Disclaimer: This article is for informational purposes only and should not be used as a substitute for medical advice, diagnosis, or treatment. Never ignore professional medical advice while seeking treatment because of something you have read in this article. Please consult a doctor to get the right treatment for your illness. If you think you may have a medical emergency, immediately dial 999.
“Her breathing changed really quickly, welts appeared on her body, and her tongue started lolling out of her mouth,” says Lucie of her now 13-year-old daughter Delilah’s first severe allergic experience. Delilah had eaten nuts before, but this time, it was different. Luckily, a rapid response team arrived within minutes and injected an antihistamine to reduce her symptoms. Had her reaction been an anaphylactic one, Delilah would have needed an injection of adrenaline. In fact, Delilah now carries EpiPen, a life-saving, emergency auto-injectable drug with the substance to treat anaphylaxis.
Delilah is among the growing number of children worldwide who suffer from potentially life-threatening food allergies. In her case, the allergy is to cashew nuts and pistachios, which share a protein strain. So, an allergy to one equals an allergy to the other. A few years after her diagnosis, Delilah and her family learnt that she also has an allergy to egg white, which shares a similar protein strain.
What Is a Food Allergy?
The United Kingdom’s National Health Service (NHS) defines a food allergy as “the body’s immune system [reacting] unusually to specific foods”. The NHS adds that while symptoms are often mild, they can also be very serious. It’s hard to know just how many people suffer from food allergies globally, and statistics range from 1% of the population to almost 11%. However, some countries collect more data than others. The Centers for Disease Control’s Healthy Schools report on food allergies estimates that 8% of children in the United States are affected. Add autoimmune conditions triggered by food ingredients (such as coeliac disease), and the number might be even higher.
How Can I Tell If My Child Has a Food Allergy?
The NHS states that common food allergy symptoms include:
- Itchiness around or inside the mouth, throat, or ears
- A raised, itchy red rash (known as hives)
- Swelling around the eyes, lips, tongue, and roof of the mouth
For some, like Delilah, reactions to allergens (allergy-causing substances) can be almost immediate and life-threatening. People can also experience non-fatal instant and violent reactions, such as projectile vomiting.
“Many parents are aware of the most extreme symptoms of allergies,” says Dr Suzy Duckworth, a family medicine consultant at The International Medical Centre. Dr Duckworth has recently started a master’s degree in allergy medicine at the University of Southampton in the UK. “There are also longer-term symptoms of intolerance, including failure to thrive and blood in the stool,” she says.
Eczema is another symptom. This usually mild skin condition can sometimes indicate a more serious problem, especially if it fails to respond to traditional treatments such as steroid creams. Halina* discovered this was the case with her daughter, Lyra*, soon after she was born. “She developed a rash that started on her face and then spread over all of her body,” she explains. “She wasn’t sleeping and was in so much pain—her skin was leaking because it was so bad.” It was the same for Dounya and her son. “After two or three months, he started to have patches of eczema on his body. It got worse and worse and eventually included severe vomiting and diarrhoea,” shares Dounya. By the time he was five months old, the rash had spread all over his body. Doctors and dermatologists gave Dounya creams to use, but nothing worked.
For Gemma, a mum of two children with coeliac disease, it was her son Zack who had the worst symptoms. “We had a baby that would just randomly projectile vomit across the room, or would explode in his nappy, or wouldn’t poo for, like, a week.” Zack was eventually diagnosed at the beginning of the pandemic, which led to her own diagnosis and that of her daughter, Lois.
While Lyra was initially diagnosed with post-birth eczema, Zack’s parents were told that toddler constipation is extremely common. They were also advised to change his milk to see if that helped. In Halina and Gemma’s cases, the children’s parents knew something was wrong but were either dismissed as new parents or had symptoms ignored because the child didn’t check all the boxes for a suspected diagnosis.
Dr Duckworth isn’t surprised that the parents knew something was off. “Your parental instincts are really important because you’re the person with the child all the time and you know them best.” She’s also passionate about empowering patients to be comfortable and to know where to go with those little niggles. “If you’ve just got that feeling that something’s not quite right in whatever way, then I would always say go and see a family medicine doctor or a paediatrician,” she says.
How Can I Get My Child a Diagnosis?
Halina took Lyra to her local hospital every week or two because her symptoms were so severe. The research she had done online and with doctor and pharmacist friends suggested an allergy, but her concerns were dismissed. Eventually, after 15 to 20 visits, she and her husband decided to take their case to a private practice, despite having no medical insurance. The doctor they saw immediately suspected a cow’s milk protein allergy. While testing was needed to confirm this, Lyra immediately started a high dose of steroids usually reserved for adults because the symptoms continued for so long.
Getting a diagnosis was just as difficult for Zack. “Because his height and weight were good, certain things, including coeliac, were ruled out,” says Gemma. By the time Zack was four, things had started to get serious. “Zack was so constipated that he would avoid going to the toilet and could only do it in his sleep, which would hurt so much it made him vomit. He was sleeping for up to three hours during the day and just getting sicker and sicker.” Zack’s paediatrician, Dr Ghada Nasrat at The Feto Maternal Medical Centre, recognised that this was more than childhood constipation and ordered a full set of blood work. Still, Zack’s above-average weight and height meant that everyone was surprised when he tested positive for coeliac disease.
Dounya was able to get a referral to the Allergy and Immunology Department at Sidra. There, they tested her son and discovered allergies to dairy, wheat, corn, and soy. She notes that the department is busy seeing many patients a day and that getting an appointment can take months. However, Halina and Lyra were seen more quickly because their cases were urgent.
What Is it Like Living with Food-related Allergy or Autoimmune Disease?
For many parents, having a child with a known allergy means starting by immediately removing the allergen from their environment. This is to help their little bodies settle down after fighting against exposure for so long. While many allergies aren’t life-threatening, even the slightest exposure to an allergen can sometimes cause an immediate and aggressive reaction. For Zack, sitting next to a child eating some birthday cake at a party can be enough to contaminate his environment if they touch the same thing. The same can be said for some nut allergy sufferers who eat food prepared in a kitchen where nuts have been present—thankfully, this isn’t the case for Delilah.
Initial lifestyle changes include re-learning how to meal plan, as many common family meals include some or all of their child’s allergens. It also requires carefully considering where to eat out by knowing which restaurants really cater to food allergies and communicating with friends, family, and caregivers to help them plan around allergies.
This isn’t always easy. For instance, Lucie and Dounya confess to peeling off Arabic ingredient labels on supermarket products to check for the English translation. When the original product label isn’t written in English, they avoid it just in case. The problems are widespread and nuanced. For instance, Lucie shares that pesto, which is normally made with pine nuts, can be made with cashews because they’re cheaper. On the other hand, Gemma has found that Haribo sweets imported from the UK are gluten-free, but the ones from Turkey are not.
In the longer term, living with a food allergy can look very different for each family. Some children, such as Zack and Delilah, will never be able to tolerate their allergens. They will need to learn to recognise their signs and symptoms and avoid them entirely. For others, a longer-term treatment plan might include a medically supervised, gradual reintroduction of the allergen.
Travelling is another aspect of living with allergies that requires more planning than what is typical for everyone else. Lucie had faced problems carrying her EpiPen before because the airline wasn’t happy with her having a needle on board. This was despite her having all the required paperwork to allow it (and they eventually did). In Halina’s case, she once had to demand to show her paperwork to a manager before she was allowed to travel with a bottle of an antihistamine. Gemma now seats Zack by the window so he doesn’t have to see other people eating gluten-rich snacks and to also avoid any potential contamination. Dounya, however, orders raw vegan meals for her son and carries her own snacks.
Mental Health Matters
Many people don’t think of the mental health effects when considering the long-term implications of living with a food allergy. “It’s not just about the diagnosis,” says Dr Duckworth. “Understanding the psychological impact that it can have on children and helping parents support their children through that is really important.” What she says is reinforced by Dounya, Gemma, Halina, and Lucie. Gemma is increasingly conscious of the impact of the way she has to control Zack’s food and how he has now reached a point where he doesn’t feel safe being away from her. “He’s already really scared because his reaction is so extreme,” she says. “We’ve gone through a massive process of helping him and Lois to not be scared of life.”
Parents also need support. “For many, this can be a very scary diagnosis,” says Dr Duckworth, “because they’ve seen their child with a life-threatening reaction.” These parents may have suffered months, if not years, of misdiagnosis and now, as a result, live their lives being hyper-vigilant about keeping their children safe. “I needed counselling after our diagnosis,” shares Halina. “I was completely burnt out from the stress and blamed myself for not advocating for Lyra earlier even though now, looking back, I know I did everything I could.”
What Can the Rest of Us Do?
As bystanders, it can be hard to know how to help families with allergy sufferers. Unhelpful reactions can range from people falsely believing a child can tolerate a small amount of an allergen to being too scared to invite them to anything. Lucie recommends approaching this issue from a perspective of what the child can eat rather than what they can’t. “Most parents will be able to give you a list of safe foods,” she says. For Gemma, it’s the little gestures that make a world of difference, like the times her friends remind their children to wash their hands immediately after eating to avoid harming Zack.
All the parents wish there was more awareness about their issues, both in the general community and among medical professionals. Nonetheless, they say they are seeing more evidence of this happening, which can only be a good thing.
Dr Duckworth would like people to know that food-related allergies, intolerances, and autoimmune disorders are issues family doctors can help with. “Parents don’t have to wait for an allergy specialist or to attend a testing facility,” she says. “In fact, somebody from a more general stance might be better in the first instance. Going straight for allergy or intolerance testing can leave you with more questions than what you started with.”
*Names have been changed to protect their privacy.