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The coeliac’s view

28/09/2012 //  by Michelle Berridale Johnson//  7 Comments

Food industry attendees as last week’s very successful Food and Drink Innovation Network Freefrom seminar got a serious shock – a presentation from a real live coeliac…..

To be fair, this arose from a suggestion in a ‘what could we do better’ feedback form at the end of the previous year’s seminar – that it would be really interesting to hear from a ‘real’ consumer as to what they thought of the freefrom offer. And, if the number of questions our coeliac was asked after her presentation and during the course of the day are anything to go by, they certainly did find it interesting.

Our ‘real live coeliac’ (seen here mulling over a pot of coconut yogurt at last year’s FreeFrom Food Awards judging) was Sue Cane, a keen foodie and a keen beer drinker who was diagnosed with coeliac disease about five years ago.

While Sue was postively fulsome in her praise of freefrom manufacturers who have massively improved the quality, quantity and availablilty of gluten-free food over the last few years, she left her audience in no doubt about how horribly restricting a strict gluten-free diet can be – especially if, as in Sue’s case (she works in the film industry), you are constantly out and about and never know where your next meal may come from.

‘How often’, she asked, ‘do you guys give your next meal a second thought?  Well, I have to, all the time. And not only think about it but carry it around in a bag in case there is nothing available that I can eat. Would you ever think of taking a sandwich out to supper, or smuggle one into a funeral, just in case there is nothing there that you can eat? Well, I do…. Because eating just the tiniest gluten-filled breadcrumb can lay me out cold for  three days. And when someone has flown you half way round the world to make a film, you really cannot afford to be taking three days off work because you have mistakenly eaten a breadcrumb….’

Coeliacs, as she said, obsess continually about food – and whether, if they go out, they will be able to find anything they can eat. If they can’t the options are starve, make yourself seriously ill – or stay at home.

And gluten is absolutely everywhere, and in all those places where you would expect it not to be: cream cheese, oven chips, the tongs serving a gluten-free cake, even on a supermarket check out belt… And that is discounting the hundreds of foods which should not contain gluten, but still do… cream cheese, crisps, roast potatoes, tomato ketchup, catering mashed potatoes, meringues….

Forget the morning paper, a coeliac’s daily reading is ingredient labels – and not only the labels on new foods but those on foods which you have eaten for years and believe to be ‘safe’ as you never know when the recipe may change and suddenly it is safe no more. And although labelling is getting better, and allergen boxes are very helpful, much of it, including the dreaded ‘may contain’ warnings, is still very confusing and seriously un-informative.

As for eating out…… Sue could have spent a full day on her tales of woe at restaurants but her main concern was finding snacks; there will always be something you can eat at a restaurant, even if it is only a baked potato or, one on particularly awful Boxing Day outing, a packet of crisps. But, when trying to eat on the run (motorway service stations, cafés etc) if you do not take your own, you may very well not get anything to eat at all.

And, worst of all, especially for a beer drinker, is that, as a coeliac, you can never go into a pub for a pint……

Sue’s message to the assembled throng – please, please try to think like a coeliac – so do not add gluten to the potato crisps, or to the soya sauce – or to any food for which it is not absolutely essential. And look to produce products, especially catering products, that bridge the mainstream and freefrom. Many of the gluten-free batters, sausages, veggie burgers and biscuits that we have tasted at the FreeFrom Food Awards judging sessions have been absolutely good enough to serve to non-coeliac customers – they would never even notice the difference!

Category: Allergies, Food, FreeFrom Food, Gluten-freeTag: celiac, Coeliac, coeliac food obsession, coeliac viewpoint, coeliacs banned from pubs, eating out as a coeliac, FDIN, Food and Drink Innovation Network, freefrom catering foods, FreeFrom Food Awards, freefrom manufacturers, Gluten-free food, gluten-free manufacturers, glutenfree foods for food service, restrictions of gluten-free diet, taking a sandwich to a funeral

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Reader Interactions

Comments

  1. Ruth Holroyd

    28/09/2012 at 16:50

    Here Here… brilliant! Love it.

  2. Micki

    28/09/2012 at 17:50

    Good on Sue! Just one point though: what was I, a half-dead coeliac last year…? 😉 Just jesting, I know my role last year was as a nutritionist but that did make me laugh! All I can say too, is try being grain free. I actually long for the days when I was just gluten free and I never thought I’d ever say that!

  3. Alex Gazzola

    28/09/2012 at 17:57

    I think ‘try to think like a coeliac’ is a message which will stick with me having read this post, and should be one (at least in an ideal world) that sticks with food manufacturers everywhere. Maybe it’s everyone’s job to keep reminding them to do so!

  4. Samantha/ The Happy Coeliac

    28/09/2012 at 18:07

    This is such an important message, thanks for writing up! Hopefully the manufacturers will start to listen!

  5. Janet

    28/09/2012 at 21:07

    Thats the whole point..the supermarket buyers, restauranters and certain family members.(you all know who I mean…) just dont cant or wont think in realistic terms just what a Coeliac does and how we live.
    We have a major education project on our hands…
    Welldone Sue and Michelle….
    Regards to all my Coeliac cousins….

    Janet

  6. jacquie broadway

    28/09/2012 at 21:46

    Well spoken. I am isomaltase and sucrase defficient, Coeliacs cannot digest protein and I cannot digest sugars and starches. Any feed back would be appreciated. Hope you are watching food hospital on channel 4.

    Jacquie Broadway

  7. Ruth Holroyd

    01/10/2012 at 08:23

    Just imagine shopping and eating out for a person with multiple food allergies, including wheat, and just think for a minute what that pain can be. It’s almost impossible. But on the plus side, it means I have learnt to cook and eat very healthily from only basic ingredients. What they (the shop or restaurant) rarely see is the person who asked for something without wheat/gluten/dairy writhing in agony in bed, stomach cramps, skin rashes etc. How many of us go back and challenge? and how many choose instead to just learn from that lesson and never go back/eat that food or trust that friend again.

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