Category Archives: Allergies and Anxiety

Magic words to get anyone to take your allergies seriously

In relation to my peanut and tree nut allergy

I am a 27-year-old adult with life threatening allergies and I carry my epinephrine auto-injector everywhere I go. When I’m out with friends or family at restaurants it is very important that I communicate the severity of my allergies to servers and to the chef(s) or management. It is more and more common that restaurants and pubs ask about food allergies before patrons need to mention them, which is accommodating and proactive. Still, it is vital to impress upon the wait staff the severity of the allergies, so the chef can comment on whether or not various meals or parts of the kitchen are allergen friendly. As well, it is not only when I am out on the town when I find the need to mention the seriousness of my allergies; it can also be when I am at a friend’s house for dinner, or even at my own house with my family.

It was not easy learning how to broach the subject of my allergies. I recall visiting a friend who had put out a vegetable platter to which I had to politely refuse. She asked why, and I explained my allergy. Following up, she asked what happens when I eat raw fruits and vegetables, to which I said “I die”. The whole room fell silent, and I realized that everyone either thought I was being over dramatic or that my allergy was so severe that I couldn’t even be in the same area code as an allergen. I then explained that my body may go into what is called “anaphylactic shock”, and helped them understand the severity of my allergy better. This was when I learned that there is a fine line between over-dramatizing allergies and downplaying them. At a restaurant or a friend’s house it is important not to scare people with the thought of a life-threatening allergy, but it could even be less effective to undercut their severity.

I have learned that there are two or three phrases, which I commonly use now, that portray the quality of my allergies without creating a panicked environment: “life-threatening”, “anaphylactic”, and “serious” allergies.

Surprisingly, another method that has worked effectively to communicate the danger of my allergies is simply having my auto-injector visible on the table. It is nearly a habit of mine that when I sit down at a desk or at a restaurant table, I empty my pockets of my wallet, cell phone, keys, and auto-injector. I do this for comfort and to avoid losing one of these valuable items in the crack of a seat or onto the floor. One time at a restaurant a server noticed this ritual, and immediately asked me what I was allergic to. They seemed concerned to obtain accurate information too. This method worked unusually well, but personally I don’t like being the centre of attention, so I have stopped doing this as often.

In relation to my other allergies

I have found different experiences with my common allergies compared to my uncommon allergies. I have a severe form of what’s called “Oral Allergy Syndrome”, where my body confuses fruits and vegetables with tree pollen. Many people have an allergy to one or two fruits or vegetables and when they eat these, they experience a mild throat irritation or scratching. I have a severe form of oral allergy syndrome and when my mouth and throat are exposed to any raw fruit and any raw vegetables, there is profound swelling which can lead to airway compromise. Peanut, tree nut, gluten, and milk allergies are fairly well publicized in the media, and I find restaurants usually understand that these are serious. Raw fruits and vegetables on the other hand are less commonly life-threatening allergies, so it always comes as a surprise to my server. I usually avoid fruit and vegetables in a restaurant because servers invariably mention, “How cooked do they have to be.” Since this is so often subjectively interpreted, I don’t risk it. It is not always known whether or not they understand the severity of these more uncommon allergies. I’m sure this is not limited to my allergies, but other adults with other less common allergies as well. It is important to approach these allergens as you would any common allergens when communicating them to others and understand that there may be some surprise and discussion about these allergens.

Overall, a useful method to ensure the severity of an allergen is communicated effectively, I remember to use a calm demeanor, language such as “serious” or “life-threatening”, and avoid dramatizing or underplaying an allergy.

– Fraser K.

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(Backcountry) Camping with Allergies

Route planning

I recently returned from a ten-day, 85-km hiking and backcountry camping trip in the Canadian Rockies, about 90 minutes southwest of Calgary. It was so enjoyable and the views were so magnificent! I went with three friends, one of which like myself, has life-threatening food allergies. We camped in the Peter Lougheed Provincial Park, about 30 minutes from any cell phone service so needless to say, the trip took a lot of preparation. We had to select our routes, campsites, gear, and safe food. I found that meal planning was surprisingly the most time-consuming part of the trip, especially for an adult with allergies. I have life-threatening allergies to peanuts, tree nuts, and all raw fruits and vegetables, so here’s a glimpse into my camping preparations:

Exit strategy

I am a very pragmatic individual, and since I have food allergies, I planned for the worst-case scenario. If I had an allergic reaction in the wilderness, I need to know how far I was from the nearest ambulance and hospital. This was important for our trip because we were so secluded, but I think it’s an important part of weekend camping as well. With appropriate meal planning and proper meal preparation hygiene, it is unlikely that an adult with an allergy will experience a reaction while camping, but knowing the closest healthcare facility is important because it can put one’s mind at ease. Before leaving on the trip we found that our furthest point from the trail head was 21-km and from the trail head we were 95-km from the Canmore General Hospital. We were also able to determine how many epinephrine auto-injectors to bring. Since we were quite far from healthcare services, we chose to bring a satellite phone as well, which gave us the flexibility to call for emergency services if the worst-case scenario occurred.

Overcoming previous fears

Mental preparation for this camping trip was especially difficult for myself because of a previous camping experience. In the summer of 2016, I was camping with two friends in Northern Ontario when we encountered a very large black bear. It was moving away from us into the woods, but was directly between us and the trail head. Minutes later I realized that I was having an allergic reaction. We had to get to the trail head to get to the car, but there was a bear in between us and our goal. I administered my auto-injector and we proceeded with caution towards the car, making as much noise as we possibly could to deter the bear. We made it to the car and arrived at the hospital nearly 45 minutes after my initial reaction, but not without tremendous anxiety. So the thoughts going through my head leading up to this big trip was…what if something like this happened in the Rockies?

New food exploration

I discovered my allergies in my early 20’s. I have a severe form of what’s called Oral Allergy Syndrome (OAS) and with this type of allergy, skin testing is not effective at elucidating allergens. I kept having allergic reactions to food I previously ate without concern. This method of uncovering allergens can be stressful because I felt that nothing was safe. Since discovering my allergies, exploring new foods has always been difficult. I used to avoid new foods altogether, but honestly that’s quite a boring way to live. So, I began incorporating new foods into my diet, trying them in safe places (in a doctor’s office, or at a hospital, or if you have easy access, at the allergist’s office), and now I try them at home with my epinephrine auto-injector in-hand. I felt that in the wilderness camping, I would be alright with my prepared food as long as I had my emergency plans in place (auto injector, satellite phone, and an escape route) since I only brought food that I was comfortable eating and 100% sure about.

Medication preparation

So, now that I had my escape route planned and the information about the closest healthcare facilities noted, I knew that the furthest I would be away from medical services at minimum was 12 hours hiking and 90 minutes driving. To be safe, I doubled this estimate, and I brought enough allergy medication for just over 24 hours. As well, we made sure that not only was each member of the group aware of my allergies, but each member knew what to do in case of an emergency.

Having fun

Once all the preparation had been complete, it was time to explore the Canadian Rockies. This trip was one of the most enjoyable experiences of my life! I swam in glacier waters, I saw many different kinds of wildlife including a grizzly bear and a large buck, I experienced some of the most glorious views from mountain tops, and really learned what it takes to hike and camp in the mountains. I spent 10 days with my closest friends, experienced highs and lows (literally and figuratively), and learned to work together. With the right preparation, weekend camping and backcountry camping can be very, very enjoyable experiences, even as an adult with allergies.

– Fraser K.

Why All the Anti-Allergy Public Backlash?

Ah, I see you’ve met someone who isn’t entirely sympathetic or has a very archaic view of a food allergy. It doesn’t matter what point you are at in life or where you are in the world, it’s bound to happen. It’s hard not to get angry and fight fire with fire, but sometimes you have to be the bigger person, count to ten and try your best to explain.

A story: I was recently on a plane heading back to Canada after a wonderful vacation. Being the prepared person that I am, I had informed the airline of my food allergy and was allowed to board early to wipe my seat down and speak with the flight crew. As people began to board (my family included), the flight attendant came over to us and created a sort of buffer zone, informing those around me they had to refrain from ordering or eating anything with peanuts/tree nuts. Great, right? Apparently not, because not even Captain America’s shield could save me from the daggers the woman in front of me was throwing. When the flight attendants came around with the food cart an hour later she tried to order something with tree nuts and was angry when she couldn’t. She turned around and shook her head at me while muttering to herself that people like me shouldn’t fly.

So, what’s the deal with anti-allergy backlash? I’ve had my share (as I’m sure many have) of negative responses and backlash regarding my food allergies. People can be callous or have little respect when it comes to things they don’t understand or don’t want to understand. It’s not something you can control, and it’s not something you wished upon a star for, but people seem to lash out regardless. It might be the restrictions on where you can enjoy your favourite snack or what you can put in your child’s lunchbox for school that has people so upset. The reality is, parents have to deal with the very real reality that a simple food can cause serious harm. Their kids then turn into adults who are hyper aware of their food and surroundings because of this constant threat. Trust me, being an adult with a food allergy is no walk in the park. It leaves me with more questions about my food than the ending of Sixth Sense.

If I can stand on a soapbox for a second, I urge you to cast your doubt and negative feelings aside for people who have little understanding of a food allergy. I instead ask you to extend the olive branch and help them understand the seriousness of a food allergy. Implore them to put themselves in your shoes. Think of yourself at a hockey game, enjoying the rush of a crowd cheering, your favourite player skating down the ice on a breakaway, you catch your breath, not because of the shot, but because from the corner of your eye you see someone eating peanuts and throwing the shells on the floor. Try to imagine the very real and scary aspect of the situation. You ask kindly and respectfully that they refrain from throwing shells or eating beside you. As that person, instead of jumping straight to anger for not being able to enjoy the salty snack, try sympathy for a situation they physically can’t alter or change but you can. You have the opportunity to be the winning player in that game, there may not be a trophy or medal in the end but know that you’ll have the eternal gratitude of someone.

If you’re interested in knowing more about allergy backlash check out the articles below.

– Arianne.K

http://allergicliving.com/2010/07/02/food-allergy-backlash-grows-1/

http://allergicliving.com/2010/07/02/hot-topics-food-allergy-backlash/

My Surprising Dining Out Experience

Two years ago, I found out I am allergic to soy the hard way. My best friend, who has a peanut allergy, shared a pepperoni pizza with me at a restaurant we have always been comfortable with. Within an hour, I felt like I had been set on fire, my lips started to swell, and I started getting hives. By the time I got to the hospital, I was red from head to toe. My friend, on the other hand, was completely fine. Thankfully, my trusty EpiPen® auto-injector worked the way it was supposed to, and after my short hospital stay I was fine. Through allergy tests we determined that I am allergic to soy – but only to some soy. All three of my anaphylactic reactions have been to extremely high amounts of soy protein, but I am okay after consuming things with soy flour, like certain brands of bread, and things with soybean oil or lecithin.

So when I only react to some soy and restaurant allergy guides label for all soy, my job becomes a little more work. I have to explain to restaurant workers – who often understand that food allergies are severe, but don’t understand the mechanisms behind a reaction – that I only react to some soy and therefore need to see ingredients lists, not just an allergy chart. When I have to do this every time I go to a restaurant, eating out loses its excitement. Prior to my soy allergy, I just told the waitress “I’m allergic to peanuts” and everything proceeded without a problem – peanuts were recognized enough that most restaurants seemed to be comfortable serving me. However, a soy allergy diagnosis completely changed this experience for me. The manager of a large chain accused me of trying to steal recipes when I asked for information about soy ingredients because of my allergy, and refused to serve me. Some places just labelled soy in their ingredients, but not the actual form, which always resulted in me leaving without eating. Others said that they had ingredient lists and I arrived to see an allergen chart
labelling all soy clumped together in one term. I stopped eating out entirely, except at select fast food restaurants where I personally feel safe eating.

Last fall I joined a Facebook group for local people with allergies and noticed one mom posted that her child has a weird soy allergy like mine. I connected with her and she sent me a list of places she feels safe taking her son, reminding me to contact them on my own before going just to be safe. One of those places is right down the street from my apartment, so between classes my friend and I decided to check it out.

I have never had such amazing treatment. To call this a “surprising” experience significantly undermines how I felt. The restaurant is called Famoso® and they have a few locations spread throughout the country. I went to the Toronto location, so I can only speak to their allergy awareness. Their allergy chart* is the most detailed I have ever seen, and breaks down exactly what form of each allergen is present in each dish. The manager spoke to me about how they handle allergies, both on the phone before I arrived and once I arrived. A separate kitchen is dedicated to all allergy-related meals, and is completely cleaned when a new allergy-related meal is prepared. The chef works on the allergy-related meal until it is finished, to reduce cross contamination risks. They go as far as completely cleaning the oven before putting allergy-related food in it. Of course, there is always a risk when eating out. Famoso® does have a few dishes with peanuts and/or soy protein in them, and that alone shows there is a higher risk of causing a reaction compared to places without peanuts and soy protein present. However, I was pleasantly surprised with how safe I felt and the precautions put in place by the restaurant staff.

For me, this broke a trend of not trusting restaurants. I realized it is possible to eat out and feel safe. Prior to this, I felt like restaurants didn’t want to deal with people who have allergies to foods that aren’t frequently seen. I was surprised how educated the Famoso® staff were about all allergies, how they were willing to workDd with allergies outside the Top 10, and how confident they were in their service. Famoso® is now my go-to restaurant, thankfully having a location in Toronto and in my hometown (Kitchener-Waterloo).

– Danielle B.

*Here’s a link to Famoso’s allergy chart -> http://famoso.ca/wp-content/uploads/2016/11/Famoso-Allery-Chart-November-14-2016.pdf

C is for Confidence: A Food Allergy Story

Something I know now to be the corner stone of my food allergy identity is confidence. Confidence taught, learned, and exercised at a young age is key to becoming an adult who speaks up about their food allergy in every situation. If your confidence is stolen or stifled, it can cause many kids to become ashamed of their food allergies. Then they may attempt to hide their allergy from others or dismiss the seriousness of it which makes the potential for a reaction so much larger. Instead of fighting for your child to have certain foods in a classroom, we should be explaining the severity and importance of awareness. Confidence can be a shield for ignorance and a tool to help change the perception many have about food allergies.

Confidence is the most important skill you can craft when it comes to having a food allergy and it’s something that I think needs to be instilled at a young age. We as a food allergy community need to be building each other up, and helping to educate those around us so no one feels bad or ashamed on a daily basis. If we understand at a young age that we are all unique and beautiful, then the classroom and world will be a far more accepting place.

There is a saying: It takes a village to raise a child. As a community, we should be working together to help those with food allergies gain a voice that is proud of their food allergy. Confidence in myself and my fellow classmates would have made a world of difference between eating alone and helping everyone understand food allergies at my school. It seems like a small skill, but those little seeds tended to over years in school and into adulthood will create an aware, powerful counterpart in the food allergy community. A community that is dedicated to educating others, but more importantly, confident and proud in themselves.

– Arianne K.

Note to Self: Trust Yourself More. Note to Everyone Else: Trust Me Less!

Trust isn’t something that comes easily for those of us with food allergies. Once diagnosed with a severe food allergy, you learn to avoid your allergens at all costs. Ideally, we live with a certain amount of healthy paranoia- because if we’re not paying attention to what we’re eating and what else it has touched… then it’s possible we might accidentally ingest what we don’t intend. Sometimes at parties I feel like Gollum, hovering over the place setting that I just painstakingly re-washed and set with my food… Mine… My precioussssss!

The problem is that while I need that self-doubt around my food… I don’t need it when I’m actually having a serious reaction. One would expect that, having had well over a dozen serious allergic reactions in my adult life thus far, I’d be completely comfortable and confident in knowing what exactly is going on. Yet half the time, I doubt myself. I ignore my symptoms and pretend like nothing’s wrong in spite of feeling absolutely horrid.

I think that tendency to want to ignore my body might very well be encoded into my DNA… My paternal grandmother wrote in her diary that on a day she felt sick, she *only* made three shirts before breakfast. My mom realized a few years back that she was able to ignore her pain so well that it caused nausea. After I broke my back, I started to notice that my colleagues who knew me well would ask me if I was feeling alright about 30 minutes before I noticed the agony I was in. I suppose that has translated into my food allergies as well- I’ll notice that I’m itchy and hot, of course, but I make any excuse to classify that symptom as something normal. I don’t want to admit a reaction to myself until I can’t stop itching, or I start having difficulty breathing, or I find myself camped out in the bathroom. I NEED to learn to trust myself more. I know the signs and symptoms of a reaction. I just need to learn to touch base with myself and have the courage to admit (and accept) what’s going on!

On the flip side… I need you to trust me less. During most of my severe allergic reactions, I’ve been a complete and total idiot. I think it’s actually part of the reaction, but I just stop thinking rationally. This can look like strange behaviours on my part, like not calling for help on the work two-way radio after an asthma attack had me collapsing on the floor… or ignoring the EpiPen® in my waist belt to go and find a different one upstairs before actually following medical advice to administer it. It’s like I’m watching from far away. I know it’s illogical and dangerous behaviour, but I’m not usually able to counteract it.

So when I DO come to you and admit I’m having a reaction, or when you notice I’m behaving very oddly… I need you to doubt me. If I’m curled up in a ball, refusing to answer questions, or just saying “I don’t know” repeatedly when you ask if I’m alright? Those are REALLY good clues that I need your help. Ask clear, yes or no questions, and point out my symptoms to me. If I finally admit in a quiet voice that yes, I think I need to be checked out? That’s your cue to call 9-1-1 and get me checked out! It’s never a convenient time to go to the hospital, so you can expect that I will be hesitant. I might be trying to talk myself out of it even as I struggle to breathe, so take a deep breath. Be courageous. Be ready to help me give myself the auto-injector if I need it. Honestly, it doesn’t hurt and it really does make me feel better almost instantly!

Then again, if I’m rationally able to articulate why I don’t think this is a serious reaction, I’m probably fine, and you won’t need to chase me down the street with an auto-injector! (That’s my brother-in-law’s standard question to help figure out if my reaction is mild or not: “Should I chase you with your EpiPen®?” LOL yikes.)

– Janice H.

The Best and Worst of Food Service

Everyone with an allergy knows the feeling of uncertainty. You’re halfway through a big bite of your meal when you hear someone say, “are you sure…”

Even writing about it I feel that tightness in the pit of my stomach. The tell-tale calling card of anxiety. No matter how experienced I’ve become with managing my food allergies, I still make mistakes, and those mistakes are scary.

I always try to remember that I’m not perfect when someone else is the one making the mistake. I try not to blame servers at restaurants, they’re usually very helpful. I’ve noticed one single thing that I appreciate more than any other when it comes to servers. But first a quick story.

In the middle of a meal at a banquet the server abruptly took my plate away, without explanation.

My friends at the table were confused but I knew what was happening. I had just eaten peanuts. I’m allergic to peanuts and I’ve had anaphylactic reactions in the past. Just like that I’m starting to freak out.

The server returned a moment later looking flustered and politely asking me to come to the manager’s office.

“What’s going on?”

“Just come with me.”

I’m losing it. This is the end. I’m taking a mental inventory of my symptoms. Nothing yet, but how long will it take? When will it start?

I walk into the office and I’m shocked to find it full of people.

As I sit down I’m bombarded with questions from a red faced and angry manager:

“How do you feel?
Tell us if you’re feeling bad!
You can’t sue me, you have to tell me!
How do you feel?”

This interrogation lasted ten minutes. The only response I gave was a simple,

“What did I eat?”

She never answered. For ten minutes she lectured me about lawsuits but refused to tell me what, if anything, I had eaten.

Finally a server in the corner told me that they were worried about contamination of my meal by pine nuts. I’m not even allergic to pine nuts. But they never asked me and were reluctant to answer my questions. I was fine, but my night was ruined and I’ve never been back to that restaurant.

The one thing I appreciate most in servers is direct honesty. Tell me what I’m dealing with and let me make my own decision.

Whenever you hide something from me, we risk a very serious situation.

How about another story? This one is the best experience I’ve had at a restaurant.

A big group of us went out for lunch. In the restaurant I calmly explained my food allergy to the server. His response is among the best I’ve ever had. He suggested I look through the menu and see if anything caught my eye, in the meantime he would talk to the kitchen manager and ensure that he could tell me EXACTLY what I could and could not order.

When he returned he took my order and then said:

“Thank you for joining us today. Before I place your order with the kitchen I want to explain our process so that you know we have you covered and can eat your meal in peace. When I place this order, I will announce that this table has a peanut allergy. Every staff member in the kitchen will wash their hands and until your order leaves the kitchen everyone will remain at their stations to avoid any chance of cross contamination. Our manager has assigned one cook to your order. He is working at a clean station that hasn’t been used since it was last cleaned. He’s cleaning it again to be safe. He will clean all your food and re-wash your dishes. When he’s ready to send the meal I will wash my hands and he will hand me the food, it will not touch the service counter at all. Once I pick up your meal I will not touch anything until I place it in from of you. Someone will open the doors for me, everyone will stay out of the way. Nothing will come into contact with your meal AT ALL. If anyone touches it for any reason we’ll start all over again. Is that OK with you?”

I was floored. This server just spent five minutes with me and all I ordered was a $10 lunch special!

That is the ultimate experience for me. I had no doubts, no anxiety, and I would go back in a second.

What I need from the people around me is the truth. I’ll take care of the rest!

– Jason B.