Food Allergies Sometimes End in Tragedy
In the past week alone, I've seen three stories about food allergies causing a life-threatening reaction. Three. And those are just the ones I've picked up on via social media. Two of those stories had happy endings, and sadly, one did not. I cannot help but look at Joanna's beautiful eyes and sweet smile and imagine the grief her family is experiencing in the wake of her tragic death. In this moment, I also cannot help but think about my own child's vulnerability as it pertains to food allergies.
Clearly I'm not privy to the details of each situation, but based on what has been shared publicly, here are my observations:
Eating out in restaurants can present a risk. Two of these stories involved food with butter being served to people with dairy allergies, resulting in epinephrine administration and emergency services being called. Don't get me wrong...we eat out, but in a careful, calculated way. Sometimes I call ahead and talk to the general manager. I ALWAYS ask for the manager and review my child's food allergies with them. I have a laminated card I can hand to them which lists his allergens and also has a reminder about shared surfaces, utensils, and equipment. If I have any doubts or a bad feeling in my gut, we leave. It's certainly not always convenient...and hasn't happened often, but I've done it. I'm certain that both of the families involved here ALSO made solid attempts to ensure the safety of their loved ones. But not all people with food allergies know the right steps to take...and even when they do, the system often fails. In addition to education for restaurants and staff, we need broader education about food allergies and their potential severity so the gravity is understood by all.
Food labeling in this country is problematic. Top eight allergens must be disclosed, but statements that say "made on shared equipment" or "made in a shared facility" are optional. My son's cashew and pistachio allergies are off the chart, meaning he has IgE scores over 100 on a scale of 0-100. The likelihood of him reacting severely to either of those allergens is very high - so high, in fact, that our allergists have said he cannot eat items made on shared equipment (or perhaps in a shared facility depending on the "reliability" of the manufacturer and their protocols and procedures). I've got a LONG list of companies I've called over the past five years asking about manufacturing. But sometimes even I become complacent. We've eaten the same spaghetti sauce for years. The ingredients are simple. I thought to myself, "What are the odds that it's made on shared equipment with his allergens?" I happened to call the manufacturer for something else questionable recently. To my surprise the spaghetti sauce is made on shared equipment with cashews! I sat here stunned. Clearly they have cleaned the equipment well...and we have dodged a bullet. But it's a risk I'm now aware of that I'll no longer take...and we've switched to a different brand.
I recently wrote a blog about the false sense of security people have in epinephrine. (Read it here!) Many people don't take adequate precautions because they believe epinephrine will save them. And hopefully it will.
There are a lot of misconceptions about food allergies (read my blog about the most common ones here). We live in an age of people opting for all types of special diets (e.g., paleo, gluten-free, vegan, low-carb, dairy-free) for all kinds of reasons (e.g., health, weight loss, food intolerances). Unfortunately, for people with true food allergies, this dilutes the message. I'm not saying that those special diets aren't valid or important; rather that people have a difficult time differentiating between a food preference and something that can kill someone.
My voice matters. I have a background in healthcare and advocacy. I used to advocate for other fragile populations. I never thought I'd be advocating for my own child - but I am. And now it's become my purpose to make a difference in the lives of others. Sometimes my writing is inspired by something I see, think, or hear. Today it was another senseless tragedy in the food allergy community. I hope the time I took to write this today helps save a life.