In a Perfect Food Allergy World…

In a perfect world people that grow, harvest, package, process, and cook food would be completely open and honest about their ingredients. They would know which products were produced where, and with a touch of a button, people with food allergies would easily be able to look up which products were potentially cross-contaminated.

For those inexperienced to the world of food allergies, you might think we’ve already arrived in that perfect world. Here in Canada, labelling laws require that companies clearly indicate the presence of priority allergens in their ingredient list. In 2012, new laws came into effect to try and make those lists easier to read- for example, if a milk derivative such as casein was used in a product, the manufacturer had to start listing “milk” in their lists.

However, we still have a long way to go. For those at-risk for anaphylaxis, one of the most concerning loopholes is the lack of mandatory cross-contamination declarations. Most companies have some sort of protocols in place for thoroughly washing equipment between products, but it’s often automated and isn’t guaranteed. Some ingredients can easily spread through air, for example powders like wheat flours. Cooking oils can create fine mist, and sulphites can be added as a gas to help prevent spices from clumping. Once theses airborne particles settle, they could easily cross-contaminate other products made simultaneously in the same factory. This can happen in people’s homes, too, cross-contaminating a kitchen over time in the same way that dust leaves a fine powder on everything. Surprisingly, however, the requirement to declare possible sources of cross-contamination for priority allergens is completely optional for companies. This is one of the nightmares for those with severe allergies, since it means you have to call each company individually and find out if they have chosen to mention that they use your allergen in the same factory or not.

It gets harder if your allergen is not a “priority allergen.” Let’s not forget that people can be allergic to any food! In Canada, the priority allergens are determined by the top 10 most common food allergens. That said, just because other food allergies are rare doesn’t mean they can’t cause severe reactions. Let me be the example here: my most serious allergic reactions have been caused by cherries and black pepper! There are situations when companies aren’t required to list those as an ingredient, let alone mention the risk of cross-contamination. As a result, my absolute favourite products and companies are those that take the time to list every single ingredient on the label, instead of hiding ingredients in vague statements such as “flavours” or “spices.” Some statements are misleading, too- “artificial flavours” is listed when there is any combination of flavours where most of the flavours are synthetically derived. They can still mix in the natural extracts, however, which was a frequent source of hives for me before I realized what was happening. Now, as a rule I simply don’t buy or use anything pre-packaged unless I’ve contacted the company. Whether that’s food, toothpaste, or even shampoo- if there’s a chance I might swallow it by accident, I need to know that none of my many allergens are present!

So then how do we deal with making labels more helpful for consumers with food allergies, while not overwhelming the packaging with the text of the ingredients? Some products that handle labelling well use the following techniques:

  • Less text because of fewer ingredients. You also have the added advantage of higher quality products if there are fewer additives. Plus there’s the entertainment factor- I turn into a crazed fan girl screaming with delight when I find products with only one ingredient listed.
  • Folded lists of ingredients hidden behind stickers. These are very common in the hygiene industry, where there are simply too many ingredients to list them all in a readable sized font. At least they’re all attached to the product, though!
  • Complete ingredient lists in plain language. It’s like a breath of fresh air when companies actually list every ingredient. I recognize that companies may want to be able to keep certain things proprietary, but honestly- the competition could theoretically decode most of the ingredients with lab testing… and the average consumer is more interested in the convenience of not having to make it themselves!
  • Special Quick Response (QR) Codes with links to online ingredient information. This is usually in addition to the ingredient lists, but adds extra information vital to the allergic consumer like a detailed chart about cross-contamination risks.
  • Contact information on the package, and staff who know product ingredients. I am 100% more likely to buy a product on the spot if I can reach someone knowledgeable while I’m at the store. I am also highly appreciative of companies who respond to my emailed queries with thorough answers.

At the end of the day, we don’t live in a perfect world. There are no perfect companies nor process that can make guarantees for all allergens. Someday, ingredient labelling may become obsolete as new technologies are being developed for consumer food allergen detection tests. But until the day when we can all afford our newly invented hand-held tricorders, I’ll be relying on companies with honesty, integrity, and a deep sense of pride in sharing with the world the quality of what they make. Here’s to hoping those companies flourish and multiply!

– Janice H.

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.

That Time my Friends Realized the Seriousness of my Food Allergies

One summer afternoon a few years back, my family and I were invited to our family friend’s house for one of our many summer barbeques. I especially love going to their place because they are amazing hostesses, and I always feel comfortable eating at their house. Teresa, the mother, always goes the extra mile to make sure I can eat all the food she prepares and that I’m not missing out on anything – even the dessert!

One of the many side dishes was a delicious summery looking salad which included mixed greens, fruit, and dried cranberries. I always get excited to eat an ingredient-rich salad that’s safe for me, since I typically don’t order salads when eating out due too potential cross-contamination with tree nuts. Toward the end of eating my delicious plate of food I began to feel something in my throat that I have never felt before. My throat felt like something was scratching it, as if a piece of something was stuck. My family and friends immediately noticed that I was repeatedly coughing and attended to me, watching my every move, ready to use my EpiPen®. I explained what I was feeling and we all began to look at the plates in front of us. Teresa, who prepared the salad, immediately ran to the pantry to grab the package of cranberries she included in the salad. We read the ingredients and that was it. It said may contain traces of tree nuts. Luckily, I wasn’t having difficulty breathing, I didn’t have hives, and I wasn’t feeling any other symptoms. My symptoms did not progress over the next few minutes, and I felt back to normal after about ten minutes. This was a scenario where I should have used my EpiPen®, but looking back I realize how difficult it is to decide in the midst of a reaction.

This was a moment of realization for all of us. The scared and worried look on my friends’ faces said it all. They couldn’t believe that as much as a tiny particle of my allergen, a trace amount, caused me to have a reaction. Teresa was so shocked that she forgot to check the ingredients on the package, since she is always sure to never use bulk ingredients when she cooks for me. Accidents happen and this was a lesson for all of us.

Fortunately, this was the only reaction I have experienced after the initial reaction I had when I was two years old and I have never had to use my EpiPen®. Not only was it a moment of realization for my friends, but it was also a reminder for me to always triple check the ingredients of the food I’m eating no matter who is serving it to me.

– Michelle D.

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.

“What’s in your food?” – Experiences with Food Labelling Abroad

When I was 19, I packed up myself, my peanut and soy allergies, and five EpiPen® auto-injectors, and moved to Finland. This was a goal I had set for myself when I was 12 and I barely slept from the day I received my university acceptance in January until I left in July. After 21 hours of travel, I ventured to the grocery store to find something – anything – to eat. My excitement was quickly squashed when I noticed the vague “may contain nuts” label present on so many foods. Did they mean peanuts? How was I supposed to eat with this vague labelling? Cookies, chocolates, breads, and even some pasta…and for some reason, things were labelled with “nuts and almonds.” Those are the same thing! Almonds are nuts! Not only was I dealing with reading in two new languages (Finnish and Swedish), but I was also dealing with new labelling laws in two new languages…and one wrong choice could have had drastic consequences. While I’m sure Finnish hospitals are wonderful, I didn’t particularly want to see the inside of one of them.
I lost 10 lbs in the first month, and anyone who knows me will tell you I didn’t have 10 lbs to lose. I quickly realized I needed to figure out these laws or let my allergies win and pack my bags to go back to Canada. I started contacting companies asking them to define what
nuts are included in their “may contain nuts” statement so I could better assess the risk for my allergies. Every company responded to me right away, and knew exactly what nuts were present in the facilities where their food was produced. Even a simple Facebook© message resulted in a straight-to-the-point answer where I clearly understood if the product was safe or not. With these quick responses, I soon started to question if I was better off in Finland than Canada.

From there, I explored restaurants. My Finnish friend insisted this bakery she loved would be allergen-safe. Bakeries are an automatic ‘no’ for me while I’m at home and I could feel my anxiety rising as I prepared myself to order a coffee with no cinnamon bun, as usual (perspective: that’s basically like ordering a poutine with no cheese in Canada). I nearly cried when, without missing a beat, the woman working behind the counter knew that the cocoa used in that cake *points to chocolate cake in the corner* had a “may contain nuts” warning on it, but that every other ingredient was safe and every piece of equipment was sanitized between making products. Yes, those traditional Christmas joulutorttu – puff pastries with prune jam, things I had eyed in the stores and accepted I would never get to try – were deemed safe.

The quality of service was not isolated to this small bakery. Every time I ate out I felt 100% safe and understood. All restaurants knew exactly what was in their food and what their food had come into contact with, whether it was a burger joint on the highway or a fancy restaurant in downtown Helsinki. The school cafeterias labelled allergens in all meals on large screens. Cafeteria food was labelled “contains a small amount of X” (aka, likely safe for intolerances) or “contains no X” (aka, likely safe for serious allergies). The cafeteria workers were incredibly precise with ensuring utensils only touched the food they were supposed to touch and that nothing dripped from one area to another. I skipped the days when peanut dishes were offered, but regularly ate the other cafeteria foods without any issues – and, most importantly, I felt safe whenever I chose to eat.

Originally, I wanted to write about the difficulties of food labelling abroad. Of course, I ran into issues in Estonia when I didn’t bother to learn any Estonian before my travels. I ran into problems in the arctic when a chef told me to just read the menu to see what was in the food (he thought I meant an intolerance). I also assumed that food in Denmark would be labelled in Swedish because food in Sweden was labeled in Danish. I quickly found myself buying a soda pop instead of a real meal to get me through my flight without a reaction because I couldn’t read any of the food ingredients. But through writing this blog post, I have come to realize that, for the most part, food allergies were incredibly well handled in Finland. Of course, you need to know the native words for your allergen. For example, I knew maapähkinä is peanut and soijaproteiini is soy protein before I even applied to move to Finland, and I knew how to pronounce them the best I could. Had I not learned those words, I would have had a significantly different experience. But other than the language barrier, no significant issues occurred. Travelling with allergies is possible, and sometimes you’ll be pleasantly surprised with what you find!

– Danielle B.

Barbados in Peanut-Free Shell

Your footprints disappear in white sand behind you as clear turquoise water laps gently against your toes. The air smells warm, the breeze carries tranquil scents and the sights offer endless blue horizons and lush green gullies. It’s hard to have any worries when you’re surrounded by such beauty, but the reality of having a severe food allergy is and it follows you anywhere you go.

I had the opportunity to travel to a slice of paradise last year when visiting the Caribbean island of Barbados. My family and I stayed at a condo-style facility where I had the opportunity to make most of my own food, which is an ideal situation for anyone who, like me, is at-risk for anaphylaxis to several foods. I thought I would find issues with food labeling laws or lack of information available when it comes to prepackaged foods. I was surprised to walk into a grocery store to see both North American brands that I am more comfortable with and precautionary labelling (e.g. “may contain”) on other brands. As well, an abundance of fresh foods like meats, vegetables, and fruits gave me variety in what I chose to eat. I was also shocked to see separate sections for all tree nuts away from the produce, along with closing bags and wash stations, a feature that I’ve never seen at a grocery store! It was amazing to see food allergy safety protocol outside of my home. It put my worries at ease and I felt safer and more comfortable.

Having bags that zip shut, and a place to wash or disinfect your hands is an idea worth considering for other grocery stores internationally. Whether it be for sanitary reasons, or food allergy safety, it’s a protocol I wish more would adapt. All of this made cooking on our vacation no sweat but I was still looking forward to trying the local foods and spirits.

Before I eat anywhere whether it be at home in Canada or abroad, I always research several restaurants online and gather any information I can find. From menus and allergen information, to hopefully contacting the restaurant by email or phone, I like to be prepared when I dine out. If I’m travelling, I try to contact a restaurant beforehand and see what (if any) allergen policy they may have. My emails and phone calls always have the same message and questions. If there isn’t an email or contact, I try to contact the restaurant on social media like Facebook or Twitter with simple questions. In my experience, they’re usually great at responding but I was floored at the responses and multiple follow ups I received from several restaurants in Barbados. The moment that caught me off guard was the remembrance of me and my food allergy. I emailed a particular place about two weeks before our trip, after being assured it was safe, I made a reservation, and to my surprise the manager remembered my name and allergy when we arrived. She took time to get the chef to chat with me about my options and assured me he would personally make my meal. I haven’t felt that safe and confident in my meal choice since Walt Disney World, where the staff went above and beyond! The chef brought my meal out specifically and even made me a special dessert since none were safe on the menu.

It was such a nice surprise to be greeted this way. I never expected that level of involvement and assurance from the chef, not to mention the sheer acknowledgement of my name and allergen was enough to keep a smile on my face the entire meal. I never expected that level of involvement and allergen awareness when I entered that restaurant. Here in Canada, restaurants are great when it comes to food allergy awareness. One thing I think some could learn is the hospitality and comfort I was offered in that fateful place. The assurance of safety and knowledge in the kitchen and care from the chef and staff boosted my confidence in asking questions and voicing my concerns.

A travel advertisement once left you with the line “life wasn’t created here, but it was perfected.” When each day starts with crystal blue water and ends with picture perfect sunsets, it’s hard not to get swept away into the peace and beauty that is Barbados. When you have a food allergy, it can be hard not to let a black cloud hang over your head when travelling. Between the plane and being in a different location, it can cause serious anxiety regardless of where you are. It can also be easy to forget about or be less vigilant when it comes to your food allergy when you’re on vacation and already in a relaxed state of mind. Whether you’re the former or the later it’s important to plan ahead, do your research, and come prepared wherever you may be.

With less worry blocking your view, that black cloud can lift and you’ll be able to see that beautiful view of vacationing.

-Arianne K.

By Food Allergy Canada