The effect of expectancy versus actual gluten intake on gastrointestinal and extra-intestinal symptoms in non-coeliac gluten..., 2024, De Graaf et al.

Discussion in 'Other specific illnesses' started by ME/CFS Skeptic, Jul 4, 2024.

  1. Midnattsol

    Midnattsol Moderator Staff Member

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    The design of these trials are terrible. The wash-out periods are too short, the symptoms they are recording too limited (not all food allergies/intolerances/celiac manifest with gut symptoms, for me it's mostly cognitive for example), and not least are the food they provide in order for it to be blinded for the participants often full of other ingredients that may be difficult to digest and that could give symptoms as well.

    With oats in particular, there is a protein similar to gluten that some may react to. I get similar symptoms to eating gluten if I eat (certified gluten free) oats for an extended period of time, I don't know what I'm reacting to. The food could also have some protective factor, using oats again they have beneficial fibers which could be protective by changing the microbiome in a beneficial way.

    For gluten free pasta I can recommend red lentil pasta :thumbup:
     
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  2. MeSci

    MeSci Senior Member (Voting Rights)

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    I don't seem to be able to cope with buckwheat - I get similar symptoms to when I consumed wheat, I think. I tried it a few times and the same thing happened each time.

    It's added to quite a lot of things now, which is annoying.
     
  3. MeSci

    MeSci Senior Member (Voting Rights)

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    Yes, I don't seem to tolerate oats well either.

    I use gluten-free pasta of various kinds, and find it fine.

    I still have occasional diarrhoea (hoping that the current one is temporary!) and a lot of wind. Maybe I'm becoming allergic/sensitive to more things, or maybe I'm just being exposed to more things.
     
  4. NelliePledge

    NelliePledge Moderator Staff Member

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    I can do oatmeal I’m ok ish with some types of wheat spelt for eg. Cheap white sliced bread is the worst. But all manageable occasionally. I really dislike gf bread although pasta is ok but I try very hard to keep pasta intake down anyway. Gf bread is why I resort to standard bread although I try not to to keep carbs consumption down. I definitely notice in guts but also body aches when I’ve succumbed to bread.
     
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  5. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    For me bread seems to induce fatigue, low mood and some mild irritation in the digestive tract (a scratching feeling).

    Yes because it's junk food, and the purpose of these studies is to defend the sale of this junk food by depicting people who are noticing that it's unhealthy as believing in made-up nonsense.
     
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  6. Creekside

    Creekside Senior Member (Voting Rights)

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    Yes, some food reactions take time to "build up" or recover from. I recently tested wheat flour again and didn't respond, but after several days of extra wheat flour, I started feeling more lethargy and brainfog, so my initial test was too short and too small. It's probably quite easy to exploit this to make studies show the desired conclusions rather than the real-life conclusions.

    I do seem to respond more strongly to bread than to pancakes. Maybe there's a difference in where/how it gets broken down in the digestive tract, or how some molecules are altered by the cooking time and temperature.
     
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  7. Milo

    Milo Senior Member (Voting Rights)

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    I am not buy ing 10-12 $ for a loaf of GF bread. Way too expensive. I actually did my own GF starter and made 2 loaves of GF sourdough with it and it was really disappointing.

    Buckwheat in bread was hard to palate for me…
     
  8. Trish

    Trish Moderator Staff Member

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    GF bread is awful. I don't try to replicate bread, when I want a 'sandwich', ie something to spread things on and eat for a snack or meal, I use rice cakes, corn cakes, lentil cakes. I think the simplest way to handle a GF diet is not to try to find direct replacements for the things you can't have, get used to trying all sorts of other things instead.
     
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  9. NelliePledge

    NelliePledge Moderator Staff Member

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    Yes I use the crispy type of “cakes” too
    Not bad with boiled egg, tahini, avocado
     
  10. NelliePledge

    NelliePledge Moderator Staff Member

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    Filling wrapped in cos/romaine lettuce leaf is good too
     
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  11. bobbler

    bobbler Senior Member (Voting Rights)

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    it’s maybe a side note, or making it relevant to those ill with something else like ME, but of course what might be seen as ‘small things’ if temporary and it’s not you and that’s ’the only cross you have to bear’ is quite different to what might be the polar opposite when ill with ME.

    Where it’s quite a problem on top of being already so unwell to feel any more unwell , you have so little function that ‘small thing’ is actually a big proportion of your envelope, and any extra energy invoked with it eg toilet issues would then have to be dealt with whether you have that energy in your envelope or not.

    Nevermind that many might also have other things some also want to suggest are ‘little things’ which seemed to be where the health system has headed on things like hay fever, sinus, allergies, skin conditions they generalise as ‘mostly don’t meet the bar’, but if you have all of them badly on top of another condition it’s a vicious cycle for all of they either aren’t helped or it is made hard (ie barriers causing energy to get them)

    I don’t know whether others for example notice that there can be certain things that might even only become issues for example when in PEM or when you’ve gone through an extended period of ‘riding the line’ of the threshold and basically overdoing it.
     
  12. MeSci

    MeSci Senior Member (Voting Rights)

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    I don't find the GF bread I have unpleasant - I have Schar Ciabatta rolls and ASDA GF loaves (just half a slice of toast as part of breakfast).

    But I do wonder whether I am sensitive to the multitude of ingredients. I like bread! :cry:
     
  13. Creekside

    Creekside Senior Member (Voting Rights)

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    Me too. Darn, no "crying together" smiley.

    The remains of the loaf of "wonder bread"-type has been sitting on my counter for over a month now, with no sign of mold or other deterioration. It's kind of scary. What's in it that's preventing the kind of deterioration I expect from less processed bread? I'm leaving it there to see just how long it takes to finally show signs of deterioration.
     
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  14. perchance dreamer

    perchance dreamer Senior Member (Voting Rights)

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    I find gluten-free bread disappointingly soft. Without gluten, there's no chew. Occasionally, I'll make a keto gluten-free coconut-flour bread, which I like more than any GF bread I've ever bought.
     
  15. MeSci

    MeSci Senior Member (Voting Rights)

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    Over a month??? Please let us know if it does eventually deteriorate.
     
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  16. MeSci

    MeSci Senior Member (Voting Rights)

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    Can you get Schar Ciabatta rolls? I find them quite pleasantly chewy.

    I used to love really chewy organic wholemeal bread.
     
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  17. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I also find it disturbing that the gluten free bread I buy does not seem to go mouldy very often. Usually I throw away what is left after a week out of concern rather than any visible deterioration.
     
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  18. Evergreen

    Evergreen Senior Member (Voting Rights)

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    Agree with others - the elimination phase is way too short.

    In these studies there's rarely (if ever?) mention of people who might be reacting to fructans in wheat rather than gluten.

    In the initial elimination phase of the low-FODMAP diet, you avoid wheat (and many other high-FODMAP foods). Oat bread is literally recommended as an alternative to wheat bread during that phase:
    https://www.monashfodmap.com/blog/avoiding-wheat-how-strict-on-low-fodmap_10/
    So people not having symptoms to oat bread in this study could mean either (a) the thing they're sensitive to is fructans or (b) they're not sensitive to gluten. Is there a food that has one but not the other?

    After the elimination phase of the low-FODMAP diet, you try small amounts to see if you can tolerate them.
     
  19. Midnattsol

    Midnattsol Moderator Staff Member

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    I would say the opposite, I've seen many "people think they are reacting to gluten, but in fact..." and then there is some study with maybe 11 participants who were served an ultra processed muffin containing who knows what someone could potentially react to if they have a sensitive gut, but fructans is often mentioned since it is found in wheat like gluten. Maybe our different views come from where the research is done? We've had a bit of this type of research in Norway so it gets mentioned in local media.
     
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  20. Evergreen

    Evergreen Senior Member (Voting Rights)

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    Ah, OK, the research I have seen has not mentioned fructans. And the thrust of the paper discussion and discussion in the media is always "They think they're gluten-intolerant and they're not!" I don't think I've read any Norwegian studies.
     

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