Knocking on wood here, I’ll start by saying I’m one of those “hardy” people who rarely gets sick, has never suffered a major injury, and can (and often will) eat just about anything. I’m an ethnic mutt, bestowed of a motley Heinz 57 genetic legacy from parents of Caribbean and Mediterranean descent, with a smattering of Eastern Europe sprinkled in for good measure. Much of my childhood was spent barefoot and outdoors, where I got splinters and ticks, stepped on nails and fell out of trees, and kept right on going.
It wasn’t until I had my third child – an adorable little boy with bafflingly fragile health – that I made the acquaintance of allergies; more specifically food sensitivities and intolerances. The first three years of his life, his father and I made good use of the fledgling Internet as we tried to narrow down just what his various symptoms were telling us. Finally, as near as we could figure, we concluded he had celiac disease or gluten intolerance. Our conclusion was more or less confirmed when we took wheat and related grains from his diet for two weeks, and all his symptoms, from GI distress to stuttering and developmental delays, seemed to disappear.
Our pediatrician congratulated us on our amateur diagnosis, charged us a $20 copay (it was 1994!) and sent us on our way. For the next few years, as we learned to live gluten free lives, I continued to hear similar stories from other families. Since there were few resources at the time for families dealing with food allergy and sensitivity issues, and I happened to be a writer, I figured it might be a fun and useful exercise to put one together. The Food Allergy Field Guide was published in 2000, and followed by a second, updated edition in 2006.
My son is 18 now. He’s a six foot tall, 115 lb. bean pole of a guy, good natured as ever, a budding programmer, finishing up his final year of high school, dual enrolled at a local college, active in his FIRST robotics team, learning to create apps, and constantly inventing the next great ithing. A couple of years ago, he finally got a blood test to determine whether he really had celiac disease. It came back negative, but he knows he has reactions if he accidentally consumes wheat or related grains, so he still avoids them. Maybe it’s a false negative. Maybe he has something else. Either way, he’s made the choice to avoid wheat because he feels better when he doesn’t eat it.
While he’s always battled vague health problems, they’ve never dominated his life. He bakes his own bread, can cook his own meals, shop for himself and knows how to order “safe” foods in restaurants. He is, as I had hoped he would become when I wrote the Food Allergy Field Guide a dozen years ago, a self-sufficient, self-reliant young man in control of his diet rather than controlled by it.
Over the years, the Food Allergy Field Guide became a dietary companion to many who sung its praises, on Amazon.com, in Good Reads, in support groups and doctors’ offices and a variety of reviews. So it was with some sadness that I learned it would no longer be carried by the original Colorado book publisher that had put the book in so many grateful hands. I could only ship so many to my home in Tampa, but wanted to make sure remaining copies got a second life. After a little internet browsing, I came upon Allergic Child, a wonderful site devoted to providing resources and networking to families of children with a variety of allergies.
It turns out Allergic Child is a sponsor of the upcoming Denver FAAN (Food Allergy and Anaphylaxis Network) Walk , on September 11, and I was able to donate 500 copies of the Food Allergy Field Guide for inclusion in Goodie bags for walkers. I’m delighted more families will have access to this user’s guide to food allergies and sensitivities, because even though we’ve come a long, long way in a dozen years, there are still pitfalls and misconceptions on which to be educated.
A recent Wall Street Journal article by Sandra Beasley, who identifies herself as a former “Allergy Girl,” suggests conversation is still needed on the topic of empowering youth, and educating others on the subject of food allergies. I actually agree with Ms. Beasley that the goal shouldn’t be “ to create a bubble around those of us with food allergies.” But I also believe there’s a reasonable middle ground between what she describes as the daily mission of “dodging death” and “living our lives”, for those with food allergies. It shouldn’t be an either/or proposition, where those with allergies throw caution to the winds and take their chances with illness, or worse, in order to live meaningful and enjoyable lives (which would be neither if they threw caution to the winds!). My son is a great example of young adult who’s not consumed by his dietary limitations (pun intended) but intelligently careful and living his life quite fully.
Families and youth educated and empowered in handling food sensitivities – from learning at an early age to articulate their needs, exercise self-discipline in avoiding the wrong foods, having the skill to read labels and menus, and the self-esteem to ask questions and politely demur questionable offerings – as well as being active advocates for healthy and safe foods in schools and public places, all go a long way towards keeping children out of bubbles in the first place. But labels should be clear, and schools and restaurants should be safe and accommodating. That’s the message of the Food Allergy Field Guide, my love note writ large for my son and other children and their families trying to reclaim their healthy birthrights.
I’m grateful to Allergic Child for helping put copies of the Food Allergy Field Guide in more families’ hands, where I hope it will bring comfort and reassurance, and help empower more children. Remaining copies are being given to Denver area hospitals, libraries, doctor’s offices and support groups. And I’ll be republishing the book in a 3rd edition sometime in the next year, so the Food Allergy Field Guide will continue to provide common sense sustenance for many years to come!