The nanny state guidance that’s left thousands of babies wrongly diagnosed with milk allergies

THOUSANDS of babies are being wrongly diagnosed with milk allergy because of a ‘perfect storm’ of flawed GP guidance and parents’ increasing paranoia about food allergies, experts have warned. Researchers now estimate that up to 74 per cent of diagnoses of milk allergies could be wrong.

The study, which involved 1,300 babies, noted that the diagnosis guidelines used by doctors mistook common problems in childhood for milk allergies – such as excessive crying, regurgitating milk and loose stools. Combined with increasing numbers of parents worried about dietary staples such as dairy and bread, this has led to a ‘massive overdiagnosis’.

‘More awareness among parents about food allergies and intolerances in recent years has prompted more to seek help for this specific problem when there’s any issue with their child,’ says Dr Robert Boyle, consultant allergy specialist at Imperial College London’s National Heart and Lung Institute. ‘This gives the impression that cases are soaring, but they are not.’

Research published last year suggested the number of cases of the most severe allergic reactions to food – the potentially life-threatening anaphylaxis – rose

This gives the impression that cases are soaring, but they are not

seven-fold between 1992 and 2012. It prompted commentators to voice concern about an epidemic of allergies among British children. But some of the country’s leading allergy experts say this is far from the reality.

Many of these cases, which resulted in hospital admissions, are likely to have been for much milder allergic reactions.

‘There’s no simple test for anaphylaxis,’ says Dr Boyle. ‘But there are so many worries about it that parents are understandably more likely to turn up at hospital or call an ambulance.

‘Data shows the numbers of people coming to hospital and being labelled having life-threatening anaphylaxis has been steadily going up for the past 30 years. But there is no good evidence this is due to a genuine increase in food allergies.’

DR BOYLE points out that if allergies were soaring as much as hospital episodes suggest, there should also be a corresponding increase in deaths – even allowing for improvements in treatment and a rise in prescriptions of EpiPens and other adrenaline auto-injectors to tackle serious allergic reactions.

But a 2020 analysis by Dr Boyle and fellow researchers at Imperial found deaths had actually gone down over the past 20 years. Deaths from cow’s-milk allergy did rise slightly in that period, but the numbers were still very small – just 17.

Testing procedures may overestimate the problem. Dr Boyle says ‘challenge’ tests – where suspected allergies are measured by exposing the skin to tiny amounts of the harmful protein to see if it reacts – may come up positive but that does not mean a patient will react.

‘Not everyone with a positive allergy test reacts to the foods they are tested for,’ he says.

Experts fear this over-diagnosis is prompting mothers to abandon breastfeeding and needlessly turn to the NHS for prescriptions of specialist formula milk, which costs about £60million a year – almost twice what it was eight years ago.

Prescriptions began to increase, experts say, when the official guidance for GPs, called the Milk Allergy In Primary Care guidelines, was published in 2013.

The recommendations were updated in 2017 after concerns were raised that guidelines from NHS treatment watchdog the National Institute for Health and Care Excellence (NICE) didn’t feature enough detail on how to deal with allergies. But now, experts say, research shows they are ‘inappropriate’.

‘You end up with perfectly normal babies being potentially labelled as allergic to cow’s milk,’ says Adnan Custovic, Professor of Paediatric Allergy at Imperial. ‘I would be very surprised if the majority of babies described as having mild to moderate milk-allergy symptoms would actually be given the clinical diagnosis of milk allergy.’

Dr Michael Perkin, a consultant in paediatric allergy at St George’s Hospital, London, who worked on the latest research, says: ‘Prescription rates for specialist milk formula for babies with cow’s-milk allergy are rising to levels completely out of proportion to how common the condition really is.

‘Incorrectly attributing these symptoms to cow’s-milk allergy is not only unhelpful, but may also cause harm.’

The main concern of experts is the effect that fears about milk allergy has upon mothers’ breastfeeding habits – as many are worried that the cow’s milk they drink will transfer to the baby via breastmilk, so switch to special formula.

Breast milk is recognised as the ideal feeding method for babies, with reduced risk of infection and hormones to boost development. But the UK already has some of the lowest breastfeeding rates in the world, with three out of four women abandoning it within months.

According to NHS figures, milk allergy affects just seven per cent of babies under one. Most grow out of it by the time they reach five, as the enzymes in the stomach develop to digest milk proteins. But other studies suggest the true rate is as low as one per cent.

There are two types of allergy. Immediate allergy triggers symptoms such as a rash, swollen lips and severe vomiting within minutes of being consumed, while delayed allergy can take several weeks or even months to produce similar symptoms.

In rare, severe cases, the allergic reaction causes the potentially fatal, extreme over-reaction of the immune system, called anaphylaxis, where the airways narrow and patients are unable to breathe.

An allergy to cow’s milk usually shows up when infants start using standard formula milk or eating solids that contain it.

In most cases, a GP makes a diagnosis of milk allergy, using the Milk Allergy In Primary Care guidelines, and issues a prescription for specialist formula as a ‘trial and error’ treatment. If symptoms continue, they are told to explore other potential problems, but experts say this rarely happens, and parents often use the formula permanently.

There are blood tests to detect harmful proteins that an allergic immune system produces in reaction to certain foods, but they are

notoriously inaccurate for detecting milk allergy.

It is for this reason that a referral to a specialist is often not viewed as necessary, with GPs making diagnoses without further tests.

Researchers at Bristol University and Imperial College London grew suspicious after noticing local surges in the number of babies diagnosed with milk allergies.

They looked at how many out of more than a thousand healthy babies would probably be diagnosed as allergic to cow’s milk under the Milk Allergy In Primary Care guidelines used by GPs.

The babies were fed breast milk exclusively and so would have had little or no contact with cow’s milk, other than exposure to tiny amounts from their mothers.

The results, published in Clinical And Experimental Allergy, showed that at three months, 38 per cent of them displayed enough symptoms – which are in fact normal in healthy babies – to be classed by GPs using the guidance as having an allergy. By the time they reached one year, an astonishing 74 per cent ticked enough allergy boxes to be labelled allergic.

An earlier 2020 study on false milk-allergy diagnoses, by a separate team at Imperial College, revealed 14 per cent of parents feared their child had a milk allergy – when only one per cent did.

Researchers analysed nine sets of guidelines for doctors around the world and found they all encouraged over-diagnosis by referring to symptoms that often had nothing to do with milk allergies.

Seven even advised breastfeeding women to drop dairy if their child was suspected of having a milk allergy.

Experts say the situation is exacerbated by widespread fears about intolerances, blamed on false nutrition advice that circulates on social media linking dairy and wheat to common health problems.

Intolerances are far more common than allergies, and do not lead to complications.

They are also more common in adults, causing bloating, pain and upset stomachs.

In 2013, a series of studies found that simply expecting to feel unwell after eating a certain food could lead to symptoms in those with no physical allergy. ‘We are living in an era of increasing concern about food allergies and intolerances,’ says Dr Boyle.

‘But the assumption that we’re living in the midst of a food allergy epidemic is simply not true.’

Olimpia Nero, a data scientist from London, was diagnosed – incorrectly – with an allergy to milk, egg and gluten when she was just 18 months old.

Olimpia had been taken to the doctor as a newborn, after suffering from vomiting and diarrhoea.

The GP diagnosed allergies to milk, eggs and gluten, and sent Olimpia to a gastroenterologist who said he had confirmed the diagnosis with blood tests. But when, a few months later, Olimpia was mistakenly given milk and she didn’t suffer a reaction, her mother began to wonder if the diagnosis was correct.

Further tests picked up proteins in her blood indicating coeliac disease – an autoimmune condition that means the body over-reacts to gluten.

‘The theory was that my immune system went into overdrive because I was eating gluten as a baby, which meant I reacted to other foods too,’ explains Olimpia.

‘But once gluten was removed from my diet, I could tolerate everything very well.’

Today, she is ‘fine’ with dairy – in moderation.

‘I find it makes me a bit bloated. But that’s nothing compared to my problems with gluten. Growing up was so hard. Friends never knew what to feed me so I spent my life eating apples while everyone else had cake.

‘Now, I just spend a lot of time out with friends worrying about whether I’m going to be sick.’