How Allergen Guidance for Food Businesses has improved my life (For Anaphylaxis Awareness Week)

Eating out has always been complicated for many allergy-sufferers, myself included. My parents were always really keen to eat out as a family, so as to not let my allergy feel like a problem. However, it was not without challenge or concern. There are certain cuisines that are categorically ruled out, and when ordering food I would have to ask what the meal contained, as the allergens were not listed in many restaurants. Having to ask what the meal contained every time we ate out made us feel like a nuisance, for asking so many questions. You had to rely on the waiter advising the chefs about your allergy, and then on the chefs to ensure they didn’t decide to just sprinkle some nuts on the top of your food on a whim. There was a great deal of uncertainty as to what was in the food on the menu, and whether or not it was safe. Sometimes, the waiter would say a meal was safe and then return a little while later and say it was not, so it often felt like I couldn’t put my trust (or indeed my life) in them and their hands (and frying pans). This isn’t to say that I didn’t enjoy many meals out, but there was definitely a level of uncertainty.

All of this changed with the new Allergen Guidance for Food Business regulations introduced by the Food Standards Agency in 2014. Crucially, this includes having in writing which allergens are present in the food on the menu. This now means that the majority of restaurants have a separate allergen menu, which is a spreadsheet of everything on the menu against the 14 major allergens (and often includes vegan options too). I cannot begin to explain how much easier eating out has been for me since then.

…Actually wait I can.

All the uncertainty is gone. I can now categorically know whether a meal is safe for me or not. I have eaten desserts at restaurants!! That’s a big deal!! I feel confident that I am being catered for adequately, with reassurance that my concerns are valid. The physical presence of an allergen menu means that it is clear to the staff that there is an allergy-sufferer to be looked after, and I feel confident that my needs will therefore be relayed to the kitchen. Being able to see the full choice of what I can eat, instead of trying to work it out myself, means that I can chose things I would not have necessarily picked without the allergen menu, as I may not have been confident that they were safe. It is honestly a relief and a reassurance, meaning that allergy-suffers like myself can enjoy eating out in a safe and relaxed environment.

In short, these new regulations have meant that I have visited new restaurants with confidence, and been adventurous with my choices like everyone else. I think that’s the key: although there is a separate menu, the regulations allow me to feel like everyone else in the restaurant, in being able to look at the whole menu and have choice. It is a strange but wonderful combination of feeling like an individual whose needs matter, and just like everyone else without boundaries. It is freeing. Now, anyone fancy going out for dinner?

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What’s the research? (For Anaphylaxis Awareness Week)

Over centuries, huge amounts of research has been done into allergies that has lead us to the present day. This included the identification of the 14 major allergens and the development of the adrenaline auto injector. There is work being done as we speak, so I thought I would dedicate a post to this research, and studies that have recently concluded. As the cause of allergies remains a mystery, there is a huge amount of research, so I have narrowed it down to three studies that I thought were particularly interesting.

iFAAM (Integrated Approaches to Food Allergen and Allergy Risk Management, Pan-European Edition):

This project is the world’s biggest ever study of food allergies, lead by the University of Manchester and includes leading experts in the UK, Europe, Australia and the US. The Anaphylaxis Campaign also contributed to this project, saying ‘We have been actively involved in delivering the patient’s perspective on the issues involved in this project and organising focus groups and contributing to papers on incidence and severity of food allergies’.  This Project concluded in 2017, and the Anaphylaxis Campaign will be making certain findings public when they become available.

 

TRACE Peanut Study:

This study took place at the Royal Brompton Hospital in London and Addenbroke’s Hospital in Cambridge, and aimed to discover how much peanut is safe to consume to improve food labelling for the public. As we know from our lives of label-reading, food companies use ‘may contain traces of peanuts/nuts’ as a disclaimer in case the product accidentally contains peanuts or nuts. The project aimed to discover exactly how much peanut would cause an allergic reaction for those with an allergy by conducting food challenge testing on around 100 people. The focus area was on two ‘extrinsic’ factors known to influence allergic thresholds (exercise and tiredness). The Food Standards Agency (who commissioned the trial) will use the project to improve the clarity of labelling on food for peanut allergy-sufferers in the UK. The project is now concluded and we are waiting for the publication of the findings.

 

The ‘EpiPill’:

Researchers at the Nova Southeastern University, USA, are attempting to develop an oral pill which could replace the adrenaline auto injectors. The pill would go under the tongue to deliver adrenaline effectively and quickly. Apparently the pill would have a longer shelf life than epipens, and doses could be changed depending on the patient, rather than having either a child or adult dose. Previous attempts to develop this pill failed when it lost its ability to deliver adrenaline when ingested, but there is hope that this pill might be available in a few years time.

 

If you want to keep updated with news on research developments, I would recommend keeping an eye on the News section of the Anaphylaxis Campaign’s website!

Why are there still peanuts on planes and trains? (For Anaphylaxis Awareness Week)

Travel should be fun, exciting. An easy (although sometimes hectic) way to get from A to B. It is a chance to relax, to look forward to where you’re going, or to work in peace. Yet, for many allergy-sufferers, it isn’t that simple. Air travel is tricky, because the majority of airlines insist on selling peanuts on board flights. Granted, you can ask that they don’t serve peanuts on board, and some flights will do an overhead announcement for people to not consume food with nuts in on board the flight. However, in my experience this has always felt like a complication, as you have to ask at the check-in desk and more often than not it doesn’t get through to the cabin crew. So then you have to ask at the boarding desk, and then I’ve often had to ask the cabin crew again when on the plane. Then you have to rely on the rest of the plane listening to what they’ve asked and not eating nutty foods. So you end up (or I certainly do) having a stressful journey onto the plane, a stressful journey while on the plane, and the same on the way back.

Some airlines are better than others. EasyJet have been brilliant, you only have to ask once at the check-in desk and they take the nuts off the plane and do an announcement. British Airways are pretty hit and miss. They are never able to give me ANY food at all on a long flight, and are very inconsistent with their allergy policies. Last year, I went to the Netherlands, and on the way there they enforced their new allergy policy, which allowed me and my mum to get on the plane before anyone else (including first class) and find our seats and wipe them down with antiseptic to avoid any residue of the peanuts they serve, or nuts anyone else brought on. I was very grateful for this, and they also did their usual announcements. However, on the way back, they claimed to have not received the information from our check in, and so would not let us get on the plane first as we did on the way there! I actually ended up getting up the page of their own allergy policy and quoted it at them. Even then, we were only allowed on the plane after first and business class (which is not what the policy stated). We ended up feeling like a nuisance, rather than customers with important needs being taken care of.

Once, I travelled first class on a Virgin train (which was lovely to be honest) but they would also come down the aisle and offer either pretzels or peanuts to passengers. Luckily, no one wanted any, but it was really unnerving. As I am quite shy, I hate the idea of having to ask someone not to eat something because I’m there. So normally I wouldn’t say anything, and end up getting really panicked and trying not to breathe. I know that if I was more confident I could just politely ask them not to eat them, but I just find it really difficult.

It occurred to me recently that an easy solution to these problems is to simply not serve peanuts. I can understand people bringing their own on board, and that is easier to address by speaking to one individual person, and it would mean that there would be less of a chance of allergens being present. I know that this would be extremely reassuring for allergy-sufferers, as the presence of allergens onboard (combined with a handful of passengers being unreasonable) is actually really scary, and doesn’t allow you to feel relaxed. I just don’t understand why peanuts need to be served, especially given the recent publicity surrounding companies such as Pret a Manger, and simply the danger they pose to certain customers. There are other alternatives that could be served, such as crisps, which do not physically contain any allergens.

I know, however, that this is a big ask, and to be honest there is work to do on improving the allergy policies that already exist. Hopefully, there will be progress, but I think simply stopping the selling of them would solve a huge amount of problems, and would definitely improve passengers’ satisfaction and make them feel like they were travelling in a safe environment.

Adjusting to University with an Allergy (For Anaphylaxis Awareness Week)

Coming to university is scary no matter what. Often, you’re living away from home for the first time, with complete and total strangers in a city you don’t know. When I came to university I lived on my own so that I didn’t have to share a kitchen with people I’d never met (because apart from it being safer, I couldn’t face the thought of being that person who goes ‘Hi, I’m Evie. You can’t eat that…or that…or that’), and so I found making friends quite difficult. Apart from anything I’m really shy, so it has always been quite difficult for me to walk into a room and just talk to people. At that time, my allergy felt like a curse, because it had forced me to live on my own which made it even harder for me to interact with people. However, soon I found people that I trusted and were really good with my allergy. I also learnt a lot about how to handle my allergy alone for the first time.

The main challenge I had to overcome when I arrived at university was cooking for myself. I wasn’t exactly gifted in that area (and despite the help of my housemates, I’m still not), so it was a bit of a struggle at first. Not an easy task with an allergy, but I like to think I’ve learnt some good habits that will stand me in good stead. It can be difficult to know where to start, but I would always start with simple meals that you can make in batches so that you don’t feel like you’re constantly cooking! If you’re in a shared kitchen, this also reduces the risk of contamination with other students cooking, because all you have to do is reheat with no preparation of food.

Even though I didn’t share a kitchen in my first year, I have lived in a shared house with my friends for two years, so I can offer a bit of wisdom on shared kitchens. My friends are brilliant, as they don’t bring any food containing nuts into the house, and if they do it is sealed in packets and eaten outside the house. We are also lucky in our house to have two fridges, but we split them so that we have two shelves each, which I would definitely recommend doing. I also have a separate washing up bowl for my dishes, and a separate sponge. I think these are a really good idea to put your mind at rest if you’re nervous about shared washing up areas. The more obvious things are to make sure that you wipe down surfaces at the end of the day, to avoid an contamination. Ultimately, sometimes you just have to be brave if people cross a line with respecting your allergy, and everyone’s boundaries are different, but most people will just be innocently oblivious and won’t mind you telling them if you have a problem. Sometimes you have to be firm with people because, ultimately, anaphylaxis and allergies are life-threatening, and you have to make people understand that.

Another big part of the university experience is (you guessed it) alcohol. Obviously it doesn’t have to be, and I know plenty of people who don’t drink at all, it’s important to some more than others, and I know for a fact you can have just as much fun at university without drinking. However, I thought it would be a good idea to give some advice on alcohol nonetheless. I suppose it’s something people might not associate with allergies at first, but there are a surprising amount of drinks that contain nuts. Almond particularly tends to be in a lot of gins and spirits, so my advice would be to always look up the drinks menu if you’re going to a bar/pub for some drinks, and to stick to what you know is safe when clubbing (most ciders are safe, as are beers/larger). I always find a menu online and decide what I am going to drink or what my options are before I go out, and when I am at a club my go to tends to be a vodka and lemonade, which I know is safe. Basically, my advice would be to not try anything that you are unsure about, and do not let other people pressure you into drinking anything – they shouldn’t be allowed to do that whether you have an allergy or not.

I think my biggest piece of advice would be to just not let your allergy dominate your life too much. Generally, my allergy doesn’t impact my university experience a lot, and a large part of that is down to finding people I trust. My advice would be to get your allergy into a conversation early, so that people know about it from the off, so then you’ll always have people who could look after you if something happened. I feel safe knowing that I have friends who have my back, and know how to use my epipens if they needed to. University is tough, but it is also a wonderful experience, and your allergy shouldn’t get in the way of that!

10 Food Discoveries That Changed my Life (For Anaphylaxis Awareness Week)

Like most people with allergies, I spend most of my time checking labels on food. Over the years, you grow so bored of checking labels that you just stop occasionally and don’t bother. So sometimes I’ll think ‘what the heck’ and just read something I think I won’t be able to eat, and discover that I CAN. Food discoveries are brilliant so I thought I’d do a top 10 of the best food discoveries I’ve ever made.

  1. Mint Cornettos: When I was a child, it was hard to find ice creams I could eat that were fancy. I naturally assumed that I couldn’t eat cornetto ice creams because there were ones with nuts in, so the day my mum came home with a box of mint cornettos was amazing! They always feel like a luxurious ice cream, and mint is my favourite ice cream flavour anyway so needless to say, they’re pretty perfect!
  2. Magic Stars Hot Chocolate: One of my friends bought me some of this hot chocolate and tastes incredible! It has tiny magic stars in that melt to the bottom and it’s such a cosy drink. Magic Stars themselves actually have a nut traces warning on them, so normally I can’t eat them, but the hot chocolate doesn’t so you still get the magical taste (pardon the pun)!
  3. Mini Eggs: This was my most recent discovery. I’ve spent my whole life thinking that I couldn’t eat Mini Eggs because they had a traces warning on them, but this year they have been changed! I’ve honestly eaten so many I swear to god I’m going to turn into a Mini Egg…
  4. Waitrose Christmas Biscuits: This was the ULTIMATE discovery. I remember the very day my mum came home from the supermarket at Christmas with a huge ornate tin of assorted biscuits. I have never been able to eat a biscuit collection, because there is pretty much always a nutty biscuit included. I remember mum saying ‘Look I bought these, you can eat all of them!’ and I apparently asked in sheer disbelief ‘Even the ones in foil?’. In the ten years since, they still haven’t put a nutty biscuit in the selection, even when other biscuits have been replaced, and I still get them every year in bulk!

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    The Waitrose biscuit selection of legend
  5. Safari Cake (Sainsburys): For my birthday two years ago, I realised that Sainsburys sold nut free birthday cakes, so I bought one that was safari themed (complete with fondant elephant and lion!). It wasn’t the tastiest cake I’ve ever had, but it was very funny.

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    My Sainsburys Safari birthday cake!
  6. Sweet Freedom: These syrups and chocolate spreads are my favourite! It is so great to know I have a chocolate spread that is safe for me, and it’s a real treat for me. For more information about Sweet Freedom, take a look at my Favourites page.
  7. Galaxy: I remember being a child and my friend’s mum giving us all a bar of Galaxy chocolate, and I couldn’t believe I could eat such luxurious chocolate. To this day when I’m feeling stressed or unwell, I always get a Galaxy bar to make myself feel better.
  8. Crunchies and Curly Whirlys: These are together because I realised I could eat them on the same day. I was in a Cadbury outlet shop in Portsmouth, and on the off-chance I started reading all the labels on the chocolate bars, and discovered I could eat Crunchies and Curly Whirlys. I had pretty much stopped reading labels because I would just stick to the things I knew were safe, so it was a happy surprise!
  9. Betty Crocker: I have used Betty Crocker cake mixes for my birthday for nearly every single one. They are so delicious and easy to make, and I honestly can’t pick a favourite flavour! I’ve also used them at Christmas and most recently at Easter, when I made a carrot cake!

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    The Betty Crocker Carrot Cake I made for Easter
  10. Fig Rolls (Aldi): McVities used to have nut free Fig Rolls, which were always a treat for me as a child. However, at a certain point the allergen information changed and now they have a traces warning. I really missed having these, until I found Aldi’s own brand which are safe! They are that nostalgic treat for me, so it is really lovely to be able to have them.

Let’s Talk About Epipens (For Anaphylaxis Awareness Week)

This week is the Anaphylaxis Campaign’s Anaphylaxis Awareness Week, and I am going to be doing a blog post every day. Today’s blog post will be about epipens, which I feel is in need of greater discussion. As an epipen carrier myself, I am faced with questions about them from everyone from friends, strangers and even GPs. So much information is batted around, which is often incorrect, so I thought I would try to dispel some of that here.

An epipen or an epinephrine auto-injector is a needle of adrenaline which is used to treat anaphylaxis. It is given as an intramuscular injection into the outside of the thigh (NOT INTO A VEIN as someone once asked me). It will reduce the effects of the anaphylactic reaction, such as inability to breathe, swelling of the throat and tongue, which are potentially (and certainly in many cases) fatal if not managed properly, or even if epipens fail. It is the first stage of treatment until medical professionals arrive (always call for an ambulance if someone is having an anaphylactic reaction). This is partly why I get so angry with people in public who refuse to stop eating something if an allergy sufferer is nearby and cannot move away (e.g on planes), and say ‘just use your medication’, because using an epipen should be an EMERGENCY option, and putting yourself in a circumstance to use it involves putting your life in serious danger, which no one should have to suffer.

There are currently three different brands of epipens available in the UK: EpiPen, Emerade and JEXT. They essentially all do the same thing, although Emerade used to boast a longer shelf life. I have carried all three brands in my life, although EpiPen tends to dominate the market. I personally prefer EpiPen and JEXT over Emerade purely because the instructions and bright colours on these make them easy to find and use in an emergency.

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Two EpiPen auto injectors: the child dose of 0.15 mg (green) and the adult dose of 0.3 mg (yellow)

An epipen typically expires after one year, which means that new ones are required every year (or often less depending on the expiry date – I’ve been given ones that only last for six months!). The time of year when you need new epipens is always a nightmare, particularly in the last few years when there has been a serious supply issue. It took me nearly three months to get my last prescription, meaning that a pharmacist in Boots was genuinely concerned that I had no in date epipens to carry and issued me an emergency one for safety.  In August 2018, the FDA approved extending the expiry dates on some products by four months to relieve some of the pressure, but this is worrying as the adrenaline becomes less effective the older it gets. An epipen is safe to use until the adrenaline solution goes cloudy, but it would not be as effective, and would certainly not guarantee saving someone’s life. Many people are concerned about how Brexit is going to further impact this supply problem, as medical supplies are heavily reliant on other countries. There has been little update from the government on this issue (surprise surprise).

I was prescribed epipens when I was three years old after my first (and so far only) anaphylactic reaction to peanuts. I was given those with the child dosage of 0.15 mg, and instructed to always carry my epipens in pairs in case one failed or if I required a second dosage of adrenaline. This is very important if you carry epipens, as only carrying one could be a risk if it fails. It is reccomended that epipens should always be carried in pairs for this reason. My mum always made sure that we never left the house without them, with a special bag to put them in. As I got older, we had special insulated pouches to keep them in, so that they didn’t get too hot or too cold (which can result in them failing) – I have put a link to where I get my own from at the bottom. Even now, with a larger adult dosage, I follow the advice of the Anaphylaxis Campaign to carry my epipens in pairs. The fact of the matter is that it’s better to be safe than sorry, and having two doses of adrenaline is not harmful.

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Auto-injector pouches from YellowCross, which I use myself for my own

I have, however, had difficulty in the past with convincing doctors to prescribe me the correct number of epipens. I have met many who simply didn’t know their own guidelines, and I once had to have an argument with one who refused to prescribe me two pairs (which I was willing to pay for). I often find myself quoting their own guidelines to them, and I met one doctor when I first came to university who did not know that epipens are supposed to be carried in pairs! From my interactions, there seems to be a lack of knowledge amongst doctors about allergies and epipens, which doesn’t provide me with a lot of faith in their opinion. The Anaphylaxis Campaign is running a campaign called Anaphylaxis Information Matters (AIM) to better educate healthcare professionals in their understanding of allergies, and to raise awareness of the massive underfunding of allergy care (there are only 30 allergy specialists in the UK, equating to one specialist per 700,000 patients) which I have left a link to at the bottom.

The majority of people who die from anaphylaxis do not have an epipen with them. A survey conducted by the Anaphylaxis Campaign found that an alarming 44% of 15-25 year olds admitted to not always carrying their epipens. Given the size of them, it is to a certain extent understandable, and there is ongoing scientific research to turn the epipen into a pill to take every day (think of an antihistamine on steroids – pardon the pun), which would be ideal. Men have difficulty with the size of the epipens, particularly young men and teenagers who do not carry a bag, as there are few pockets big enough to accommodate an epipen. Additionally, people can be cruel, and many allergy sufferers (myself included) have been at the receiving end of bullying for having to carry medication. This discourages young people from carrying their life saving medication with them, and the Anaphylaxis Campaign is running a campaign called #takethekit which encourages young people to carry their epipens.

Hopefully, raising awareness of the importance of epipens will help people to better understand the seriousness of anaphylaxis, and to encourage the carrying of them. This will hopefully save more lives and bring the seriousness of allergies and the life-threatening nature of them into the public consciousness, ultimately providing a safer environment for allergy-sufferers.

LINKS:

YellowCross Epipen Pouches

Anaphylaxis Information Matters (AIM) Campaign

#takethekit Campaign 

 

Places to Eat: Edinburgh

In February, my friends and I went on a wonderful four day trip to Edinburgh. I had never been before and it is SUCH a beautiful city! I’m definitely going to do a more detailed blog post about the whole trip at some point soon, but a big part of what made the trip so great was the food that we had during our stay. I should point out that of the four of us there is one vegetarian and gluten-free, one vegan and dairy-free and one nut-free, so catering for all of us is a bit of a challenge, but the places we found to eat were perfect for all of us. So, here’s a run-down of our food experiences:

 

Topolabamba

On our first night in Edinburgh, we went to a Mexican restaurant called Topolamba. I had never been to a Mexican restaurant before (to my shame) and was slightly apprehensive. However, the restaurant’s allergen menu was really good, and the waitress advised us on which food would be best to order in terms of traces and contamination. I had a shredded beef burrito (which was DELICIOUS) and some crazy corn. The burrito was massive but it was so good I definitely could have had another and powered through the stomach ache! The waiting staff were brilliant and didn’t make our dietary requirements feel like a nuisance, which is always a sign of a good restaurant to me. They are a chain, but only have restaurants in Scotland, so if you’re lucky enough to be near them I would definitely recommend.

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My shredded beef burrito

 

Vittoria On The Bridge:

This is part of a chain of restaurants owned by the Vittoria group in Edinburgh. This one is an Italian restaurant, and I had a wonderful gorgonzola and pancetta pizza, which came with sliced pears on – which is surprisingly good! Apparently, the gluten free pizza bases were also excellent, as was the vegan cheese. The Vittoria group also label all 14 of the major allergens on their menu, which I have never seen anywhere else and was very encouraging. The food and atmosphere was wonderful – well worth a visit!

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My Gorgonzola and Pancetta pizza

I also had a dessert – which is quite rare for me when eating out! I had the delizia al limone, which was delicious.

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Delizia al Limone

 

Bertie’s Proper Fish and Chips:

This is another restaurant owned by the Vittoria group, so once again listed all 14 of the major allergens on their menu. Coming from the seaside, I love fish and chips, so I was pretty much in food heaven at this point. The portions were HUGE and came on really beautiful plates. We accidentally ordered quite a lot of food because we misjudged the portion sizes, but it was okay because you can take food away in box. The restaurant itself is just off Victoria Street, which was JK Rowling’s inspiration for Diagon Alley in the Harry Potter books, so I had a pretty fab day!

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All of our delicious food (and massive sides!)

 

Sugar Daddy’s Bakery:

I’m saving the best until last. Sugar Daddy’s have two bakeries in Edinburgh, and all of their food and cakes are gluten free. However, they also have a list next to all of their cakes saying what they are free from (nuts, wheat, dairy, soya, etc). There was a whole counter full of delicious and beautiful freshly-baked cakes, and I could eat all of them. I cried in the café (not even ashamed) because this has never ever happened to me before. Having that freedom of choice proved too much so I ended up having one of everything (three while I was there and four in a box to take home). It was honestly one of the best moments of my allergy life. They also do normal food, so you can go in there for breakfast or lunch too. They are only in Edinburgh, so I am dying to go back again to sample more cakes. If you are in Edinburgh you HAVE TO GO.

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Can you see why I cried now?