‘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.

New Zealand Listener - - ALLERGIES & INTOLERANCE -

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

kids al­ler­gic

“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.

FOOD AVER­SION

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.

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