This article originally appeared in the Winter 2004 edition of Celiac.com's Journal of Gluten-Sensitivity.
Celiac.com 10/04/2010 - When Tyler was diagnosed with celiac disease at the age of 18 months, I wanted desperately to talk to a kid––one who could talk––about what it’s like to have celiac disease. Do you feel jipped? Does it make you sad? Do you feel “different” from the other kids?!? I was heartbroken––grief-stricken––I had a long way to go before I would evolve into the cheerleader I hope I’ve become in helping people live––and love––the gluten-free lifestyle.
Oh, sure, friends and family told me “it would be okay,” the way friends and family do in tough situations. But I felt they were just placating me––after all, what did they know? They hadn’t even heard of celiac disease before I had explained the diagnosis. And to be honest, I didn’t care much at that time about what adults thought of the situation––I wanted desperately to hear from a kid: “Look at me––I turned out just fine!”
That was nearly 13 years ago, and there weren’t any kids who had celiac disease––none that I knew of, anyway. So we blazed our own trail, working hard to approach our unique challenges with optimism each and every step of the way.
Recently, I was reminded of the way I felt when Tyler was first diagnosed, when a woman with tears in her eyes approached me after one of my talks. “I know you talk about how we can all learn to live and love this lifestyle, and I appreciate your suggestions for raising happy, healthy, gluten-free kids––but,” she seemed shy and embarrassed to continue, looking at the floor as she asked, “would you mind if I talked directly to Tyler?”
But of course! How could I have forgotten? That need to talk to a child who had been through it was so compelling at first––and now Tyler could talk! Sure you can, was my automatic reply, knowing that my 14 (and-a-half) year-old-I-at-least-like-to-pretend-that-everything-you-do-annoys-me son would be less than thrilled to take the call.
I would love for Tyler to write an article telling you how celiac disease is no big deal in his life. He did so a few years ago for my first book, “Kids with Celiac Disease,” when he wrote Chapter One: “What it’s like to be a kid with celiac disease,” but that was when he was only ten. That was before he turned into a teenager and had to start pretending not to want to do the things we ask him to do.
The truth is that this has never been a big deal for Tyler. We gave him control of his diet from day one, which I believe is crucial. We have always maintained an optimistic, yet realistic approach, with Tyler and his non-celiac but oh-so-supportive sister Kelsie, her being our guiding light in terms of inspiration and positive attitude.
One day, a few months after he had been interviewed on a local TV station, Tyler was approached by a woman who attended one of our R.O.C.K. (Raising Our Celiac Kids) parties. I watched with curiosity and felt somewhat protective and guarded as this woman I didn’t know quickly approached him and took one of his hands in both of hers in what seemed to be an affectionate gesture. “Tyler, you have changed my life,” she said boldly. Then 13 years old, he did what most 13-year-old boys might do, and said nothing––shooting an anxious glance my way, looking for guidance, but I was as bewildered as him. She began to get tears in her eyes as she continued. “I’m 65 years old. Three months ago, I was as sick as I could be. I had been to dozens of doctors, and had a list of symptoms a mile long. Everyone thought I was crazy––I even had to quit my job, because I was so sick. I truly wanted to die. Then I saw you on TV talking about celiac disease. I insisted on being tested, and was positive for celiac disease. I’ve been gluten-free ever since, and feel absolutely wonderful.” With that, she gave him a bear hug, and he shot me a glance that I couldn’t read.
I’ve learned not to embarrass my kids (well, sometimes I do it intentionally, but that’s another story), so I said nothing, and Tyler went about his business. Several minutes later, Tyler approached me with a beaming smile. “Mom, now I know why you do this! It feels really good to help other people!”
He has since decided that he’s blessed to have celiac disease, because it has provided him with an opportunity to reach out and help others––an act that even at his young age he realizes is as satisfying for him as it is for those he helps. Quite a perspective for a teenage boy, if I may brag about him a little!
So while I would love for Tyler to write an article about this, those of you who have teenagers understand that it would be easier to teach my dog quantum physics than to have him sit down and write an article––so you’ll have to take my word for it. Thankfully, at this point, Tyler is a happy, healthy, gluten-free young man who thinks a lot more about baseball and his friends than he does about the restrictions of his diet. Other kids, teens, and young men and women I’ve met over the years have been equally optimistic and inspiring. So rest easy, parents––your kids will, in fact, be just fine…and I really do know this!