1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
Discuss the article on the Forums.

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.

  1. Hip

    Hip Senior Member

    Messages:
    2,631
    Likes:
    2,406
    end
    Thanks for the suggestion.
    With difficult to digest supplements I now take some betaine HCl with them, and this seems to help.

    For us ME/CFS patients, as we are generally prone to having low stomach HCl, it might be an idea to always take some betaine HCl with our daily supplements, to ensure maximum digestion and absorption.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,078
    Likes:
    3,440
    Cornwall, UK
    Do you have links to any papers where it has been found that ME/CFS patients tend to have low stomach HCl?
  3. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    447
    Likes:
    228
    West Coast USA
    Could I trouble you to pm me or post the specific brand of liquid zinc and dosing you have found helpful? Thanks in advance.
  4. Hip

    Hip Senior Member

    Messages:
    2,631
    Likes:
    2,406
    Couldn't find any papers examining the stomach acid (hydrochloric acid) levels of ME/CFS patients when I searched just now, which is surprising. This would appear to be an area that needs to be better investigated.

    Anecdotally it seems that ME/CFS can experience low stomach acid (hypochlorhydria). I appear to suffer from it.

    There is a very simple home test for low stomach acid: the burp test for low stomach acid. To do this test, you only need some bicarbonate of soda. I have performed this burp test a few times, and my results show I have low stomach acid.

    The Burp Test For Low Stomach Acid: How To Do It:
    When you get up first thing in the morning, before eating or drinking anything:

    • Mix ¼ teaspoon of bicarbonate of soda (sodium bicarbonate) into a glass of cold water (around 150 ml of water), and drink it down in more-or-less one go.
    • Time how long it takes for you to burp.
    • After five minutes of timing, the test is complete.

    If your stomach acid production is normal, your first burp will appear within 2 or 3 minutes. But if your first burp appears after the 3 minute mark, this indicates a low stomach acid level.

    For higher accuracy, it is a good idea to repeat this burp test over several mornings, and take the average result.

    When I took this burp test myself, I did not burp at all within the 5 minute period of the test, and barely burped even after that period. Repeating this test the next morning, I also had the same results. So that definitely seems to indicate low stomach acid in my case.

    It may be a good idea to set up a poll on this forum, asking people if they have low stomach acid, as measured by the burp test. Many people will already some bicarbonate of soda in their kitchen (and if not, a jar just costs around £1), so this burp test is not only very easy to do, it is also very cheap.

    In Dr Myhill's article on hypochlorhydria (also available here) she states that the symptoms of low stomach acid include:
    I find I often get underarm odor when I don't take stomach acid replacement supplements like betaine HCl. I think the lack of stomach acid allows undesirable bacteria to grow in the gut, or fermentation in the gut to occur, and by-products from these bacteria and/or fermentation then get into the bloodstream and lead to underarm odor.

    Dr Myhill states that the possible problems that could arise from hypochlorhydria are:

    A while ago I was working on a theory that low stomach acid and low pancreatic enzymes might result from the dysautonomia that many ME/CFS patients have. Since both the parietal cells that secrete stomach acid, and the pancreas that secretes digestive enzymes, are controlled by the parasympathetic nerves, any disruption to the parasympathetic nervous system may conceivably lead to reduced stomach acid and pancreatic enzyme secretion.

    Many ME/CFS patients have autoantibodies to the muscarinic acetylcholine receptors found on the parasympathetic nerves (some refs given here), so if these anti-muscarinic autoantibodies are impeding parasympathetic nerve function, and thereby preventing the activating nerve signals getting through to the parietal cells and the pancreas, you might expect low stomach acid secretion, and low pancreatic enzyme secretion.

    Though as end mentioned above, gut pathogens might also affect the parietal cells. It is interesting that Dr Chia found that in his stomach biopsy research on ME/CFS, 82% of ME/CFS patients had evidence of enterovirus infection within their parietal cells in the stomach, compared to only 20% in the controls. So I wonder if this enterovirus infection in the stomach acid-producing parietal cells of ME/CFS patients may impede to function of these cells, leading to low stomach acids levels.

    And according to Dr Lapp, antibodies directed against thyroid and parietal cells are not uncommon in ME/CFS patients. So the immune system may be attacking your stomach acid-producing parietal cells (I guess this immune attack might be expected if these parietal cells are infected with enteroviruses).
    Gestalt, end, Asklipia and 2 others like this.
  5. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    447
    Likes:
    228
    West Coast USA
    Those theories make sense and need not be mutually exclusive. Could be a combo of viral involvement, auto-immune plus the usual decline in stomach acid as we age.
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,078
    Likes:
    3,440
    Cornwall, UK
    Maybe this would be an interesting way to subgroup ME sufferers. I'm pretty sure that I am one of those with the opposite problem - too much acid just about everywhere! I haven't tried the burp test with bicarb on an empty stomach but will do. I certainly burp plenty - and quickly - when I take it after eating. Also, today I have had some quite bad reflux-type pain.

    I did a quick search and found a paper from the 70s about Hypochlorhydria in rheumatoid arthritis, which appears to have a number of things in common with ME.
    Hip likes this.
  7. Hip

    Hip Senior Member

    Messages:
    2,631
    Likes:
    2,406
    Absolutely. Infections are generally linked to precipitating autoimmunity anyway, so you'd expect that the damage created by an infection might come both directly from the pathogen itself, and indirectly from any autoimmune attack the pathogen triggers.

    There is a similar story with autoimmune attack against the insulin producing beta cells in type 1 diabetes. Type 1 diabetes is strongly linked to enteroviruses like coxsackievirus B4, and the damage to the insulin secreting beta cells in the pancreas appears to come partly from direct infection of the beta cells with coxsackievirus B4, and partly from autoimmune attack against the beta cells, with this autoimmunity probably triggered by the coxsackievirus B4.
  8. globalpilot

    globalpilot Senior Member

    Messages:
    583
    Likes:
    199
    Ontario
    I failed the baking soda test many, many times. But HCL, even very high doses, never helped my digesiton at all. I was very puzzled so made the 7 hour trip to the closest naturipath who does the Heidelberg test.
    The resutls were that I produce too much acid. Go figure.

    I think the only real way to test the HCL, based on my n=1 experiment, is to trial the HCl at increasing doses.
    Sparrowhawk likes this.
  9. Hip

    Hip Senior Member

    Messages:
    2,631
    Likes:
    2,406
    globalpilot
    When you took the very high doses of betaine HCl, did you experience a burning and hot sensation in the stomach? In this article it says that if you have normal stomach acid levels and you take betaine HCl, you will experience this burning.

    I wonder if your high HCl result on the Heidelberg test might possibility have been affected by the stress of a 7 hour trip; stress can cause stomach acid secretion.
  10. globalpilot

    globalpilot Senior Member

    Messages:
    583
    Likes:
    199
    Ontario
    I stayed at my aunt's overnight and was driven there. I didn't feel any stress really. I would redo the test but the HCL didn't help me which further supports the idea my HCL isn't low

    Trying to remember how i felt when taking it - I never felt burning except one night I woke up with bad heartburn. But that was only once and at a really really high dose.

    I would have thought some dose amongst the increasing doses would have helped me if indeed I were low in it. But it never did, surprisingly. And I've trialled it several times.
  11. globalpilot

    globalpilot Senior Member

    Messages:
    583
    Likes:
    199
    Ontario
    BTW, when I go to my new gastroenterolgist in November I'm going to be doing the SMARTPILL which measures pH throughout the entire GI tract (as well as pressure and temperature).
    Fogbuster, MeSci and merylg like this.
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,078
    Likes:
    3,440
    Cornwall, UK
    That sounds brilliant! I did a very quick search and found this paper that seems to refer to the SmartPill - don't have time right now to check how good the paper is and whether it is definitely impartial.

    BTW I tried the fasting 'burp test' this morning and it took me 17 minutes to belch, and unlike the ones on a non-empty stomach, the belch did not taste strongly of bicarb.

    But couldn't the resulting gas go downwards instead of upwards...?

    I did a search of the ME Research UK database on ME/CFS for the word 'gastric' and found a couple of papers which may contain relevant info.

    http://www.biomedcentral.com/1471-230X/4/32

    http://www.ncbi.nlm.nih.gov/pubmed/17872383
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,078
    Likes:
    3,440
    Cornwall, UK
    I thought I'd take another look at the burp test link to see if it referred to any scientific evidence, and it doesn't. At least the writer admits this.

    He says:

    It's not clear whether he also thinks that it is not accurate enough to rule out high stomach acid.
  14. Hip

    Hip Senior Member

    Messages:
    2,631
    Likes:
    2,406
    MeSci

    I imagine this burp test probably came from naturopathy or similar, so it is doubtful if is has been validated.

    That writer I think is just repeating what is written elsewhere online; you find lots of websites which detail this burp test.This one seems to have slightly different criteria for low stomach acid: they say that only if your first burp appears after five or six minutes or longer then you probably have lower that normal stomach acid levels.

    It think the burp test should be looked at as a useful guide, and if this test does suggest you have low stomach HCl, try some betaine HCl, and see how you feel.

    Note that the betaine in betaine HCl is a methyl donor, and so will boost the methylation cycle. I tend to find methyl donor supplements of any kind cause me to get a little depressed, so I have to limit my betaine HCl to around 600 mg daily. What I do is take some betaine HCl, together with some vinegar (or sometimes malic acid) as my method of increasing stomach pH.


    Perhaps one advantage of low stomach acid: presumably any probiotics you take on an empty stomach should be better able to survive the journey through the stomach, if there are low acid levels!
    Sparrowhawk likes this.
  15. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

    Messages:
    917
    Likes:
    507
    Murcia, Spain
    Easy to say but after half a year or a year on a similar diet I am back to eating spelt, brown rice, organic mermelade and potatoes. I didnt feel that much better and my weight went down to 56 kg at the worst of this killer "paleo" diet. I also did fermented foods and stuff. Now I am 67 kgs and with an inflammed gut. Back then I was anorexic with an inflammed gut. At least now I look almost good and certainty walking isnt as hard

    I even went as far as buying a mixer just to make coconut milk. Tastes yummy but I discovered is one of the few foods that make my relatively asymptomatic gut get a fast and obvious inflammatory response. Coconut milk kefir will always be in my gastronomic nightmares, nothing comes closer in gag-inducing foods except maybe swiss chard juicing (yep I am always trying healthy things) .

    My take is diet alone wont cure this, especially since the reccomended diet is very expensive and/or with very rare items hard to find. I plan to go very strict on diet once I get a full array of IgG testing and start with the supplements. I dont know of anyone who cured leaky gut with diet only and I have been screening various forums and medical websites/studies for almost two years now.

    Oh yeah forgot to ask, for those that have been improving with a leaky gut protocol and diet, have you found less food particles, more consistency and healthier colours in... BM´s? Because this is one obvious indicator of how our gut goes and it tells me a lot.
  16. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    447
    Likes:
    228
    West Coast USA
    I've been following the threads and the Yahoo group for Low Dose Naltrexone. It seems for some people, LDN does help gut recovery, but I've seen other accounts that say if you have weak adrenals, cortisol issues, or hypoglycemia this may not be the low dose drug for you...so I'm still on the fence about trying it.
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,078
    Likes:
    3,440
    Cornwall, UK
    I'm sorry to hear that you don't seem to have benefited from the diet you tried. It sounds rather specific and rigid compared with what I am doing. All I'm doing is excluding gluten (and oats and buckwheat for now as I had possible setbacks when I tried them) and minimising grains and sugar (but not stinting on fruit, although I don't eat much fruit anyway), taking supplements and pacing more carefully. I don't have dairy or other animal products anyway.

    I also later replaced margarine and olive oil for cooking with coconut oil, for general health reasons.

    The only thing I was finding particularly expensive was gluten-free bread, but I then found a relatively-cheap one that I like. I've been on a very low income for a long time but found that I could feed myself well without much grain or sugar.

    Bowel motions were one of the first things to improve substantially for me - less frequency, less urgency and more solid and generally normal. I think they might stay that way if life let me rest more. Over-exertion can almost-certainly re-acidify the gut - however healthily we eat - via acidosis in the muscles, and it is indeed with PEM that I get recurrences of bowel problems.
    Beyond likes this.
  18. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

    Messages:
    917
    Likes:
    507
    Murcia, Spain
    If you dont eat grains what do you eat? More legumes, veggies and meats? My current diet relies heavily in grains and legumes to add the caloric load. I have found this is an easy way for me to avoid getting really skinny (it seems leaky gut in some people involves not getting enough weight from diet).

    I like grains and legumes because I am usually too depressed/pained to cook stews and elaborate recipes and they combined with a few ingredients are palatable and more caloric than my past paleo meals. I know, lectin overload, lots of antinutrients such as phytic acid, bad bad for leaky gut. It would be cool if my mother helped in that regard cooking me the healthy stews but that wont happen, I cook my food or I eat the mildly unhealthy done for everybody.

    I just know that for me low-carb isnt an option, at least not if I am not into some effective and quick-acting protocol at the same time for leaky gut. I am already unhealthily skinny and low carb always makes me worse, so much I ended thinking I was not absorbing anything from food and got so very stressed.
  19. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    447
    Likes:
    228
    West Coast USA
    Beyond, just curious when you were doing paleo, what proportion fat was of your diet? I get it that for folks like us, none of the usual "rules" for Paleo or any other diet for that matter seem to apply. For instance I was able to do dairy for a long while, just in the last six months I can't.

    I'm eating mostly fat, some protien and almost no carbs (30-40g). If I could eat carbs I would but ... severe reactive hypoglycemia.

    Initially I felt a lot better eating paleo. Then my I had what I think was h. pylori and lost a lot of weight (was down to just eating soft boiled eggs for a while). Once I recovered, I found it took me a lot longer to get the fat absorption aspect up for me (I had to take enzymes) to start gaining weight again. Now I'm not taking the enzymes, but still holding the weight. I'm also eating like five times a day. If there is a supply chain interruption of groceries I'm completely hosed!

    All of this is a long winded way of asking -- are you taking digestive enzymes? They can help w. nutrient absorption.
    Beyond likes this.
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,078
    Likes:
    3,440
    Cornwall, UK
    I'm a vegan, so no animal products. Have been for 30 years.

    I do eat grains, just not wheat, barley, rye or oats, and less grain overall then before. So I don't often have rolls or sandwiches like I used to, I have half the mount of pasta I had before and replace the other half with salad. I do have a small amount of legumes. But like Sparrowhawk, I probably get most of my calories from fat, in my case from coconut oil. Conventional advice about reducing fat intake is probably wrong for the majority of people. It's carbs that are the killers. They cause blood glucose to swing wildly up and down, which leads to insulin resistance and, increasingly, to Type 2 diabetes.

    I think potatoes are healthier than grains, so maybe try replacing some grains with them? With plenty of fat? Mmmmmmm!

    I also eat nuts - roasted, salted ones. I also need a lot of salt.

    I don't like cooking, so spend as little time doing it as I can, but like to eat healthily and enjoy my food.

    My weight has gone from constantly creeping up, then needing careful, hunger-filled dieting to get it down again, to stabilising at a healthy BMI (about 22, I think), and I don't have to be hungry!
    Beyond likes this.

See more popular forum discussions.

Share This Page