Our Food Allergy Story
Em
Even before my Hubs and I were married, we were huge, adventurous foodies. We loved checking out the newest restaurants opening up in our city, trendy brunch spots, and all the latest food trends. I did like to cook occasionally, but I was definitely more comfortable with the precision that usually comes with baking. Not a single food allergy or intolerance existed in our lives. When my daughter, Em, was born, we couldn’t wait for her to join us in our food experiences. I visualized taking her to my favorite cafes around the city; sharing almond croissants and caramel chocolate tarts.
At 15 months old, however, she ate scrambled eggs my mother had made for her using peanut oil. She had her first anaphylactic reaction. Hives, vomiting, and losing consciousness. Turns out, she was severely allergic to peanuts, and also all tree nuts, all fish and dogs. This explained her persistent eczema that covered most of her body because we had our beloved dog at the time. Life changed drastically for us. We had to find a new home for our dog and it became too risky to eat at restaurants where half the time our server seemed indifferent or unconcerned when I mentioned food allergies. Many mild reactions and incidences followed. When she was about 18 months old, she and I shared a bagel at home that I later found out had a “May contain nuts” statement on it. I had to use her epi-pen on her that day and she was hospitalized. I felt like a terrible, inexperienced allergy parent and was overwhelmed. After that and other reactions to premade broth and baking soda of all things, both cross-contaminated with tree nuts, my label reading became intensely diligent and thorough. The constant anxiety, the fear and especially the lack of support and understanding of food allergies from our families and close friends made it all especially stressful. Fortunately, we adjusted quickly and started to manage our meals better. I baked a lot more so we wouldn’t have to worry about cross-contamination at bakeries. I persistently contacted companies and always followed up with phone calls to get answers. I became familiar with safe brands, what foods had nuts in it and learned what unfamiliar ingredient names were, such as lupine, that were a risk. I made sure she didn’t eat the daycare’s lunch on Fridays, since it was usually fish. I thought, we’re officially allergy parents now and we got this.
Cee
Little did we know what was yet to come. My son, Cee, was born when Em turned two. We were exhilarated; loving parenthood and expanding our family.
Shortly after Cee started solids at 8 months old, I made the homemade nut-free crusty bread I had been making for Em. At this point, I learned to make a lot of food at home from scratch to keep it nut free and safe. I felt like an experienced food allergy mom and thought I knew what I was doing—that if Cee had any nut allergies, he’d be safe and we wouldn’t make the same mistake twice. I didn’t even think about any of the other common Top 8 allergies at the time. After eating a piece of bread, Cee had his first of many severe anaphylactic reactions. He developed giant, lumpy hives everywhere almost immediately and his entire body was lobster red. There was so much vomiting and he couldn’t breath. He turned blue around his eyes and mouth. I used my daughter’s epinephrine on him and he was breathing and crying within 30 seconds. From that terrifying and heartbreaking night, we found out that he is anaphylactic allergic to wheat, gluten (they are different proteins), eggs, milk, peanuts, tree nuts, fish, shellfish and sesame seeds. We later found out he was also allergic to all legumes (chickpeas, beans, etc), jackfruit and pumpkin seeds. He is so allergic, that he has contact reactions. So if anyone eating pizza, or snacking on goldfish crackers touches him, he’ll develop rashes or hives on his skin almost immediately. My mother stopped putting dairy creamer in her coffee because after kissing him, his face broke out in hives. Milk and wheat especially are present everywhere. I thought “What kind of life will he have? Can he go to school? Make friends? How will I keep him safe and alive?” I didn’t let him eat blueberries for months after that night because the blue stain around his mouth was triggering for me.
Six hospitalizations later due food allergies before the age of 5, including a few nights in the ICU because of accidentally consuming cow’s milk, I have to say that as parents, it has been a painful and tumultuous journey. In addition, both him and his sister developed asthma at the ages of 3 and 5. Cee had two other hospitalizations due to asthma attacks. Living this allergy and asthma life as a family is a daily challenge and struggle and can be incredibly isolating since no one but other allergy families can fully understand what this is like. He has never eaten anything outside of what I make him in my kitchen. Holidays and birthday parties were incredibly challenging where pizza, cake and pretty much all his life-threatening allergies are ever present. Most of the time, we just didn’t go and politely declined every invitation. Until very recently, we had stopped joining our families for holiday gatherings every year. There were many dark days where my hope faltered and both physical and emotional exhaustion took over.
But we kept pushing forward, worked hard to keep our head above water and stay positive, taking it one day at a time. We surrounded ourselves with wonderful, supportive and empathetic people. Over time, we adjusted to what I say “our normal” looks like and we are managing. Despite all of these limitations and challenges, Em and Cee are thriving. Less frequent are the moments you see me leaping across a room to knock a muffin or cookie out of Cee’s toddler hands or screaming “NO!” or “wait!!” when a poor sweet kid was just trying to share their snack with Em or Cee in a park. As long as we are diligent and careful, they are living their best lives! Cee has a full-time paraprofessional who shadows him at school, keeping him safe and wiping down anything before he touches it. I am so grateful and feel blessed for the community that we live in because I know it’s not like this everywhere.
My children will always struggle with inclusivity and they have to deal with more than the average kid. But ironically, this is exactly what fuels this intense drive I’ve developed from all of this. This is the bright light that I’ve found that has kept us going and I know it will continue to do so. I’ve become extremely passionate about creating amazing and delicious allergy-free food and treats, so they almost never feel like they’re missing out.
When I started, I didn’t know what sorghum, coconut butter, or aquafaba was (I didn’t even know how to pronounce that last one). I didn’t know that you can use potato puree to make gluten-free and dairy-free pita bread that tastes and eats like regular wheat pita bread. I relied heavily on other food blogs and online videos to get through those emotional and difficult early days. Just hearing or reading about another person or parent somewhere in the world going through the exact same thing was so comforting. Those resources were my lifeline and on the most challenging days, kept me grounded and hopeful. Now I want to be able to help others going through the same thing or similar. As a family, we’ve come a long way and the Hubs and I still have a deep love of food. Our food adventures with the kids are the absolute opposite of what I imagined, but we are definitely on an amazingly unique food adventure nonetheless. Whatever your story or situation, there is incredible joy in food, even free from foods. Thanks for listening. Hugs.