For advice on severe allergies, visit the Anaphylaxis Campaign website www.anaphylaxis.org.uk/living-with-anaphylaxis/young-people or drop us a line info@anaphylaxis.org.uk / 01252 542029 /@ACOutthere/@Anaphylaxiscoms

Tuesday, 11 August 2015

TRACE Study (also known as allergy advice I'm sorta but not really qualified to give)

I have a nut allergy. In fact, I have enough allergies to shake a big stick at, and quite a few more. I was 18 months old when I went into anaphylactic shock due to a peanut butter sandwich I stole off the boy I was being babysat with (that gives you good insight into my dating history, doesn't it?). Since then I've also been diagnosed with oral allergy syndrome (OAS)(mouth/ hives problems to a lot of fruit and veg), I'm allergic to soya, anaphylactic to all nuts and broad beans, lactose intolerant (albeit mildly, thank god) and I seem to constantly be reacting to something new. If it's fruity, vegetabley, legumey- chances are I will be exceptionally cautious when eating it (if it's new to me), if I eat it at all.

HOWEVER.

I have not had an anaphylactic reaction (outside of a controlled clinical trial) since the very first one when I was 18 months, save for one example I will cover later. I am awesome at handling my allergy, mostly because constant visits to the allergy clinic, horrible initial symptoms and my mother have terrified me into avoiding all possible reactions. I have been endlessly supported by the Anaphylaxis Campaign, have terrified my friends into looking out for me, and am possibly horribly over cautious. Oh well, it's keeping me alive.

Though the Anaphylaxis Campaign, I saw an advert for adults with peanut allergies to participate in a clinical trial. This trial has lots of aims- they're trying to work out a minimum dose of peanut needed to make a severely allergic person react to inform food labelling; they're looking at the effects of sleep deprivation (in the place of stress) and exercise on the severity and minimum dose for reactions, and they're looking at blood biochemistry throughout reactions, as well as skin blood flow and heart activity. This is the TRACE study.

I've since had both of my baseline challenges, the active dose of which sent me into anaphylaxis. Instead of being scared like a normal human being, I was thrilled- I finally got to experience the worst of my allergy symptoms first hand, to make sure I knew what I was up against. What surprised me was how quickly I went from symptoms that could easily be confused with, and thus accounted to my OAS, to feeling like someone had decided to crush my ribcage, shut my throat and tired me out to the point where breathing felt like running 6 marathons at once. In a few seconds, I went from talking normally, to my blood pressure dropping, all of my accessory muscles being needed to breathe, and gasping for air.

I was told at the same time, my heart rate plummeted, my blood became cold (they were taking it out of me at the time) and I went completely and utterly white. Luckily the doctor in charge of the trial was two steps ahead of me and stuck adrenaline in my thigh (that's a lot more painful than they tell you in clinic, but also the relief is almost instantaneous. I'd marry it if I could.). After the adrenaline, my hands and feet went blue, numb and tingly as all my blood vessels constricted; I started shaking, violently and uncontrollably to the point where I had to be held down onto the bed, but it was like coming up for air. My lungs suddenly decided they were lungs again. My heart decided it wanted to leap out of my chest, but at that point I'd have taken any side effects whatsoever just to be able to breathe and feel like I wasn't so tired that I couldn't even take a shallow breath for the effort.

So the message from that is- be so so aware of every single allergic symptom, because unless you know the allergen and know your allergy inside out, it can go badly very, very quickly. Also, if you have adrenaline with you at all times, it is the most brilliant thing ever. After my symptoms had subsided, I felt like I could run the world (admittedly still with very, very shaky legs.)

I pride myself on being good with my allergy. I ask in all the restaurants I go to, I will refuse to eat something if I'm not sure, I carry at least two epi-pens everywhere. (And I mean everywhere. Even in an exam hall, because who knows what's been on those tables.) My allergy is very, very severe- I've been told I will (and have) reacted to a dose equivalent to 1/16 of a peanut, or 1/32 of a piece of bread with peanut butter on. But the results from this shocked me- because I thought I was fine, up until my body flicked that switch into not being able to breathe.

My first and only anaphylactic reaction was when I was without my mum was when I was on French Exchange. I had broad beans in a lunch from the canteen, and immediately my mouth felt horrible, my ears were itchy, and I started panicking. I took an anti-histamine, but being 13 and stupid, I thought the fact I was having breathing difficulties would be resolved by my inhaler. It was, and a lot of anti-histamines- but I should have taken my epi-pen. Please, never ever be scared to take an epi-pen- even if you're not that worried, as soon as your breathing is involved, get that adrenaline in your leg.

I have had friends who have had epi-pens for mild reactions because they were scared- and it's true, better safe than sorry. I have a friend who sat in a hospital car park for 3 hours because she was scared her reaction would get worse. Nothing is too early when your life is on the line.

Katie's top tips for young adults who cannot deal with peanuts/ other stuff

A lot of this is going to be old advice with a Katie twist. Bear with me.

- Carry your adrenaline everywhere. They're awkward to fit into bags for clubbing, but you can find them. I find accessorize often does clutches that allow me to fit two pens, anti-histamines, an inhaler and all my usual stuff. I CANNOT EMPHASISE THIS ENOUGH. CARRY YOUR ADRENALINE. You can also buy super fun cases on eBay.

- Check that epi-pen is in date, set reminders in every electronic device you have for the expiry, and never get caught with an out of date one. In the same vein, I keep out of date ones (so long as they're not cloudy, check the viewing window) for up to 6 months just in case my in date ones aren't enough.

- Tell your friends. They'll find it great fun practicing with a trainer pen (you can get them for free from the epipen website!), you'll feel more relaxed knowing they know how to look after you, and it's a great chance to normalise an allergy that can seem terrifying. Also, you'll all have great fun jabbing each other.

- If you're going out clubbing and want to pull, just double check the other person hasn't been eating something you're allergic to. It's as awkward as hell, but hey if they like you enough to want to keep you alive when they kiss you, that's the kinda person who you don't mind making out with. Just sayin'. People are way cooler about allergies than you think they are. Also, people who don't respect the allergy pull the best faces, which are great for telling your friends about later.

- Find stuff you know you can have, and keep it with you. I have a dairy milk bar in my backpack for when my friends are having something cool that I can't have. I always feel guilty when my friends are eating healthy fruit salads and I'm cringing at the potential mouth pain, but I'm good with bananas so I'll have one of them, or some cucumber. For a good three years I carried a peeler in my bag so that I could have apples at break times with my friends- they thought it was hilarious, and I enjoyed many a peel-less apple.

- Find allergy buds to commiserate with. My flatmate is also allergic to nuts; one of my best friends is allergic to dairy. Nothing feels better than moaning about all the good looking food you've missed with people who are also missing it. They tend to also have allergen free recipes up their sleeve, which is amazing.

- Check menus before you go out to eat, or politely ask if you can eat somewhere you know you feel safe in. For me, I know that Wagamamas has always been brilliant with my allergy (despite having peanuts on the menu elsewhere). Nandos, Brewers Fayre, Pizza Express- all good in my books, but make your own safe books! Eating out is so much fun if you take an epi-pen trained friend and speak up for yourself. You are amazing, and you deserve amazing allergen free food. The anaphylaxis campaign website also has links to get translation cards for eating out abroad, when talking about allergies can be a lot more difficult.

- CHECK EVERYTHING. Unfortunately, recipes in long standing products (Cadbury mini rolls, Iceland pizzas just to name two) can change very suddenly and without warning. It's a pain in the ass to keep checking, but the more you do it the quicker you get, and avoiding the hospital and/or death IS good for you. I was almost caught out by peanut warnings on an Iceland Pepperoni pizza (what are you even doing, Iceland) until my sister spotted it.

- Learn a load of peanut related jokes to relax people around you. I am well used to the 'Oh, you're allergic to nuts? Guess you'll never have a boyfriend then!' 'Oh, you're checking the packet? But you don't need to lose weight, or count calories!' HEY GUESS WHAT, ALLERGIES MAKE US COOL. If you're still living and kicking ass with food allergies, you have my ultimate respect because this stuff is difficult.

- Practice being outspoken with wait staff. Trust me, they'd much rather you ask about your allergies and make your requirements clear than have you send food back because it has nuts on (been there, done that), be unable to eat and thus make them any profit (hello, every Chinese place ever), or go into anaphylactic shock at the table (that's just a lot of paperwork and agro nobody can be bothered to deal with.) Wait staff are normally fantastic, but if you're in doubt, ask to speak to the chef (they don't get to speak to customers much, they'll love it. It's a culinary challenge for them to beat.). If you're still in doubt, DON'T EAT THERE. There is plenty of great food to be had without dying for the chance.

- Try and get to know your symptoms. If you're under an allergy clinic (thank you, Southampton General you gorgeous humans), ask if you can do a food challenge with foods you know you're allergic to, so you know what to expect. I thought I would have hit nausea and vomiting before anaphylaxis, and boy was I wrong. I'd still have been stuffing myself with pointless anti-histamines until death if I hadn't realised my chest was closed.

1. Where do your symptoms start? Do you get hives? A rash? Itchy mouth? Itchy ears? Snotty nose? (Glamorous, I know.) My hives always turn up in the same place, and they're an excellent indicator something is about to happen.

2. How long do they last? I can have an itchy mouth for half an hour and then suddenly get much much worse. On the other hand, I can also have hives and be absolutely fine. Know which is which.

3. Which symptoms do you get and do you know which ones mean you need an epi-pen? (BONUS ROUND- if it's affecting your airway or consciousness, that's epi-pen time.)

4. Do you know how many epi-pens you need? I need two at the very least, despite having a strong reaction to adrenaline.

IF YOU HAVE ANY ADRENALINE WHATSOEVER, YOU NEED TO GO TO HOSPITAL. I had adrenaline for my allergic reaction in hospital, thought I was fine two hours later, and passed out on the way back from the toilet. Who knows what it's going to do. At the very least, they can give you more cool drugs or tell you how brave you are for sticking a needle in your own thigh. Good job.

Just remember that allergies are something people are totally able to live with, even if they are scary and a pain in the ass. 

There's a whole community of us sharing recipes without allergens in, talking about which restaurants have been amazing with allergies, warning each other about changes in ingredients. You do not have to miss out on anything.

 For parents of allergic kids:

It is as scary as hell having allergies or having an allergic child, but it is also totally manageable. I can happily say I have never missed out on anything- I went on all the school trips, I went abroad for swim camps twice, I go on holidays without my parents and I moved to London for university, all without a blip. I went on Brownie and Guide camps, Netball camps, plain normal camping.

It takes a lot of effort, yes. There is disappointment when everyone else is getting cake in their party bag and you get nothing. It's embarrassing having your mum talk to every single parent in the playground to check you can visit their house for tea, it's awkward having to take substitute food on planes and school trips, it makes you feel like the odd one out when teachers are checking on you. BUT.

It also makes you feel amazing for having your parents trust in you, for knowing they know you can deal with it. I was the coolest kid in school with my bumbag for my epi-pens on school trips. Days off school to go to the allergy clinic are super cool. Being allergic to lots of foods makes you a really creative cook. I am really good at recognising what ingredients a food has in it. I am so cautious that I can pick up my reactions to the first tingle, having been trained from an early age.

Teachers, restaurant staff- anyone you feel you have to trust with your child's allergy, are actually getting a lot better in dealing with them. Yes, you have to be super cautious- but talking about it helps so much. It normalises it. Practice with old epi-pens on apples or teddy bears for a bit of educational fun (yes, I am that boring.)

My allergies have opened up doorways I never would have considered otherwise. I am a medical student primarily because I was always so fascinated about what was going on with other people when I was in hospital. I am doing a BSc in Immunology next year, and I was first interested in that to find out what was happening in my own body. I got an A* in an Extended Project all about the social side of peanut allergies, which a lecturer has since decided to try and get it published.

There are plus sides to being stuck with a body that doesn't know what it likes and what it doesn't. You're gonna be okay.

Please if you want to talk allergies with me, or have any questions or anything, visit my blog here and leave a comment or I can be found on twitter @katiehodgie, 


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