A bride-to-be plans to eat a potato for her wedding breakfast – because a rare condition means she suffers bizarre allergy-like reactions to most food.
While newlyweds normally tuck into plates laden with sweet treats, cakes and succulent meats, Rebecca Schult has resigned herself to celebrating with the same meal she has eaten for the past two years – the humble spud.
Schult suffers from mast cell activation syndrome, a rare disorder of the immune system, where her face can swell up, her mouth breaks out in blisters and she vomits if she eats most foods or comes into contact with different smells like strangers’ perfume.
Former historical conservator, who gave up her job because of the condition, Schult, 33, from Wootton, Northamptonshire, suffers symptoms similar to those of an allergic reaction, during an attack.
As a result, she can only eat six foods - oats, rice, chicken, beef, butter and skinless potatoes - without getting ill.
“Only eating a potato, without the skin and without any seasoning, really is the worst case scenario for when I marry my fiancé Oliver,” she said. “It’s pretty depressing and I am feeling anxious about it. We’ve already postponed the wedding by a year in the hope I’d be able to eat more.”
Schult and scientist Oliver Kirkby, 30, are due to tie the knot in October 2018 after getting engaged two years earlier.
Her wedding will not be the only important occasion at which Schult has forsaken tasty foods.
On Christmas Day for the past two years she has avoided the traditional roast, opting instead for a simple potato.
“It’s very difficult watching other people eating delicious food. You try to put a brave face on, but it’s a real wrench when people offer you treats and you can’t eat them,” she said.
Schult’s illness emerged in her teens, when she started having extreme reactions to random foods, such as tuna, chocolate and ice cream.
“It all started when I was 17 with a packet of Polos.
“I ate the pack and started sweating and feeling really rough,” she said.
“It continued over 13 years with random foods.
“When I had tuna one day, the roof of my mouth started burning and felt really hot. It just blew up.”
The swelling went down and Schult was tested for an allergy, but it came back clear.
Unable to get to the bottom of the reaction, medics thought she was suffering with anxiety and stress, and even suggested a psychological assessment.
But she knew it wasn’t a mental problem. It was a physical one which remained unresolved.
“By the time I was 26, l often felt really nauseous, but it was manageable,” she said.
Then, in October 2014, everything changed for Schult. On her way to Harry Potter World with her partner, red raw blisters covered her mouth.
“I’d eaten a banana and orange juice, as I didn’t have time for a proper breakfast,” she said.
“But as we were driving, I started to feel warm, really nauseous and then I couldn’t breathe.
“We stopped the car and I started being sick. I said to Oliver ‘I think there’s something really wrong with me’.”
Mistaking the illness for food poisoning, Schult took the next two days off work, but whatever she ate, the attacks continued.
“I realised it was probably something I was eating, as after every meal I was reacting like that,” she said. “I had four or five blisters covering my mouth and I was violently sick after just eating a kiwi.
“Every time I ate something, I would get blisters. I told myself I wasn’t allergic to things and it was food poisoning, but it just kept happening.
“Every mealtime was a nightmare. I was worried about what I ate and what it would do to me.
“After two or three weeks I realised that something must be seriously wrong with me, so I rang the doctor and demanded blood tests.”
But her tests came back clear, so Schult took matters into her own hands and started cutting out food that make her sick.
Over three months she lost two stone and was only eating oats, rice, chicken, beef, butter and potatoes without the skin on.
Since January 2015, Schult has only eaten porridge for breakfast, the inside of a potato for lunch, rice crispies for an afternoon snack and chicken or beef with rice for dinner, with no seasoning.
She can only drink water and rice milk, and has had to put her partying days behind her.
“People thought I was a hypochondriac, that it was a psychological thing,” she said.
“But I started googling my symptoms, and I found forums and groups of people with a condition called Mast Cell Activation Syndrome (MCAS).
“I had a specialised blood test for the rare disease at the Royal Surrey County Hospital and it came back abnormal, meaning I did have the condition. But I still wasn’t diagnosed for another year and a half, because it’s such a poorly understood disease.”
Until she was officially diagnosed in November 2016 at Royal Surrey County Hospital – one of the first patients in the UK to be diagnosed on the NHS –Schult’s bland diet continued.
Mast cell activation syndrome (MCAS) is an immunological condition where mast cells release chemicals, resulting in chronic symptoms, sometimes including anaphylaxis or near-anaphylaxis attacks.
“Giving you a list of what I don’t’ eat is almost impossible,” she said. “It would be easier to say what I can eat, which is very little. It’s a very bland menu that means I can’t go out to eat, to bars with friends. It’s like learning to be a different person.”
Now Schult takes medication to manage the disorder, but even the sniff of a strong perfume or someone’s food on the train can be a trigger.
“Every meal time, every trip out is like waiting for something to happen, waiting to see if it will be set off,” she said.
“It’s like having constant food poisoning.”
