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‘There aren’t many options for people like me’: A Q&A on living with food allergies

Rates of food allergy have increased in recent decades. In Canada, 9 per cent of Canadians report having a food allergy. Among children and adolescents, food is the most common cause of severe allergic reaction or anaphylaxis.

Food allergies lower general health perception, limit activities and have significant emotional and economic effects on individuals and their families. For some, the COVID-19 pandemic has further worsened quality of life by limiting access to medical care and allergenic free foods. 

However, there are ways to improve the wellbeing of those affected through knowledge, awareness, and advocacy. Organizations such as Food Allergy Canada are providing support for patients and education for the public through various advocacy efforts such as improving identification of allergens in schools and restaurants, legislation around food allergen labelling and access to emergency devices such as epinephrine autoinjectors.

Giulia Cavaleri, a high school English teacher at the Peel district school board in Ontario, has lived with multiple food allergies her whole life. As a mentor with the Allergy Palls and Allergy Allies mentorship program through Food Allergy Canada, Cavaleri discussed living with food allergies with us.

How did you find out you had food allergies?

I have had food allergies for as long as I can remember. I am allergic to fish, shellfish, peanuts and tree nuts. I was diagnosed with a fish allergy when I was four months old. My grandfather put a little bit of fish that they were eating at the top of my lip so I could taste it. That was clearly the wrong thing to do. I apparently had an intense allergic reaction and was taken to hospital. Later, I was tested and found out about the numerous other food allergies I had. Over the years, none of my food allergies have improved or resolved.

Do you see a doctor for your allergies?

I see an allergist regularly but not as often as I used to as a child. Growing up in the early 2000s, there wasn’t much knowledge about food allergies among the public. My appointments were about learning about the food allergy world and about how to navigate food. As an adult, my appointments are conversations about and how things are going, if anything has changed, how I’ve been able to manage my food allergies, and if I’ve encountered any problems such as an accidental exposure to an allergen. We then go through what happened, where I went wrong or where we can find out more information.

How do you manage your food allergies in your day-to-day life?

It’s been 100 per cent avoidance of all fish, shellfish, peanuts and tree nuts for me. I carry two EpiPens with me at all times because I want to be 100 per cent prepared if an allergic reaction were to happen. I have self-administered my EpiPen a couple of times in my life.

Tell us about a time when you had an accidental exposure to one of your food allergens.

A few years ago, right after Halloween, I absentmindedly put a chocolate in my mouth that the label said may contain peanuts and tree nuts. I didn’t read the label before eating it. And then a little while later, I noticed that I was feeling really hot. I was outdoors so I thought about going home. By the time I walked to my car, my breathing was getting shallower. So, I injected myself with my EpiPen. My phone had died, so I ran into a nearby restaurant and the workers called 911. The ambulance got there very quickly and took me to the nearest emergency department. They were very quick to get me the attention I needed. But it was a really scary situation because I was by myself.

Is it difficult to interpret food allergen labelling?

Companies do a very good job in Canada in terms of food allergen labeling, especially after my experiences traveling. But there are terms such as “may contain” and “may contain traces” that are pretty much umbrella terms. People think that “may contain traces” means that it’s less likely to contain the allergen than “may contain” when they’re the exact same thing. I wonder if there’s a better term that can be used that encompasses the two of them.

How does having food allergies affect your day-to-day life?

It makes eating out difficult. A lot of restaurants will grill meats and chicken with fish or will fry fish in the same fryer as they fry everything else. And that prevents someone like me from being able to choose any fried dishes that the restaurant offers. For some restaurants, like pubs, that is half the menu. Lately, restaurants and businesses have become more aware of food allergies, and they’re more accommodating to the different needs of guests. There is a big difference among restaurants, however.

How does having food allergies affect you in the workplace?

Even though allergies are a well-known thing now, in instances where food is a major player like work meetings or conferences, often there aren’t any options for people like me. A reason is people have not experienced allergies themselves or don’t know anyone with allergies, so they don’t know how to be careful or how to ensure that they’re doing the right thing to prevent an allergic reaction. So, especially in a setting with food, I can sometimes feel isolated.

One year, just before Christmas break, my colleagues and I had a luncheon. I had said that I would love it if nobody brought in any food containing fish. When I walked into the luncheon that day, there were several dishes with fish in it. It frustrated me that people don’t understand or maybe they are being ignorant. Or maybe they are just choosing not to listen. I always bring my own food wherever I go, just in case. On that day, I made sure to bring a lunch. In my experience, most foods will probably contain one of my allergens in it. By bringing my own food, I still have something to eat and can still engage in the event.

As a teacher, how have things changed in schools for people with food allergies?

Things have changed so much. Growing up, there wasn’t much awareness or knowledge about food allergies among school administration, teachers and students. There also weren’t many other kids with food allergies. I felt very alone. Now there’s more awareness, especially among students. My students all know about my allergies, and they’re all very respectful to my rule of no food in the classroom. If students are hungry, they leave the classroom, have their protein bar or snack and wash their hands before entering the classroom.

Also, every high school in Ontario has implemented Sabrina’s law, named after a high-school student who had something from the cafeteria and then died shortly after. Now every teacher takes a course on how to use an epinephrine autoinjector. We ensure that there are autoinjectors in the office, a list of students with allergies and a plan for each student in case an accident were to happen. Our school isn’t peanut or nut free. But there definitely is allergy awareness and an understanding of what steps to take if something were to go wrong.

Certain things can be done a bit better in schools. Food allergen labeling in the cafeteria can be improved. I find that there’s a lack of awareness in the cafeteria or a lack of engagement in terms of identifying possible allergens. We have one poster that mentions allergens. But it does not really go into details.

Has the COVID-19 pandemic affected how you manage your food allergies?

The COVID-19 pandemic has prevented food engagement among people, so it has been easier to manage my food allergies. There are fewer events involving food because meetings are over the computer, and you have your own food.

How has living with food allergies changed for you as an adult compared to as a child or adolescent?

I used to find it very challenging to carry an EpiPen when I was younger. Children and adolescents don’t really want to wear bags or wear something on them to carry the EpiPen. Now, carrying a bag is something I want to do so I’m finding it a lot easier to always carry my EpiPen. We now also have many different types of epinephrine autoinjectors available and I think having a choice is great. For example, Allerject is a little bit smaller than the EpiPen, so that means you have more of an ability to put it into smaller bags or a fanny pack.

Also, since high school, I’ve been very involved with Food Allergy Canada’s mentorship program where I help mentor youth with allergies.

We would like to acknowledge Food Allergy Canada for connecting us with Giulia Cavaleri for this interview.

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Authors

Natasha Correa

Contributor

Natasha Correa is an Internal Medicine resident at Western University and an incoming Clinical Immunology and Allergy resident at the University of Toronto.

Samira Jeimy

Contributor

Samira Jeimy is an Allergist and Immunologist at the London Health Sciences Centre in London, Ont.

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