I’ve been diagnosed with mast cell activation syndrome (MCAS). It means your immune system is triggered too frequently and can cause anaphylaxis, so you can become allergic to a huge range of things. It’s a rare, incurable condition.
I’d had some minor problems from the age of two, and knew I was allergic to nuts. But a crucial turning point came when I was 18, in 2017. I was at university in Massachusetts and decided to grab a mint chocolate-chip ice-cream with friends. Before I knew it, I went into anaphylaxis, and my friends rushed me to hospital.
From that moment, my body started to reject almost everything – my immune system started identifying all food as allergens. Doctors thought it could be stress-related or due to an ex-boyfriend who wasn’t careful about not eating nuts before kissing me.
I was hospitalised for a couple of weeks, and doctors ran trials to find food that I wasn’t allergic to. The only things were oats, eggs, bacon and water. For the next four or five months, that’s all I could eat – it was devastating.
I started taking mast cell stabilisers and antihistamines to stop my body’s extreme reactions, which gave me more freedom. I was eating more food, able to be around dogs and cats, and, overall, I was stable. I could also go to restaurants.
I also managed to go on holiday to the Caribbean. But while I was there I started eating a salad – after two mouthfuls my throat tightened and I went into anaphylactic shock. Given my medical history, the doctors decided to fly me home.
My immune system had overreacted again, and my allergies changed once more. The only things that were safe were oats and water. I was losing a lot of weight, and the doctors wanted to find me something more nutritious. A specialist came up with a vanilla hypoallergenic powder formula that contained sufficient amounts of vitamins, minerals and calories. It was difficult to adjust to such a limited diet again – but I considered myself lucky.
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Nearly seven years later, I can still only have water, oats and the formula. To cope, I’ve experimented with ways to cook. I started documenting my experiences online to raise awareness of the condition, and strangers have given me great ideas to introduce more variety in my food, like making oatmeal cookies or oat pancakes.
I’ve had to make huge sacrifices in my life. I can’t be near any pets, feathers or wool. I’m a healthcare recruiter, and work from home to minimise daily stresses. I have to get creative when meeting friends because most people aren’t pet-free. My friends keep a spare set of clothes in a ziplock bag and change into them before they see me. It also made dating incredibly hard – people have to avoid eating for three hours before kissing me, in case there are allergens in their food. My boyfriend of eight months is really supportive and eats the same food as me whenever we are together.
Despite it all, I like to explore: I take walks in the park, ice-skate and go out for days on a boat. I’ve just had to become a very good planner. I still enjoy going out to eat, but I take a box with my food in it, and cutlery from home. While I can’t risk getting on a plane any more because of airborne allergens, I can travel by car with my family. I always have medication on hand in case of an emergency, like EpiPens, Benadryl and inhalers.
My condition has made me a lot more compassionate towards people with hidden disabilities. I’d like to think being open about it can help change the way people interact with others, and accommodate allergies of all kinds.
I know my situation isn’t ideal, but I always remind myself of the positives – my supportive friends and family, the formula that keeps me nourished, and all the things my body does allow me to do.
In terms of the future, I’m working with my team of doctors to reintroduce new foods. It’s been a long and gruelling process, as all of the foods I’m trying to reincorporate have caused me to have scary and debilitating reactions. I am hopeful that one day I’ll be able to expand my diet, but there’s no guarantee. I just try to get through each day.