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Gluten-free need not taken seriously by radio prog

Discussion in 'General ME/CFS News' started by MeSci, Jul 16, 2018.

  1. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    3,256
    Location:
    Cornwall, UK
    The consumer programme You and Yours today had a piece on gluten-free products being 'unnecessarily' labelled, and repeated the tired old quotes about not many people being coeliac. This as usual did not take into account the more recent findings of non-coeliac gluten-sensitivity, found for example by the study discussed here:

    https://www.s4me.info/threads/marke...ic-fatigue-syndrome-2018-alaedini-et-al.3167/

    Perhaps some people could email the programme? I'm not currently up to it.

    The programme can be heard here:

    https://www.bbc.co.uk/programmes/b0b9v6hv

    and the piece starts at 17:49.

    Added later - seems to be 16:33 now!

    Contact details are here: https://www.bbc.co.uk/programmes/b006qps9/contact
     
    Last edited: Jul 16, 2018
  2. JaimeS

    JaimeS Senior Member (Voting Rights)

    Messages:
    1,248
    Location:
    Stanford, CA
    Stuff like this makes me sick, literally & figuratively.

    Like, if people want to be gluten-free for the sole reason that this is their choice, what on earth is the problem with that? Why do people feel it's their right to dicate what other people do and do not eat of all things?

    Ridiculous.
     
    Atle, Peter Trewhitt, Chezboo and 7 others like this.
  3. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

    Messages:
    693
    It seems to be a habit of (perceived) power: to control others' bodies, and to remove the individual choice.

    For the longest time it was the Church and government that controlled the bodies of the masses.

    Then along came medicine and they want a piece of the power to control our bodies.
     
  4. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    3,256
    Location:
    Cornwall, UK
    The argument seemed to be that the labelling was appearing on things that didn't normally contain gluten, I think.

    But that argument seems to assume that everyone automatically knows what might contain gluten.
     
  5. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    3,256
    Location:
    Cornwall, UK
    I've written this to the programme:

    Re your piece today about gluten-free labelling, there has been recent research confirming what many people have already found but not been able to get the medics to take them seriously: it is not only coeliacs who are sensitive to gluten.

    Many people with ME/CFS, for example, have great improvement in digestion when they cut out gluten. This is reported for example by this recent study: https://gut.bmj.com/content/early/2018/03/17/gutjnl-2018-316133

    I am one of these sufferers, and have a Masters degree in medical science.
     
  6. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    5,115
    Going gluten free for 6 months didn't improve my overall health,
    It's marketing. They've done this with with plant based oils too, labelling bottles as 'cholesterol free'. Also labelling less known foods as 'super foods' in order to jack up the price.
     
  7. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    Messages:
    2,092
    I think food polarises people’s opinion like no other subject.

    So putting aside the specific genuine cases of intolerance, one has to acknowledge that food is prone to an incredible amount of bias with people putting two and two together and making 7 whether that be wrongly attributing food poisoning to something they ate an hour ago, or stating that a piece of glass they ‘found in a packet” was from a factory when it’s clearly a domestic grade of glass, or dare I say it (pouring petrol on oneself and handing the boxes of matches over) that this current unhealthy trend in the general healthy population against wheat and dairy is in the most part similarly biased and ill informed.

    Most of this seems to be fuelled by self appointed experts on the Internet who wouldn’t be able to recite the essential amino acids, wouldn’t have a clue about the structure of starch or the basics about digestion but still have an opinion. These people are the ones I really despise because of how they mislead.

    What I think is unhealthy is the amount of people self diagnosing food related problems based on this information without getting specialist help or advice. Food allergy is serious and intolerance uncomfortable and unpleasant ...why then would people search for advice from inexpert cookery fitness and shopping blogs?

    I also find it pretty repugnant that rather than trying to re-educate misconceptions about food some food manufacturers and retailers would rather make a quick buck selling high margin gluten free food that have more calories, more sugar in them than the wheat product that does absolutely no difference to their digestion (for the majority of shoppers) than eating the equivalent starch value of bread or pasta.

    The media fuel the fire promoting quack diets and general stupidity.

    I’m sure there are genuine cases here amongst the M.E. community but in the general population this is pure fashion and misconception.

    Since the program wasn’t about ME specifically I’m not sure why people have the knickers in a twist about promoting a different point of view to the evangelical anti dairy anti wheat brigade.

    It’s such an affluent society problem ...

    whoo that felt good ...sorry if my rant contradicted anyone else’s rant but I like to give a different view especially when it’s in my specialist field.
     
    Indigophoton, TiredSam, Wonko and 3 others like this.
  8. JaimeS

    JaimeS Senior Member (Voting Rights)

    Messages:
    1,248
    Location:
    Stanford, CA
    Ehhhhhh. Giving up wheat and dairy really did help me. I doubt I would test positive for celiac's disease, but there it is.

    As someone who taught nutrition at the graduate level, I was always inundated by students reciting popular misconceptions from both sides, including "we've always historically eaten breads / cereals" and "historically, eating breads and cereals is relatively recent..."

    If people react to it or feel bad when they eat it, they shouldn't eat it. End of.
     
  9. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    Messages:
    2,092
    Yes but if they are feeling bad because their portion sizes of carbs are too high and they wrongly equate feeling bloated to being gluten, instead of too much carbs ...that’s wrong . In most cases it is almost certainly not gluten it’s more likely overeating calories/consuming too many carbs and not eating enough fibre ...and a whole load of other things which are easier and cheaper to fix than eating “gluten free” ...so it’s about appropriate advice from someone who knows what they are talking about. By not eating bread this can reduce a whole load of beneficial nutrients unnecessarily.

    As mentioned bias is a problem with food for a whole load of quite interesting reasons.
     
    Mij and TiredSam like this.
  10. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    5,115
    I switched to eating sprouted bread and find it has the results as going gluten-free for one year years ago- no bloating etc

    So it wasn't necessarily the gluten that was bothering me but the inability to digest wheat (?) efficiently? Not sure.
     
  11. JaimeS

    JaimeS Senior Member (Voting Rights)

    Messages:
    1,248
    Location:
    Stanford, CA
    Carbs in general do make me feel worse, but wheat seems to be on another level, causing gut cramping and neurological symptoms like weakness and dizziness.
     
    erin, Skycloud, MEMarge and 4 others like this.
  12. Inara

    Inara Senior Member (Voting Rights)

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    2,728
    But if the company produces products with and without gluten (e.g. chocolate companies), the products without gluten can contain traces of gluten. For people with gluten-sensitivity this is no problem, for people with celiac disease it is. For them, a gluten-free label is very important.
     
    erin, Peter Trewhitt, JaimeS and 4 others like this.
  13. Inara

    Inara Senior Member (Voting Rights)

    Messages:
    2,728
    I think one can have an opinion without knowing everything; of course, the opinion should be justifiable, but for this, experience would be enough. Experience is not irrelevant.
    The bigger problem seems to be that many people judge others by their own standards so that what worked for them must also work for others. (I agree that at this point a certain amount of knowledge or wisdom is lacking.) This is where misleading can begin.

    Of course, at a certain level people should know the details like biochemistry.

    When it comes to sensitivities you can search long before you find an "expert" - and who are "experts" anyway? We with ME know very well how difficult it is to find help with problems a doctor belittles.

    Sensitivities&Co can lead to very unpleasant symptoms, including terrible pain and chronic diarrhea, which can lead to activity restrictions and other problems. I agree there exist people that blow-up their symptoms; but if you have pain and diarrhea due to the food you eat that's not a small thing. But on a regular basis doctors laugh about you if you say I am sensitive to this or that (gets you an IBS diagnosis and no help).

    I think self-responsibility is very important.
     
    Last edited: Jul 17, 2018
    erin, JaimeS, Zombie Lurker and 4 others like this.
  14. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    1,678
    Allergy Advice: This program was produced at a facility that processes large amounts of liberal paternalism.
     
    Chezboo, Indigophoton, Mij and 5 others like this.
  15. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    2,092
    I agree that PWME face a problem with GP’s, and that some people have food sensitivities, however in the majority of cases that buy these gluten free products they have neither ME or a food sensitivity.

    Food sensitivity is unpleasant ...it’s not just feeling stuffed after a meal and farting a bit more. People don’t need advice on food sensitivities in the first instance they probably need some advice about their diet. There are plenty of qualified people who can advise on this and reputable sources of information on this? If reducing portion sizes and losing weight, eating more vegetables and other sources of fibre doesn’t work, then it might be worth investigating further? People seem to be jumping straight to the sensitivity angle though and this is encouraged by media and the Internet mixing medical conditions with lifestyle and the holy grail of eating what you want while maintaining a healthy weight (a bit like anti wrinkle cream it’s pure fantasy/wishful thinking)

    The amount of people buying gluten free can’t easily be explained by them actually being sensitive to gluten so suddenly over such a short period of time. The fact that it coincides with rises in obesity levels which is also connected to eating too mamy calories generally seems a sensible place to start.

    People that are chronically ill also often have gut problems, but this also doesn’t equate straight away to them being sensitive to gluten or other things. Sometimes its more basic problems with digestion.

    I don’t disagree that PWME have some odd food sensitivities. This program wasn’t about PWME though so in the majority of cases people need to stop eating quite so many buns and eat a more balanced diet first before claiming they are “allergic or sensitive to gluten”.

    I don’t think the majority of cases in the general population have a major problem with it like some claim.
     
  16. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    4,743
    Dr Google has a lot to answer for.
    Our previous office secretary felt tired and had stomach issues : she went through a number of internet based self diagnoses, leading to doctor's visits for a variety of things ( hypothyroidism, CFS, coeliac ....)

    Her husband has cancer, her job was stressful at times, she did feel better when she didn' t eat wheat and drink alcohol ( but she liked these so regularly ate and drank) .

    She convinced herself she had ceoliac disease, based on Dr Google and magazines ( nothing to do with the huge the amount of processed carbs she ate - and continued to eat with the gluten free versions) . She tested negative and was devastated.

    She has since changed jobs, stress reduced, husband in remission, and has had some symptom improvement .
    I don' t doubt that she has some sensitivity, but the full picture is more complex .
     
  17. TakMak

    TakMak Established Member

    Messages:
    16
    When I was first ill back in 1999 one of my symptoms was a continuous sore throat. Stepsils, Dequacaine, Olbas pastilles and eventually Cloroseptic spray became my best friends. Apart from the tiredness this was my worst symptom. It was unrelenting. After a year and a half of this, because of something I read online about diet and ME I decided to try dropping gluten. The first on the web's hit list was dairy but I liked cheese too much so going gluten free seemed less hassle. Within two days I had no sore throat.

    Coincidence? Quite possibly. So I had some pasta. Within 20 minutes I had a mild sore throat. Whoa... that's pretty radical I thought. I had always eaten bread and pasta, a lot of it and with no apparent problems before I fell ill. So over the months that followed I cut gluten from my diet and felt better and generally sore throat free. Occasionally I would have a sore throat after eating. Looking at the ingredients, or asking in the restaurant, would reveal that wheat was used in the preparation of the food. It was actually surprising just how much wheat there is stuff that you would think is gluten free. eg. crisps, maize based breakfast cereals. I became more careful of what I would eat.

    I was about a year into my GF regime when I went to my doctors (because I still was shattered much the time) and mentioned it to him. He immediately tested me for Coeliac Disease but the results came back negative. Neither him or I had realised that I had needed to eat gluten for a week before doing the test for it to work. Doh! I've not been tested since.

    I, for one, am very glad of the trendy GF foods. When I first went GF it was hard to get decent bread, cakes and pies. And eating out could be a real chore. But now with the rise of GF awareness there's a whole load of foods out there that are tasty and reasonably priced.
     
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  18. Inara

    Inara Senior Member (Voting Rights)

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    @Amw66, I don't see a problem in hypothesis testing: You have some symptoms, you search about what it could be, you formulate a hypothesis and make some tests, you evaluate the results and make a conclusion. The problem is we often don't have the means to get the needed facts. And one shouldn't make oneself crazy.

    I don't see why I need a "higher being" (e.g. the doctor) to do that; most of the doctors I met don't act reasonably, respectfully and scientifically, and most often I am better off without them.

    I share @Luther Blissett's (and @JaimesS's) opinion:
    Everybody can eat what s/he wants.
     
    erin, JaimeS, Zombie Lurker and 2 others like this.
  19. Inara

    Inara Senior Member (Voting Rights)

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    I cannot agree. First because there are not so many people who are "qualified", and second there is no diet that is good for everyone, and third I/you/we know one's own body best.

    If I decide to eat less carbs and I go to those "qualified" people, they will explain to me the food pyramid whose foundation is, as we know, carbs (bread, cereals, noodles...), so I will be told my idea is bad, no matter why I decided to cut carbs. (Unless I am diabetic.)

    Why?

    The wheat today isn't the wheat from 100 or 2000 years ago. The new cultivation contains far more gluten. Maybe the human being needs a bit longer to adjust to this rapid change. Maybe too much gluten really is not healthy - I don't know.

    Do you mean eating gluten-free is connected to obesity?
     
    erin, JaimeS, Indigophoton and 6 others like this.
  20. MeSci

    MeSci Senior Member (Voting Rights)

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    Location:
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    Switching to gluten-free made my excess weight melt away! There was no effort involved.
     
    erin, JaimeS, Indigophoton and 7 others like this.

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