What its like living with a series of allergies?

japanese nut allergy card

There’s been a increase in the number of allergy related news stories recently which I’ll be honest I welcome but its also really sad news too.

Allergic woman died after eating burger

Amy May Shead’s family warn ‘allergies can cause life-changing damage’

Pret baguette allergy cases before death

I felt very strongly as someone with multiple allergies of different strengths including the deadly nut/peanut. Its interesting reading Jessica Pan’s piece about what its like living with a severe nut allergy.

I know the word for peanut in Spanish, German, Italian, Greek and Icelandic. When I lived in Beijing for two years, the first sentence I learned to master in Mandarin was, “If I eat peanuts, I will die.” Then, to really get the message across, I would mime death. I’d clutch my throat, roll my eyes back and stick my tongue out. My audience, usually Chinese waiters, would laugh or look bewildered, but it was the most effective way to get the point across. It was blunt, but it had to be. I had a severe peanut allergy and I struggled to convey the gravity of the situation to locals in China, where nut allergies are rare.

I’m pretty much the same but having travelled around a lot. I have to be very clear when I say I’m allergic to nuts, peas, beans, coconut, fish and seafood. It was Japan when I learned to print out my allergies on a piece of paper.

Why paper? Because its something I can give to the wait staff to give to the actual kitchen instead of relying on the wait staff to convey all the allergies I have. One can be easily missed and all hell is unleashed into my body.

At dinner on my first night in Beijing, I told the waiter, “I’m allergic to peanuts. I don’t want peanuts.” He brought over my food and I peered into a dish, which was sprinkled in peanuts. “Peanuts?” I asked, pointing, knowing they were peanuts. He glanced at the dish and said, “Just a little.”

“Just a little” is the difference between alive and dead. Between the best holiday ever and an emergency trip to the hospital.

I’m happy to say this is less and less happening in the European countries I go to, due to the change in the law around the 14 allergens. Although I’m also getting some slightly more intolerant responses too like those in LEAF.

Now to be fair I’ve been told a few times especially in Japan, go away (more or less) but having to sign a wavier just makes my blood boil.

I’ve learned a few survival strategies along the way, though some of them I learned the hard way.

Friends who travel with me know that they must be my designated “tasters”. Most often, this task is left to my poor husband. So many holidays, so many memories, and so many moments of me shouting in his face, “Do you taste peanuts? Do you?!” A curry on a beach in Malaysia, hot pot in Chengdu, a baklava on a balcony in Greece, all with me staring at him intently, praying for the green light.

I have similar starting with the allergy card, ask friends, a touch to the lips and then a nibble. Wait for 3-5mins with water and antihistamines at the ready. I tend to eat between 2-5 depending on how certain I’ve eaten something allergic. I never leave home without antihistamines now.

There will be foods which I just won’t take the risk with and that does include some of the thai curries. If I think it might have something I’m allergic to in it, I will weigh up in my mind how close I am to my home, does the restaurant practice good separation in food preparation, how much is an allergic reaction going to ruin the rest of my day?

Maybe I should just stay home and not travel, but I love Asia and I really, really love Asian food. Instead, I take precautions: I nearly always carry an EpiPen with me. I also have a routine I do when I meet new friends or colleagues: I show them where I keep my EpiPen and I say, “Guys, just not through the heart, OK?”

The one and only time I was sick in Japan due to peanut sauce, I downed about 4 antihistamines drunk a lot of water then jumped in a taxi back. There is no way I want to be sick in a restaurant bathroom again! Especially because I tend to fall a sleep straight afterwards and trust me theres almost no where worst you want to fall a sleep. I assume its the antihistamines taking effect but it helps, just like a full sugar pepsi/coke after I wake up. Maybe its the sugar and the goopiness of the cola which helps line the throat and stomach.

allergy tests bottles

I don’t carry an Epipen due to having high blood pressure and idiots watching too much pulp fiction. (not the heart for goodness sake!). Given at the wrong time and I’m dead full stop. I’ve managed to stay alive by being super cautious and its worked for me.

Just because I don’t have an epipen doesn’t mean its less serious by the way. I’ve seen many people instantly think it cant be that bad if I don’t carry an epipen. No I’ve been very fortunate, cautious and suspicious of everything I eat or drink. Trace amounts don’t have enough of a effect fortunately too.

I sometimes cook with small amounts of Soya sauce but give me Tofu and its game over. Likewise I can eat Tuna chunks out of a can but fresh fish will have my body forcefully getting rid of it in the quickest way possible.

I try my best to avoid peanuts, but they lurk in so many dishes. I never order massaman curry, desserts with praline, anything with mole sauce, trail mix, granola or Thai salads. No to anything that even looks like satay, no to exotic alcoholic spirits. All foreign chocolate must be studied meticulously.

Everything is studied heavily by me and if there is no ingredients, I will likely avoid it. This means street food or stuff made on the fly almost impossible. Everyone talks about the street markets of Osaka in Japan but I found it impossible to eat there.

To be honest, although Japan was very tricky. Rules like avoiding all soup/noodle things helped reduce the contact with allergens. I think I would have a even more difficult time in China or Thailand. The pure thought of having to deal with a barrage of allergens makes me not want to go. Something most people barely think about when flying to places. I would love to be one of those people trying different things but its super dicey and not worth the risk, so I avoid them.

The puking bit is actually fine. It’s the waiting bit that is the worst. It’s looking for hives on your tongue and swelling in your lips and wondering, “Is this the stupid mistake that ends my life?”

Puking is the worst I’ve had for a long long time, aka its been a long time since I ended up in hospital. I’m one of the lucky ones where my allergy doesn’t send me straight to hospital. However this should never be dismissed as those hives on my lips and tongue are nothing compared to the endless scratchiness of my throat. Then the swelling and before long its difficult to breath. This is also when I desperately need my inhaler (not something I carry around all the time) but can’t pull enough air through my throat to breath correctly. At that point I realise its all down hill, its the point when I start to make mistakes due to the lack of oxygen going to my brain.

Its scary but I’ve only had a few times when I was much younger and it does mean slowing down and doing less.

I recently had to learn the Polish for peanut, frantically searching for it on Google Translate after carelessly taking a bite of chocolate in my hotel room last summer, although I already knew it was in the chocolate. It was that same ominous tingle on my tongue and my throat, followed by hot fear racing through my body.

Google translate is my friend, its not perfect and in some languages slight wrong but it gets the point across and thats all I need.

Look, I know allergies are boring. While visiting Koh Samui, I mentioned my peanut allergy so much that the Thai staff at my hotel greeted me every morning with, “Hello, Miss No Peanut!”

Its something most people never have to think or deal with. For example I’m writing this on a train from Bristol to Manchester with a change at Birmingham. On the previous train a woman sat eating cashew nuts, then dropped the bag on the ground (litter bug). Now on my last part a woman sits eating a Kitkat peanut across from me. I lean back in my chair but the smell of peanuts is heavy and I dying for her to finish the bar quickly instead of little bites at the edges.

The smell of death just hovers around and it makes you want to run for cover. I’ve drawn comparisons to when someone is smoking in your face, you might be able to deal with it for a short while then you have to move away.

Its something most people never think about but I do all the time! I’m also consciously watching where she touches on the train, to make sure I don’t touch it too.

Allergies are boring I get that, everytime I have to pull my allergy card out at a new restaurant or place. But its deeply dangerous for me and many allergy suffers to underestimate them.

My hope is stories like mine and Jessica will put a human face to the jokes about throwing peanuts at people. Pret’s labelling is just horrible as I found out that the Korean BBQ soup included fish. But I only found that out when asking for the actual legal allergy menu and not trusting the ingredient menu they include in store.

Author: Ianforrester

Senior firestarter at BBC R&D, emergent technology expert and serial social geek event organiser.

2 thoughts on “What its like living with a series of allergies?”

  1. A friend of mine is in a very similar situation and has launched an app called Can’t Eat That (on iOS) to try to digitise the process of allergy cards. I have no financial interest in it or anything – but might be worth a look!

    1. Thanks Chris S

      Is it available on Android?
      I think its important to have the paper version because its something you can give to someone rather than just show the front of restaurant staff but have been thinking about the app route

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