I’ve done a lot in the gluten-free world, but I didn’t aspire to do any of it. I was deeply involved in a successful career, and a mommy first and foremost. But today I’m an accidental author, researcher, advocate, and support group founder who was pushed into the deep end of the gluten-free pool and realized I needed to learn to swim. Fast.
Until 1991, we ate a fairly typical American diet. Oh, I tried to keep it nutritious (extra cheese on the spaghetti to add protein), and I was aware of the need to limit fat and calories (scratch the extra cheese), but we didn’t spend a lot of time worrying about what we ate or the long-term effects food might have on our bodies. We pretty much took eating for granted.
All of that changed in an instant when my first child, Tyler, was about nine months old and developed what seemed to me to be chronic diarrhea. The pediatrician chalked it up to the antibiotics Ty was taking for ear infections, and told me to call if it hadn’t cleared up in a few weeks. Three weeks later, I was back in the pediatrician’s office. “Yep, he still has diarrhea,” the doctor declared with confidence. “Yeah, I know. That’s why I’m here,” I mumbled with self-restraint worthy of the Nobel Peace Prize. “Give him foods that will plug him up like crackers and bread — and call me if it hasn’t cleared up in a few weeks.” Huh?!? That’s the best you can do? My Pampers bill is higher than your paycheck, my hands are raw from washing them every six minutes, and I do 8 loads of laundry a day because everything we own is covered in diarrhea, and you want me to “plug him up” and wait another three weeks? I don’t think so!
I waited. Not patiently (patience isn’t my greatest strength), but I waited. What choice did I have? Three weeks later, after another perfunctory examination of his ears, nose, and throat (did I lead you to believe this problem was above the waist, Doctor?!?), he made that “mmhhhmmm” noise that doctors make when they figure out the problem. Yay! We were finally going to get some answers! “Yep. He still has diarrhea.” All those years of medical school had really paid off. “Don’t worry about it. He’s not dehydrated, and he’s in the 75th percentile for height and weight. It’s nothing to be concerned about.” Gee, could the fact that I practically infuse him with liquids have anything to do with the fact that he’s not dehydrated? And does the fact that he started off in the 99th percentile and has dropped to the75th mean anything? Apparently not. I was instructed not to bring him back for diarrhea, because there was nothing to be concerned about. If I was going to insist on bringing him back, I’d be fired from that pediatric office. I guess they meant it.
Doctor number-two agreed with doctor number-one. After a quick look in the ears, nose, and throat, he declared that we had a healthy baby boy. “But what about the diarrhea?” I eeked. “Really, it’s nothing to worry about. He’s a healthy height and weight, he’s not dehydrated, and he looks fine to me,” he chirped as he raced to his next four-minute appointment. Oh, good. I’m glad he looks fine to you. I considered offering to give Doctor Do-Nothing a close look at the 22 diarrhea diapers a day that I was changing, but somehow managed to control myself.
In desperation, we changed doctors again, and — long story short — a quick look in the ears, nose, and throat turned up — you guessed it — nothing. By this time, Tyler’s belly had grown hugely distended, his arms and legs were wasted to skinny little limbs, his hiney had disappeared completely, and his personality had changed. He had transformed from a lively, energetic toddler to a listless, irritable, clingy, and quiet little boy. It had been nearly a year since the diarrhea first started, and we figured we were just neurotic first-time parents with a mellow kid who pooped a lot.
Eventually, we ended up in the hands of doctor number-four. By this time, “realizing” there was nothing wrong with Tyler, I thought nothing of dragging a lifeless baby with a Biafra belly into the pediatrician’s office for a routine visit. After looking in Tyler’s ears, nose, and throat, he laid Tyler down on his back and thumped on his belly like you might thump a honeydew melon to see if it’s ripe. “My goodness,” he said with that I’m-alarmed-but-I’m-a-doctor-and-don’t-want-to-freak-you-out-so– I’ll-talk-in-my-pediatrician-baby-talk-voice-that-will-surely-calm-you tone, “What’s going on with his belly? It’s very distended.” I couldn’t answer through the tears of relief.
After testing for cystic fibrosis, blood diseases, and cancer, we finally got the bittersweet diagnosis. “Your son has celiac disease.” Huh? Is that anything like the flu? Surely a few weeks of antibiotics will wipe it out. “He’ll need to be on a gluten-free diet for the rest of his life.”
I don’t have room here to give the details of the rest of the story, but you can read it in my books. Suffice it to say that the words “for the rest of his life” had a huge impact, and I realized it was time to step up to the plate and do some research and lifestyle and attitude adjustments to help ourselves — and others.
When we were told that Tyler would have to lead a gluten-free lifestyle, we had come to a fork in the road. At first, we were devastated, confused, frustrated, and grief-stricken. But we knew there was another path we could choose — a path that would have a more positive effect on Tyler’s life. As we learned to live with the diet and its ramifications, we worked hard to find a way to turn the adversity into a positive force in our lives. Today I realize that what we once interpreted as misfortune has actually been a huge blessing in our lives — and most importantly, Tyler agrees.