MaxThe Voices of Celiac Disease

“Just before his third birthday, Max had dropped so much weight that he was back to wearing his one-year-old clothes.”

A photo of Max smiling.

As Max is a minor, his story is told by his mother, Brooke.

Describe your child’s life prior to diagnosis:

Max’s digestive struggles began when he was a toddler. He vomited often and slept little. At some point, he started self-selecting food, realizing that fruit and the gluten-free pretzels I had bought on a whim never made him sick. He essentially subsided on that diet for months. His once chubby cheeks grew slim and narrow. Just before his third birthday, Max had dropped so much weight that he was back to wearing his one-year-old clothes.

How did you come to know (or suspect) that your child had celiac disease or non-celiac gluten sensitivity?

Max’s growth chart was dipping. He was losing weight as a toddler. He became terrified to eat anything but fruit because he knew fruit wouldn’t make him sick.

My heart broke each time he cried out of hunger or writhed with stomach pain. I knew that he was ailing from something serious and suspected it was celiac disease. A lot of late-night internet searches and the extensive food diary I was keeping pointed to gluten as the culprit. But my husband and I wanted concrete answers. Our pediatrician had referred us to a handful of specialists, but none of the doctors were accepting new patients for months. We felt like we were dangling in a medical purgatory.

The doctors had suggested we keep gluten in Max’s system so that he would be primed for tests in case an appointment suddenly became available. But there was only so much Max’s little body could take and only so much of his struggling I could endure. So, my husband and I made the executive decision to take Max off gluten completely.

Within four weeks, Max gained over four pounds. He started sleeping through the night. He laughed more and cried less. One evening when I tucked him into bed, he looked up at me with his big brown eyes and said, “I feel so good now, mommy. My tummy doesn’t hurt anymore.” My body melted in relief as I hugged him tight. We hadn’t received a medical diagnosis, but my momma bear intuition seemed to be leading us to a better place.

A week or so after that night, I received notice that an appointment had become available with a highly regarded gastroenterologist. I held Max’s soft toddler hand in the hospital elevator and squeezed it tight. His fuller cheeks spread into a smile. Deep in my gut I felt like everything was going to be ok. Medical guidance and a diagnosis were at our fingertips.

As we sat across from the doctor, Max flipped through his truck picture book and I detailed his ailments. The doctor agreed that Max had all the symptoms of celiac disease, but to diagnose him accurately she would need to perform tests with gluten in his bloodstream. In fact, he would need to eat gluten for the next month and then undergo blood work and an endoscopy.

Tears brimmed in my eyes at the thought of exposing Max to gluten and torturing his toddler body. As much as I wanted an official diagnosis, no part of me wanted to see him suffer again.

I glanced at the photo behind the doctor of her holding her daughter and inhaled deeply. “What would you do?” I asked. “Mother to mother—if this was your daughter, what would you do?”

She leaned toward me and said, “I would assume he has celiac disease and wait to test him until he can understand the diagnosis.” She also suggested waiting until Max turned seven—an age when he would be making more food choices on his own—and empower him with the decision to get tested.

Describe your experience with living with celiac disease or non-celiac gluten sensitivity:

Max is now a few months shy of seven and it recently dawned on me that I had done little to empower him. In fact, I had been in full control mode the last three years. I converted our kitchen into a gluten-free zone, much to the dismay of my older son who still pines for the doughy everything bagels we used to toast. I pack Max his own food for parties. At restaurants, I scour menus in advance for gluten-free options and then confirm with the servers that the dish hasn’t had cross-contact with any gluten.

But as Max matures, I realize that I can’t continue to hover above him like a helicopter mom repelling any morsel of gluten that comes his way. That behavior doesn’t benefit either of us in the long run, especially as Max becomes more independent.

The best thing I can do for Max is teach him how to make the best decisions for his health; how to read food labels; which questions to ask restaurants or other parents about their food ingredients; what the repercussions are to eating the smallest bite of gluten—Max does not just get sick, he also damages his small intestine.

With the holidays upon us, Max and I are having these conversations more often. The holidays can breed anxiety. Stressful family dynamics, time-consuming shopping, uncomfortably high credit card bills—the list goes on.

While my family has dealt with its fair share of holiday hurdles, there’s nothing that unsettles me more than holiday cookies. Those icing-covered, candy-topped delights torture us each Christmas season, because Max becomes violently ill when he eats gluten. One bite of a gluten-filled dessert will cause his stomach to knot in pain for weeks.

Still, he stares longingly at the cookie trays when we walk through the grocery store or attend a holiday party. He will ask me if any of them are gluten-free. I almost always reply “no,” and then absorb a pang of sadness as I watch his face fall. I’ll try to cheer him up with whatever certified gluten-free treat I have packed in my purse, but nothing is as exciting as a beautifully decorated holiday sugar cookie.

But saying “no” to cookies, pies, cakes, and my sister’s famous cherry tarts is Max’s only option in order to stay healthy. It has not been easy for Max to comprehend or for me to explain. Still, it’s the gluten-free reality that we are both learning to navigate.

I know how hard it is for him to turn down those tempting desserts. He has told me so, but he also has puffed his chest and expressed how proud he is of himself for making the right choices. That makes my heart swell too.

Describe your experience with living with celiac disease or NCGS:

Max is not ready to consume gluten so he can undergo testing to confirm he has celiac disease. He said he is too scared. I do not blame him. Max may never be ready to try gluten again. But he is ready to make more decisions about what and how he eats. He is learning how to navigate his gluten-free world and advocate for his health on his own, and that is the greatest gift he can give himself this holiday season and always.