Until recently, Elian could only eat six different foods. Eggs, dairy, nuts or lentils could kill him – and he’s far from alone. What’s behind the explosion in childhood allergies?

'He has to have a life, we have to take that risk': children living with extreme allergies

Kristina Valeix is cooking dinner for her children in the bright, open-plan kitchen of their flat in south London. Every meal she makes calls for meticulous planning and attention to detail. The steamer must be stacked in the right order so foods can’t contaminate each other. The milk must be put back on the correct shelf of the fridge. Her husband fried an egg the other day, and Kristina will never use that frying pan again. Until recently, she fed her youngest son only six foods.

Kristina doesn’t have an anxiety disorder; she says she isn’t an over-accommodating mother catering to a fussy, spoiled child. Elian, three, would love to be able to eat the meals she serves to Maxim, eight, and Bella, four, but his allergies are so serious that those meals could kill him.

“I know some people think I’m a hypochondriac, or that I’m just being overprotective,” Kristina tells me as she peels potatoes, “but he could die because we’re being careless.” A few metres away, Elian is lying on the floor of the living room with his big sister, pushing his Thomas trains, oblivious to the dangers that could lie in his supper.

Ask what Elian is allergic to and Kristina takes a deep breath: eggs, dairy, nuts, peas, lentils, beans, leeks, lamb, turkey, garlic, chickpeas, sesame, rice, oats, barley, cats, horses, dogs, antibiotics… “It’s probably easier for me to tell you what he can have,” she smiles. “He can have the root vegetables – carrots, sweet potatoes, potatoes – but not all of them. We tried parsnip and whooom!” She splays her hands around her face. “That didn’t work. But he can also have tuna, salmon and chicken. And cod, now,” she adds, gratefully.

Elian’s serious reactions start with vomiting, then red blotches appear on his face and begin to spread all over his body. “They itch like crazy. His tongue starts coming out. Then he’ll get floppy and say, ‘Mummy, I’m really tired.’” If it gets to that point, it’s anaphylaxis. Elian has six EpiPens with adrenaline that could save his life, and he takes antihistamine every morning and evening. Kristina’s vigilance means the most frightening reactions are very rare, but she worries that no one takes Elian’s allergies as seriously as she does. “When he has bad reactions, I take pictures and circulate them to the family, as evidence,” she says. “It’s probably my own insecurity. It’s just so isolating.”

But Kristina is anything but alone. In the past decade, allergic conditions (including eczema, hay fever and asthma) have increased fivefold in the UK, according to the Anaphylaxis Campaign. At least 6% of children born in Britain today will develop a food allergy, and the campaign is calling for EpiPens to be made available in every British state school. In every year since the 1990s, there has been a worrying surge in childhood food allergies, with the UK near the top of the league tables worldwide. Many believe there is something about how we live now, in Britain, that is fuelling this sudden increase.

Sceptics, on the other hand, argue that the numbers have been distorted by the worried well, and by precious parents with food phobias who want their children on special diets. Over the same period, there has been a corresponding explosion in more nebulous food intolerances and the idea that certain foods, such as wheat and dairy, should be avoided. Intolerances cause digestive problems several hours after eating, whereas allergies are immediate immune responses: the body treats a harmless substance as a threat and overreacts with potentially fatal consequences. But instead of finding the sympathy that other chronic and life-threatening childhood conditions receive, allergies are often met with cynicism and sometimes outright dismissal: they are “first-world problems”.

If it is true that educated, well-off families are often better represented in allergy clinics, this may be because parents have to lobby hard to get a referral to a specialist. There are fewer than 40 paediatric allergists in the UK, and children often have to wait months to be tested at an NHS clinic. Outside London, provision is very poor. NHS hospitals in England dealt with 20,320 admissions for allergies and allergic reactions between February 2013 and February 2014, and most of those were emergencies. Allergies kill 20 people a year, and the Anaphylaxis Campaign thinks many more allergic deaths are being misrecorded as asthma attacks or heart failure.

For the families living with a severely allergic child, managing it is a daily struggle. How do you feed a toddler who can tolerate only six foods: potato, sweet potato, courgette, chicken, tuna and banana? “I Googled everything,” Kristina says, climbing up to reach a cupboard next to the fridge. “I found this on Amazon: sweet potato flour from the Caribbean, and potato-based powdered milk from the States.” Every morning, she’d bake Elian special bread using mashed banana and potato starch. “I wanted something to fill him up, and that did it. It was like cement.

“I bought every device. If you look around the kitchen, up there is a dryer for drying out banana pieces so they have a different consistency. Over there’s a fat-free fryer, because he couldn’t have any oil. I had a special machine that could turn frozen bananas into sorbet.” When visiting family in Belgium, France and Germany, Kristina came prepared. “I took all the gear, I cooked every single day. It was crazy.”

Then there’s Elian’s skin. He has steroid creams for his severe eczema, specially mixed for him by the local hospital, and the shelves in the bathroom are stacked high with emollient creams that his mother slathers on him several times a day. She constantly monitors the temperature of the children’s bedroom and ensures their bath water isn’t too warm so it doesn’t inflame Elian’s skin, though it’s always too cold for Bella. She brings towels and bed linen for him whenever they stay away from home, washing them herself with soap-free cleanser.

I know some people think I'm a hypochondriac, or that I'm just being overprotective Kristina Valeix

Kristina breastfed Elian until he was two and a quarter, to give him a decent chance of being nourished, restricting her own diet so he could tolerate her milk. “When his teeth came through, he bit proper, big, bleeding holes around my nipples. Then I got mastitis and I couldn’t take any antibiotics because he’d react to it through my milk. It went on for ever. I used to cry and scream while he fed. I couldn’t see any way out of the quagmire.”

Gradually, Elian was able to tolerate small quantities of soya milk, oil and wheat. “Suddenly, he could have pasta. And I could fry things for him.” Kristina beams. “That was like heaven.”

Managing Elian’s allergies is still a full-time job; Kristina often has to look after the three children on her own because her husband’s work, in advertising, keeps him regularly abroad. “We can keep him at home under wraps or we can give him a life,” she says. “He has to have a life, we have to take that risk. But if he died in someone else’s care, it would be my fault. I would see it that way.”

Elian’s allergies are extreme, but in many ways he is typical. There’s a family history of asthma, eczema and food allergies. Boys are more likely to suffer allergies than girls, and there is some evidence to suggest that babies born during winter, as he was, are more prone. Caesarean babies such as Elian are often over-represented in the statistics, too. So if there are patterns, can we explain why there’s been such an explosion in food allergies over the past two decades?

Unfortunately not, says Dr Adam Fox, consultant paediatric allergist at Guy’s and St Thomas’s hospital. “Some of it is probably around our changing environment with regards to infections. There’s also a large genetic component in there. There are other important factors such as age of weaning, the food we’ve got in our home environment, and the amount of eczema that’s around. It seems to have been a perfect storm of a number of different factors coming together that has led to this remarkable change in disease pattern in a relatively short period of time.”

The best known explanation, the hygiene hypothesis, says we’ve become too clean: born into sterile environments and growing up in dirt-free homes with safe drinking water, our children aren’t exposed to the harmless microbes and parasites that help develop a properly regulated immune system that won’t overreact to harmless substances.

Have I got hay fever – or another kind of allergy? Read more

It makes intuitive sense, Fox says, “but the evidence has not been in any way consistent about this”. If hygiene accounted for the allergy epidemic, he says, then the youngest children in a family, such as Elian, would be the most exposed to bugs brought into the home by their elder siblings, and the least likely to have allergies, which isn’t always the case. Plus, countries such as Switzerland, famed for their hygiene standards, would be top of the allergy league tables, which they aren’t.

There’s also the vitamin D hypothesis: we’ve become afraid of the sun and live sedentary lives indoors in colder climates, so we’re deficient in vitamin D. Again, the evidence isn’t conclusive, and both very high and very low levels of vitamin D have been associated with increased allergy. “A lot of theories have entered urban mythology, but when you examine the evidence behind them, it’s not convincing,” Fox says.

Bacteria influence our digestive systems as well as our immunity. “Children with allergies seem to have a different make up of gut bacteria from children who don’t,” Fox says. “There’s a suggestion that what’s in your gut can be influenced by very early life events – you’ve got to get in very early, or you’ve missed the boat – things like whether you’re born in hospital, whether you’re a Caesarean. You pick up gut flora on your way out through the birth canal. Being born Caesarean means you miss out on a lot of that.”

Fox is involved in a study in which babies with serious milk allergies are given hypoallergenic formula with added probiotics to see if they grow out of their allergies faster. But probiotics are fraught with controversy. “We don’t really have enough evidence for the effects of probiotics on anything,” Fox says. “There are literally thousands of them. Which strain would you use? When would you give it? How much would you give, and how long for?” And even if they do find useful results, the most interesting strains are owned by corporations that control their use.

The science of allergies is still relatively young. “We don’t have the legacy of hundreds of years of understanding the basics and the natural history that other specialties do,” Fox says. “This is still the ‘wild west’ to a degree.” That leaves the field open to exploitation from those eager to cash in on an expanding market. Google “allergies”, and you’ll be met with offers of antibody analysis, hair-strand tests, tests to measure electrical conductivity in the body, as well as numerous solutions ranging from homeopathy to ionising machines that emit charged particles into the air. Many of these, Fox says, “are very much pseudo-science, very easy to get hold of and deeply tempting. Even if you’ve got quite severe allergies, your chances of seeing a specialist are very remote, which means that you’re far more liable to be open to these messages.”

***

Facebook Twitter Pinterest Daniel Lassman, nine, is allergic to eggs, dairy, seeds, pulses, animals. He never leaves the house without his bumbag full of medication. Photograph: David Yeo/The Guardian

In an upmarket burger chain in Waterloo, south London, nine-year-old Daniel Lassman is having lunch before his annual allergy test at St Thomas’s hospital.

“We eat out a lot,” his mother, Sarah, says. “Daniel’s a real foodie, aren’t you?”

“I can make apple crumble, I can make cakes, biscuits, pasta bolognese,” Daniel says, proudly.

“He will watch cookery programmes and work out for himself how to replace certain ingredients,” his mother adds. “There’s only one thing I’ve decided it’s impossible to make…”

“Meringue!”

“Everything else, you can find a way around it.”

Tall and strong for his age, Daniel is determined to live a normal life, but his allergies have left him hospitalised several times with anaphylaxis. “He looks like a rugby player, but could be floored by a lentil,” Sarah says, deadpan.

Eggs, dairy, seeds and pulses could kill him, but animals are worst of all. He fell unconscious in a house where a cat had been, even though the cat wasn’t there at the time. “It had wooden floors and she’d cleaned before we arrived.”

The waitress arrives to take our order. There’s only one item on the menu Daniel can have, and even then he has to interrogate her before he can order it safely. “Can I have a classic burger with no mayonnaise and no sauces, please, with some chips, thank you. What’s in the onion rings?”

“Sliced onions fried in batter,” the waitress says.

“What’s in the batter?”

“It’s not got any dairy in it?” Sarah chips in. “No eggs?”

“Is the problem lactose or eggs or both?”

“Well, it’s eggs and milk.” Sarah sounds weary: lactose is the language of food intolerances, and it’s the milk protein, not the lactose sugar, that’s dangerous for Daniel. (“Milk is a fashionable allergy,” she tells me later. “Everyone’s bloody allergic to milk now, aren’t they?”)

The waitress breathes deeply. “I’ll double-check.”

“And your buns don’t have sesame seeds on them, do they?” Sarah asks.

“They don’t. They are egg-glazed, because it’s a brioche.”

“That’s all right, though, because they’d be baked,” Sarah says to Daniel. (Baking breaks down some of the proteins and makes milk and egg easier to tolerate.)

The waitress heads to the kitchen, bemused.

Daniel never leaves the house without his black bumbag. He unclips it and opens it on the table. There’s an inhaler, two bottles containing different antihistamines, and two EpiPens. These adrenaline injectors have a limited shelf life and are expensive, with GPs increasingly reluctant to prescribe spare ones, but Sarah has been vigilant at ensuring he has as many as possible. As well as the two here, there are two for him at school, two with his au pair and two more at home. He’s had to use them at least four times in the past.

“I’ve done it in Cyprus,“ Daniel tells me.

“Grandma did it in the back of the car,” Sarah adds. They’d been at a buffet, and the food Daniel ate was supposed to be safe, but the other diners had been mixing the serving spoons, contaminating the dishes. “Never go to a buffet. You only learn once, and you learn quickly.”

Then there was the incident at a Lebanese restaurant in central London. Daniel was four and a half and Sarah had taken him out to buy his first school uniform. It was a hot day, Daniel was thirsty; they ordered a mixed fruit juice after the waiter assured them it didn’t contain any dairy. It looked cloudy, but they put that down to the banana. He had a couple of sips and started to cough. The colour drained from his face. They rushed him to hospital. Then they sued the restaurant.

“They settled pretty fast, didn’t they, Daniel?” Sarah laughs. “It wasn’t a huge amount – £1,800 or something. They picked on the wrong person. I’m a lawyer, my dad’s a lawyer. It wasn’t the world’s most awful reaction. If it had been worse, my attitude would have been different.”

She tells me about seven-year-old Deja Vacey Hay from north London, who had a milk allergy and in 2008 died after drinking a carton of fruit juice that contained milk. “People don’t realise anything can kill. That’s the problem.”

Sarah is a formidable presence. Before Daniel can go to any of his friends’ homes, she sends their parents a three-page letter detailing what he can’t have, a list of suggested meals, and instructions on what to do if he has a reaction. Does it scare people off?

Sarah laughs. “Some people mind. I know that Daniel hasn’t been invited to some things because of the allergies. We tend to host a lot.”

Like Elian, Daniel shares many of the classic characteristics of a child with allergies: the family history of hay fever and eczema, the winter birthday, the Caesarean delivery, infant eczema. But the reason behind his allergies is still a mystery. “The hygiene hypothesis is bollocks,” Sarah declares. “It makes me cross. How clean is my house? I’m a normal person!”

We walk to St Thomas’s, little lights flashing in the soles of Daniel’s trainers as he bounces down the street. “They are going to stick pins in me,” he says. “They are going to put blobs of stuff that I’m allergic to on me.”

The skin prick test is the mainstay of allergy medicine and hasn’t changed for decades. A drop of solution containing an allergen will be placed on Daniel’s skin, which will be pricked with a needle through the drop. If he’s allergic to it, his skin will swell where it’s been pricked. The likelihood of reaction can be measured by the size of the swelling, but not the level; there is no way of knowing if an allergen will cause sneezing or anaphylaxis.

It turns out Daniel is no longer allergic to nuts, but his reaction to milk, lentil, mustard and poppy seed is worse

Lime green chairs and plastic toys line the bright corridor of the allergy clinic. Every child waiting here today is a boy. One sits with a sleeve rolled up, wincing as he tries not to scratch the welts on his arm left by the skin test. A toddler howls, his face covered with eczema, as his mother cradles him. We can still hear him as we go in to see the consultant, Suzana Radulovic.

She runs through Daniel’s allergy history. “How’s your rhinitis? Do you still have hay fever?”

“He does, but that’s the least of our worries,” Sarah snorts.

“Do I have to do the skin test?” Daniel implores.

“It’s really useful,” Radulovic says gently. “It can help us to help you broaden your diet.”

Daniel is terrified. The nurse writes the numbers 1-15 on his arm in pen. “It tickles!” he squirms. He’s going to be tested for egg, milk and a wide range of pulses, seeds and nuts, and he watches as droplets are placed next to each number.

“Daniel, I need you to stay nice and still so it doesn’t get mixed up,” says the nurse. Sarah is over his shoulder, kissing his head, popping jelly beans into his mouth, holding his arm firmly. But he stares at the needle, buckling, contorting, his face red. Soon enough, it’s over. “There you go, Dan. Easy,” she says.

We have to wait 15 minutes to see how he reacts, but as soon as we walk out of the consulting room his arm is coming up in huge welts. Daniel screws up his face. “I really want to scratch it! So itchy!”

They play guessing games as they wait. “I wonder what number 14 is?” Sarah says, marvelling at a swelling the size of a 5p piece.

“Three to nine are looking good,” Daniel smiles. “They’re nuts and basically nothing is happening.”

It turns out that Daniel is no longer allergic to nuts, but his reaction to milk, lentil, mustard and poppy seed is serious, worse than the last time he was tested. His face darkens. “Why are they going up?”

Sarah strokes his back. “It’s a bit of a bummer, isn’t it?”

Radulovic is hopeful: nut allergies are the hardest to outgrow, and if they use more milk and egg in baking, he may well overcome those, too.

But Sarah looks doubtful. “It can be managed,” she says, striding away from the consulting room. “There are people on the Mumsnet allergy forum who home school their kids and have never been to a restaurant because of allergies. That’s really sad. Every time I read something like that, it makes me more intent on showing that it’s possible to lead a full life.”

***

These families are determined to do everything right for their allergic children. But could this desire to do things correctly go some way to explaining the allergy epidemic? Groundbreaking research published this year suggests that advice from the government, the World Health Organisation and self-styled child nutrition specialists may have contributed to the creation of the allergies we seek to avoid.

Until 2008, the Department of Health recommended parents avoid feeding their children peanut products in their first year, and told mothers with a family history of allergies to avoid them during pregnancy and breastfeeding. “The guidelines were not based on sufficient science,” says Gideon Lack, professor of paediatric allergy at King’s College London.

His research suggests the solution for allergies may come from doing the opposite of what’s intuitively sensible. Trials on 628 babies prone to developing allergy – with a family history of allergy and early-onset eczema – found that introducing peanut into their diet early cut the risk of peanut allergy by more than 80%. It’s the first time researchers have managed to reduce the development of allergies.

“We have delayed weaning and the introduction of a lot of solid foods into the infant’s diet,” Lack says. “Well below 15% of the population will have had nuts in the first year of life, eggs and wheat are introduced much later, sesame is introduced very late. We can go into the reasons behind that: there’s been prolonged, exclusive breastfeeding on the one hand, promoted by the WHO, and then there’s all sorts of food phobias that I think are a major contributor.”

Lack says allergy develops through the skin, and that eczema makes children more susceptible. When young babies have an impaired skin barrier, they are more sensitive to dust in the home that contains particles of the food eaten around them. “It’s the foods in the environment that the baby is exposed to in the skin that set up the allergy. That’s why it’s critical that the foods the family eats are introduced into the baby’s diet.” Introduce the foods before the baby has a chance to become allergic, Lack argues, and the baby will be able to tolerate them. But current government advice says babies should be exclusively breastfed and weaned only at six months old.

“As a paediatrician and paediatric allergist, I’m a big fan of breastfeeding. There’s no doubt that breastfeeding has a lot of proven benefits – and probably some unproven ones – but I’m not convinced that it’s in the child’s best interest to exclusively breastfeed until six months of age.” Lack knows what he’s saying is controversial. “A lot of people tend to dichotomise the debate into breastfeeding versus feeding solids,” he says carefully. “It really isn’t that at all. It’s about breastfeeding together with solids.”

Lack’s latest research – the Enquiring About Tolerance (Eat) study – has already sparked disapproval from breastfeeding advocates. He has a sample of 1,303 British children whose mothers chose exclusively to breastfeed. From the age of three months, half of the exclusively breastfed babies were gradually introduced to solids, including egg, dairy, wheat, fish, sesame and peanut, in a random order. At age three, all the children were tested for food allergies. We will know if early exposure reduced the number of children developing allergies once the results are published in a few months’ time.

Weaning children is not a science, Lack says: babies should just move towards eating the food that’s around them when they’re ready. But that’s not the impression you get from the diet gurus who have made a fortune out of telling us how to wean.

“There’s been an explosion of books about how to feed babies. It’s an entire industry. Every parent who is out there wanting to do the best for their child believes that reading these books is going to give them the best information. There’s a readiness to change diet in the population that is not based on sufficient evidence. It’s important to have a well-balanced diet, but beyond that I really don’t think we should be too prescriptive.”

Facebook Twitter Pinterest Luke, left, and Jamie Waggott. They were raised in the same way, in the same home, breastfed and weaned at the same time with the same foods. Photograph: David Yeo/The Guardian

When she first became a mother, Karen Waggott was a stickler for following advice. She breastfed, bought the weaning books and waited until her son, Jamie, now eight, was six months old before she gave him solid food.

Jamie had his first anaphylactic reaction at the age of five, when he ate a bag of mixed nuts. “It was immediate,” Karen says. “He was really, really agitated, trying to get it out of his mouth. We washed his mouth out and he started scratching at his throat. At that point I should probably have called an ambulance.” Jamie is allergic to all nuts, as well as citrus fruit and pectin (a natural thickening agent used in jams and jelly sweets). Like Elian and Daniel, he is now never without his EpiPen.

But Jamie has an identical twin brother, Luke, who has no allergies. They were raised in the same way, in the same Oxfordshire home, breastfed and weaned at the same time with the same foods. “Same pregnancy, same hospital, same staff,” their mother says. “They went to the same special care unit.”

Karen has since become an allergy detective, spending much of her time online keeping up with the latest research developments. “I’ve actually written a list, since Jamie was diagnosed, of all the things people have said it could be,” she says. “People are so judgmental, aren’t they? It’s that your house is too clean, or that you haven’t got a dog, or that you have got a dog. I read something about paint. Maybe I decorated their nursery at a certain time and that caused it?” But then what about Jamie’s twin? “Jamie was out of the incubator first. Maybe he came into contact with something – a microbe or an infection in special care? It might be something minute that touched his skin.” She sighs. “It’s out of my control.

“Allergy is an illness of extremes: reactions can be very mild or they can kill,” she says. “EpiPens can stop the reaction in its tracks or completely fail to save a person. It’s nasty to think there’s something out there that nobody else is really aware of that could finish Jamie off in 10 minutes. Even if you’ve just had one tiny reaction, it doesn’t mean next time it’s not going to kill you.”

The lack of answers leaves parents feeling powerless. “It will happen to a certain number of people, and there doesn’t seem to be any magic formula to stop it. It’s just one of those things,” she says. “You just don’t know.”