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Sue Cane
Sue's Coeliac diary

I have known that I am coeliac for six years although who knows how long I had actually suffered from the condition.
I love to eat – but my day job is a
camera woman working mainly on location, so eating gluten free can be a challenge....
Other salient facts:
I used to have the London School of Tropical Medicine on speed dial
I have had Campylobacter in Timbuktu, Katmandu and Bigbury-on-Sea.
Once I took sandwiches to a funeral.
I'm always worried I won't have enough to eat.

This is my diary...

 

18th October 2014

We’re trying to work out how much gluten’s in my lunch but all I really want to do is eat it.

Gluten calculations


If you mention ‘parts per million’ when you’re talking about your diet even your best friends’ eyes tend to glaze over. But people often want to know just how much gluten you can eat before you get ill, and they expect an answer they can understand, something along the lines of ‘a fraction of a breadcrumb’ or ‘a microscopic piece of pasta.’

Parts per million is particularly hard to grasp in relation to food because it’s a measurement that’s more at home in the lab than your lunchbox. 20ppm of gluten is 0.002% gluten. Either way, neither means much to me, but crucially this is the food standard by which anything labelled gluten-free has to comply.

Assessing just how small a quantity of gluten will make us ill is a tricky thing to do. You need a large double-blind study of long duration, with many participants. Only a couple of small studies of merit have ever been done. One recommends that we keep our intake of gluten to below 50mg per day, whilst another implies we’ll be safe if we keep it to under 10mg.

The application of ratio in my life is usually limited to making meringues with 4 egg whites instead of 5, or mixing small quantities of cement. In terms of gluten I don’t do calculations, I just glance at packets and eat, safe in the knowledge that anything under 20ppm’s fine. So working out the amount of gluten in my sandwiches as a fraction of the daily limit is going to take some time. Fortunately they’re not toasties. I have a pen, some paper and 4 slices of bread at 6ppm. I fetch the calculator and a mathematician.

Having to do fractions does not endear me to my lunch companion, but finding out how much gluten I’m eating comes as a bit of a shock. After weighing the bread and working out my portion size, the sandwiches emerge at 1.15mg gluten, just over a tenth of the daily limit. But surprisingly, if I were to drink 4 bottles of beer at 6ppm, this would take me way over the 10mg limit and leave no room for any other gluten-free items at all.

So parts per million, the standard for our food, is only relevant in tandem with portion sizes; they go hand in hand. Otherwise there’s no point in comparing the ppm of a bottle of beer with that of a stock cube when you’ll drink several of the former at one go but consume only a fraction of the latter.

We all try to eat healthy food and, apart from a bit too much in the mayonnaise department, I probably don’t do too badly. When we eat out most of us worry about the risk of cross-contamination but it seems to me there might be another risk, much nearer home, if we rely solely on ppm as the safe way to judge the gluten-free foods we consume in high volumes.

 

18th September 2014

suitcaes of foodPacking for the hols

Packing everything you need
for a week’s holiday into a small item of hand luggage is always
a bit of a squash, particularly if you’re taking food with you as well. And if you’ve never visited the place before you can’t be sure how much you’re going to find to eat.

Sometimes, if I fear the worst - that there’s not much room left for clothes, in my case. Although I love fresh food and wandering through local markets, trawling about looking for non gluten-containing carbs is not what I really want to do on holiday, yet I still need to eat.

Sick of hand luggage that’s over-weight because it’s full of muesli, before I flew this time I contacted RyanAir to ask whether coeliacs are allowed an extra bag for food items. They said yes, I could have an extra bag, of specified weight, for items of food if they were medical supplies. All I had to do was print the special waiver letter they emailed me, and present that, plus a doctor’s letter, at check-in. (I just took the consultant’s letter of diagnosis, stating that I would have to follow a gluten-free diet for life.)

In the end I actually managed to squash everything into my existing luggage and didn’t need to take another bag, but it was nice to know I had the paperwork that would save me the fee if I’d been forced to put my over-size rucksack ‘handbag’ in the hold.

Sometimes - quite often actually - food is just fuel. If I’m going walking, all I want is some easily transportable carbs. That's why I took the supply of gluten-free rolls on holiday. I know it sounds pathetic taking food to another country - as though I’m scared of eating anything foreign - but it’s just that time away is short and I’d rather be climbing down a cliff to a deserted beach with my squashed roll from England than searching hopelessly for a rice cake in a foreign supermarket.

Of course sometimes there are wonderful discoveries, mostly made by others. I don’t even bother to look half the time. In Beziers this year, after he’d been told not to buy bread, J came back from the local wholefood shop triumphantly clutching what turned out to be the best loaf of gluten-free bread I’ve ever eaten. He said it was the way the shopkeeper picked it up and proudly showed it to him, carefully using a sheet of paper so as not to contaminate it, that made him take it. He knew it looked special. AmbarThat dense seeded-loaf did me several lunches and the stale, slightly mouldy crust, combined with olive oil, lemon zest and a little Demerara sugar, became the topping on my apple charlotte (which looked nicer than the tarte tatin the others were making). But I would say that.

And as we burst through the supermarket doors last week searching for breakfast on our first morning in Ibiza, my friend spotted a towering pile of Ambar – the gluten-free beer – at €.82 per bottle. The holiday had got off to a great start.

23rd August 2014

Could eating out become a pleasure rather than a pain?...

Much as I love eating I always dread going to places I know nothing about. Not just because I’m negative and whingeing, but because of that routine you have to go through each time.

Baked potatoSo I’m really looking forward to the new food regs for cafes and restaurants. I hope they’ll make eating out a lot easier. The investigation needed to identify the ingredients in the topping on my potato at lunch yesterday made me wish I’d just brought along my own sandwich.

‘What’s Appetize Spread?’ I asked the woman behind the counter. ‘Is there any gluten in it?’ She took me over to the cabinet to show me a potato with Spread on it. ‘Bacon or herbs.’
‘Ah,’ I said. ‘I need to know what’s in it.’ She stared blankly at me. ‘What does it come in?’ I said helpfully. ‘If you bring me the tub I’ll have a look at it.’
She gestured at a stack of cartons on top of a fridge. ‘It just comes in them.’
‘OK, I’ll have a look at those then.’
‘It doesn’t say anything on the box,’ she said.
‘Surely you must be able to tell me what’s in it?’ She disappeared into the kitchen and came back with a tick list for the meals. There was only a limited choice of ticks – dairy, nuts and wheat - but happily nothing against wheat for my potato and its spread.
‘OK I’ll have that then,’ I said, noticing it came with crisps and salad.
‘Are the crisps gluten free?’ She handed me a packet, clearly labelled, ‘no allergens’. ‘Are these the crisps you serve with the jacket potato?’ I said, suspicious. She nodded. ‘Well I’ll have those then please,’ I said. ‘And what about the dressing? Is it from a bottle?’
She went off and returned with a giant bottle of vinegar. ‘Is it just this on the salad?’ I said. ‘Or does it come with something else too?’ She didn’t know. ‘But you can have it without dressing if you want.’

My jacket potato with tuna fish, crisps and undressed salad came as jacket potato with tuna-fish-in-some-sort-of-mayonnaise and salad with dressing (plus a rogue piece of salami under the crisps). I hadn’t checked the tuna fish because I stupidly assumed that tuna fish meant, well…just tuna fish.

I took a chance and ate my meal but, by law, after December 13th restaurants will have to be able to let customers know which specified allergens are in the food, and not just shrug or supply a few ticks against random ingredients.

I live in hope that, eventually, the long-winded, to-ing and fro-ing to find out what’s in your food will become less common, and eating out won’t be such a hassle for all concerned, including the restaurant. It’s not great to be at a lunch meeting and have to ask the manager to bring an industrial-sized tub of dressing to the table so you can pore over the ingredient list whilst your colleagues sigh and roll their eyes. (It’s not great that the manager doesn’t actually understand what gluten is and can’t answer your question himself, but that’s a battle for another day).

FFEoa(Sue will be on of the judges for our new FreeFrom Eating Out Awards which will reward 'eateries' of all shapes and sizes who can 'get it right' for coeliacs and food allergics.
The awards close at the end of this month and will be
presented in November, just before the new regulations come into force. Check in here for more information.)

 

 

26th July 2014

Marmite on toastThe Marmite issue

When a friend called me to say
she was so hungry after the party we’d been to that she’d had toast
and Marmite when she got home, I laughed and said I knew what she meant, but inside I was a little sad I couldn’t do it too.

Marmite is instant comfort food. For most of my grown-up life it was my snack of choice. If I got back late and hadn’t eaten, I’d have toast and Marmite. It was the perfect after-party supper. It was my breakfast every day, my daily fix of umami. If I was too lazy to cook and just wanted to collapse on the sofa, I’d eat toast and Marmite. For those of us who love it, Marmite is a soul-food; mention it and you instantly share a common bond; a bond that for me now only exists in memory.

It took me a long time to realise I couldn’t eat Marmite.  Back then, in my old life, I vaguely knew it was a by-product of the brewing industry, but in 2007 conventional wisdom said Marmite was OK and Coeliac UK listed it in their bible, so I continued to eat it. It was only a couple of years later, still with symptoms, that I worked out by a process of elimination that Marmite was the cause and gave it up for good.

Now I know, officially, Marmite is NOT gluten-free, even though a lot of coeliacs believe it is – indeed most of us looking at the label would wrongly assume the latter – simply because there isn’t a gluten-containing cereal on the ingredient list.
But the yeast extract in Marmite is derived from barley and tests show there’s approximately 60ppm gluten in the final product, although because barley is not a ‘deliberate’ ingredient and micro-organisms are exempt from the allergen labelling provisions, it doesn’t need to be declared on the pack. Yes, Marmite conforms to the labelling regulations, but by virtue of its unusual composition it’s in one of those grey areas where the broad strokes of the law don’t actually help those people trying to avoid a particular allergen.

So now after a party I collapse on the sofa eating Vecon or Essential’s Yeast Extract instead. Both are tasty and neither contains gluten. It’s so long since I’ve had any Marmite I know I probably wouldn’t even like it anymore, but it’s a symbol from my old life and when it’s mentioned I still feel a pang for a food I can no longer share.

 

28th June 2014

Feast or famine? Sometimes we all get it wrong.

Tuesday. Supper. Tupperware box of sandwiches and a carrot at service station.

Wednesday. 6am. Wipe breadcrumbs out of hotel cereal bowl and eat own muesli. Arrive at work grumpy. Nothing to eat at work apart from industrial quantities of gluten.

11am. Day goes rapidly downhill when have to spend most of it in en route across London and back. Make catastrophic error and forget emergency supplies. Sit in traffic for 2 hours. Arrive late with no time to hunt for food.

Sandwich5pm. Hungry. Call home in bid for sympathy but nobody in. Finally stop for lunch at Tesco Metro and look for gf sandwich. Ask staff for gf sandwich. Nobody knows what a gf sandwich is. Refuse to believe there isn’t one. Look again. Staff decidedly unhelpful. Resignedly buy tub of pineapple and packet of Doritos and eat them in petrol station over the road and swear at man who’s blocked me in. Wonder if Tesco even does a gf sandwich. What does it look like? And how do you know where to find one if staff don’t even understand what they are?

7pm. Finish 4hr crawl across London and arrive back at work having missed drinks party. Drive to large supermarket to continue unsuccessful quest for sandwich.  Purchase hummus, a red pepper and a giant packet of Doritos. Eat supper sitting in underground car park whilst mentally composing ranting letters to everyone.

Thursday. Awake feeling sorry for myself and hungry. Eat own muesli at hotel breakfast. Work ‘til lunch. Consume uneaten piece of red pepper and remains of hummus from car park the night before whilst standing at window watching everyone else return from Sainsbury’s Local laden with nice-looking prawn sandwiches and gigantic pain au raisin.
Stomp round to Sainsbury’s myself looking for anything edible and accidentally stumble across gf sandwich. Am delighted. Eat it all and immediately go back and buy another and eat half that too. Return to work remarkably happy.

Friday. 6am. Awake somewhat dejected at food situation but pleased I might be a bit thinner. Eat own muesli again in hotel. Consider asking for refund for breakfasts. Try to remember what I ate at last proper meal on Monday night, but fail. Work until desultory lunch of 3 rice cakes, 2 apples and a banana. Contemplate remaining half of yesterday’s sandwich but decide will need it for supper. Watch colleague eat large take-out pasta salad and hate her.

6pm. Stand on street looking bewildered trying to find bus. Sympathetic driver takes pity on me and gives me free ride to right bus stop. Wait, clutching somewhat battered half-sandwich, observing streams of eating commuters. Get on bus and promptly fall asleep. Wake up and spot Honest Burgers sign disappearing past window. Crane head round. Big red light flashes in brain. Grab bags and stagger back to Honest Burgers.  ‘A table for one, madam?’ Sit down to gf veggie-burger, chips, roll and beer.

Leg it to St Pancras. Sit on train flushed with success and immediately eat other half of sandwich.

 

31st May 2014

Corn ThinsShare my food? No way...

I’m simply incapable of sharing with good grace.

Or indeed any grace, come to that. Sometimes
I wonder if having coeliac disease has made me more selfish, or if I was always going to turn out mean.

Take me out of the house for a while and my only concern is whether there’ll be any food. I try to hide it, but however exciting and wonderful the day promises to be, I always harbour a nagging fear I won’t get anything to eat. And quite often, unless I take my own food, I don’t, which brings me to the alien concept of voluntarily sharing it with anyone else.

If I work away I always take a big bag of emergency supplies with me. Feeling I ought to share them is not usually a problem that arises in the UK, as colleagues look on corn thins as insulation material rather than a source of carbohydrates, but having been up since dawn with nothing to eat on an uninhabited island off the African coast, even foods previously perceived as unattractive can acquire a sudden desirability.

So sharing food can become a bit of a thorny issue, particularly if we’re somewhere remote and I’ve taken a bag of emergency provisions to last me the job.

I went away last year with 68 corn thins
(calculated at 4 per day, with 8 for flight days and 4 spares, just in case), a few snack bars and some packets of almonds and apricots, and I didn’t fancy handing them out in the back of the car when the hulking great junk-food addicts were all feeling a bit peckish after their bag of biscuits had run out, especially as I knew they’d be chucked out of the window as soon as anything better turned up.

Thus, although in theory I’m committed to the concept of sharing, and love nothing more than the idea of a big communal meal, in real life I don’t really like doing it. In practice it never quite works out. I suppose it’s a bit like being a veggie, going out for supper and finding all the carnivores want the meat AND the veggie option too. A bit like that, but not quite, as you can choose whether you’re vegetarian or not.

And of course I blame CD entirely for my occasional catastrophic lack of manners, even downright rudeness. Last year I met a long-lost relative for coffee, spotted a gluten-free cake on the counter, bought it, sat down and had eaten it before I’d realized I hadn’t even thought to get him anything. It was only when I put my fork down and saw him looking at me I realised what I’d done. You see mostly I don’t care about other people and their food. Which might be just as well, because I often get the impression the feeling’s mutual.

Comment from Ruth of Ruth's Allergy Diary:

I am completely the same. I don't care two hoots about anyone else's food, and I certainly won't share. No way. I find it really hard to come home and find my gluten free bread gone, only to have the stealer complain it was awful! Who would buy this stuff? Me! And the contamination of marmalade is one of my biggest bug bears. My favourite lime marmalade, only just opened, fell foul of one of those incapable of using the spoon. Same with the hummus. Home made and now ruined by your butter knife or breadstick.
I am that child who will not share the toy. No way. Not happening. The oat cakes are mine and the dairy free chocolate? You can starve. And no you most definitely cannot share my bottle of water you allergen guzzling people you!

 

3rd May 2014

Guests mean gluten.....

Am preparing for an onslaught of guests. Guests mean gluten.

Gluten free zoneThe safe, reliable house will be transformed into a danger zone where I’ll be reduced to the status of an interloper.

Yesterday evening I sneaked a bag of crisps from the cupboard, ripped the top off, and ate as many as I could before J came in. (I have to do this or he eats them all.)
‘You can’t eat those,’ he said. I stopped chewing for a second. The subsequent look told me he was joking but the point was that I hadn’t even bothered to check. I didn’t need to. At home he knows I’m liable to eat anything that’s lying around, without even thinking about it. So the bad things in our house are either hidden where I won’t find them (usually somewhere high), reside in his gluten cupboard with all his pasties, or are marked with a huge skull and crossbones.

But this weekend all of that will go out of the window and I’ll have to look after myself. Gone will be MY side of the worktop where nothing with gluten ever touches down. Breadcrumbs will be over every surface; knives, cheese, chopping boards, half lemons, anything left out anywhere even for a nanosecond will be covered with the stuff. The kitchen will be a hazardous zone where I’ll have to hide my food until the last moment.

At supper with friends who thinks twice about dipping their bread into the remnants of the delicious sauce left in the serving dish? Nobody intends to do so but, after a few glasses of wine, we’ll all forget and pile in, eager to soak up the last few mouthfuls. I’m relying on J to stop me.

At breakfast I’ll concede control to the gluten-eaters, and erect a cordon sanitaire of tall condiments in front of my plate, hoping to ward off the flying crumbs of toast as it’s merrily passed up and down the table over my food. I might appear to be reading the papers but really I’m just making sure nobody contaminates the jam.

Most friends don’t have a problem using a spoon in a jar of marmalade but sometimes someone pathologically incapable turns up. They just get the jars they ruined the last time.  Butter’s more of a problem though, mainly because I’m so overjoyed on the rare occasions we actually have any that I have to be restrained from diving into it head first, embedded crumbs or not. The safe tub of Flora holds no attraction.

This weekend’s going to be really hard as one of our guests is bringing some of the beautiful primrose-yellow butter she’s made herself. I think I might have to have a table on my own for that.

 

6th April 2014

Beer fest.......

beer drinkingI had a great time at the FreeFrom Food Awards party last week. But probably not for the right reasons. Not because it was a glamorous occasion in a beautiful venue, full of happy people receiving awards for outstanding free-from food, small producers mixing with big buyers from the food industry, all buzzing with excitement and having a great time.

Not because I could eat every single canapé and every item in the buffet. And not because I didn’t have to say ‘Do you know what’s in it?’ and ‘Are you sure?’ all evening.

I had a great time because of the beer. The party was full of gluten-free beer and, for the first time in years, I was out, part of a big, beer-drinking world. I really miss that.
I quite like cider, I often drink wine, but if I go to a pub or a bar, I crave beer. At home, I’m a little ashamed to say, I like standing in the kitchen necking a bottle, straight from the fridge.

Beer is so thirst quenching and delicious. I’d love to go to a bar with friends on a warm summer’s evening and sit outside, clutching a cold lager in my hands. I want to be able to drink it with everyone else. It’s never happened before, but at this party it did. The room was full of people drinking beer. The same beer! Including me. And, although you wouldn’t have realised, it was all gluten-free. I felt part of normal life for an evening, rather than standing on the outside enviously looking in clutching my half of cider.

AWTHave a look at the pictures from the party. My favourite is of Antony Worrall Thompson giving David Ware, the owner of Green’s beer, a great-big smacking-kiss. It looks like Antony might have got a bit carried away at that moment, but I endorse his sentiment. They all deserve kisses, those brewers.

Of course, for most people at the party, the beer was, well….just nice beer. They probably go out for a drink all the time. But for me - and I know this sounds a bit sad - it was actually quite exciting. I don’t live in London. None of the places I go out to eat has even heard of gluten-free beer. I’ve never turned up a party before and found one I could drink, let alone a choice of eight, all begging to be tasted.

So at this party I was really very happy. There I was, drinking beer with everyone else, and it was actually very good beer, they all said, helping themselves to more. Soon, I hope we’ll at last find one of these gluten-free lagers in a pub chain. And then we might be able to have what, for most people, is actually quite an ordinary evening at a pub, bar or restaurant; sitting around, chatting…enjoying a glass of beer.

 

 

22nd March 2014

Coeliac tool kit....

Rice cakeI was scanning a menu yesterday, trying to decide whether it was worth chancing the restaurant, and it made me think about the time I went out for lunch and found there was nothing I could eat. Not a single gf item on
the menu. Not even a potato. So I nibbled a packet of crisps whilst the others tucked in, but even the crisps were ones I wouldn't usually eat as they had a scary warning on the back. I pretended I’d had a large breakfast and wasn't hungry, whilst my tummy rumbled and two large plates of the most delicious-looking fat chips arrived at our table. God I was grumpy.

It’s made me aware of the coeliac’s tool kit. That’s a mental one as well as physical. Because if not making a fuss is your default mode, you need to develop a thick skin. (Good acting skills come in handy too, though I doubt any of my friends ever actually believe me when I claim I’m not hungry.)

Asking the waitress to bring a catering-size tub of stock powder to the table so you can look at the ingredients because the chef can’t tell if it contains gluten isn’t the way to endear yourself to your fellow diners, but if it’s the only way you can safely eat, you just have to get on and do it.

Another requisite item is a pretty big handbag. Somewhere to stash your emergency supply of food. Sandwiches, snack bars, fruit…that sort of thing. Maybe even some of last night’s stir-fry.

At Caffé Néro I frequently ask, ‘Do you mind if I eat my own lunch in here? I can’t survive on chocolate brownies’. So far nobody’s twigged that a customer regularly eating their own lunch from a Tupperware box is a lost order, and I’m happy to continue until they do.

You need a pair of magnifying glasses for the tool kit because, no matter how good your eyes are, you’ll struggle to read the microscopic print on most packaged food. Try reading the back of a Magnum in the darkness of a newsagent’s. It is always best to read the label, although it didn’t prevent me once eating the roll in a gf meal which was clearly labelled ‘ALLERGEN: wheat’ because for some obscure reason I thought it was a special bread roll for those WITH an allergy to wheat. Crazy, I know, but it just shows how you need to keep your wits about you in a world that seems determined to make you ill.

It’s difficult when we place such store on food not to be disappointed when our desires are not met and everyone else is happily tucking into the object of theirs. Sometimes it’s hard to remember it is just grub.

 

8th March 2014

I love jacket potatoes, but not every day. My record is five on the trot. That was five meals on holiday in Wales when the only thing I could eat was a jacket potato. At the sixth I didn’t even get that. My supper of frozen peas and carrots (yes, honestly) made me laugh because it was so spectacularly bad. Especially as it was a gastro pub and we’d walked 4 miles along the coast to get there. Even their mashed potato had flour in it. And to cap it all, on an evening like that, you can’t even drown your sorrows in beer, because guess what? You can’t drink the beer either.

I was diagnosed with coeliac disease in 2007, the day before I left for a two-month job in Lithuania. I thought that the weird upsetting world in which I found myself where I could no longer eat anything normal would eventually go away, but it didn’t. I survived on buckwheat, picked off the batter from fried fish and occasionally cried. But not into my beer.

Sometimes, as in my case, it takes years to be diagnosed with CD but the minute you know you have it you can start to get well again. OK, it’s a nuisance, and you might occasionally weep with the misery of it all, but in my book it’s the best autoimmune disease to have as it’s relieved by diet. And as long as you like jacket potatoes you’ll be fine.

Now is an excellent time to be diagnosed. It might not seem so when the safe, ordinary world you inhabit suddenly ends and is replaced by a dangerous one in which a solitary breadcrumb might make you ill, but right now free-from food is the fastest growing sector in supermarket sales and there are whole aisles dedicated to food you CAN eat.

Changes in food regulations will soon mean that we’ll be able to find out the ingredients of any unpackaged dish on a deli counter or in a café. Awareness of CD is growing and this, combined with new legislation, means that having the disease is more a minor inconvenience than the life-changer it used to be.

Of course occasionally it is the pits, and you end up pretending that you really do just want a packet of crisps for supper in the pub, but last week I actually met a waitress who not only knew the ingredients in every dish but even volunteered, ‘the dressing does have a bit of soy sauce in it, but we can make one without if you’d like.’

Although CD is diagnosed quite simply, it can be tempting not to bother. After all it seems pretty easy to cut out wheat from your diet. But there are two reasons why having a diagnosis is important. The first is that removing a major food group has large dietary implications that are not always beneficial; secondly coeliacs are at risk from other conditions as well and these can compromise future health. A diagnosed coeliac will be screened for them. Someone who just gives up gluten won’t, so you’ll be missing out on a lot of medical expertise you might need some day.

Just something to mull over whilst you’re eating your potato...

 


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