Although food allergy may not have been as common decades ago, there are many adults who have lived with their food allergies since childhood. This was in the era before epinephrine auto-injectors or enhanced ingredient labelling, and before there was allergy awareness in the foodservice and food manufacturing industries.
Both Melissa Margles and Jennifer Micheline Berzan, members of the Montreal Anaphylaxis Support Group, have navigated the world of food allergies since they were very young. They did so without a map, and without an advocacy organization to guide them. We had the opportunity to ask them some questions about their experiences growing up.
First, Melissa Margles tells us what it was like to live with multiple food allergies – and as the only child she knew with the condition.
Melissa
What are your allergies, and when were you diagnosed?
I am anaphylactic to peanuts, chickpeas, lentils, and peas (all legumes). I was diagnosed at three. My two older sisters let my mom sleep in one day and gave me peanut butter on toast for breakfast. I threw up, and the next time my mother gave it to me, I had the same reaction, so she took me to our doctor and he diagnosed me.
Have any of the food allergies you were diagnosed with as a child gone away?
None of my allergies have gone away.
What was it like growing up with food allergies?
I was the only child with this allergy. The only other kid with a medical issue was a boy with epilepsy. Food labelling wasn’t even a thought at the time, so it was a lot of trial and error. For example, I knew that the honey cake from the kosher bakery had peanuts in it. It certainly set me apart from my friends when it came to food at birthday parties, etc. I remember one time when I was in line at the cafeteria for a tuna sandwich. The person in front of me ordered a peanut butter and jelly sandwich. I asked the cafeteria worker to wipe the knife well (which I always did). She didn’t wipe it well enough, and it led to an allergic reaction on the sidewalk outside a shopping mall.
[Editor’s note: It’s important to use clean utensils (versus wiping a utensil), such as knives, when preparing food for individuals with food allergies.]
How and where did you learn to manage your allergies?
I learned very early on to be vigilant about what I ate. If I wasn’t sure, I didn’t eat it. I still shy away from dessert in restaurants. One millisecond of hesitation from a waiter in response to my question leads me to forgo dessert almost every time. I became a bit cavalier about it in adulthood, maybe because I was so tired of always asking questions and of just being different.
I did have a serious reaction when I was 21. I ate a friend’s homemade brownie that I was told didn’t have nuts in it but had peanut butter chips. I ended up in the ER at the Jewish General Hospital, being resuscitated, and watching my parents cry while the doctors were administering epinephrine and rapidly hovering around me. That changed it all for me. I am super careful now.
As an adult who has had food allergies since childhood, have changes like improved ingredient labelling and allergy awareness in society had an impact on your ability to manage your allergies?
The changes and improvements are huge! It’s funny because parents today will tell you that it’s not enough! But certainly, it has made my life so much easier. Now my questions are welcomed and not met with groans or eye rolls.
Next, we asked the same questions of Jennifer Micheline Berzan.
What are your allergies, and when were you diagnosed?
Peanuts, since I was two years old.
Have any of the food allergies you were diagnosed with as a child gone away? Which have remained?
My food allergy has not gone away. I also had chronic asthma as a child, and it improved during adolescence. Now it’s rare that I have an issue with asthma.
What was it like growing up with food allergies?
It was all I ever knew. My mother took precautions, but not to the extent of how people do today. Things are very different today than they were in the early ’80s when I was diagnosed. At the time there were fewer children with allergies. In my entire elementary school, there were only about a handful of kids with allergies. We knew each other well because we often had to sit with each other during lunch and recess to avoid being around the other kids eating peanut butter. As a child, epinephrine auto-injectors did not exist until I was eight years old. That’s when I started carrying one.
But to be completely honest, my entire understanding of allergies changed when a friend who also has a peanut allergy tragically passed away from an anaphylactic reaction caused by cross-contamination. That was a wake-up call as to how serious anaphylaxis is. I miss him, and not a day goes by when I don’t think about him. But I believe his tragedy brought forward a new sense of awareness around allergies. In today’s world, we are hyper-aware of the risk of allergies. In the ’80s, there were no “peanut-free” snacks, bakeries, or schools. I was always the kid with my own cupcake at parties, but that was my reality and I’m just grateful that I’m here to share my story.
How and where did you learn to manage your allergies?
From an early age, I knew to never share snacks at school and was encouraged to always ask before eating anything. As I mentioned previously, I started carrying an EpiPen® when I was eight years old. My school kept one, and my mom kept one in her purse. It wasn’t common for kids to carry their own at that time and the EpiPen had just been released to the mass-market. I was young, so my mother managed my allergy. She used to write an approximately six-page document out by hand for my school and camp on how to handle my asthma and allergies. As I became more independent, I began learning to manage my allergies on my own.
How have food allergies affected your life?
In a sense, my allergy partially defines me. I would estimate that 95% of people who know me on a social basis know I have an allergy. It’s part of who I am, and something I am comfortable discussing.
I’ve been dumped for having a peanut allergy. I’ve been bullied for having a peanut allergy. And I’ve been made fun of for the allergy. I have experienced it all. Some people don’t get it. I used to minimize my allergy when people didn’t get it, but now I try to educate people as much as I can. Whether it’s with a server at a restaurant or with another adult, I try to explain anaphylaxis and the risks associated with it.
My children understand my allergy and are very respectful. My family and close friends are as well. As an adult, it’s no longer about sitting at the lunch table with other kids eating peanut butter sandwiches. It’s now the dinner parties, social functions, and lunches that become a challenge to plan largely because of me and my allergy.
As an adult who has had food allergies since childhood, have changes like improved ingredient labelling and allergy awareness in society had an impact on your ability to manage your allergies?
Yes, yes, yes! I literally remember having my first Quaker Granola Bar when they came out as peanut-free. After seeing my friends eat these throughout my entire childhood, and never being allowed to have one, this was monumental. I remember that my mother stockpiled them (and still does). Quaker really paved the way for companies to improve their ingredient labelling and come out as “peanut-free.” When [a candy manufacturer] was flip-flopping with their decision to open a peanut-free facility, I started a letter writing campaign with my family and friends (pre-social media). Ultimately, the advocacy from the allergy community paid off (led by Food Allergy Canada). The Canadian labelling in particular is impressive, and allergy awareness in general has made it a little easier to live with severe food allergies.
To read more about adults managing food allergies, check out our Adults with Allergies Blog.