The first time I heard the word “Celiac,” I was sitting in a crowded theater filled with preteen angst. We were a group of young moms pretending we weren’t as excited as we were to see Twilight on it’s opening night. Before the lights dimmed and the movie started, one mom in the group recounted her stressful day of taking her young son to several different doctors trying to find out why he couldn’t keep anything in his tummy. Celiac was one possible culprit. When she explained the disease and the subsequent gluten free diet, I cringed and told her I hoped that wasn’t the issue with her son. In my mind I breathed a sigh of relief and gratitude that I wasn’t dealing with the same thing.
Fast forward about six months. I was browsing through the Target dollar section (a favorite pastime) when my phone rang. It was a woman who heads up a medical research study that my son participates in. She was calling to tell me that my son’s last blood test came back positive for Celiac. Fast forward a few more months, add in many more blood tests and a biopsy of my son’s small intestine. There we sat at the yummiest donut shop on the coast of Mississippi. My phone rang again with the results. He has it. My child has Celiac. My three-year-old son has Celiac. I watched him eat his sweet, sticky, deliciously gluten-filled donut and my heart sank. The only option for dealing with Celiac is abiding by a strict gluten-free diet.
When we met with the dietitian, I was overwhelmed. She must have thought I was the worst mother in America when I asked, “Can’t he have a slice of pizza on special occasions or a cupcake at the birthday party?” She could have melted the flesh off my face with the look she gave me. In an even tone, spoken in a well-rehearsed manner, she replied, “No.” She asked me why I wouldn’t want to prevent him from being “glutenated” whenever possible, especially since he was only 3 years old and there were sure to be lots of accidental gluten situations. I wanted to crawl in a hole. “But, I just want him to be included!” was what I wanted to protest, but I kept my mouth shut.
To say the next months of our lives were a time of learning would be an understatement. Gluten is found in wheat, rye, barley and sometimes oats. I wiped my pantry clean and started over. I spent hours online, I talked to friends, I reached out to the Celiac Disease Center in Chicago (they offered a free “starter kit” of gluten-free samples). I remember walking the aisles of Whole Foods Market in search for gluten-free this and gluten-free that. Every time I came across a gluten-free version of something my son likes I would tear up. Right there in the pasta aisle in front of the mac and cheese. Tears of joy. I was so grateful that someone out there made macaroni and cheese that my son could eat.
Not long after the diagnosis, there came an afternoon that changed the game entirely. The postman knocked on our door with a package from my mom. There are few things more exciting for a three-year-old than a package from a grandparent. We tore it open with gusto. Inside was a book. “Cecil Celiac is Sleeping in Gabe’s Gut,” it stated on the front cover. The minute my mom heard the diagnosis she had gone to work writing a story that would help my son understand his new diet. She used pictures of him and of our family. She created characters, Cecil Celiac and Glover Gluten, that explained in three-year-old terms why my little boy could no longer eat Goldfish crackers.
The book came not a moment too soon. It didn’t take long for us to have our first run-in with the unfairness of the gluten free diet. It happened at preschool orientation. I had informed the school ahead of time about the special diet, but on our way out the door the teacher’s assistant sweetly handed my son his very own bag of Teddy Grahams to help him get excited about the upcoming school year. We walked out to the car where he asked if I could open them. I tried to explain that he couldn’t eat them or he would get sick. Not what he wanted to hear. Even now I get weepy thinking about that moment in the parking lot when we both stood there crying over a bag of Teddy Grahams. We went home and pulled out his special book. “Teddy Grahams have Glover Gluten in them. We don’t want him to get in your tummy!” Light bulb. He got it. Gluten was an enemy he could put a name and a face to. After that it became a game. His special diet was something he was proud to announce. Soon it was his friends who wanted the special cupcake. Soon they were in on the game too, making sure Glover Gluten wasn’t in the food.
It’s been almost 3 years since the diagnosis. I’m not sure it would be completely accurate to say it’s gotten easier, but it has become doable. We have found our favorite brands of gluten free foods. We’ve learned the most gluten free friendly restaurants. We’ve learned how to deal with birthday parties and snacks and school. We do a lot of planning ahead. There have been a few moments when we just want to sulk and marinate in the unfairness of not being able to eat what everyone else eats, but those moments are fewer and fewer. We often read and reread the story of Cecil Celiac. We are Glover Gluten fighters! We want to share the story with anyone else who is walking the aisles of Whole Foods and weeping over gluten free mac and cheese. My amazing mother has turned Cecil Celiac into a bona fide published character. She has produced an incredible illustrated book with color coded words to help young children understand their new diets. For us, the book was a miracle in a time of crisis.
If you or anyone you know might benefit from the adventures of Cecil Celiac and Glover Gluten, please visit www.cecilceliac.com or email us at firstname.lastname@example.org.