The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Leaky gut: is anything genuinely known about how to tackle it?

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Sasha, Feb 7, 2017.

  1. Sasha

    Sasha Fine, thank you

    Messages:
    12,782
    Likes:
    34,193
    UK
    I've just been watching Prof. Simon Carding's talk in Norwich last week:



    and he discussed their "leaky gut" hypothesis.

    Am I right in thinking that there's no reliable test for this (I think Prof. Carding's team is trying to come up with one)?

    Test or no test, are there treatment protocols that have led to improvement in ME symptoms?
     
    Jo Best, MEMum and ljimbo423 like this.
  2. Cheesus

    Cheesus Senior Member

    Messages:
    1,229
    Likes:
    5,492
    UK
    There are a number of studies for treating leaky gut from the world of IBD. The degree of intestinal permeability can predict relapses in IBD, so studies generally look for things that can reduce intestinal permeability.

    From what I have read, most of the literature centres on L-Glutamine, which is typically an effective treatment for hyper-permeability in IBD, and in many cases can prevent relapse. I have also seen L-Glutamine studies for diarrhoea as well, and whilst it effectively reduces intestinal permeability it has no effect on symptoms in that instance.

    Maes has done a trial with L-glutamine and other supplements in patients with ME that had elevated antibodies to endotoxins from enteric bacteria. There was a group of patients who responded well to the treatment. I am struggling to find it now though. I will update if I can dig it out!

    EDIT: Ta-da:

    https://www.researchgate.net/profil...e_bacteria/links/55c0913f08ae092e9666c31b.pdf

    Note that it is an old study. Things have moved on in the world of leaky gut research since then.
     
    Last edited: Feb 7, 2017
    MEMum, Jo Best, ryan31337 and 3 others like this.
  3. Sasha

    Sasha Fine, thank you

    Messages:
    12,782
    Likes:
    34,193
    UK
    Thanks, @Cheesus.

    I see that Maes study is from Dec 2010. Do you know if anything more has been done on leaky gut for PWME since?
     
    MEMum likes this.
  4. Cheesus

    Cheesus Senior Member

    Messages:
    1,229
    Likes:
    5,492
    UK
    There haven't been any trials to my knowledge. There are a number of papers covering it though. I had to go deep into the bowels of the research forum to find this :ill::D

    http://forums.phoenixrising.me/inde...ty-and-translocation-of-gut-microbiota.45474/

    ETA: There have been more studies since then (June 2016). If you're feeling brave enough to scroll through millions of threads you will find them on the research forum. That one was one page 16 I think, so there is no need to go further than that.
     
    Last edited: Feb 7, 2017
    MEMum and Sasha like this.
  5. Daffodil

    Daffodil Senior Member

    Messages:
    4,905
    Likes:
    4,662
    poop pills are being used for C-Diff. I am sure there will be trials for autoimmune disease soon enough....there is a great demand for it. I imagine that would cure? leaky gut if the right ones are used.
     
    keenly likes this.
  6. Sasha

    Sasha Fine, thank you

    Messages:
    12,782
    Likes:
    34,193
    UK
    I suspect that's a long ways off, though - they'd need to do clinical trials first.

    I was wondering if there was anything considered effective (and low-risk, and over-the-counter, and that had reasonably good evidence) that could be tried right now.
     
    MEMum likes this.
  7. echobravo

    echobravo Keep searching, the answer is out there

    Messages:
    81
    Likes:
    149
    Norway
    Some books that come to mind on strategies to "repair" intestinal permeability are "The Autoimmune Fix", "Why Isn't My Brain Working" and "Eat Dirt".

    Taking bone broth, zinc, l-glutamine, probiotics, fermented foods etc.. avoiding sugar, starches, gluten, coffee, alcohol etc, ..seem to be common recommendations to seal "tight junctions" and heal "intestinal skin".
     
    Jo Best likes this.
  8. Sasha

    Sasha Fine, thank you

    Messages:
    12,782
    Likes:
    34,193
    UK
    I guess I'm wondering what there is that has good scientific evidence. I've heard some of those recommendations too but I wonder how much of it has a solid basis.
     
    MEMum likes this.
  9. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

    Messages:
    956
    Likes:
    3,949
    I looked a little bit, found nothing but theories, and quit. I'd be interested to know if anything new has turned up.

    I looked at the fecal transplant for cdiff literature about 5 years ago as my mother had it. There was nothing convincing there either, however, both the Infectious Disease and GI specialists said it was helping 40% of their patients. My mother's problem resolved on it's own, thank god! The procedure involved buying a dedicated blender, acquiring a fecal donation(from me!), blending the donation up in the blender, and then transplanting it via an NG tube directly into the stomach. Is that gross enough for you? The GI doc cracked one poop joke after another so it was pretty funny, but just really, really gross! I wouldn't go taking any poop pills until something convincing turns up.
     
  10. IreneF

    IreneF Senior Member

    Messages:
    1,552
    Likes:
    2,560
    San Francisco
    How is leaky gut diagnosed? All I can think of is cholera, etc., but that's leakage the other way .....
     
    Last edited: Feb 8, 2017
    MEMum and barbc56 like this.
  11. Silence

    Silence

    Messages:
    81
    Likes:
    68
    Northern CA
    I guess food sensitivities/reactions could be a clue. When I first started having gut troubles there were only a handfull of things I could not tolerate, now there are more than a dozen of foods I can't eat. I never used to be allergic to shellfish before my gut troubles started, but as my gut troubles progressed I developed an allergy to shellfish.

    Kurt Woeller is a DO specializing in naturopathic medicine and uses ketotifen to treat leaky gut. Here is a link to the compounding pharmacy that makes this drug:

    http://www.collegepharmacy.com/images/download/Woeller_Ketotifen_Protocol.pdf

    I've never tried it though.
     
  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,228
    Likes:
    31,910
    I don't think we have any real evidence that 'leaky gut' causes anything. Crohn's disease and colitis may cause a leaky gut, but I doubt it is much of a problem in comparison to the other effects of the disease. I don't see any reason to think leaking of tight junctions would cause autoimmunity.
     
  13. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    Holy crap! If I have a nightmare tonight about a rogue blender that's minus its lid, is full of liquid poop, and is spinning out of control, despite not actually being plugged into a socket, I'm going to blame you! :) Admittedly, I already am up sh*t creek in many ways, but I don't want to be swimming in it in my dreams too!:)

    Backing out of this thread now...
     
  14. Richard7

    Richard7 Senior Member

    Messages:
    536
    Likes:
    956
    Australia
    If you look around for it there is quite a lot of stuff out there on paracellular permeability. Which is what we are really talking about.

    The tests people do are usually based on taking lab grown sheets of cultured gut cells and then either using a dye which passes through the sheet when it becomes permeable or using ions and measuring the change in voltage. Using these methods people have found that bay leaves and nutmeg and green tea and some other things reduce permeability, while paprika and MCT oil and some other things increase permeability.

    https://www.researchgate.net/public...NDc3MTAwMDcyOTZAMTQ2NjU3MjgwMTA1NQ==&el=1_x_2

    http://bmcgastroenterol.biomedcentral.com/articles/10.1186/s12876-014-0189-7

    There have also been studies using microscopy looking at the tight junctions etc and the impact of different species of bacteria.

    I am not really on top of this at the moment (while investigating this I found I had b hominis and and have had worse POTS since taking some pretty strong antibiotics to deal with that) but the conclusions I came to were to avoid acellular carbohydrates, take plently of zinc (with sufficient copper) take some anti permeability polyphenols (I find that matcha, whole leaf tea and quercetin and tumeric seem ok I have not tried the others) I tried NAC but found it seemed to make things worse for me I take NAG and Tumeric.

    Some people find glutamine helps, others find that it makes things worse (I read something about this difference being asociated with some SNP or other but cannot remember at the moment).

    HIP had a post a while back that mentioned using colostrum, from memory the research was a bit mixed. Good for bristol 7s and weeding the microbiome but some difference of opinion about how effective it was at repairing the gut. If taking it the best idea seems to be to take it with a lot of fibre so that it spreads out and makes a lot of contact with the gut lining and not to take it with a meal that you really need to digest as it contains protease inhibitors (and needs to to allow it to get where it needs to go unharmed).

    I am not really strong enough to give you a proper answer
     
    Subtropical island, Jo Best and Sasha like this.
  15. Daffodil

    Daffodil Senior Member

    Messages:
    4,905
    Likes:
    4,662
    several papers say it can be diagnosed with a sCD14 test but i read something that says something else can raise this too, so i am not sure. but thats partly how my doctor diagnosis it.

    i apparently have severe leaky gut and have taken many of the supplements and given up gluten but nothing has helped that much. i am not too good with the other parts of the diet.

    also, i have very low mucosal IgA which could be genetic (or maybe due to no breast feeding? c-section birth??). I imagine this affects things, too

    you might want to get a DNA stool analysis and go to someone very knowledgeable to interpret the results.

    from my experience, i have to wonder if it can even be fixed - especially if its gone on long enough

    xo
     
    MEMum, dadouv47 and Sasha like this.
  16. arewenearlythereyet

    arewenearlythereyet Senior Member

    Messages:
    1,478
    Likes:
    7,571
    The bit I don't really get about all this is, that even if this does exist, a lot of the treatments seem a little bizarre. There seems to be a load of stuff about "killing pathogens". Some of the so called pathogens like E. coli are supposed to be there?

    You are never going to be able to sterilise your gut flora to eliminate a particular species. If the conditions are right for them to grow they will grow. There is a shed load in there..... More bacteria and yeast cells than is in the human body itself (or something of that magnitude). How will taking a pill do anything to resolve the issue in reality ...it's like a drop in the ocean?

    I can see that if you have low stomach acidity then that can cause some sort of overgrowth and fermentation, but faecal transplants...its just gross ? However man has been obsessed with his excrement since ancient times so this may be something that appeals to some.

    I think I will continue to use my blender for the odd cocktail and stick with the principle that if your body got rid of it ...its probably for a good reason. Perhaps a new concept for the fast food industry ....the "faecal juice bar"? Seems to up the ante on the coffee enema?
     
    Subtropical island and IreneF like this.
  17. Daffodil

    Daffodil Senior Member

    Messages:
    4,905
    Likes:
    4,662
    @arewenearlythereyet LMAO fecal juice bar

    i think its the levels of a particular bacterial species that could be a problem.....you can modify things with probiotics but i think you have to keep taking them cuz it wont stick....

    some say doing 10 fecal transplants in a row will make a difference.

    maybe you can push out some species by introducing another one? who knows

    my tests have showed enteroccocus at 44% and later, after many months of antibiotics, 33%. apparently its supposed to be zero
     
    sarah darwins likes this.
  18. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,467
    Likes:
    10,480
    Cornwall, UK
    :wide-eyed: Can't wait to see someone pitch The Faecal Juice Bar on Dragons' Den.
     
  19. arewenearlythereyet

    arewenearlythereyet Senior Member

    Messages:
    1,478
    Likes:
    7,571
    Awww. 10 in a row !!!! Sounds like the worst drinking game ever!

    I think the other thing with probiotics is that the benefit of them could quite quickly be wiped out with whatever you are eating which are loaded with their own freeloaders. It's interesting that the EU food labelling regs have removed probiotics from the permitted health claims list. This was due to not enough evidence apparently but I guess it's different for light consumer use vs what we are looking at. I just have a yogurt a day to be on the safe side, but I'm sure it's having very little effect in the scheme of things. I think I will look into stomach acidification though. Thinking lime juice and tonic water might be nicer than chugging down a load of acv. Why do all these treatments have to be vile tasting I wonder?
     
    MEMum and FTY like this.
  20. Daffodil

    Daffodil Senior Member

    Messages:
    4,905
    Likes:
    4,662
    @arewenearlythereyet i thought we were supposed to alkalalinize, not acidify? i tried to take baking soda for a while as per docs recommendation

    yes the doctor at the forefront of this fecal stuff is dr. barody in australia and i think he does 10 in a row. you have to do them right too...you cant just stick a tube up there yourself

    there have been a couple of cases with some strange disease developing - one was some kind of autoimmune blood disease or something - so its kind of scary too
     
    MEMum likes this.

See more popular forum discussions.

Share This Page