My
latest novel, Blaming the Child,
features a sixteen year old girl who has been diagnosed with Celiac Disease. It
is only part of the issue which drives her to run away from home, a minor
fragment in a wider problem, but it is nevertheless a diagnosis which makes her
life even harder than it needed to be.
Most
people have heard about gluten
intolerance, or the need to have a gluten
free diet, but people who genuinely suffer from Celiac Disease have to make
sure that normal flours, thickeners and even glucose syrups made from wheat,
form little or no part of their daily diet. I say genuinely suffering, because as someone who can’t eat gluten, I
have been at events where there has been a single plate of gluten free food
provided at a veritable feast and by the time I’ve got to the table, it has all
been eaten by curious diners who thought they would ‘give it a go’. My daughter
is also a diagnosed Celiac and has had the same experience, watching people who
are perfectly able to eat everything else in the room, homing in on the morsel
provided for her and others like her, when there is a table full for them.
Then
there is the other sort of gluten intolerance, which seems for some sufferers
to come and go. They can’t stomach a normal loaf of bread and smile demurely
while the host sweats tears over an alternative menu, but point them at a donut
or some other delicacy and all threat of stomach pain is miraculously removed
and they can suddenly eat normally. However some Celiacs can tolerate an amount
of gluten per day, so it’s never going to be that cut and dried.
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| My Mothers' Day gift from my daughter purchased from The Girl on the Swing, Hamilton |
The
reality of any kind of food intolerance is an unavoidable quickening of the
heart rate at the mention of dining out, wondering if there will be anything
suitable for you to eat or if you will be stuck once again, eating hot chips
and garlic aoli. The joy at occasionally finding something labelled as ‘gluten
free’ is often overshadowed by fear: perhaps the chef got it wrong and has
accidentally used wheat flour to thicken a sauce out of habit or maybe the hot
chips were rolled in flour to make them crispy. You ask the waitress and after
a look of confusion, she trots off into the kitchen to ask the question of
someone you will never see. If she comes back and admits that the item you have
picked isn’t actually gluten free, your last meal choice is removed from you
and then there is the embarrassing ordeal of moving on elsewhere in search of
the elusive lunch, or pretending that you weren’t hungry anyway and stifling
the guttural growls as everyone else tucks into their delicious food. If she
assures you that it is gluten free, you probably won’t fully trust her anyway
and won’t relax enough to enjoy your meal.
I
can’t emphasise what an issue food actually becomes for someone with an
intolerance. Gluten makes me incredibly unwell in the stomach department but I
have the double whammy of also being lactose
intolerant. Consumption of any kind of milk product will have me rolling on
the bathroom floor within twenty minutes, hot, sweating and severely sick. It’s
amazing how often a simple error by a barista, who takes my order and then
forgets that I actually asked for soy milk, has resulted in agony and a day off
work while I recover from their careless disregard of a simple instruction. I’m
not being picky - it’s not that I can’t tell it’s milk and not soy, I can tell
just fine, but unfortunately the usual way to tell is to take a mouthful and that’s already too late. It also
makes prescribed tablet taking into a nightmare. Most capsules, including
antibiotics contain small amounts of lactose in the casing. There are
alternatives but that involves standing in the pharmacy red faced yet again,
while the pharmacist makes a lengthy phone call to the manufacturer.
I
haven’t always had food intolerance and that is the sad fact. Nobody knows why
it suddenly begins this way, perhaps a virus, maybe certain foods were a minor
irritant and my body has decided to kick off over it now. Once upon a time I could
eat out at a cafe or a restaurant without worrying and I certainly didn’t have
to pick over the hot chips just in case they were beer battered and nobody
thought to mention it on the menu. I am ashamed to admit that I was also
horribly unsympathetic towards people who couldn’t eat absolutely anything they
liked, choosing to view them as hypochondriacs, individuals who felt the need
to be the centre of attention in social situations. Now that I am on the other
side of the fence, peering fearfully at menus and ingredient lists on the back
of every single packet I buy, the world appears to be a lot different.
My
beautiful, gregarious daughter has stopped sleeping over at friends’ houses,
finding the agony of dinner and breakfast too much to bear. We’ve tried
everything. We’ve sent special food for her. We’ve sent food for everyone.
There’s nothing left to try. Faced with everyone staring at her crumbly,
cardboard-like bread or the pizza bases that could double as wheel trims, she
is now electing not to go.
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| The Hillside Hotel, Huntly - awesome bespoke G/F menu |
I’ve
had only one incredible meal out in the last five years. Compared to the
average diner, that’s pretty sad. Bizarrely it was made by an award winning
Welsh chef, cooking at a hotel in the wilds of the North Island of New Zealand and
I rang him and spoke to him the week before we went there. I had no idea what
he was going to cook, just that there would be three courses. I sat like a
princess while the waiter put beautiful food in front of me and I trusted him
not to make me ill. He didn’t let me down.
In
this country in particular, there seems to be little understanding of what food
intolerance is like. It feels like something that nobody is really interested
in and so they let it pass them by, happy to wrongly label food packets as
gluten or dairy free when they aren’t, or to slap a milky coffee on the table
when that’s actually the last thing that was asked for. People will lay into a
gluten free cake at a party or a gathering, commenting that it’s ‘not that bad’
when it wasn’t for them at all and they actually had free rein of everything
else in the room. What do we actually have to do to get noticed?
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| There are books out there to help |
I
know of children who have died of peanut allergies and that is just so tragic,
but is that what has to happen here? I really hope not. A big mistake I made,
was to listen to a doctor who casually told me to try cutting things out of my
diet without running any tests. That is a monumental
mistake. I cut out milk products and wheat and have never been able to
tolerate going back onto them. Consequently, I can’t have the simple blood test
for Celiac, because I now have no gluten in my system for tests to pick up any adverse
reaction to. It is also highly possible that I cheerfully turned a low lactose
or milk intolerance into a major one simply by cutting it out. There are awesome,
scientific reasons for NOT taking massive dietary changes into your own hands before having the relevant intolerance
tests.
On
a recent visit to the hospital for yet more tests, the gastroenterologist
commented on the increase in gluten intolerance, blaming the way that the flour
is now stored to prevent it degrading. She said that the stuff they add to the
basic ingredient is in itself, completely indigestible and that it was no
wonder. It just goes to show that we should be more careful about what we put
into our own and our children’s mouths. She recommended spelt flour as an
alternative to wheat for people with an intolerance, but forbade me from trying
it as I am already too far gone it seems.
It’s
Celiac Awareness Month here in New Zealand and there have been helpful experts
offering gems of wisdom for anyone interested enough to listen. I’m sure that
the number of diagnoses have increased just from an ‘aha’ moment as someone
suffering from unexplained stomach pains finally joined the dots for
themselves. But will it be enough for everyone else to pay attention? The ideal
would be for cafes to be more intentional about what they offer for people with
intolerance. When someone asks to meet me for coffee, there are only so many
places I dare go and I have been known to walk out of a place when I didn’t
recognise the barista as someone who ‘knows’ they can’t make a mistake with my
coffee.
It’s
actually about far more than just ‘I can’t eat that’, it’s really about trust.
The people that hand me food or drinks with a smile, have the power to make me
really suffer and I’m yet to be convinced that they either know, or care.
http://www.hillsidehotel.co.nz/
http://www.thegirlontheswing.co.nz/
http://www.onestopglutenfreeshop.co.nz/
http://www.celiaccentral.org/awarenessmonth/
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