Real patients get overlooked

Dangerously sensitive to food

Only three out of ten people who think they are allergic to something actually are. Dorien Westerlaken found out just how damaging this statistic is, as it means that real patients tend to get overlooked.
By Christien Boomsma /  Fotoburo FPS – Jos Schuurman / Translation Sarah van Steenderen

Protection from allergies

Not everyone runs the same risk of developing an allergy. Westerlaken discovered that the so-called STAT 6 gene and the Filaggrine gene play a role in allergies. American research has shown that in some children who were raised on a farm, a protein attaches to the outside of the STAT 6 gene, causing it to be read differently by cells. It’s possible that this leads to a decreased risk of allergy.

How this mechanism works exactly, Westerlaken doesn’t know. It’s possible that it’s due to the children drinking fresh cow’s milk, which contains proteins that break down when the milk is heated during pasteurisation. It could also be due to the children spending more time outside, which causes their bodies to create more vitamin D, or due to their increased contact with animals and bacteria, which boosts their immune system.

It is clear that the cause of allergies lies in epigenetics, the factors that decide whether or not a gene is expressed. Long-term breastfeeding also turned out to have an effect. How long women would have to feed is unclear, ‘but you’ll have to hang in there for a while’, the researcher says.

People run a lower risk of allergies if eczema doesn’t run in the family.

It might have been better if Dorien Westerlaken had omitted one question from her survey on food allergies. It was an open question, asking people which foods they thought they were allergic to. ‘In hindsight, I think it may have been a mistake’, the researcher says.

‘I got a ridiculous number of answers. People think they’re allergic to sugar, or water, or carbs. Some think they’re allergic to food colouring, or artificial odours and flavours. Some even think they’re allergic to E-numbers!’

Survey takers truly believe these substances cause adverse reactions. But that means nothing to doctors or medical researchers. Allergies to something as undefined as ‘food colouring’ just don’t exist. ‘There are just too many types of colouring’, Westerlaken says. The same goes for E-numbers. ‘Most people don’t know this, but citric acid is an E-number.’

This confusion creates problems for doctors. Of the thousands of people who think they have allergies, few actually do. ‘I questioned nearly 80,000 people from the long-term Lifelines study’, says Westerlaken from the Faculty of Medical Sciences, who will receive her PhD on 10 October at the faculty.

Just four percent

‘Twelve percent of the people I interviewed said they were allergic to food. But when we dug a little deeper it turned out that medically, only about four percent actually could be allergic to certain substances. And that was before we had tested anyone physically!’

Some people suffer from food intolerances. In these cases, they lack an enzyme that breaks down certain proteins, like lactase. Being lactose intolerant is annoying, but it’s not life-threatening.

Allergy has become an umbrella term

Most of the time, however, people have neither an allergy nor an intolerance. They simply believe that certain substances aren’t good for them. ‘They either don’t like the taste of something, or don’t want to eat spicy food, or they believe eating onions makes them fart. The word allergy has become an umbrella term.’

Westerlaken suspects that of the more than nine thousand people who claimed to be allergic, a physical test would find only two thousand who actually are.

Severe immune response

This discrepancy is alarming. Real allergies are a serious medical problem. In people allergic to such things as peanuts, cow’s milk, or chicken’s eggs, a small amount of the substance can cause a severe immune response. They break out in a rash; their lips swell; their throats close up.

This response happens quickly, usually within one or two hours. Another important detail: the symptoms occur every single time. A real allergic response can be extremely severe, even deadly. ‘People can go into anaphylactic shock’, says Westerlaken. ‘That’s a very serious issue.’

But because so many people claim to be allergic to one thing or another, real patients tend to get overlooked. Some restaurants don’t take customers seriously when they say they’re allergic to certain ingredients.

‘They just take the croutons out of the soup in the kitchen before bringing it out’, says Westerlaken. ‘It’s understandable, because you can’t clean your entire kitchen whenever someone comes in with an issue. And it hardly ever goes wrong.’ But this kind of disregard can be deadly for people who are truly allergic.

They just take the croutons out of the soup in the kitchen before bringing it out

Even general practitioners can no longer see the forest for the trees, says Westerlaken. So, real patients are in danger of not getting the care they need. ‘The serious cases should really be carrying an epi-pen’, says Westerlaken. ‘This would allow them to treat anaphylactic shock – although they do still have to go to the hospital.

But only about one in 32 patients who should have an epi-pen actually has one.’

Wheat from chaff

That should change, she says. Patients who think they have a food allergy should go to a doctor instead of trying to manage symptoms on their own. General practitioners should also be better informed, so they can separate the wheat from the chaff.

Many doctors think they need to do a blood test measuring the presence of antibodies for certain foods. But blood tests only provide indicators, not definitive answers.

In the meantime, other symptoms are overlooked. ‘We have to provide better information.’ If doctors suspect their patient has a serious allergy, they should refer them to the hospital. ‘Even if it turns out the patient doesn’t have an allergy, we can at least reassure them’, says Westerlaken.

She does know how hard it can be, though. A real allergy is a serious medical issue, but some people base their entire lifestyle on food preferences disguised as allergies. That has to change, for the greater good of people those who actually suffer from life-threatening allergies. ‘We have to get rid of that umbrella term.’


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