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

Hip

Senior Member
Messages
17,824
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.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
end

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.

Do you have links to any papers where it has been found that ME/CFS patients tend to have low stomach HCl?
 

Sparrowhawk

Senior Member
Messages
514
Location
West Coast USA
Try liquid Zinc... Have before and after blood work reflecting the bioavailability of the liquid over the tabs/caps.

I cannot tolerate zinc tabs/caps either, as mentioned on this forum some where else.. Low stomach acid(hypochlorhydria) and zinc supplementation can be problematic.

McBride(GAPS)has stated Pathogens in the digestive system damage the acid producing cells in the stomach which reduces acid production etc
Could I trouble you to pm me or post the specific brand of liquid zinc and dosing you have found helpful? Thanks in advance.
 

Hip

Senior Member
Messages
17,824
Do you have links to any papers where it has been found that ME/CFS patients tend to have low stomach HCl?

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.


Burp Test For Low Stomach Acid

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:
Wind, gas and bloating as foods are fermented instead of being digested, i.e. irritable bowel syndrome.
A tendency to allergies. The reason for this is that if foods are poorly digested then large antigenically interesting molecules get into the lower gut, where if the immune system reacts against them, that can switch on allergy.
Iron deficiency (anemia).
B12 deficiency.
A tendency to Candida dysbiosis or bacterial dysbiosis (imbalance in the natural flora of the gut).
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:
Failure to digest foods properly. This will result in a general malabsorption of proteins.
Failure to absorb trace elements.
Failure to sterilise the stomach contents. This will make individuals more susceptible to gut infections such as gastro-enteritis and possibly enteroviruses such as Epstein-Barr virus, Coxsackie virus, Echovirus and so on. Gastric acid is an essential part of normal defences against disease. Gastric acid is also essential for getting rid of undesirable bacteria and yeast that appear in the diet. However, if there is an overgrowth of bacteria and yeast in the stomach, then foods will get fermented instead of being digested. This produces wind and gas resulting in bloating and alcohols, which may or may not be useful to the body.
Increased risk of stomach cancer. Having the wrong bacteria and yeast in the stomach will irritate the lining of the stomach and increase one's risk of stomach cancer.
Malabsorption of vitamin B12. It is well known that the stomach must be acid in order to absorb B12.


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).
 
Last edited:

Sparrowhawk

Senior Member
Messages
514
Location
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.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
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:


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).

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

Senior Member
Messages
17,824
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.

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.
 

globalpilot

Senior Member
Messages
626
Location
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.
 

Hip

Senior Member
Messages
17,824
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.
 

globalpilot

Senior Member
Messages
626
Location
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.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
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).

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
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
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.

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:

there are problems with this test. Overall all there are a lot of variables to control. Trying to minimize all the variables can be tough and I would recommend performing the test 3 consecutive mornings to find an average. By doing this, you’re looking for more of a pattern than a onetime test of “yes” or “no”. Also, to increase accuracy of the test, you must do it as soon as you wake up in the morning before putting anything in your mouth.

For the record, I’m unaware of any scientific studies that prove this method of stomach acid testing is either reliable or accurate. The results of this test can vary widely and it’s up to your interpretation, both of which are not ideal...Because the time frames can vary person-to-person, as well as how they drink the solution, this test is only a good indicator that you might want to do more testing to determine your stomach acid.

This test is not accurate enough to rule out low stomach acid.

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

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
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.

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:

there are problems with this test. Overall all there are a lot of variables to control. Trying to minimize all the variables can be tough and I would recommend performing the test 3 consecutive mornings to find an average. By doing this, you’re looking for more of a pattern than a onetime test of “yes” or “no”. Also, to increase accuracy of the test, you must do it as soon as you wake up in the morning before putting anything in your mouth.

For the record, I’m unaware of any scientific studies that prove this method of stomach acid testing is either reliable or accurate. The results of this test can vary widely and it’s up to your interpretation, both of which are not ideal...Because the time frames can vary person-to-person, as well as how they drink the solution, this test is only a good indicator that you might want to do more testing to determine your stomach acid.

This test is not accurate enough to rule out low stomach acid.

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

Hip

Senior Member
Messages
17,824
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!
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
Eliminate all grains, nuts, legumes, dairy, nightshades and anything sweet. Add fermented foods and bone broths. Stay on liquid foods for a while. Bone broths are the best for leaky gut. Supplements won't help if you don't eliminate the foods causing autoimmune response.

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.
 

Sparrowhawk

Senior Member
Messages
514
Location
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.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
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.

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

Juice Me Up, Scotty!!!
Messages
1,122
Location
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.
 

Sparrowhawk

Senior Member
Messages
514
Location
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.