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Food Allergy: Teens Talk About It

Posted By Allergic Living On 2010/07/02 @ 12:57 pm In Food Allergy | No Comments

From the Allergic Living archives. First published in the magazine in 2006.

It is known that teenagers with food allergies face the biggest risks of reactions of any age group. To understand what it feels like to be an adolescent with life-threatening allergies, Allergic Living and Anaphylaxis Canada held an informal discussion with six Ontario students. The participants proved insightful, opinionated and concerned about awareness. Moderators were Gwen Smith of Allergic Living and Adil Mamodaly of Anaphylaxis Canada. Following is the full transcript of the discussion that appears in the Fall 2006 issue ofAllergic Living magazine.

Profiles of the Participants

Julia,

      16

    • Grade 11
    • Allergies: Milk and dairy, tree nuts; has asthma
    • Lives in: Toronto
    • Reactions: Has had more than 5 “Milk is in everything and hard to avoid; tree nut isn’t as hard.”
    • Auto-injector: EpiPen in her backpack

David, 15

    • Grade 10
    • Allergies: peanuts, soy, raw apples; has asthma and oral allergy syndrome
    • Lives in: Toronto
    • Reactions: 3 anaphylactic reactions when younger, asthma sometimes flares
    • Auto-injector: in his backpack, also carries puffer

Dylan, 16

    • Grade 11
    • Allergies: peanuts
    • Lives in: Aurora, Ont.
    • Reactions: None, but positive skin test and oral challenge at age 9
    • Auto-injector: always on him

Jason, 18, Dylan’s brother

    • Started university this fall
    • Allergies: peanuts, tree nuts
    • Lives in: Aurora, Ont.
    • Reactions: 1 severe, anaphylactic reaction: “It’s not fresh in my head; I was 18 months old.”
    • Auto-injector: always on him

Gardner, 15

    • Grade 10
    • Allergies: peanuts, tree nuts, penicillin
    • Lives in: Bowmanville, Ont.
    • Reactions: 1 anaphylactic episode at age 1 1/2
    • Auto-injector: clips on two-dose Twinject

Pat, 17

  • Started college this fall
  • Allergies: shellfish
  • Lives in: Aurora, Ont.
  • Reactions: 1 minor; throat tightened after eating shrimp. Skin test was positive.
  • Auto-injector: only carries EpiPen when eating at restaurant

LIFE IN HIGH SCHOOL

Gwen Smith: Are teachers and fellow students aware of your
life-threatening allergies?

Gardner: In senior public school, everyone knew I was allergic. You
go to high school, and only the same people know. And I don’t really
tell a lot of people about my allergies. The teachers also know.

David: My close group of friends knows, that’s probably it.

Dylan: In Grade 9, I didn’t want to tell anyone, it was that fitting
in thing. But this year, I’m telling more people. I get paranoid some
days because I’ve been noticing more and more people eating peanut
butter stuff from the vending machines: Snickers bars or Reese’s
Pieces.

Pat: People don’t bring shrimp to school, so it really doesn’t come
up, except when all my friends go to the Mandarin [restaurant], I
can’t go.

GS: Have you noticed any change with the implementation of Sabrina’s
Law in Ontario, which requires schools to have a plan in place to
protect anaphylactic students?

David: Absolutely nothing. If I were to ask anyone about Sabrina’s
Law, I doubt anyone would know. I haven’t heard a thing about it in
my school.

Jason: The only thing that changed is that the principal called me
down and asked me to bring an EpiPen to put in the school office. And
he asked everyone known to be anaphylactic to do the same. We all
kind of ignored it because there were a lot of us – two pages of
names – and how many EpiPens do they need in one office? There were
people I knew on the list that I didn’t know had allergies – it was
really weird.

Usually I just let teachers know that I’m allergic and ask that if
they see people sneaking in food, to make sure that they’re not
eating it in class. The main thing that concerns me is: was the
person sitting at the desk before me eating something.

Julia: My teacher knew about Sabrina’s Law, so I asked if she was
going to inform other teachers. And she said, ‘Do you want to help
me?’ So [in November 2005] I had to talk in front of all the teachers
and tell them how to use an EpiPen and what symptoms to look for.
None of the teachers had been trained.

Also, I don’t eat from the cafeteria; I bring lunch. I can’t eat
what’s in there with the cooking oils, cheese; there’s so much
contamination.

Gardner: My school is fairly peanut-free. Our cafeteria has a sticker
on it calling it a “peanut and tree-nut-free area”. In February,
though, I started to get, like, severe paranoia. Every time I ate
something, even if I took a bite of stuff I brought from home, I
thought my throat was closing in on me. It got bad to the point that
I got scared off eating, so I don’t eat at school anymore.”

GS: Did it feel like a reaction?

Gardner: I don’t know, because I’ve never had one [he last reacted as
a toddler]. I get up early and have a lot for breakfast and then eat
when I get home. I don’t think it was too healthy, though, because I
lost about 10 pounds after starting high school. And then my system
got used to it and the weight got back up.

Adil Mamodaly: So what do you do at lunchtime?

Gardner: I’ll still sit with my friends, and hang out, have a drink.

AM: Is there anything you’d like to see happen at your high school on
allergies?

David: I would just like to see the principal make a reference to it
in one of her speeches because very few people know about it at my
school. If I were to ask maybe 200 kids, I’d be very surprised if
even 10 of them knew what anaphylaxis was.

Julia: For me, it’s the follow-through. I did that teacher training,
I went away and now I’m regretting not following through. But I think
they should have followed through.

Jason: Yeah, the follow-through. They also hadn’t talked to me [about
anaphylaxis] since. When there are people in your school who can die
that easily, it should be a pretty big priority.
Since I started going to high school, they hadn’t mentioned it
[anaphylaxis] at all. Well, I had one teacher mention to the class
that I was allergic, but other than that, it was me mentioning it to
the entire class. There’s a complete lack of awareness at the high
school level, as far as I can tell. The administration and teachers
might know about allergies, but they don’t make sure the students
know. That would be the whole point – I don’t hang out with the
principal at lunch, I hang out with my friends.

AM: Would you want the teacher to explain anaphlaxis in general or to
point you out?

Jason: I don’t mind being singled out.

David: The more you can say about it (anaphylaxis), the better. I
don’t care if you single me out. In fact, I’d encourage them to
single me out. If no one knows what’s wrong with me and I’m on the
floor, nothing is going to happen.

ANAPHYLAXIS’S EFFECTS

GS: How have allergies affected the person you are?

Gardner: They’ve made me more responsible. I always describe it as
the Grim Reaper hanging over my shoulder; that’s ironic and dark, I
guess, but they’ve made me more responsible, staying away from
alcohol and drugs, knowing that that stuff can take you out of your
mind, make you more of a daredevil. I could have seen myself being
more of a crazy kid, even though I’m a bit of a nerd in school.

Julia: It’s made me more outgoing – because I have to tell people I’m
allergic. I have to tell them properly, and not be mean about it. I
know better than to say, “I could die, don’t eat that!” Usually it
starts if someone asks if I want something, and I’ll just say, ‘I’m
allergic to milk’. They’ll ask: ‘What happens?” I’ll tell them the
symptoms, that I could die, and mention all the stuff with milk in
it. They’re really blown away that – chocolate, ice cream – I can’t
eat any of it.

Dylan: I’m definitely more cautious about what I eat.

David: That’s a given, but you are more aware of other people who not
only have allergies, but other diseases, issues. You can be more
empathetic. So – ‘I have an allergy, I can understand what you’re
going through with diabetes’ – that type of thing. But I don’t really
see myself as very different from anyone who doesn’t have allergies.

Gardner: I just wanted to add another effect on me: A lot of kids
used to try to pick on me. I had enough one day, probably about Grade
2, so I just beat the crap out of some kid who was older than me.
Someone else was trying that again two years later, and I beat the
crap out of him. It also happened at lacrosse camp, some kid yelled
something at me, so I knocked him. I became a little tyrant from
about Grades 1 to 5 and then cooled down once I hit Grade 7.

GS: Were you angry because people teased you about your allergies?

Gardner: Yeah. I felt, ‘I’ve never done anything to you to deserve
this, so what gives you the right to do this to me?’ I just sort of
lashed back in the only way that I knew how. Of course, I got
detentions for about two weeks for each one. But they never bothered
me again.

DEALING WITH FRIENDS

AM: You all say that your close friends know about allergies. Do they
understand cross-contamination?

 
Gardner: I’ve explained it to a few people, but a lot of people just
don’t get the concept.

Jason: I’ve tried to explain that I could shake your hand and later,
eating something on my own, have a reaction. But I’m not sure they
get it.

Pat: This is related: Jason and I have been good friends since we
were little. I’ve always known about his allergies so I rarely eat
peanuts, and I never, ever make a peanut butter sandwich.

GS: Interesting. Jason, are your friends protective of you?

Jason: Oh yeah. Because I don’t get along with everybody. I’ve had a
person say, ‘I’m going to go buy a peanut butter sandwich right now,
so I can rub it in your face’. In elementary school, that happened on
the bus and that kid was suspended. In high school, a similar
situation happened. And I didn’t even know that, after it happened,
three of my friends found this guy in the parking lot and, uh, there
was an exchange of words. He’s never done it since.

GS: Was the threat serious?

Jason: The guy’s kind of weird, I wouldn’t have put it past him. But
I think he was just trying to get attention. So my friends did stand
up for me.

AM: Dylan, what’s the extent of your friends’ knowledge about your allergies?

Dylan: This year, the majority of my friends know. They’ll ask: ‘this
may contain peanuts’, and I’ll say, ‘just eat it away from me’ and
wash your hands. That’s how it goes.

David: I’m fortunate to be in a program where there are only 60 kids
I hang out with, and it’s for the next four years. They all know
about my allergies. Most of them are pretty inquisitive – What is
anaphylaxis? What can happen, what can they do? A lot of my friends
abstain from eating peanuts. Soy is another issue, though. The
concept is beyond them.
[Mentions that soy is ubiquitous as a food filler.]

AM: You’ve had reactions?

David: I had one when I was 2 and another when I was 6 or 7, both of
which I remember vividly. Both to peanuts. Then in Grade 3, I drank a
whole glass of soy milk – I got severe asthma, started to get hives,
starting to lose consciousness. It was pretty bad.”

AM: Julia, do you get annoyed with people who keep asking, what do you eat?

Julia: I do sometimes because I’ll get it from my really good
friends. And I always get: ‘I feel bad for you.’ And I hate that.
It’s my problem, and I don’t want to seem mean, but it’s so annoying
to get – ‘I feel bad for you.’

Jason: I can see how it gets annoying. I don’t really mind when
people are asking me about it [allergies] because I’d rather they
know. But if everyone just starts panicking about, ‘ohmigod, Jason’s
gonna die,’ it’s kind of the wrong attitude.

Gardner: Friends are probably just being over-careful. I know that if
it was one of my friends [with anaphylaxis], I’d probably feel pretty
bad if I had to put him in the hospital.

DATING/PARTIES

Pat expresses concern about allergens at parties, issues such as
using the same shot glass if there is drinking and shrimp are being
served. He suggests keeping your own shot glass. Gardner, meanwhile,
raises the issue of whether allergens are in an unlabeled bottle of
alcohol.

Gardner: You look at the back and you have no clue what’s in it. It
gets your mind racing a bit.

Jason: Some of them are made from nuts, too – amaretto, for instance.
When you’re our age, people will show up at parties with random
drinks that they’ve stolen from a parents’ cabinet, and if you
started drinking before they did, you might not catch on that it’s
amaretto or another [allergenic] one. At a party, a lot of people you don’t
know are there. And if you’re drunk, you won’t have a chance to tell
them that you’re allergic. If they bring in food, you might eat it
without thinking.

GS: How do you handle dating with allergies?

Gardner: Usually you just talk to them [a girl]; just give the basic
stuff but go into a little bit about cross-contamination. I’d just
pull her off to the side and ask if she knows about it. I know a
couple of girls who use Cheese Whiz with peanut butter all the time,
so I’d say – ‘if you’re having just Cheese Whiz in the morning and
you’ve had it with peanut butter before [from the same jar], that
could still contain a bit of it, and that’s enough to kill me.’ And
they sort of realize that.

GS: If you’re going out with a girl, do you tell her upfront about
your allergies? If you’re moving in for the first kiss, it’s got to
be a little hard to say: ‘oh by the way, what have you eaten?’

Gardner: Yeah, so do it at the beginning, and then just gently remind
them. Try not to dwell on it, would be the next point.

David: They [girls] usually know ahead of time – because I’ve burned
it into their heads. My girlfriend, when she was my girlfriend, she
abstained from eating peanuts, too. It’s helpful.

Dylan: Everyone just really knows if they’re that close to me.

Pat: Well, my girlfriend hates it [shrimp], anyway [laughs]. The only
time I was even close to shrimp was at a New Year’s party once and
there was some shrimp there. So I just made sure my glass stayed away
so nobody touched it. I told everybody there.

Julia: Everyone who knows me for a while, knows that I’m allergic.
Milk is so common that they’ll be eating something and ask if I want
some, and I’ll say, ‘no, because I’m allergic, and then we’ll go into
this huge discussion about it. People really want to learn about it -
because I don’t think they’ve heard about milk as an allergy, though
they all know about peanut.

GS: Peanuts and nuts can get stuck in teeth. If you’re going to kiss
a guy, do you have to be as careful with dairy?

Julia: Yeah, I’m so severe to dairy. I’ll put something on my skin -
even with a ‘may contain’ – and I’ll get a rash. I once had a gum
that had a milk derivative in it, and I reacted to the gum, too.

TRAVEL

GS: David, you mentioned travelling a lot. Have you ever felt a
little scared because of your allergies?

David: Yes. We went to France – luckily, my mom speaks French – and
one time we were asking at a restaurant if they’d fried the potatoes
in olive oil or peanut oil. We told them that I was allergic, but
they didn’t get it. And so I asked again, because I was skeptical
based on the waitress’s expression. And, it turns out, they were
fried in peanut oil, and my Mom wasn’t too impressed. We left the
restaurant. The manager didn’t care.

Julia: I notice that every new place I go, I have a reaction. When I
went to Italy, I had a reaction. When I went to Florida, I got maybe
two or three. I somehow get a reaction every new place I go. I’m
going to San Francisco this year and I’m paranoid about going there
because somehow I’m going to get a reaction.

GS: How will your family prepare for that?

Julia: Well, we don’t all eat out. If my parents eat out, they’ll go
by themselves. In San Francisco, we’ll have a kitchen, so we can
cook. But even still, if you buy a drink I’m always scared to have
it. Last time in Florida, after I had the reaction, I just stopped
eating bought stuff. I just ate what my Mom made.

AUTO-INJECTORS

AM: Do you all carry an auto-injector? [Murmurs of agreement.] Do
your friends know how to use it?

Dylan: Yes, most of my friends know how.

David: They all know how to use it, and I’ve told them what you
shouldn’t do. I’ve heard stories of people of people putting it
through their finger because they’re holding it the wrong way. I
carry it and I have one in my bag, too.

Gardner: I have one of the Twinjects and a regular EpiPen. I find the
Twinject easier for gym class, I can just clip it on. I always have
it for hockey, soccer, lacrosse. I keep it on me all the time, except
I take it off for rugby.

Julia: I bring it [her EpiPen] to figure skating practice when I go.

BEING SINGLED OUT

David: I don’t really mind having an allergy; it’s brought a lot of
good things for me. I go to a camp [in the summer], and the cafeteria
food is made for everyone and it’s usually pretty crap. But because I
have my allergy to soy, the chef, who I know quite well, actually
makes stuff that is far better for me. It works out quite well. The
same happens on school trips. And you also get a lot of attention,
people know your name, looking at the positive side.

GS: Some people don’t like to be centred out. You don’t seem to mind?

David: No [laughs].

GS: You almost enjoy it?

David: Yeah.

Dylan: Well I developed the allergy [at 9], so it hurt when I found
out I was allergic to peanuts because then I couldn’t have donuts.
And then there was the ice cream – we can have Chapman’s. But from
vendors on the street, you have to ask [about ingredients]. So I’m
not going to lie: it hurt; I really missed the food that I couldn’t
have anymore.

But you do get some recognition. We [the family] went to see ‘Fiddler
on the Roof’ and we couldn’t have some of the buffet food. So the
chef told us what stuff we could have and what to avoid. Then for
dessert, everything contained peanuts, so without telling us, the
chef came out with two plates for me and Jay of specially done
cheesecake. It felt kind of special. He made it for us.

GS: Thank you all for this.

See also: High School, the Danger Years here [1].

First published in Allergic Living magazine, Fall 2006
(c) Copyright AGW Publishing Inc.

To subscribe or order a back issue, click here [2].


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