Woman with rare syndrome allergic to 'almost everything' apart from four specific foods

A woman suffered malnutrition after a rare syndrome left her allergic to “almost everything” – including all but four foods, perfume, petrol stations and vapes.

Amy Francis-Smith, 32, began experiencing severe, unexpected allergic reactions to food and every day things in 2015. At one stage, she was so reactive she could only eat four foods – courgettes, rice, pears and beef – and her restricted diet left her “malnourished” with her “ribs sticking out.” She described eating as a “gamble” – trying to figure out what she could and couldn’t eat.

Amy says she became allergic to carbonated water, public transport, air fresheners and even the heat and cold. In 2017 she was diagnosed with mast cell activation syndrome – which causes a person to have repeated severe allergy symptoms. She also discovered she had Crohn’s disease and Ehlers-Danlos syndrome – a group of hereditary disorders that affect the connective tissues of the body.

Amy was eventually able to overcome her allergies and reactions through a combination of stress reduction, management of her nutrition and reducing inflammation. Amy, a senior architect and inclusive design specialist, from Leicester, East Midlands, said: “I had malnutrition as I was only able to eat beef, pears, courgette and rice for at least six months. It ended up being a gamble every time I ate anything. It was very much a case of finding out what I could and couldn’t eat.

Amy after allergy testing

“It was the start of a very terrifying few years. If something had such a strong fragrance and someone sprayed it, I couldn’t be in the house that day. I had to wear face masks before Covid made them cool.” Amy first realised something was wrong when she started reacting every time she ate lemon or peanuts.

When she had some tomatoes, Amy went into anaphylactic shock. This quickly led to more severe reactions – and at one point she suffered from reactions 50 days in a row. Amy had to drop out of her masters course in London and return to her family home in Litchfield.

She said: “I was really heartbroken that I’d had my career cut short and I couldn’t earn any money. I tried to go back to work, but it didn’t last long at all.” Amy took two years to receive a diagnosis. She added: “I was referred to allergy clinics but I was being told that I wasn’t allergic and I was making it up. A&E staff thought I might be poisoning myself on purpose or having a mental health crisis

“But if I ate something, I’d end up in hospital, so it was real. When you finally get that diagnosis it’s weirdly a big relief that you weren’t going insane. Mast cells are all over your body – for whatever reason mine had become activated. They release chemicals which causes the swelling, rashes and breathing issues. It meant that it affected every single organ.

“My liver wasn’t working – my spleen, my bladder was screwed. I had heart issues, my hair was falling out, my teeth were eroding quicker than they should have been. My feet and hands had neuropathy.” To make matters worse, Amy was ineligible for disability benefits and forced to find a way to make ends meet.

Amy’s first dinner out

She said: “I was still able to work but it was more that my body and energy levels wouldn’t allow me to work a typical 9-5 in the office. I sold all my stuff on eBay. Anything that didn’t have any sentimental meaning to me, it was gone. If it made me a couple of quid, I’d sell it.

“If I sold something for £50 that would be the best thing that would happen for a few months.” After lots of trial and error, Amy has been able to re-introduce foods into her diet. She explored different healing models to reduce her inflammation and manage her nutrition. She said: “I was supported by my parents and my partner. It spared me time to research, listen to podcasts, read books, blogs and search for different types of supplements or treatments.

“It’s meant that through a lot of experimentation, trialling nutrition, stress reduction and reducing inflammation, I was eventually able to complete my masters in Architecture at Birmingham City University and have a bit of money coming in. I’m gradually adding in more foods and gaining more strength. I’ve never been better. I don’t think I’ve ever had this level of health in my life before.”