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.

Sign this allergen declaration before you can eat here

I have had quite a few issues eating out in the past with my allergies. But even I was shocked when visiting Leaf in Manchester for a second degree dinner.

As usual I told the server about my allergies, she stopped me and said the manager needs to take my order separately. I got use to this, so didn’t think much of it. When the manager came, she was carrying a allergy sheet for the food which is what I was expecting. But she also had a form which I needed to sign!

Yes if I wanted to eat at Leaf, I would have to sign the document to free Leaf of any responsibility of any allergic reaction I might have! The manager explained multiple times certain foods are from external suppliers and can’t be guaranteed as nut free; regardless of me saying trace is fine; she wasn’t going let me order unless I signed.

As usual, I actually read the declaration/wavier, which at the time seemed more like a disclaimer. But it was written to resolve Leaf of any responsibility in the unlikely chance I have an allergic reaction, end up in hospital or even die. As I signed it half knowing this can not be enforceable and part of me loving to see this as a court case in the UK. I signed it with a Red pen, which I remember being a issue with contracts.

I ordered the Chorizo in Redwine sauce as a starter which based on the allergy menu contained nuts (It was just Chorizo, Redwine some herbs!). My main was basically steak with veg and little potatoes with no potential nuts. The cheese cake also no nuts or coconut. So I was fine! No allergic reaction.

Next day I spoke to a few people. Some said I was being discriminated against and wondered if they would get people who are physically disabled to sign something just encase? Vivid lounge staff pretty much all laughed about the whole thing, suggesting they might do the same just for me alone.

Regardless I thought it was all ridiculous and I wondered if this was worst or better than being turned away from Home Sweet Home ages ago?  I understand there are people with far worst allergies but signing something to cover the restaurant’s ass is just shocking! It really didn’t fill me with any trust of what is going on back in the kitchen, to be honest. As long as you are told especially by the manager, that should be enough. I get accidents do happen but this feels so wrong and left a horrible taste in my mouth (pun intended!).

I was willing to get up and leave but as everyone had ordered, but its unlikely I’ll be back…

Happy Birthday fun and woes

life

I think it’s important to find the little things in everyday life that make you happy Paula Cole

Some fun things on my birthday today… Yes I’m one year older but still feel like 23.

The Listening Project
Fi Glover introduces a conversation between friends whose different outlooks on life don’t affect the strength of their relationship at all. Another in the series that proves it’s surprising what you hear when you listen.

It happens that BBC Radio 4 played the Omnibus version of the listening project today on my birthday. The Facebook reaction is even more fun and enjoyable to read, with friends of Kate’s saying I should be taken to Gotland.

Thanks Vivid Manchester but yes coconut will kill me… Not quite the best birthday present for someone allergic to many things. Its the thought which counts.

Don’t worry its not the first time something has been put down in front of me and had it pulled out right in front me for allergy reasons. To be fair its better than the result of being very ill or worst but its hard watching others enjoy what you could have had.

Peanut Allergies are killer, so are baked beans for me

This Video Explains Why Peanut Allergies Are So Dangerous (found via Lifehacker)

Great video and I’m now subscribed to their youtube channel, which has lots of food related tip bits. Love for them to do one about tuna chunks non fish allergy paradox I have.

But watching the video which i’m going to send to anybody who dobhts my allergy or claims i’m just fussy. I dont get that so much now a days, especially since the EU brough in this law, forcing food outlets to take things seriously or get sued!

Which reminded me what I was thinking while reading this thought catalog post, 12 Things People With Nut Allergies Can Relate To.

A hesitation to trust waiters/ waitresses. “Are you sure this doesn’t have nuts in this?” you’ll ask them skeptically (and even after you’ve gotten the green light on your order, you slant your eyes at them). They supply an assuring “I just double- checked with the kitchen and you’re good to go.” You un-tense, and smile, and proceed to inhale your food.

Too many times this has happened in the past, and you are literally on a knifes edge to throw the dice and hope or leave the restaurant. Now in the EU, if anything happens I can clearly state I told them and look what happened! I do feel very happy we

Of course the get out clause is the trace or they can’t count for the cross contamination in the kitchen. But at least its now not down to the waiter/waitress, which is a very good thing! You only have to look at the tragic death what happened in Manchester just as the EU law was coming into effect.

I still remember the story of eating out with friends in the Northern Quarter of Manchester at a recently opened spainish restaurant. I asked the waitress if the desert had nuts and she claimed to have checked. So it came and I believe I put my fork to the desert when the manager grabbed it away from me, saying it does contain nuts. Close shave!

However my lovely thoughtful friends decided to ask whats going to happen to the desert now? Manager says it will go in the bin. Of course they said they would find a home for it. And shared it between them selves, right in front of me, while I sat saying what lovely friends they were, and how I hated them all…

To be fair this is after the EU law as well but lucky the manager stepped in because nuts is certainly the worst of all my allegies. Luckily its been a long time since I’ve had a allergic reaction to nuts but following my last prick test (yes thats what they actually call it) with no less than 14 different pricks in my arm.

CQzSCKnWoAAv0QC

But my reaction to peanut/satay sauce in Tokyo serves as a reminder of what could happen if I get too loose with my allegry. I’m usually ok with trace amounts but as the doctors have said its likely to get worst as I get older. No epi-pen yet, but one day soon…

Till then…

Benadryl is the bomb, and will always be there for you

There is another stellar piece about allergies on thought catalog, which I wanted to share. Some key points…

We are often uncomfortable trying new food.

Please don’t push us to try unfamiliar foods if we are noticeably uncomfortable. We can become especially nervous if the food is from an unknown source, if we aren’t sure of the ingredients, if we are traveling somewhere with much different food than we are accustomed to, or if allergens of concern could be in close proximity. Often times, you’ll find that we don’t have the same curiosity towards new, exotic food as you do.

We know that it sucks.

You know what makes it worse? Constant reminders.

“So, wait, you’re telling me that you’ve NEVER had lobster?! Oh man, that sucks!!!”

I am fully aware that it ‘sucks’. What are you trying to accomplish here? Feelings of guilt? Frustration? FOMO? It’s not as if I can use your remark as inspiration to seek solutions to my lobster-less life. There is no option for self-improvement here. Many of us have come to terms (reluctantly so) with the fact that we will never (ever) be able to eat lobster or oyster or Peanut Butter Cups or [insert allergen here], despite how much it ‘sucks’.

Although to be fair my body treats all my allergies as poisons, especially fish, hummus, smelly nuts such as peanut and the killer baked beans. So I’m actually feeling sorry you all have to eat that stuff. Yes I would like to have sushi but I can have it if I’m very very careful and at a vegan restaurant.

The allergy cards translated to Portuguese worked very well and I had no reaction from memory..

Preparing for allergic troubles in Japan

Allergy pictures

I previously wrote thinking about going to Japan…

I’m expecting at least one allergic reaction and the chaos which will come from not being able to commutate what’s happened.

Because of this, I’m prepared with multiple ways to communicate my multiple allergies.

  1. I have printed allergy cards written in Japanese and English from this site.
  2. I have the same cards on my paper white Kindle
  3. I have images with a red sign indicating this might be a problem for each type of food I’m allergic to

Its not perfect but I also will have a stack of antihistamines and my inhalers to give me time to get somewhere and puke my guts up in private, without my throat closing up. I’m hoping a trip to JR Tōkyō General Hospital will be avoided but if so I got the details.

If things go really wrong, I know to dial 119 and try and shout Tasukete – 助けて  …if I can.