By Danna Van Noy
Those of you old enough to remember 1991 know that it was before the internet was invented. I mention that because it’s an important part of why I chose the path I did, and how I earned my credibility. I didn’t have the luxury of a quick Google search to figure out what to feed my kid or learn more about his condition. I had to earn my stripes in the med-school library at our local prestigious university. Furthermore, there were … wait a sec … let me count … oh that’s it ~ absolutely ZERO products on the shelves of a “regular” retail outlet that were labeled as being gluten-free. I was on my own.
After nearly a year of having a sick toddler and being told nothing was wrong with him – after being fired from one pediatric office and leaving two more because they weren’t hearing me – we finally ended up with Doctor #4 who was rightfully alarmed by Tyler’s persistent diarrhea, distended belly, and change in personality. Ty had gone from an energetic, playful, independent baby and-then-toddler to being clingy and anxious about being away from me – he had massive (and explosive) diarrhea that continued for months, and his belly grew distended from malnourishment as his arms and legs wasted away. Yet still doctors told us there was nothing wrong with this little boy.
Finally ~ a diagnosis
Finally, after nearly a year testing for cystic fibrosis, blood diseases, cancer, and a myriad of other conditions, we got the bittersweet diagnosis: “Your son has celiac disease.” Huh? Is that anything like an ear infection? Surely a week or two of antibiotics will wipe it out. But the doctor said, “He’ll need to be on a gluten-free diet for the rest of his life. OH … and take this seriously. Giving him even one molecule of gluten is like giving him rat poison.” Are you kidding me? The rest of his life? Rat poison? OK, I can handle this … “What’s gluten?” The doctor sympathetically responded, “I really don’t know exactly. Maybe the hospital dietician can help.” So we visited with the hospital dietician, whose first comment was, “Oh honey, do you mean glucose? Your son is diabetic?” “No – I mean gluten. He has celiac disease.” She knitted her eyebrows together and said, “Hmmm… I’ve never heard of that.”
She dug through her files of dietary restrictions, and eventually came up with a blue flyer of what was and wasn’t gluten-free. There were about 4,769 things listed that he could no longer eat – for life – and a literally about 10 things he could. (I quickly discovered some of what they said he could eat was actually NOT gluten-free – she was right – they knew nothing about it.)
Our first trip to the grocery store
I picked myself up emotionally as parents do, and headed to the grocery store. Afterall, I had a hungry toddler, and this was the beginning of the rest of our lives. When we got there, I pseudo-cheerfully asked him what he wanted for a snack. “CWACKAS,” he announced – to translate, that means “Crackers” in two-year-old talk. “Sure – no problem – let’s go check ‘em out,” I chirped. And then I began to read labels. I hope I don’t need to tell you the obvious: Not a single label ANYWHERE on the planet at that time labeled anything “gluten-free.” So it was an exercise in digging through products and labels, like you’d dig for the hidden treasure at an outlet store.
I read the labels on about 20 products, none of which appeared gluten-free to me – and even began to question my own intellect. “Is ‘flour’ actually made from wheat?” I asked myself in a desperate attempt to find a loophole in all of this. If it doesn’t say, “WHEAT flour,” is it okay? No – I knew I wasn’t going to get off that easily. I continued to read labels as Tyler because increasingly agitated about the delay, chanting, “CWACKAS, I just want CWACKAS.” After spending what seemed like hours – after naïvely asking the store personnel and even the manager where their gluten-free section was (which was met with a look as though I had just asked where the plutonium could be found), I stumbled upon Fritos. I re-read the label 14 times and sure enough, didn’t find any “rat poison” in there. Still terrified that I may be feeding him something akin to arsenic for his little system, I took a chance. I threw 7 bags of Fritos in my cart, and off we went to live the rest of our lives with an entirely new approach to eating.
Fritos were only the beginning of the rest of our lives. We had to decide whether or not the entire family should go gluten-free, had to deal with teachers and birthday parties at school, had to consider snacks at the sports games, his emotional wellbeing, and about 9,437 other things that would affect our lives forever.
It’s okay to feel lots of “icky” emotions
We were, admittedly, terrified, devastated, confused, frustrated, grief-stricken, and exhausted – did I mention terrified? Again, I remind you this was 1991. No internet. No gluten-free products. No books. No professionals from whom we could seek help. We had come to a fork in the road. We had the choice of letting this define us and letting it control our lives. OR… WE could take control. We could immerse ourselves in crash courses on nutrition, child psychology, and dealing with circumstances that are for most people trivial, but for us were monumental. We chose to take the path that would have a positive effect on Tyler’s life.
I’m a big believer in dealing with adversity, and accepting that negative emotions are a part of getting through life. I don’t sweep things under the rug, and feel it’s important to face the feelings that make us want to run. But I also think it’s important to get whatever help you need, and then pull yourself together. I firmly believe in the idea of Deal with it … don’t dwell on it.
For me it was cathartic to write, to reach out to the community and food manufacturers and retailers, and to help as many others as I could. As we learned to live with the diet and its ramifications, we were able to turn the adversity around. It didn’t take long to realize that what we once perceived to be misfortune has actually been a huge positive force in our lives. And most importantly, Tyler agrees.