Profile of a Food-Allergic Kid: Danielle Barry (Top 10 Challenge)

Research librarian Danielle Barry has been allergic to peanuts for as long as she can remember. When she was still in her teens, she outgrew a kiwi allergy. And in recent years, she’s added soy, peas, chickpeas and lentils to her list. Still, this travel lover certainly doesn’t let her allergies stop her from doing what she loves best…

AllergyBites: What foods are you allergic to?

Danielle Barry: I’m allergic to peanuts, soy (not lecithin and oil, though!), peas, chickpeas, lentils, and NSAIDs (Advil, Aleve, etc.). I also have a rare disorder called exercise-induced anaphylaxis, which means if I eat the wrong food and exercise, I could have an anaphylactic reaction. Mine is so sensitive that I’ll go into anaphylaxis if I eat the wrong food and walk too far.

AB: Can you describe the first time you truly understood you had food allergies because they impacted your life in a meaningful way?

DB: I guess when I was about 10, when I started doing synchronized skating. There were 16 skaters on the ice at once and we had to perform together, including holding onto arms and hands. My coach/managers enforced a strict “no peanuts/tree nuts the day of competition” rule, and if someone was caught eating peanuts (only happened by accident!), they got the coach’s equivalent of a ‘mom glare.’ I think that was the first time I realized my allergies could affect others, although no one ever had a problem with avoiding the foods at skating.

AB: Have you ever experienced an anaphylactic reaction? If yes, what happened?

DB: Yes, I’ve had four that I can clearly remember. And another one I don’t remember as well happened when I was about seven. The first one I can remember was when I was 17. About 40 minutes after eating, my stomach felt like it was on fire from the inside, I got horrific stomach cramps, felt panicky, and eventually, I just wanted to sleep. When I hit the sleepy stage, I knew it was a reaction — but I felt completely incapacitated. At that point, my mom took me to the hospital. None of these were typical signs of anaphylaxis we thought to look for, so she didn’t know what was going on. By the time we got there, I was red from head to toe (which we were told was hives, but presented like a sunburn). The doctors gave me epinephrine, I think, and I was fine.

The second one was a little less than a year later. I went to the ER and I’m convinced it was a reaction (the stomach cramps are distinct), but it went away on its own without progressing past the cramps and overheating. The third and fourth ones were two weeks apart when I was 21. Both of these reactions were pretty similar to the first one, except my lips also swelled, and I took epinephrine and called 911. I didn’t get the sleepy feeling because I didn’t let it progress that far, but I still probably waited too long to use the epinephrine — although, my allergist says I did everything perfectly.

AB: How were your parents when it came to letting you participate in everyday activities?

DB: Sometimes questions like this make me laugh, because I honestly did not know my allergies made me so different until joining these online allergy communities a few years ago. I was a competitive figure skater from six to eighteen years old, I started volunteering with multiple organizations when I was ten, I went to school, I went on school trips, I went to concerts, I went to sports events, I went to birthday parties, I had multiple jobs as a teenager, I travelled all over Ontario and won the Ontario Winter Games with my synchro team in my last year of skating.

I think a big part of my ability to do that (and my family’s ability to let me do that) was that I had such a good community around me. I grew up in a small farming town with around 1000 people, and the sense of community was incredible. If that sense of community isn’t there, it’s a lot harder to participate.

AB: In retrospect, is there anything you wish your parents had done differently?

DB: Nope, absolutely not. I don’t know how my mom raised me to be completely blind to the fact that I was “different” but to still be aware of my allergies and be an advocate for myself. Add to that we lived in a small rural town where only a few others kids had allergies and no support groups existed. She was pretty much alone, especially when I was diagnosed. My family did pretty well, I think.

Actually, I take that back. Someone should have learned how to make a croissant from scratch so I could try a real one — and not just given me those ‘mini buns in the shape of a croissant’ lies.

AB: Have you ever thought about what your parents’ grieving process looked like? Do you think they ever reached the “acceptance” phase?

DB: I think they’ve reached the acceptance phase by now, but I think my mom had a long phase of guilt. When I was newly diagnosed, she asked our family doctor what could have caused my allergies, and he said: “Undoubtedly, you did.” The belief when I was a young was that if a parent ate an allergen when the child was little, the child would develop an allergy from being exposed to it. If you breastfed and ate an allergen at the same time, it was even worse. When I was a baby, she would feed me with one hand while eating peanut butter on toast with the other — every single day — so she felt guilty for a long time.

AB: As someone who grew up with food allergies, what’s the #1 tip you’d like to share with other parents trying to keep their little ones safe?

DB: I think it’s important to remember that this is our normal. We don’t know anything different, and for a lot of us, we probably never will. So while you’re adjusting to this entirely new lifestyle and probably panicking a lot, remember that we don’t know anything different and whatever you create as our normal will become our normal.

AB: Any tips for young adults navigating life with food allergies?

DB: If you’re struggling, reach out to your allergist or to Food Allergy Canada (or FARE, for our American friends). Knowing that I can call my allergist at any time and get an unbiased, honest opinion about whether or not I’m being way too anxious has been so key to being as comfortable as I am with my allergies. If you don’t trust your allergist, that’s a huge problem. And if you don’t feel like your allergist is “getting it,” don’t feel bad going to another one. I was with the same allergist for 17 years and he couldn’t figure out what was causing my reactions. I went to a new one, and she had everything figured out within two hours. It’s not that I trust one over the other — some allergists just know more about specific things than others do.

AB: What were your biggest challenges as a ‘food-allergic kid’? Now that you’re all grown up, have those challenges evolved?

DB: Not being able to eat real croissants.

(Can you tell I’m a bit bitter about that? I obviously need to get to The Bread Essentials.)

Jokes aside, I honestly didn’t have any big allergy-related challenges as a kid. That’s probably hard to believe if you’re a parent reading this story, but if I had challenges, I didn’t recognize them as such. I’m trying to think of anything, and all I can remember are the times people did something to acknowledge I had an allergy in a good way. Like one year, this chocolate bar I had always wanted to try had been made in a nut-free facility and my skating coach got me that for Christmas. No one else got that chocolate bar, just me! I can’t think of negative things, just more examples like that. Sure, I couldn’t eat a lot of the celebration treats and always traded my Halloween candy in for a present because none of it was safe, but they weren’t really challenges because my mom always had an alternative.

I was a bit worried about the transition into the workplace, but I’ve honestly had no problems at work. When I was diagnosed with a chickpea allergy just last week, my coworker offered to throw out the massive bag of wasabi chickpeas she had just brought to the office. My boss buys everyone cupcakes when we’re having a bad week, and she made me go down to the grocery store with her and find something else safe (after making sure it was still okay that they ate cupcakes from a “nutty” bakery). The firm offered to make the entire floor I work on a “peanut-free zone,” and had an entire section of our onboarding training dedicated to going over the various allergies within the firm. One floor is entirely egg free, and they take allergies very seriously. So, slightly sidetracked from the original question, but with so many accommodating, wonderful people, it’s hard to even think of any challenges.

AB: How often do you eat out?

DB: I haven’t been eating out very often, because for the past three years I’ve been a bit unsure what I’m allergic to. When Hype Food Co. opened in May, I started going there pretty frequently. I think I’m there at least once a week, because it’s close(ish) to both work and home. I don’t typically eat out anywhere else, but now that I know what I can and cannot have, I might start eating out at other places a bit more.

AB: Where are your go-to SAFE eating spots in Toronto (and beyond)?

DB: Hype Food Co., Famoso Pizzeria (on Bloor), Cakes by Robert (Beaches location), Wendy’s, Mother’s Pizza in Kitchener*

*Disclaimer: Haven’t been to Mother’s Pizza since the soy diagnosis, but they were super lovely when I asked about allergy awareness. Would bring out labels, make sure meal was prepared safely, etc. Went many times before the soy allergy appeared.

AB: Can you tell me why Famoso makes you feel safe?

DB: Famoso Pizza on Bloor in Toronto is one of the places I feel 100% safe having dinner with my allergies. They outright guarantee my meal will be safe. Their allergy chart blew me away because they actually label for the specific type of soy used, which is great for me because I just avoid soy protein and soybeans. Most allergy charts don’t help me because they just check off if soy is in the product and don’t label if it’s lecithin or oil (which it usually is and which I can have). Their waitstaff have confidence in their allergy preparations and are well-rehearsed on the kitchen protocols, and the chefs are totally accommodating (i.e., no eyerolls, no “holding up the kitchen” feeling). Just to go into a restaurant and have someone say “I guarantee your meal will be 100% safe” and actually have the allergy awareness to support that statement is so refreshing.

AB: You travel A LOT. Can you tell us about the first time you took the leap and/or how you ended up with the travel bug?

DB: I had a high school teacher who had been to 100 countries. My friends and I used to sit in her classroom at lunch while she’d tell us stories about where she’d travelled to. She could remember such vivid details about her adventures, and I wanted to be just like her. She was so cool.

When picking universities, I chose Trent University in Peterborough (Ontario) because they guaranteed I could study abroad before I accepted my offer. In my second year of university, I applied to go to two schools in Finland and one in Iceland, and was accepted to all three. I decided to go to Åbo Akademi in Turku, Finland. Trent had some sort of an agreement with the university in Finland that my accomodations had to be safe for my allergies, meaning a shared kitchen with people who I could trust and immediate change of apartments if my allergens were brought in. As long as I had my own safe place to cook for myself, I knew I’d be fine over there.

I had a lot of support from my university there as well. People have allergies over there — just like us — and since all kids are provided a free lunch at school, all of the schools are very knowledgeable about food allergies and cross contamination during prep. I could actually eat in their cafeterias! They view it as a “right” to be provided safe food and they went above and beyond to help me learn about navigating life with allergies in their country. It really helped me feel comfortable with travelling. That year, I travelled all over Finland and also went to England, Wales, Sweden, and Estonia. Something like 25 or 30 destinations, which isn’t bad, considering I was technically studying as well. In the summer of 2017, I went back and travelled through Norway, Sweden, and Finland for two months, and it’s really amazing how allergy-aware these countries are.

AB: Why did you decide to join the Top 10 Challenge committee as a volunteer?

DB: Since I was about 8, I’ve always been involved with a volunteering project of some sort. Now that I’ve moved to Toronto, I needed to find something new. In the past few years, I’ve met a lot of allergy parents who are feeling really overwhelmed and worrying that their kid will never be normal, but I have found it’s hard to find an allergy organization to volunteer with regularly. One of my friends is also on the committee (Jen), so when I asked her if she had any ideas about where I could volunteer, she automatically suggested I get involved here. And, here I am!