By Kristie Poggi – Master’s Candidate in Nutrition at Northeastern University
When my friends and colleagues at Kindrdfood asked me to write an article in honor of Food Allergy Awareness Week, I found myself thinking back to what life was like about 9 years ago: before my first-born was diagnosed with her peanut allergy, before my third-born arrived and ended up being allergic to 13 foods, and before my eldest later added 5 more items to her list of restrictions. It’s hard to recall what life was like before, because managing food allergies becomes a way of life. It eclipses everything prior.
Reminiscing about the days before Emily’s first reaction feels like a distant and simpler time. I didn’t think twice about grabbing her a snack, taking her to a restaurant, or attending a birthday party. I was a new mom, and although I had heard about food allergies being on the rise, I took it completely for granted that they wouldn’t be part of our future.
Reality hit hard one August day in 2007. Three-year-old Emily, 6-month-old Anna and I were at the beach when I handed Emily a couple of peanuts. She’d been begging me for a taste, and I remember thinking: Ugh. I’m tired of waiting. She’s not going to be allergic anyway. (The recommendation at that time was to hold off until the child is between 3-5 years old to introduce peanuts, but has since changed.) No alarm bells went off when she spit them out and complained that those “donuts” hurt her tongue. Within minutes she was crying, coughing, doubled over and grasping her stomach. My initial reaction was that she just needed a nap, but that theory quickly gave way to confusion and worry as she started to vomit while screaming that her throat and her mouth were burning. I had assumed an allergic reaction to food would always include hives (which she didn’t have), but then her entire nasal cavity blocked up completely. That’s when I realized what was happening. I reached for the Benadryl with shaking hands and thought: She’s allergic to peanuts. How can that be??? Sure enough, the antihistamine kicked in and within thirty minutes, she was fine. She was back to her usual happy, singing, 3-year-old self… but our lives were forever changed.
When we took Emily for testing, the doctors explained that she had experienced a severe reaction and would be at a higher risk of anaphylaxis if she were exposed to peanuts again. My husband and I had to make sure that would not happen. To keep her safe, avoiding peanuts became our most important job.
Three years later, we welcomed our son, Daniel, into our family. We joked about him being extra gassy and fussy because he was a boy, but the jokes got old quickly when his screaming got worse. Our first visit to Boston Children’s Hospital resulted in guidance from a wonderful gastroenterologist who helped me figure out that a wheat-free diet for me meant a much happier breastfeeding baby boy. But as soon as we introduced solid foods, his screaming started again. When he was 7-months-old, I tried eliminating dairy and soy to continue breastfeeding but, sadly, it didn’t help. Daniel ended up much happier when we switched to a prescription-level amino acid based formula at $55-a-can. At this point we were pretty sure he couldn’t tolerate wheat, dairy, soy or apple, and then the list continued to expand.
We were almost constantly in a “food trial” in order to advance Daniel’s diet and be sure he was getting the nutrition he needed to grow and thrive. I’d hold my breath each time we introduced something new, giving his body a chance to “decide” what it was going to do. Every diaper change made my heart pound as I lifted his onesie to reveal the skin on his milky-white baby tummy. His reactions to new foods would typically appear on day 3 or 4 of a 7-day trial, and usually took the form of a bright red rash. Seeing this external manifestation of an internal problem in my baby’s body was extraordinarily painful, stressful, and heartbreaking.
By 18-months, we knew that Daniel had non-IgE-mediated allergies to 13 individual foods. This type of food allergy is less common than the IgE-mediated variety (which is what our daughter and approximately 8% of American children have). Emily’s type of allergy results in a rapid response and may require an EpiPen for treatment. Daniel’s type, the non-IgE-mediated allergies, produce a slow-onset response, so he wouldn’t need to carry an EpiPen. We were relieved that Daniel’s allergies would not cause anaphylaxis, but they were so numerous that it became a huge challenge to figure out what to feed him.
I had to learn a lot, and quickly. I’d wander the aisles of grocery stores feeling totally overwhelmed. I was constantly in my kitchen making three separate dinners to accommodate everyone’s needs. Traveling anyplace involved extensive preparation, planning, and packing of safe food. Spontaneity was all but impossible.
Just as we started to get used to all this, the ground under our feet shifted yet again. Shortly before turning 10, Emily’s body decided to throw us a curve ball. After 6 years without a reaction (thanks to our collective diligence in avoiding peanuts), she developed additional allergies to soy protein, garbanzo beans, lentils, hazelnuts and quinoa. We ended up in a situation where a number of Daniel’s favorite foods – some of the few things he was actually able to eat - were suddenly dangerous for Emily. Navigating food became even harder.
At this point, my relationship with food labels intensified. Prior to Emily’s first reaction years before, I’d rarely taken the time to read the list of ingredients on the foods we bought. As soon as Emily reacted to peanuts, I had to read those lists like life depended on it because, suddenly, it did. Now, in order to manage both sets of allergies, we were reading the fine print for 18 different allergens.
Food allergies require a level of vigilance towards food that is essential and constant. You don’t get a day off, and you can’t let your guard down. The rise in food allergies has brought about an increase in awareness, but you must continue to be your children’s advocate as well as teach them how to advocate for themselves.
To the friends, family members, doctors and dietitians who have been part of our family’s food-allergy journey, I thank you from the bottom of my heart for the many ways you have made this situation easier for us to manage. Your support truly makes a difference. And to my children whose reality this is… I love being your mom. As hard as this has been, it has helped us to learn. I have you to thank for pointing me in the direction of a career in Nutrition and for my aspirations of becoming a Registered Dietitian. I hope that I can empower families like ours, who are struggling with these kinds of challenges, to be able to sit down together and enjoy their food without fear and frustration. I hope that I can help restore their confidence, so that they can go on enjoying one of life’s greatest pleasures… food!