Me holding my epipens and antihistamines.
Becky: Allergies and other illness Uncategorized

Living with a severe allergy

First Reaction

My allergy has been a source of anxiety for me ever since my very first reaction in February 2005. However, this anxiety became uncontrollable and depressingly debilitating a few years ago. Before I tell you about why and what happened, I’ll give you a bit of background, and write a bit about what anaphylaxis is.

I was 9 years old, when brief contact with a nut for just a few seconds triggered an allergic reaction. Although I didn’t actually eat the nut, within 10 minutes or so of touching it, I had intense stomach cramps (along with diarrhoea), my lips and eyelids swelled up, and my eyes became bloodshot. I remember spending the next few hours feeling nauseous and tired. After my Mum took me to the doctor, I had some blood tests, saw an immunologist, and was diagnosed with anaphylaxis.

Diagnosis

Through the immunology tests, an allergy can be graded on it’s severity. This is done by measuring the levels of antibodies, called Immunoglobulin E (IgE) in the bloodstream. If you have an allergy, your immune system overreacts to an allergen by producing IgE (there is a specific type of IgE produced for each different allergen). The higher the level of IgE, the more serious the allergy. This result is then used to grade the allergy from 0-6, with 0 being no reaction, and 6 being severe and potentially fatal.

Here’s how the results are interpreted and graded:

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I had a result of 246 for cashew nuts. So, basically, cashews would kill me. Even a tiny piece of one could be fatal. I am graded a 6 for cashew and pistachios, and 4 for all other nuts (peanuts, hazelnuts, almonds, Brazil..).

About anaphylaxis

Allergies are caused when the body mistakenly makes an antibody (IgE) to ‘fight off’ a specific food. When that food is next eaten (or sometimes is just in contact with the skin) it triggers an immune system response which results in the release of histamine and other substances in the body. These substances cause various symptoms, depending on where in the body they are released. In anaphylaxis, the immune system chemicals (including histamine) are released into the bloodstream and throughout the body, causing a ‘systemic’ reaction.

The symptoms of anaphylaxis usually occur within minutes of exposure to the trigger substance (allergen) but sometimes an hour or so later. Anaphylaxis is a life-threatening medical emergency and can be fatal within a very short time of the onset of symptoms. This is why immediate treatment is so critical.

The symptoms (all of which I’ve unfortunately experienced) include:

  • Swelling of tongue and/or throat
  • Difficulty in swallowing or speaking
  • Vocal changes (hoarse voice)
  • Wheeze or persistent cough
  • Difficulty breathing or noisy breathing
  • Stomach cramps and diarrhoea
  • Nausea and vomiting
  • Hives/ rashes (which often look like stinging nettle rashes)
  • A fast heartbeat
  • Feelings of anxiety and confusion
  • Dizziness or collapse / loss of consciousness (due to a drop in blood pressure) ( floppiness in babies)

The impact of allergies on mental health

I’ve always been vigilant about my allergy. My immunologist at the hospital, and my parents made sure that I understood the importance and seriousness of it from a young age. Straight away, I learned to check the ingredients of everything I ate, and I began wearing a medical alert bracelet. My parents also made sure I took responsibility for carrying my Epipens (emergency adrenaline auto-injectors).

I had years without having a significant reaction. Then, that changed one evening in a restaurant (a popular chain, which I won’t name!) when I was eating with friends. I ordered a margarita pizza and garlic bread. As always, I told the waiter about my allergy and its severity. He assured me he’d let the chef know.

Within minutes of tucking into my meal, my lips began tingling, my stomach started cramping and I felt weak and nauseous. I knew what was happening straight away and took an antihistamine. For anaphylaxis you have to chew the tablet and let it dissolve in your mouth; this way it’s absorbed through your mucous membranes (gums) and gets into your bloodstream much quicker than going into the stomach and being digested that way. Note: these tablets taste absolutely rank.

Anyway, I went to the toilets in the restaurant, washed my hands and face, and swilled my mouth out. I didn’t feel that it was severe enough at this point to need my EpiPens. We told the waiter what was happening and he went and spoke to the chef. When he came back, he flippantly told us that my garlic bread was prepared and cooked alongside someone else’s garlic bread, which had pesto (made with nuts) on it. It shocked me that the chef was either so careless or so uneducated. Cross-contamination should be REALLY basic stuff for a chef. By means of apology for their potentially fatal error, they offered me a voucher to return for another meal free of charge. I declined. My confidence in eating out was seriously knocked.

A reaction that was serious

A couple of years later, in December 2014, I had my most severe reaction. I was eating a supermarket’s own brand ready meal (fancy dining, I know!) and some garlic dough balls (made by another popular, big brand). Neither of these things had any mention of nuts in their ingredients list or allergy warnings. Not even a mention of ‘may contain traces of nuts’. After a couple of mouthfuls of each, my lips started tingling. It got worse and felt like I’d eaten something super spicy, then they became numb. Before I knew it I was feeling really unwell. I felt sick, had horrendous diarrhoea (sorry for sharing that!), I was anxious and my head was pounding. I felt dazed, completely exhausted and lethargic and could barely keep my eyes open. So, I chewed an antihistamine and after about half an hour the symptoms eased.

The gastrointestinal symptoms weren’t too bad, apart from the residual pain and I was now more alert. Having already arranged to pick a friend up and give her a lift, I set out thinking it was all over. I’d been in the car about twenty minutes, when suddenly I developed a cough. My throat felt tickly and strange. I pulled the car over and a minute or two later, I felt some resistance when I was breathing in. Every time in inhaled, it was making a wheezy noise; I was really beginning to nail my Darth Vader impression. Seriously though, I started to panic as drawing in a breath became more uncomfortable and my airways felt tight. Now, at this point I absolutely, 100% should have used my emergency EpiPen. But I made a stupid decision not to, and to dissolve another antihistamine in my mouth.

Not that there’s a good time to have an anaphylactic reaction, but this was particularly bad timing. That year, I’d been seriously ill with a variety of bacterial and viral infections, and inflammation of my heart muscle which resulted in me being admitted to hospital. At the time of my anaphylactic reaction, I was on beta-blockers to control my heart rate, and nine months of hospital appointments and tests had taken it’s toll on me. It sounds bizarre because I was having an allergic reaction that could kill me, but I was terrified that the adrenaline injection (my EpiPen) would have a disastrous effects on my already compromised heart. It was like a choice between the devil and the deep blue sea.

Anyway, when I got home and saw that my face looked like it’d had stinging nettles rubbed on it, I called an ambulance. The paramedics came and gave me some more medication, and monitored me for over an hour. My breathing improved, and miraculously, despite not having used my EpiPens, I was ok and the reaction subsided.

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Losing control

Unfortunately, the psychological effects lasted much longer than the immediate physical ones. Following the reaction, I became stupidly scared of eating. It shook me up and really got into my head. If food that had no allergy warnings on it caused that reaction, how would I know that anythingwas safe to eat? I was only eating really basic, raw bits of food like plain potatoes (without even some butter), the odd bit of fruit and the odd piece of dry bread. I’d have one bite of the food and then wait half an hour to see if I had a reaction before eating the rest. This went on for weeks. I rarely managed to eat a whole potato or piece of bread, or fruit. After every single thing I ate, I would secretly have an antihistamine ‘just in case’.

The anxiety and fear took over my life. With most anxieties, you know deep down it’s probably irrational. But this was different. It was evidence-based. It seemed logical at the time. It seemed the reasonable, safe way to behave. Despite the best efforts of my Mum, who had realised what was happening, the weeks turned into months. My weight dropped from almost 8 stone, to 5 stone 9 pounds. This was weight I’d only just managed to regain after all the illness, infections and heart problems. Eventually, I realised I needed help and I went to the doctor. They referred me for immediate counselling, during which I had Cognitive Behavioural Therapy.

With sessions twice a week, then once a week for a while, things improved. We also worked through a lot of things caused by the illness. Now, I’m still much more cautious than I was before these reactions, and I rarely eat out, but I’m much healthier and have a better relationship with food and eating. Last week, I even managed a ‘cheeky Nando’s’ with my better half, Dan. This was the first meal I’d eaten out in years, that wasn’t basic pub grub or a McDonalds. I was really tense the whole time and felt like crying before we went in, but I DID IT! The staff there were incredible, and now I’m actually looking forward to going again.

Attitudes towards allergies

People often think that those with severe allergies are dramatic or over-cautious. This has definitely been a cause of some social awkwardness for me plenty of times. As my reaction in the restaurant, and to the ready meal prove, even a absolutely minuscule trace of a nut, or even secondary contact with a nut, can be enough to be serious and potentially life-threatening. If I’d eaten all of either of those meals, it’s likely I wouldn’t be here today. Even the use of antihistamines and an EpiPen doesn’t guarantee survival. That’s why compliance, understanding and carefulness are imperative.

The chef in the restaurant that caused my reaction is a perfect example of how allergies aren’t taken seriously enough. There’ve been several big stories in the media recently about the shattering consequences that these attitudes, complacency and lack of education can have.

Below, I’ve put some links to a few of these stories about allergies. I hope that sharing them will raise awareness and spread education about anaphylaxis. Feel free to send this blog to your friends and share it on social media (if you’ve successfully managed to read this far!).

Death of teenage girl after eating Pret A Manger baguette.

Young woman’s  life changed forever, after an anaphylactic reaction left her paralysed due to brain damage.

Girl, 4, went into anaphylactic shock and lost consciousness on a plane after selfish passenger ignored three warnings not to eat nuts on board.

Love,

Becky x

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