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Fixing Leaky Gut Helps ME/CFS, and Sometimes Achieves Full Remission

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Hip, Nov 29, 2011.

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    end Senior Member

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    @Leopardtail

    @Hip

    @MeSci

    Dr Donald Lewis who works with KDM gave me those instructions along with the prescription for enteric coated L Glutamine. I do not believe these two Doctors work on 'theory' when prescribing

    I could be wrong???
  2. Hip

    Hip Senior Member

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    @end
    Well, I read that a normal daily diet has around 3.5 to 7 grams of glutamine in it, so you are getting this amount of glutamine anyway.

    The first post on this thread is interesting — to quote:
    Though taking 15 grams of L-glutamine in enteric capsules would equate to around 20 capsules a day. A lot to swallow, but also very expensive, since bulk powder glutamine is much cheaper than capsules.

    You might just be better off taking your glutamine powder on an empty stomach, away from meals, when your stomach acid levels will be low anyway. You can also take an ⅛ teaspoon of bicarbonate of soda with the glutamine powder, to help further neutralize any stomach acid.
    Last edited: May 16, 2014
    end likes this.
  3. Sidereal

    Sidereal

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    Here's an article describing the beneficial effect of L-glutamine on stomach ulcers. [LINK]

    Caveat: This was a mouse study.
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    @Hip

    @Sidereal

    Don't get me wrong guys, as I used to use 40grams plus of powdered L Glutamine EVERY night when I was Bodybuilding(mild CFS symptoms)over a decade ago 2002. Pre bed time... there was documented increased Growth Hormone release when doing this!!! And a TONE of other good stuff going on!!!

    But now 2014 - I can not even handle ONE teaspoon of the powdered stuff

    And guys the other thing that they mentioned and my caps are ONLY 500mg EACH and the label here says 'three enteric coated capsules before bed'

    I worked out how to post photos on here(tested on another thread) I can take another photo from my report and post it here, if you guys like???
  5. Hip

    Hip Senior Member

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    What information does your report contain? Please post it if you think it might be useful.
  6. Leopardtail

    Leopardtail Senior Member

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    For me Gltuamine was disastrous, left me knackered and edgy in serum though I have high Glutamine, low Glutamate. My agitation was low Dopamine / high T4 related.

    I was not trying to advocate everybody stay off it, more (possibly) explaining one person's specific problem with it. When used as an cognitive energy source (for which it can be valuable) it always converts in the one direction (the other use's ATP) and generates Ammonia.

    It's a swings and roundabouts things it depends on both your ATP status, your BH4 status and your Ammonia / urea cycle status. This (for me) prove to be one of the most complex bits of ME related biochemistry involved.
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    @Leopardtail

    Thank you for posting this!

    I am trying to peice this together in my foggy mind

    Leopardtail funny you mention ammonia, after advise from a fellow PR member I have just had testing for ammonia(blood/24hr urine)and SUSPECT it will be very high

    My sweat wreaks of ammonia(eeek!)for many years now(likely due to yeast overgrowth I have had for years unresponsive to diet/antifungals)

    And like you know the Powdered L Glutamine causes issues, although LOW doses of Enteric Coated L Glutamine 1500mg does NOT, could you elaborate or hypothesize on my situation?


    In laymens terms is it simply that high dose supplemental L Glutamine powder adds even more ammonia to my system due to there being a lack of ATP available?
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    end Senior Member

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    It states the dose, specific type of delivery method and reasons why it is prescribed

    I remember mentioning that I react to the supplement and I already have a kilo of the powder I can not use. That is when he described to me WHY they use enteric coated capsules and the negatives associated with the powdered version. I also have that conversation recorded and saved on my computer

    This is NOT the first time there "directions" have been challenged as I remember @MeSci "questioning" his/there directions in relation to a different topic on another thread not to long ago
    Last edited: May 17, 2014
  9. Leopardtail

    Leopardtail Senior Member

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    It's really pretty simple: There is an enzyme that converts Glutamine to Glutamate. In the process it releases Ammonia (irrespective of how you take it). There are three possible causes of issues:
    1. one of the enzymes in your urea cycle is not work
    2. inadequate ATP is preventing the cycle working.
    3. over production of Nitric Oxide is overloading the cycle in which case arginine would cause the same issue.
    If either of these things happens, your doctor will not see urea in your urine and hence will not detect the ammonia without detailed testing. The only way to deal with it through diet is low protein, which is impractical for many with ME.
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    end Senior Member

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    Would a high Urea reading on blood tests(LFTs)while on a high protein diet translate to the disfunction you outlined in point 1. ?
  11. Leopardtail

    Leopardtail Senior Member

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    It would more likely indicate you have a healthy urea cycle. Urea are basically urinated Ammonia.... meaning you are getting rid of it.
    I would experiment with slightly lowering the protein in your diet and see what happens.
    end likes this.
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    This paper may be of interest.

    The diagram on page 2 shows NH3 being consumed during conversion of glutamate to glutamine. As I said, there is interconversion between the two - it can work in either direction.

    I don't claim to be an expert on this but can only relate my own experience and cite authoritative sources.
  13. Leopardtail

    Leopardtail Senior Member

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    Most of it seems to match my current understanding MeSci, but I will take a look at it later to see if there is anything new - tx for the link. I have been looking into the urea cycle over the last couple of months and was working on Neurotrasmitters last year. I know the common opinions in ME are that we have both excess Glutamate and/or overactive receptors, but as yet am not sure of the quality the science. I preferred to get a much better handle on the basic science first.

    I know in general circulation Glutamine is regarded as safe stored Ammonia moving it around the body without toxicity and it releases when Glutamate is formed. Personally I seem to be atypical as an ME patient (assuming the common wisdom is correct) in that I tested and found high Glutamine, low Glutamate. The interactions are plate of spaghetti complex though.
    Last edited: May 17, 2014
  14. PeterPositive

    PeterPositive Senior Member

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    Very interesting thread. I am slowly reading through the whole discussion one bit at a time.
    Currently I am dealing with major digestive issues, even though the "Comprehensive Stool Analysis / Parasitology" lab from Great Plains didn't report major disasters.

    The main issues from the test are:
    - moderately imbalanced flora (no dysbiotic flora though, which is weird given that I am pretty gassy :) )
    - very low sIgA = 11.2 (range: 50-204 mg/dL)
    - Lots of Blastocystis hominis

    All other inflammatory markers etc are all in range, so it seems I am dealing with Blasto an possibly some SIBO, even though I haven't done a test for that.

    Blastocystis seems a bad beast to treat :( As far as I can see there's only S.Boulardii among non-drug treatments, but unfortunately I have pretty bad reactions even to low doses of any kind of yeast, including Boulardii and Cervisiae...

    I am now trying to help the gut with GSE, Zinc Carnosine and Glutamine and maybe retry Boulardii when I get some improvements.
    Oral glutathione seems also to be helpful, against all expectations and what I've read around here. Go figure.

    Questions:
    About ZInc Carnosine, I've read it can possibly lower stomach acid... which would be a problem for me, since I already have low HCL. Do you have any experience with this effect? What is a safe dosage?
    Since Zinc may deplete copper I'd like to avoid causing other harm. (Which makes me wonder why they don't add a tiny bit of copper to zinc supps to avoid this sort of issues)

    Colostrum: being a derivate of dairy does it contain lactose? That's another no-no for me even in minute doses :(

    Thanks
  15. PeterPositive

    PeterPositive Senior Member

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    One more thing about diet.
    Years ago I was suggested to cut all gluten-based cereals and replace them with rice, quinoa etc... to see if there was any intolerance on that front and to relieve inflammation. I thought it would make sense.

    I went ahead and replaced regular bread, pasta etc... with rice cakes, millet, buckwheat and similar non-gluten products.

    Unfortunately after a few weeks my abdominal discomfort peaked to new unexpected levels, and when I stopped the experiment and returned to wheat the extra problem went away.

    In retrospect I think the issue was that many of these non gluten products contain more fiber (such as rice cakes, buckwheat) and they can worsen a leaky gut. So it's not always a great idea to introduce more fibrous foods :(

    I also did experiment with other gluten free products that use alternative starches etc... but they seemed of relatively low quality in terms of ingredients and nutrition values.

    What's your experience with a gluten free diet?
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I think that my only experience from just cutting out gluten was a very-welcome loss of excess weight!

    I think that my health improvements only became apparent a few months later when I reduced grains and sugar. Summary details on Information section of my profile.

    So I needed a more general rethink on what to eat rather than just replacing gluten-containing foods with similar but gluten-free foods. I do use some of the latter (notably bread) but have generally moved towards palaeo, although not completely.

    BTW there is a very good site providing info on supplements, although you need to bear in mind the fact that the studies cited are not necessarily on ME/CFS patients, who may respond differently.
  17. PeterPositive

    PeterPositive Senior Member

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    I had the same effect, but I didn't need to loose weight! :eek: I guess, that's because most of our gluten-based products are based on refined flours that convert mostly to sugar and make you crave for more.

    I can clearly feel the difference with a dish of white pasta and the same amount of whole rice or quinoa. With the former I get hungry again much earlier and crave for sweets :rolleyes:
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Not sure about the connection with refined flours, as gluten-free stuff is quite heavy in refined flours too, I think. I think it is at least partly due to an effect of the gluten itself - maybe an inflammatory one?

    Having said that, I think that soon after I went gluten-free I tried substituting non-grain foods for grains - especially bread, which I used to eat quite a lot of. But I didn't much like the alternatives. I'm back to gluten-free bread again now, having found a good, cheap one, and my weight has stayed normal. My weight decreased until I was a healthy weight, then stopped.
  19. Leopardtail

    Leopardtail Senior Member

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    Peter,

    I am not expert enough to give a 'super authoritative' answer but a couple of obvious things spring to mind. First even in healthy people a sudden massive increase in fibre can cause severe abdominal pain - any change should be gradual. Second many products with Gluten also contain a lot of vitamin B1 - it might be worth supplementing that for a month to see what happens.

    Leo
  20. PeterPositive

    PeterPositive Senior Member

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    Hi, Leo
    switching to a non gluten diet can be dramatic and I did not do it gradually, which easily explains the problems.

    As regards B1, good point. Didn't know about the connection with gluten products. In any case my B complex has quite a lot of active B1 (25mg) and it's sublingual so I should be covered.

    cheers

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