how her new gluten-free bread could be made into beautiful butterfly sandwiches and after school we would play dominoes with the funky new crackers.

I started coming into her classroom and doing cooking activities with the kids just so she could experience the simple joy of eating the same as everyone else. The sparkle in her eyes told me how much she enjoyed sharing that experience with them. If only I could make that happen more often.

One magical day at Whole Foods, my little one, Emma, tried handing her cookie to a little boy in the next shopping cart. The mother apologized and politely said, "No thank you. He can't have that because he's allergic to gluten." Coincidence or destiny? We exchanged phone numbers immediately.

And then I dared to dream.

Imagine if we could go to a playgroup where she and other kids with food allergies could actually go up to the snack table and eat anything there that they wanted? Imagine? I called up the head of the synagogue where Maya went to preschool and proposed my idea and asked if she would let us use the play space there to hold our meetings. She gave me an enthusiastic "Yes!"

We made up flyers and invited the whole community. Food For Me: a playgroup for families and friends of kids with food allergies, where kids can play and celebrate their allergen-free food together!

From then on, Tuesdays became all about shopping for exciting new allergy-friendly snacks that we could have at our playgroup. I’ll never forget how as we were walking to the first playgroup meeting after school, she must have asked me three times if I was sure all of the food there would be gluten-free. I proudly said, "Yes, and egg, dairy, and nut-free as well to accommodate the other kids at school who have food allergies too. Because you see Maya, you’re really not the only one!"

And when we got there, for the first time, she believed me.

-Sharon W.

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