Are genuine coeliacs being masked by faddists and people with allergies? (BBC Breakfast TV, 19th March)

This morning, on BBC TV, an article about the vast increase in FreeFrom sales in supermarkets in the past couple of years as the number of people who think they have a problem with eating gluten increases. The overall theme of the article was that we are becoming a nation of hypochondriacs who go on faddy diets because we think that gluten or dairy are making us ill. Anyone who didn't watch this TV item to the end, when the TV doctor appeared in the studio to say there were 500,000 genuine people in the UK with Coeliac Disease will have walked away with the wrong impression. The next time you tell someone that you cannot eat gluten don't be surprised to get a response on the lines of " I know all about that. You can eat gluten really. I've seen it on TV".

25 Replies

oldestnewest
  • Its not really helpful is it - especially as some of the non-coeliacs eating these may genuinely have food-related problems.

    To a degree, so what if people do buy them. Would anyone give a toss if people en masse started buying diabetic jams?

  • the jam is a good point, someone trying to lose weight might consider this as an option to cut the calories, it is certainly not a tool confined to those with diabetes anymore than gluten free products are confined to those with coeliac disease. If they treat coeliacs like this who have a defined test to identify the disease what are they thinking about illnesses for which there are no tests. It is absolutely appalling that some people are prepared to get the very symptoms we are all trying so hard to get rid of. Until the medical world wakes up and actually recognises existing tests such as ones for intolerance rather than going through months of debiitation symptoms to satisfy what amounts to doctors egos or devises others for quantifying say serotonin levels to prove presence of IBS no one will take anyone with, IBS wheat/dairy intolerance or any other gut disorder seriously because it is just symptomatic and the medial world at large (there are some good doctors) does not think say IBS is a proper disease. All the medical world is prepared to acknowledge is that stress plays a part but that is inevitable given the nature of any gut disease. Richard MacKerness would say that it is not all in the mind. Sorry to get on my hobby horse.

  • It's not at all good for diagnosed coeliacs to have their credibility undermined, but I think the rise in demand needs to trigger a further investigation of where it's coming from. Living gluten free isn't exactly the easy option. And FreeFrom is not exactly the cheapest (or tastiest) food on the shelf.

    I'm probably one of these people, though I don't think I'm a hypochondriac or fad dieter. I was diagnosed with pernicious anaemia (chronic B12 deficiency) a few years back (before that I went to the GP so rarely that I hadn't even got around to registering with one). A year or so later I cut out bread and pasta to lose weight and was startled to find that most of my fatigue symptoms disappeared pretty much overnight.

    But my GP wasn't very interested and my private coeliac test came back negative (I'd been off gluten for six months and started back on it about two weeks before the test, so not sure if that's conclusive). After a while I felt bad again and gave it up permanently and, except for the odd accident, have been feeling better week by week.

    So I don't know what's going on other that I've got a dodgy gut and gluten really doesn't help! I'd really like a more defined diagnosis than that...

    More seriously, I think the figures reflect the fact that there are a lot more people out there like me (possibly wrongly diagnosed with chronic fatigue syndrome or irritable bowel syndrome, or just trundling along feeling a bit rubbish) who have a real reaction to gluten that isn't yet being picked up by the main channels.

  • Jeremy Clarkson made a smug comment the other week about ''tree hugging polar bear loving people on a gluten free diet'' If I didn't have to mind manners I'd say what a winker he is, please excuse my spelling.

    Sadly to some a gluten free diet is a fad and then we have tennis stars like Andy Murray going gf and saying how it has improved his tennis, all because Djokovic IS a coeliac. And has said how his tennis improved after diagnosis. I think it's because suffering from ''bloating'' is all the rage.

  • I don't mind if more people buy gluten free food and it results in more choice and lower prices. If going gluten free makes people feel better, that's great. And there are people like freelancer who have conditions where going gluten free helps, even though they are not apparently coeliac. I just don't want to see the gluten free market turned into a circus, because eventually those whose health is genuinely affected by gluten and those who think its a good idea to go on a gluten free diet will get mixed together, resulting in us all being labeled as cranks.

    Think of it in terms of people who genuinely can't work due to ill health being branded as 'scroungers' because they are being lumped into the same class as people who can't be bothered to work.

    I think that people who genuinely cannot eat gluten need to be medically certified as such.

    Incidentally, a doctor on the program said that many people suffer from coeliac like effects when they overdo it with gluten or other allergens and their systems cannot cope. This would make sense. A reduced gluten diet would make them feel better.

  • Phil, you make a good point. I think sometimes when people only half listed to the tv or radio and the discussion is about 'gluten free' then their can easily form a very wrong opinion on who would need this diet.

    Shopping apart, we try to eat out as much as possible (and as much as our budget allows) but time and time again we find restaurants telling us that something is gluten free and ok for coeliacs. When we contradict them, they go on to tell us that they have several coeliac customers who are absolutely fine to eat whatever we have refused. We had an instance recently, in a posh, food faddish part of town, where the manager came out to reassure us not to worry about cross contamination with the posh chips as the temperature would 'kill any gluten'. It sent our senses reeling. On this basis we could merrily eat anything we wanted as long as it was deep fried.

    Later on, over a couple of glasses of red wine our imaginations were unleashed, there's no end to deep fried combos :-)

  • Hello Tony62 - I am a bit confused as to why you are unable to work because you are a coeliac. I am a coeliac an I do not touch any GF alternatives, have a healthy and varied diet, of which everything is made from the basic ingredients, and work in an office with a lot of people. It is not the easiest of lifestyles to start off with but I can not see how it would stop anyone from working.

  • ...another non-coeliac gluten free-er here. I have self - diagnosed my gluten sensitivity through elimination diets, going on and off gluten and observing the difference it makes. I had a coeliac blood test and it was negative. however going back to eating wheat for 4 weeks prior to the blood test, though blissful initially, made me feel awful again. Not being coeliac, I still occasionally stray from gf to be polite or because particularly tempted or hungry I convince myself it'll be worth it. It never is!

    I think the point is that for many non-coeliac people gluten is a problem food - in fact some gf enthusiasts think we would ALL be better off without it. (eg amazon.co.uk/Dangerous-Grai...) I also wonder how many gluten sensitive people are either on the way to becoming coeliac but have caught their problems in time to prevent actual structural damage to their villi, or have gone undiagnosed because there is still uncertainty about the accuracy of tests.

    It is not 'faddy dieting' that's the problem, it is lazy journalism. I didn't see the programme but I think they are swimming against the tide in trying to discredit people who choose gluten free diets and are not diagnosed coeliacs. More and more people are reducing gluten consumption and feeling the benefits, good news for coeliacs as it is increasing the availability and affordability of choices. I do appreciate though that the 'we had someone in the other day and they were OK with it' response in restaurants is a problem. Maybe we can see this as an opportunity to educate - perhaps someone enterprising could produce a credit card sized information card for our wallets?

  • Hi SarahB - I think you hit the nail on the head. It's appalling that the BBC (whose radio and tv reporting has been so rapidly and chronicly declining in quality in the 24+ years I've lived in the UK) is allowed to get away with this. Their so-called 'reports' and 'articles' are almost always nothing short of media-hype popularization of the given topic. It's worrying because many people still apportion a sense of 'quality' and 'honesty' to what is produced/put out by the BBC.

    On the other issue - I would be delighted if MORE people went gluten-free, or at least severely gluten-low. I think it would benefit the wider population immensely, and it *might* just succeed where Jamie whazzizname celeb cook failed in getting us to eat more healthily - you know preparing meals from scratch. NOT relying on ready-made sauces/foods/meals which are full, full, full of ridiculous ingredients that are totally unnecessary...Sigh. I will stop here! But I s'pose to some degree it's good that people are talking about gluten, even if it is in a highly unsatisfactory manner...at least people can't say 'Never heard of it'...

  • A coeliac could cook for you.

    A roast chicken with potatoes, carrots, peas. No gluten there.

    Steamed hake with mange tout, sweetcorn and mash. No gluten there.

    Baked potato with minced beef in a tomato sauce (from chopped tomatoes). No gluten there.

    I know what it is like to be restricted by diet as do all the coeliacs, wheat intolerant, diabetics, lactose intolerant, nut allergies etc.

    It isn't an easy diet to have when society as a whole relies on wheat for so much, and it is certainly more difficult to bring up a child on such a diet, but it certainly is possible. I do feel that certain foods should cost less, such as fruit and veg and even meat so that people with food allergies / intolerances etc. can eat well. That way there would only be two obstacles - skill at cooking and imagination!

    All those symptoms you have described - are you saying they are all from eating gluten?

  • Hi Julian,

    Unfortunately not all coeliacs are equal. Tony is different to you and I'm different to Tony - the thing we share is avoiding gluten. For some of us sometimes the chicken meal has to be devoid of carbs (so no potatoes with that one) to be digested without problems. The jacket potato without the minced beef. On top of lactase deficiency it's a bit of a tall order sometimes, but there's always something out there that I can eat!

  • Tony62, have you ever been tested for Lyme's disease???

  • Tony62 poor you -- it sounds as if your gp should send to to a good allergy clinic-some of the things you say remind me of my husband, I cannot use ANY bleach in the house,/perfumed shampoo/shower gel or follow a woman around a supermarket if she is wearing scent as he gets migraine, we have to be careful of carpet patterns (follwing a spectacular collapse in a carpet shop as he looked at a particular pattern). He cannot toletrate any red meat/pears /oranges/any fat(has had gallbladder out) washing powder/conditioner/dishwashing liquid and even natural flowers have all sorts of issues in my house

    PS I the one with Dermititis Herpetiformis!!!!!!!!!!!!!!!!!!!!!!!

  • my coeliac tests all came back clear but taking gluten defintily affects my joint pains and severely upsets my stomach, i would gladly happily not have to avoid gluten as there is so much you have to avoid and work round; it gets depressing at times and can be too much to cope with on top of my other issues, if that means i'm a faddy eater then so be !!!!!!!!!

  • Hi ailsmary, I do not see someone who benefits from a gluten free diet as a being faddy eater.

    I also think that those of us who are officially diagnosed are the lucky ones as those who are not are outside the system on some levels like joining the UK charity for coeliac or getting food on prescription + medical back up.

    My definition of a faddy eater is one who jumps from one diet craze to the next and makes a big deal out of wanting a gf diet when in reality their diet is nothing of the sort.

    This comes up time and time again with those who are self diagnosed and need a gf diet and that's a shame. So for what it is worth please don't give yourself a hard time as your tests were negative what's important is you respond to a gf diet and you are in good company on here. Not all coeliac can eat codex wheat or oats so does that make us outcasts? No of course not, so it is all much more complex.

    And I'm sorry that you get depressed about it sometimes.

  • If anyone wants a re-run of that item you can find it here:

    bbc.co.uk/news/health-17427200

  • The final words were "after all, it is a matter of taste"

  • At the end of the day, Who really cares if some idiot wants to self diagnose for CD but if anyone does make a comment about your diet the obvious answer to me is... i couldn't get a prescription for gf food if i was not a registered coeliac. all the others pay through the nose for food they don't really need. blimey, what wouldn't i give to be able to eat a "normal" diet. what i would like is for somebody with some clout to stop the food company's ripping us off with their prices. It will never happen tho, Will it??

  • This was in the daily mail earlier this week and a couple of the comments made my blood boil:

    dailymail.co.uk/femail/arti...

    >>>'Intolerances' - another name for faddy eating and attention-seeking. Get a grip.

    - Kirstie, Plymouth, 20/3/2012 10:10

    Report abuse

    Oh please. It's pandering to some people's need to be different and 'special'. Twenty years ago, who can honestly say they'd ever heard of gluten intolerance? How did we all survive, without a big list of trendy 'ailments' to choose from?

    - Kirstie, Plymouth, 20/3/2012 15:06 <<<

    (Please note the above comments are not my words) But it shows how awareness of coeliac and our dietary needs lacks understanding to some.

    Ps thanks for posting the link to the program Phil.

  • That's the Daily Mail for you. Next week they'll say that a gluten free diet causes cancer.

  • Thanks for the link Jerry. Most interesting and pretty much along the same lines as the BBC news item. Half the population now have allergies. This is really serious.

    Surely, anyone who has a problem with eating gluten should go and see their doctor to get a proper diagnosis?

    Maybe people just don't have faith in the NHS any more. From the horror stories we read on sites such as GFG who can blame them?

    I have a friend who has a colleague at work who says she thinks she is a coeliac but still eats gluten rich foods. I gave her a copy of the NHS's Coeliac guidelines leaflet to give to her to read. Haven't heard aything about it since. I would suggest all of you other coeliacs carry a copy to give away to people who think they might be Coeliac.

    I would suggest that all supermarkets that sell gluten free food put a little box of Coeliac Disease pamphlets on their shelves alongside the food, with a notice along the lines of "Have you spoken to your GP about your problem"

    ( similar to the adverts for prostate problems they hang over the urinals)

    On the same lines: I suppose a positive way of looking at going GF becoming more popular is that pubs might start stocking draught GF ale when they think the market is big enough. I would drink to that!

  • Hi Phil, I think that you have some great ideas, like the leaflets amongst Free from foods.

    This about 1/2 the population is also interesting and alarming. There are reports of these artificial air fresheners that many have in their homes and cars are causing behaviour issues in children. They also reckon that tins for food are lined with an epoxy sealant that is leeching into the food.

    I think that the main cause of ''bloating'' from wheat is twofold:

    One we have made wheat stronger in gluten.

    Secondly and more worrying, supermarkets found that customers like the smell of fresh bread baking so bake their own but they pump the bread mix full of chemicals like phytic acid which's the chemical in soy beans that makes soy beans indigestible unless cooked. The reason that they do this is it makes the bread rise in around 1 minute! so the dough goes into a mould and in the 30 to 90 seconds it spends on the conveyor belt to the oven it has fully risen.

    Regarding your last point I'm the sort of person who goes against trends and even tho' pubs are closing down everywhere. I like the thought of buying a pub and calling it ''The Wheatfree'' And it would be just that.

  • I'm a bit conflicted by this discussion. I was diagnosed as a result of going on a fad diet for a while which meant that my gut symptoms became very aggressive, noticeable and obvious when i did start eating bread, cake etc again after a period of about 9 weeks avoiding all major sources of gluten. I had a lightbulb moment that joined together a series of test results, symptoms and memories from childhood of similar reactions and went to my GP. Small bowel biopsy clinched the deal. I may have gone on suffering for many more years if I had not experimented with a fad diet (the blood group one from about 15 years ago) in order to try and get better control of my deteriorating arthritis.

  • When I used the term 'faddist' in my original post I was thinking about people who follow trends because they are the 'cool', 'hip', trendy and transient

    I did not mean to insult anyone who has a genuine concern for their health and tries to help themselves. Looking back through history, many things have been discovered by enthusiastic amatuers.

    Three years ago I went to my GP with a list of symptoms that would have flashed ' THIS IS A COELIAC' in neon lights and got a "which of these problems do you want me to look at. I have 7.5 minutes per patient" response.

    Had I been as keen as you I would have trawled the Internet and might have found a link to gluten that could have set me on a 'fad' gluten free diet six months before I got diagnosed. I should think more before I use words like 'faddist'. Please accept my sincere apologies.

  • No worries philaustin, I totally appreciate there are plenty of people out there jumping on various diet bandwagons at any one time. My colleagues at work thought I was mad when I radically adjusted my diet in this way. However Atkins was very popular at about the same time and some others had done the cabbage soup thing or the one where you have breakfast cereal twice a day instead of whatever you would usually have eaten.

    I also understand that the fact that various celebs avoid wheat for their own reasons means those of us with a genuine problem can be taken less seriously as a result. Work colleagues are very understanding (I am after all a nurse working in a field where coeliac is a regular occurence among the patient group we deal with) so eating out and nibbles at post clinic meetings are always adjusted to take account of my needs. Even better a junior doctor has just joined out team who was only diagnosed last Feb so now I have an ally!

You may also like...