WWhenever Joanna Malukiewicz goes out to eat, she has a laminated menu with her. A long list of all the foods she is allergic to. It includes milk and gluten, soy, onions and garlic, beef and oysters. The woman from Hamburg shows the list to the waiters and asks if there are any dishes without them, whether the kitchen could just cook the salmon plain, for example. But despite all the chefs’ efforts, she keeps getting really sick.

Malukiewicz is one of around 15,000 Germans who suffer from a severe food allergy. Even the tiniest traces of the substances they react to can cause itchy skin, circulatory problems, shortness of breath or fainting because the immune system goes haywire. There is no official record of these people. Their number can only be estimated based on the prescriptions of the medication they need to reduce the risk of the worst possible outcome of their allergic reaction: anaphylactic shock.

A fatal chain reaction causes the blood vessels to expand, blood pressure to fall and organs to no longer receive sufficient blood flow; the liver or kidneys can fail, the heart stops and breathing stops. All of this happens within minutes. Severe allergy sufferers like Joanna Malukiewicz then inject themselves with adrenaline to stabilize their circulation, take antihistamines to block the allergic reaction and anti-inflammatories to control the internal attacks caused by messenger substances.

Current data suggests that there is a remedy that could alleviate their suffering. An active ingredient called omalizumab, which has so far only been used for serious pollen allergies and asthma and which – instead of just preventing the worst in an emergency – can prevent or at least slow down the allergic reaction from the outset. In February, the US Food and Drug Administration (FDA) also approved the injections for severe food allergies. German food allergy sufferers can also get it, but usually have to pay for it themselves and ask themselves: why?

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In the case of allergies, the immune system classifies harmless substances as threatening. They enter the body through food, as medication or through insect bites, and are inhaled as pollen or spores. As with everything that enters the body, patrols of immune cells examine these substances – or more precisely, the proteins that sit on their surface.

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But instead of classifying them as harmless, the immune cells trigger defensive reactions: They begin to form antibodies. In the case of allergies, such antibodies are called immunoglobulin E, or IgE for short. People do not notice this reaction when they first eat a crispy lentil salad or peanut butter. It only becomes serious after the second contact.

Allergy from birth or through the environment

The IgEs bind to other defense cells, so-called mast cells. They are filled with a cocktail of combat and inflammatory messengers. Together they circulate through the body like sensors. If the IgEs recognize the proteins that seem hostile to them again, they cause the mast cells to release their arsenal of weapons.

An allergy can be present from birth if someone tends to produce excessive IgE, or it can develop later due to environmental influences. What these are remains a mystery. The only thing that is clear is that the number of illnesses is increasing in industrialized countries. By far the most popular explanation is the so-called “dirt hypothesis”: IgE antibodies actually serve to defend against parasites, but because people hardly come into contact with them anymore due to the increased hygiene, the antibodies focus on new targets out of boredom, so to speak – and trigger reactions that are sometimes life-threatening.

Source: Infographic WELT

But it doesn’t have to come to that. There is a drug that interrupts this mechanism at a crucial point. “Omalizumab prevents IgE antibodies and mast cells from coming together,” explains allergist Robert Wood from the Johns Hopkins University School of Medicine in Baltimore. The active ingredient is a synthetic antibody that intercepts the free IgE molecules in the blood.

In February, Woods demonstrated its effectiveness in treating food allergies in a study published in the New England Journal of Medicine. 177 subjects took part in the test treatment. In addition to peanuts, they were intolerant to at least two other foods. 118 subjects were given omalizumab and 59 were given a placebo.

The treatment lasted four months, with injections given once or twice a month, depending on the severity of the allergy. After the study was completed, most of the participants were able to eat the legumes again without experiencing any negative effects. Two thirds of the study participants could tolerate four peanuts, and almost half could tolerate 25. This is a sensational result for people who could have died from a fraction of a peanut.

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The other food allergies also improved measurably. Thanks to treatment, two-thirds of all participants in the trial were able to tolerate three to four times the amount that had previously made them seriously ill. Only 14 percent of those treated did not respond at all to omalizumab. “But most received such a high level of protection that they could now eat the forbidden foods without danger,” says Wood.

The side effects of the substance are extremely straightforward: headaches or reactions at the injection site. It is possible that the treatment makes people more susceptible to parasites because the body lacks the IgE to fight them. In the western world, however, with its effective worming treatments, Wood believes this is “a manageable risk.”

600 euros per syringe

Unlike in the USA, however, Omalizumab is not yet approved in Germany for use outside of asthma therapy or severe urticaria. This is why doctors have to write complex statements for patients with statutory insurance, and these are often rejected. Because as effective as the drug is, it is also expensive. A single injection costs 600 euros. Calculated over the year, Omalizumab costs between 7,200 and 14,400 euros per insured person.

The negative attitude of the health insurance companies frustrates allergy specialists like Ludger Klimek. The head of the Center for Rhinology and Allergology in Wiesbaden says: “We have been using the substance for several years with great success; it fundamentally changes the therapy.” One patient had previously been admitted to the local hospital up to three times a month with an anaphylactic shock. In the intensive care unit, everyone knew her by her first name. Now the admissions are a thing of the past. “‘I have to go there and tell them that I’m still alive,’ she said to me,” says Klimek. “I’ll never forget that.”

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What allergy sufferers without omalizumab can use as preventive treatment methods are so-called mast cell stabilizers. They prevent mast cells from emptying their cocktail of defense and inflammatory substances. According to the drug prescription report, the price of a daily dose is 1.25 euros, or 470 euros per patient per year – and thus significantly cheaper. However, their use is controversial because previous studies have not shown a uniform effect. Those affected are therefore left with only emergency kits.

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Joanna Malukiewicz says that anyone who doesn’t have allergies can hardly imagine how much the necessary precautions change their lives. She herself has to bring not only her own food to parties or to holiday homes, but also dishes and cutlery. The traces that cause her these problems are the invisible remains of past meals on supposedly clean dishes. Malukiewicz never knows what is lurking on a plate. That is unsettling.

And there is the fear of one’s own carelessness. Because you should never forget the emergency kit with the adrenaline injections, because that could cost you your life – a responsibility that weighs heavily on some patients. Malukiewicz also talks about her loneliness. When colleagues spontaneously go out in the evening, the Hamburg native has to decide whether it is worth the risk. “So much of life revolves around food,” she says, “it not only promises enjoyment, but also conviviality.”

Here you will find content from third parties

In order to display embedded content, your revocable consent to the transmission and processing of personal data is necessary, since the providers of the embedded content as third-party providers require this consent [In diesem Zusammenhang können auch Nutzungsprofile (u.a. auf Basis von Cookie-IDs) gebildet und angereichert werden, auch außerhalb des EWR]. By setting the switch to “on”, you agree to this (revocable at any time). This also includes your consent to the transfer of certain personal data to third countries, including the USA, in accordance with Art. 49 (1) (a) GDPR. You can find more information about this at . You can revoke your consent at any time using the switch and via privacy at the bottom of the page.