‘I could die if you get this wrong’
Food allergies can cause more than hives or an upset stomach. For Martin Dickson, a shellfish allergy has been life-changing – and life-threatening.
Martin Dickson knew his shellfish allergy was serious when, in his late forties, a couple of spoonfuls of contaminated chicken salad sent him into anaphylactic shock. He’d had his first adverse reaction at age 18 to a Cobb & Co prawn cocktail. “I came out in red lumps all over my body for four days, and after that, whenever
I ate prawns, I got an itchy or swollen throat.”
For more than 25 years, Dickson avoided prawns, but about two years ago, three accidental exposures to minuscule amounts of the seafood within four months caused his condition to worsen significantly.
“It went from feeling itchy and yucky in the throat to anaphylaxis.”
On one occasion, he had to have adrenaline shots at a doctor’s surgery after eating three chips on a dish of calamari in a restaurant. When he returned to the eatery later to ask about its cooking methods, he was told the chip oil had been used to cook prawns.
After eating the chicken salad, which turned out to contain traces of seafood, he had to be taken to hospital by ambulance. And the third time, he became ill and dizzy after licking a finger he’d dipped into contaminated sea salt.
“It’s an absolute pain,” says 50-year-old Dickson, an Auckland health promoter. “Being with people, eating with them, sharing homes with people, is really important and a big part of my life. To avoid prawns is one thing, but once it gets to a trace and you could be dead in 15 minutes, it’s a completely different game. And that’s what I’ve had to adjust to.”
He now has to examine not only the main ingredients but everything that goes into sauces, stocks and dressings. “I used to get a hot rotisserie chicken from the supermarket, but even the hot chicken says it may have crustacea in it, because of the stock used.”
Dickson eats out only in vegetarian restaurants or in the one restaurant at which he’s a regular and knows the kitchen staff.
“You just seem like you’re being so dramatic if the message every time you walk into a cafe is ‘I could die if you get this wrong’.”
Dickson’s partner is a chef, and when the pair travel, they eat kosher meals on flights. Dickson also wears gloves on planes in case he touches a contaminated surface and then rubs his eyes, mouth or nose.
He always carries an EpiPen, so he can self-administer adrenaline, but says a severe anaphylaxis can require as many as six shots.
Dickson says he knows friends, acquaintances and colleagues of people with severe allergies find it difficult to deal with. “You might find it a pain, but we really find it a pain.
“It’s about trying to find sensible accommodations that work, so don’t be offended if we ask what’s in the food.”
gluten-sensitive people to become ill because of cross-contamination during food preparation. “If you’re using normal flour and throw it down on a bench to roll pastry out, the flour dust in the air can take up to 20 minutes to settle and it can settle anywhere. With a coeliac, even a small amount can cause a huge reaction.
“It’s always happening – people talk about going to this place or that and getting ‘glutened’.”
“Lifestylers” who choose to go glutenfree can create confusion for eatery staff, says Boswell. “They insist on a gluten-free main, then have a sticky toffee dessert that is full of gluten, and some wait-staff and chefs go WTF? But I won’t put down people who’ve made that lifestyle decision. It’s their choice.”
Nutrition Foundation dietitian Sarah Hanrahan believes perceived issues with gluten are now “so mainstream” that many people are excluding it without even knowing what it is. “The Glen Innes Pak’nSave has a gluten-free aisle. That’s a very telling marker. It doesn’t get much more mainstream than that.”
She says industry egg promotion body Eggs Incorporated put out information saying eggs were gluten-free. “A few years ago, I would have said, ‘Of course they are, what a nonsense – gluten could never be in eggs.’ But very few people know it’s a protein that’s found only in certain grains [such as oat, wheat, barley and rye].”
An Eggs Incorporated survey found only about a third of those questioned were sure about what gluten was, a third thought they did and a third either didn’t know or “didn’t really” know.
Hanrahan says that until recently, adhering to a gluten-free diet would have been difficult and expensive, but now there are so many choices available that it’s far easier. “What people shouldn’t do is make the mistake of thinking a healthy diet is defined by gluten.”
Christchurch paediatrician and food allergy expert Dr Rodney Ford, author of The Gluten Syndrome, says diagnosing gluten intolerance is highly controversial, with gastroenterologists saying “if you haven’t got coeliac disease, you don’t have a gluten problem”.
“No one knows what quantity will make people ill. Some people are incredibly sensitive to it, while others can take a little bit more – maybe a slice of bread – before they get sick. Because there’s no test, the only thing to do is challenge-and-elimination tests.”
He sees many patients taking dietary restrictions to “ridiculous” levels. “I spend as much time coaxing people back onto foods as I do judiciously restricting foods.”
FOOD ALLERGIES DROP IN KIDS
The Melbourne HealthNuts study of more than 5000 children reported this year that the 11% prevalence of food allergies in oneyear-olds drops to 3.8% by age four.
Auckland allergy specialist Dr Rohan Ameratunga says the figure for one-yearolds is much higher than what was seen in the past, but nobody knows why. Theories include the hygiene hypothesis and changes in the diet to include fattier or more refined foods. “I see
“With a coeliac, even a small amount can cause a huge reaction. It’s always happening – people talk about going somewhere and getting ‘glutened’.”
to eggs, milk, nuts, wheat, fish, the whole shebang, with very high levels on their allergy tests, which didn’t really happen in the old days.”
The lack of solid research here makes it difficult to quantify cases. “Unless a food allergy is really lifethreatening, for people who are struggling it’s the least of their worries. They worry about putting food on the table, so it’s probably a big hidden problem in this country.”
Although most food allergies go away with age, increasing numbers of adults with persistent food allergy or intolerance symptoms are being referred for hospital-level care.
At the Auckland City Hospital immunology department, clinical immunologist Dr Anthony Jordan says food allergies are the No 1 condition the department deals with. “For our paediatric colleagues, it makes up a huge part of their work, but we see that trickling through into the adult years.” Numbers are rising and it’s only going to get worse, he believes. “There’s a tsunami of food allergy that hasn’t yet arrived to the adult department.”
The main food allergies, in order of prevalence, are cows’ milk, eggs, soy, peanuts, tree nuts, shellfish/fish and wheat.
Clinicians use a “whole person” approach to deal with issues of food aversion and anxiety. “If you are food allergic, you can develop food aversion long term even though the natural history of food allergy is to resolve [itself]. Say you and I are both peanut allergic at two, one of us may not be when we are 18, but over that time, behaviours and fears around that food can become well ingrained.” Doctors worry about that fear spreading to other food.
Treatment approaches have changed, says Jordan. “Ten years ago, if you came in and said, ‘I’m allergic to milk, I can only drink milk once a week and then I feel tired’, I’d tell you you don’t have a milk allergy and send you home. That would be the end of it. Now we would say, ‘Okay, why do you think you can have milk once a week and why have you established a link between milk and feeling that way?’”
Immunology department dietitian Sharon Carey says the patients she sees with food intolerance have a range of distressing symptoms, including gastrointestinal upsets, aches and pains, hives, swelling and fatigue. Her job is to find out what’s causing them.
She says it’s not difficult to determine who has a true allergy and who has intolerance, with an allergy response starting within minutes, usually generating intense itch- ing, a rash and mouth, throat or respiratory symptoms, sometimes followed by anaphylactic shock.
TRIGGER FOR GUT DISCOMFORT
Carey says she’s never found a robust piece of research proving that gluten intolerance actually exists – apart from its role in coeliac disease and a rare skin disorder. She believes issues with FODMAPS – poorly digested short-chain carbohydrates such as fructan in wheat, onions and leeks – are more of a trigger for gut discomfort. “A low-wheat diet can be helpful for some people, rather than a strict gluten-free diet.”
Carey, who’s trained in psychotherapy, says a big part of her job is “joining up what is happening in someone’s life with their symptoms. Meeting lots of people with [food] hypersensitivity, I knew this was about distress, about difficult lives, people under a lot of pressure, who have difficulties in expressing this.”
When patients are referred to the hospital for food intolerance, she says, emotional-life distress, sometimes serious, is going on “every time”. “The only time you wouldn’t see it is when someone has a true lactose intolerance. Again, there’s a lot of misconception. People can feel a bit yucky drinking too much milk but it’s not necessarily the lactose.”
The important issue, she says, is having a healthy relationship with food rather than being fearful of it. “It’s about understanding what’s going on here … why am I struggling to tolerate different things in my diet? Why do I need such control over my diet? What is that really about? As soon as that relationship becomes healthier, people become a lot more confident to eat more foods again.”
It’s also important to realise that the symptoms are real. “It’s not all in the head, so it needs to be taken seriously.”
Carey is seeing more of what she calls “orthorexia”, or disordered eating. “It’s not quite anorexia but the belief that we need to not eat soy, gluten or wheat, perhaps avoid carbs altogether, avoid milk … all these reasons to avoid food to be ‘healthy’. Cutting down on some of those foods might be healthy, especially saturated fat and sugar, but when we start getting anxious and obsessive about it, it’s no longer healthy. I’m recognising more and more people who are quite disordered in their eating habits but who started off eliminating foods to have a healthier diet or relieve symptoms.”
Her role is often to try to liberalise diets rather than restrict them, and she says people need the chance to work through what’s stressing or distressing them. “They are obviously getting some comfort from changing their diet or they wouldn’t be doing this, but I don’t think they are doing it for the right reasons.”
“Cutting down on some foods might be healthy, especially saturated fat and sugar, but when we get obsessive about it, it’s no longer healthy.”
Martin Dickson: “It’s about
trying to find sensible accommodations that work, so don’t be offended if we
ask what’s in the food.”
Anna Richards: “You may have an adverse reaction that has nothing to do with your immune system.”
The vexed issue of gluten intolerance: allergy expert Dr Rodney Ford and the Nutrition Foundation’s Sarah Hanrahan.