In the 4th Episode of my Food allergy Blog series, I invite Danielle to the blog to share her experiences living with multiple allergies.
- Research librarian
- Living in Canada
- ALLERGIES : peanuts, nuts, soy, peas, chickpeas, lentils, lupin, and NSAIDs (ex. ibuprofen). I also have exercise-induced anaphylaxis.
LIVING WITH FOOD ALLERGIES
How have allergies effected your life?
I feel like I should have something dramatic or catchy for the first question, but I don’t really find they’ve affected me too much overall! I’ve had them since I was a baby and, although I’ve gained quite a few in my teens and into adulthood, I don’t really know anything different than living with allergies.
How did you go about getting a diagnosis? Was it stressful and was it easy to get?
I think it took a while to get a formal diagnosis when I was little. After my first reaction when I was two, my allergist said just to not eat peanuts and sent us on our way. My mom had to get epipens from our family doctor, and then when I was about 6 we finally got in to a new allergist. We lived in a rural area at that point – about an hour from a hospital – and he was really concerned that the other allergist wouldn’t give me epipens, that I was eating “may contain” foods, etc.
For tree nuts, I didn’t eat any until I was about 16 because the recommendation when I was young was to avoid all nuts if you were allergic to peanuts. I ended up reacting to cashews when I was 24, after having quite a few negative skin tests to them over the years. We did blood work and it pulled up positive for all nuts except pecans and walnuts, and my allergist and I decided I’d just avoid them all since I reacted so violently to the cashew.
But for the rest of my allergies, it took about 7 years from the first symptoms to actually getting a diagnosis. I have a rare type of an allergy called food-dependent exercise-induced anaphylaxis. The allergist who diagnosed my peanut allergy when I was 6 didn’t really know about it and was quite dismissive of my reactions, but I was sent to a new allergist when I was 24 and within 20 minutes she had diagnosed me. It was pretty emotional to hear that 7 years’ worth of symptoms were, in fact, legitimate and that, no, I wasn’t losing my mind, all within a 20 minute appointment. Since then we’ve figured out my trigger foods and so far I’ve avoided having anaphylaxis from it again (*knocks on wood*).
SPOTTING A FOOD ALLERGY
What were the tell tail symptoms that made you suspect an allergy?
For my peanut allergy, I had a reaction at a Chinese restaurant when I was about 2. My mom brought my own food to the restaurant but I must have touched something and then touched my food because my eyes swelled shut. I also have a very vivid memory of eating a peanut butter cookie with smarties when I was little and it causing my throat to hurt – I couldn’t have been older than 3 but I remember the awful taste and the feeling in my throat like it happened yesterday.
I had a reaction at a Chinese restaurant when I was about 2. My mom brought my own food to the restaurant but I must have touched something and then touched my food because my eyes swelled shut.
With treenuts, I didn’t suspect it until my throat started to swell after a cashew. Surprise! That ended with an epipen and going to the emergency room. Looking back, pistachios gave me really, really violent stomach pains – not like a gassy or an intolerance kind of feeling, but like my stomach was ripping itself from my body or bleeding on the inside or something – and hazelnuts made me feel wheezy. Probably should have been a sign to stop eating them, but my allergist had insisted since I had a negative skin test I wasn’t allergic. Thankfully my new, current allergist did the bloodwork I talked about above!
For my soy/legume allergy and exercise induced anaphylaxis, at one point I really started to question my sanity because I felt like my allergist wasn’t listening to me – he said I was developing new allergies overnight and to accept it and move on, but I’d eat the same breakfast every day of the week and on the Tuesday I’d react, but not the Monday or the Wednesday. Looking back, on the day I had anaphylaxis I woke up late, really quickly ate breakfast, and ran to catch the bus to get to the university campus. The other time I’d gone for dinner with my roommate (who also had a peanut allergy) and when we left the restaurant a snowstorm rolled in so we ran a few blocks to the shopping mall. Those both resulted in full-blown anaphylaxis, using an epipen, hospital trips, pulled out of university for some time..I don’t really know that I could have suspected it before getting that formal diagnosis because the very nature of this type of allergy is that it’s an unpredictable, inconsistent type of reaction, but I knew that it was something more complex than “a new allergy developing overnight,” and I wish I’d gone for a second opinion sooner.
ALLERGIES AND FAMILY LIFE
How do allergies effect your daily life as a family with some having allergies and some not?
Growing up it wasn’t really a huge deal. We kept my allergens out of the house and I never really noticed anything different. We baked all my birthday cakes, axed the nuts from the Christmas desserts, and life went on. With the pandemic I’ve moved back in with my mom and my younger brother and they’ve had to shuffle life around a little bit. They don’t eat out nearly as often now because I really struggle to find anywhere I’m comfortable eating at and they don’t want me to feel left out if they bring home, for example, McDonalds (even though I tell them it’s ok). The only food we have in the house that I’m allergic to is a protein drink and they wash the blender, cups etc separately with a different sponge and clean the sink afterwards, and it doesn’t actually have an allergen in it but has a may contain warning. But I think my cat annoys them more than the lack of McDonalds or separate sponges!
How do you find eating out? Food shopping?
I definitely find food shopping less stressful than eating out. When I was “only” allergic to peanuts, eating out wasn’t very difficult – we just avoided places like Thai, Indian, and Chinese restaurants. But now with soy and legumes thrown into the mix, eating out is tricky. Here in Canada restaurants don’t have to have allergy charts and I find many people don’t even know what soy is, what it’s in, etc. I’ve had a few instances where I’ve been ensured something is soy free, only to check a label myself and find that it isn’t. We are lucky that in Toronto we have a top allergen free restaurant and bakery called Hype Food Co., I eat pretty much everything from there – the food, but also the desserts like donuts and cupcakes. My boss even surprised me with safe cupcakes from there for my birthday last year!
I find our labelling standards really good in Canada. The biggest issue is that since legumes aren’t a top allergen sometimes they hide in food labelled as “food starch” or “vegetable protein.” But it’s nothing major, I just don’t get those products and I don’t think I’ve come across something that doesn’t have an option I can buy.
FOOD ALLERGY RELATED ANXIETY
Anything that worries you about having an allergy?
Not particularly…I know it’s not as easy as “just avoid the food and move along,” but I try to see it that way as much as I can. I was a bit sad to lose some of my favourite foods when I was first diagnosed with the soy and legume allergy, but I’ve since found a way to make a replacement for most of them that is almost as good. For the most part I don’t know any different, this is just my normal, so I don’t really even recognize that there is something to worry about. I have to do some things differently, like pack a lot of food if I’m going travelling or contact restaurants in advance if I’m eating out, but I try not to stress too much.
Some people are quite surprised to see how remote some of the places I go to are and ask if I’m worried about being too far from a hospital, but it’s never really bothered me. I prefer travelling to remote, smaller places over the big cities – don’t have to worry about a surprise peanut chocolate bar popping up when I’m hiking in the middle of nowhere! 🙂
Any tips or words of advice you could share to anyone worried about allergies?
I would say, to anyone with any sort of medical condition, that if you think something isn’t quite right and the doctors aren’t listening to you, go to someone else. I went a huge chunk of my life so far – from 16ish to 24 – wondering why I’d feel funny after certain foods, why I’d have reactions sometimes, why things felt so spicy to me when they weren’t to others, and perhaps I could have avoided those years of worrying if I’d have thought to go to another doctor instead of accepting that my doctor knew everything. Medical experts, even the best ones, don’t know everything about every subject in the area they specialize in.
For the parents who maybe can’t afford the specialty, allergy-free alternatives of products – don’t worry, we couldn’t either when I was little. Allergy-friendly alternatives can be so expensive and it makes me so so SO sad to see parents on IG feeling guilty that they can’t, for example, buy a bakery cake for a kid’s birthday because it’s simply not in the budget. There’s no guilt or shame in not being able to buy a super expensive cake from a specialty bakery and I can promise you my mom’s from-scratch, sometimes lopsided, fondant-less cakes were just as special to me. (Check out Jemmas ‘Homemade’ Dairy Free Cake Hack)
And for anyone with allergies – there’s always a way to change something to make it safe for you. Whether it’s modifying a recipe, going to an event, travelling somewhere, it can be done! It can be a bit embarrassing to bring my own food to events, but others don’t notice nearly as much as we think they do. And sure, it kind of sucks having to bring so much food with me when I travel, but it just leaves more room for souvenirs in your bag after you eat it all 🙂
Of course we can’t travel right now, but my goal is to eventually get to all 7 continents and (because I’m a major planner) I’ve already got rough outlines and plans for all of them. So if there’s anything I can ever help answer, please feel free to reach out!!
Thank you so much to Danielle for sharing her story, her tips and advice living with a food allergy on this Guest Blog. If you want to keep up with her travel plans (once we are allowed to travel), head over and follow her on Instagram. If you have any allergy related questions, I’m sure she will be more than happy to help.
How do you manage your food allergies on a day to day basis?
Let us know in the comments.
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