The Butler’s Allergy Journey: John’s Food Allergies

World Allergy Week, hosted by the World Allergy Organization (WAO), began yesterday. It aims to raise awareness about allergic diseases and related disorders that are occurring with greater frequency around the world. In honor of this, I thought I would venture down memory lane over the next week and share my own family’s history with allergies and how it has changed our lives. 

It was Christmas Eve, and John was two months old. We were getting ready for the evening ahead of family gatherings and celebrating Christmas when John started to projectile vomit. Then I noticed blood in his diaper. I rushed him to the doctor and was told he had a cow’s milk protein allergy. I was exclusively breastfeeding at the time and asked the obvious question of whether I can just stop eating dairy while I feed him? The pediatrician, not ours because it was a holiday and a last-minute appointment, said “no!” and I was devastated. I had a lot of trouble breastfeeding my first child, and things were going so well with John. She gave me a special formula and sent me on my way. I stopped breastfeeding cold turkey (ouch!) and fed him formula, even though it was the last thing I wanted to do. This was the first day on our journey with food allergies.

When John was about four months old we started feeding him cereal. We noticed he would get rashes and diarrhea with rice cereal. Could he be allergic to rice? We tried oatmeal. His face swelled. He was definitely allergic to oats! We moved on to fruits and vegetables, trying each one three times before moving on to the next. He did ok with apples, bananas, carrots, and peas. Then we did butternut squash and he got a rash within a few hours. We tried zucchini and his eyes swelled shut. We actually took him to the doctor for that one because we had no idea what was happening, it was a delayed reaction, unlike all the other reactions he had thus far. He eventually developed rashes while eating kiwi, peaches, and raw pears. While we were trialing his foods, John also had severe reflux and we were working with a gastroenterologist to try to help him. One of the things she did was send us for blood work to check for food allergies. She told us to check off anything he reacted to so that it could be checked. We happened to see the pediatrician the same week and she suggested we check off egg, just to see if any was passing through the breastmilk (yes, I went to see her two days after Christmas and went dairy-free and back to breastfeeding). 

John came back highly allergic to eggs and it turns out, eggs are his most severe allergy. We had to go to an allergist immediately to get an epi-pen. Even though he has never ingested eggs, just being passed through the breastmilk was enough exposure. Since we’ve found out, he’s had reactions by being touched with egg, thankfully not anaphylaxis, so we no longer keep eggs in the house. He also came back positive for wheat and peanut, but since he’s never had reactions to them, we feed them to him regularly to make sure he doesn’t become sensitized to them. What we eventually figured out about his cereal was that he was not allergic to rice, but the corn that was in the rice cereal. 

Around the age of 18 months old, John tested negative for dairy so we proceeded with the baked dairy challenge and he passed. Finally, at two years old, I had the courage to let him try the straight milk challenge and he also passed that. He has been on dairy now for about 20 months and he’s doing great!

John’s current food allergies include eggs, oats, corn, zucchini, butternut squash, kiwi, peaches, melon, and pears. We have to carry around an epi-pen with us wherever we go and we’ve become experts on reading labels. I prepare almost all of his food at home, a lot from scratch, and we have to watch him like a hawk when we leave the house. We have some family members that don’t even believe in food allergies so we are always on edge around them. He started school at the age of two and we have to send in everything he needs to eat and drink and he needs to be separated from the other kids for meals. We almost never go out to eat and if we do we bring John’s food with us. Food allergies have changed every aspect of our lives and is an uphill battle. You can never let your guard down and just when you think you’ve got things under control, something changes.