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

[Adlyfrost]

I also think that if one does not heal the damage done to the intestines by the virus, EVEN if anti-viral treatments ARE successful, the chance of relapse is high. Good argument I think to treat leaky gut regardless of how one came down with CFS.

 

[MeSci]

Leaky Gut Syndrome you'll have to convince me that this isn't another goose hunt: I was amazed to find reference to it on NHS Choices but not surprised at the skepticism. I am aware of course that Maes is rather (1) alone (2) in pushing this connection of permeability in CFS: but I don't buy it or him.

I think the title of the thread is misleading Hip - sorry: not that I am arguing you should change it. There is nothing to confirm 'leaky gut' or that it is even applicable to ME other than theory and a couple of papers that were uncontrolled. I'd be interested to learn the outcome of the IiME research but I don't hold out much hope. The research seems too broad and intangible somehow although I can't seem to find precise details of the study.

They should at least be doing controlled research: non-ME people with no tummy problems; non-ME people with or who believe they have IBS; and people with ME with or who believe they have IBS; with people with ME with no tummy problems: then test the 'permeability' of the tummy lining etc. whatever the heck that actually means.

You need to demonstrate that PwME do not 'simply' have IBS and that permeability is actually part of the ME process. Prove 'leaky-gut' before seeing if it applies to ME. Does everyone with ME have tummy-problems? Does everyone with ME have these gaps in cells of their stomach linings? And what exactly is passing through this sieve and causing ME? The same thing or different things? All of that has to be answered before your start selling remedies.

If people feel better and if it resolves their symptoms and discomfort by playing with their diets and chopping and changing supplements then that is brilliant. Do not get me wrong. So long as it doesn't lead to other complications. If going gluten-free seems to really help then ensure you don't have celiac disease. It could account for other ME-like symptoms too.

But explain to me how 'fixing' leaky-gut is even possible when 'leaky-gut' has not been accepted as a viable theory let alone one applicable to PwME? I mean you are essentially talking about plugging up the unproven 'holes' in-between cells. Or taking a remedy or changing you diet in the hope that it will promote the growth of new cells that don't have these 'holes'. This is damage that for example it is believed alcohol dependency and even certain continuing medication might cause - though these too are debatable theories and probably restricted to the worst abuses.

So whatever you do to try and remedy the situation - if it exists - has to in some way produce a 'glue' to repair the barrier and prevent continuing damage or help regenerate the new stronger cells. Because you are essentially hoping that you stop whatever it is from falling through the gaps and getting into your blood and doing or continuing to do something nasty: whatever that may be.

I'm wondering whether you have checked out all the links that provide evidence that leaky gut is a real phenomenon, Firestormm

This one for example about how it can lead to autoimmunity:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886850/

As you can see, it is very technical, but includes plenty of references, and it is not by Maes! No, it doesn't refer to ME/CFS, but putting it together with the good evidence that exists for ME being an autoimmune disease, it's pretty strong IMO, especially combined with the collective anecdotal evidence from many sufferers that a leaky gut diet helps a lot - myself included.

 

[MeSci]

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.

Bone broths...fine if you're an omnivore! I haven't added any fermented foods, but I do drink a small amount of wine! I would also say that it's sugary things one needs to avoid rather than sweet things. I have replaced sugar in tea and coffee with the fairly-natural low-GI sweetener xylitol, and also eat a little xylitol-sweetened chocolate.

I think there are a few different ways to heal the gut, but eliminating problem foods is indeed always essential. I didn't eliminate legumes or nightshades, but have reduced them a bit. I have also cut out wheat, rye, barley, oats and buckwheat, and just have a modest amount of grain-based products such as bread, pasta and crispbread, made from different grains (e.g. maize/corn and rice).

As I said in another recent thread, there's no point keeping lots of foods in your diet if they are causing food to pass through you too fast for you to digest it and absorb the nutrients. The leaky-gut diet is basically a palaeo diet, and just excludes foods that have been added in recent human history - too late for many people to be well-adapted for.

The wrong foods will also lead to the wrong gut flora, adversely affecting digestion. The right ones (maybe plus supplements) will gradually correct the floral balance. Gut flora are discussed in another thread or several.

BTW, evidence for the gut being strongly involved in ME aetiology includes Sheedy's work on d-lactic acidosis, discussed in another thread.

I agree with Adlyfrost that (to paraphrase) looking for a definite cure, at least at this time, is living in cloud-cuckoo land. Science is not generally about certainty anyway. One study on its own cannot explain everything, but putting the evidence from diverse studies together can provide quite a complete picture and a credible hypothesis that is strong enough to act on.

A problem with research in the area of diet, unless involving a specific food that can be patented or similar, is the lack of financial incentive to carry it out. It often needs governments, philanthropists and sufferers to get behind it financially to take it further.

 

[Firestormm]

Once again I ask 'How do you fix a leaky-gut?' and prove you have fixed it. As the thread title implies, this is allegedly possible. Have you managed it? Can you tell me you have 'repaired the damage'? If so how is this possible with diet alone? How can you determine leaky-gut symptoms from your ME-symptoms? When leaky-gut is a theory; and treatment of leaky-gut is even less of a theory especially with diet?

The theory of leaky-gut can be/should be tested and proved BEFORE treatments are considered as helping or fixing. Nowhere have I implied holding out for a cure. I am saying the title of this thread is erroneous. You cannot say that diet adjustments are any more responsible for improvements or deterioration in your ME symptoms than in your leaky-gut beliefs. And as you are all still here I don't suppose any of you have achieved 'full remission' either.

Well a fair few diet books on Amazon that mention leaky-gut. This one lists a so many diseases as having leaky-gut in common including AIDS; that it should be the most researched theory out there. And all fixable by diet. Outside of allergies and known substances linked to diseases like celiac; demonstrate that a well balanced diet is any less beneficial.

Again, if you have found that playing with your diet has improved your overall health then terrific. And I really don't mean any offence; but the thread title.... really?

 

[MeSci]

Once again I ask 'How do you fix a leaky-gut?' and prove you have fixed it. As the thread title implies, this is allegedly possible. Have you managed it? Can you tell me you have 'repaired the damage'? If so how is this possible with diet alone? How can you determine leaky-gut symptoms from your ME-symptoms? When leaky-gut is a theory; and treatment of leaky-gut is even less of a theory especially with diet?

The theory of leaky-gut can be/should be tested and proved BEFORE treatments are considered as helping or fixing. Nowhere have I implied holding out for a cure. I am saying the title of this thread is erroneous. You cannot say that diet adjustments are any more responsible for improvements or deterioration in your ME symptoms than in your leaky-gut beliefs. And as you are all still here I don't suppose any of you have achieved 'full remission' either.

Well a fair few diet books on Amazon that mention leaky-gut. This one lists a so many diseases as having leaky-gut in common including AIDS; that it should be the most researched theory out there. And all fixable by diet. Outside of allergies and known substances linked to diseases like celiac; demonstrate that a well balanced diet is any less beneficial.

Again, if you have found that playing with your diet has improved your overall health then terrific. And I really don't mean any offence; but the thread title.... really?

Whom are you asking, Firestormm? The thread title was created by Hip, so only Hip can comment on that really!

I do not know I have fixed my gut. I am not prepared to have a biopsy taken or any other invasive investigation, unless it is required to save my life. But the improvements in my bowel function are dramatic, as are other changes, which I have listed here and/or elsewhere.

It is possible to have leaky gut without gut symptoms, I believe.

All I can do is what I have done: cite and link scientific papers that, taken together, provide strong evidence that leaky gut is a likely basis for autoimmunity and that a dietary change can undo the damage, and that this also combined with plentiful anecdotal evidence provides a good reason to try it.

I certain would not regard it as 'playing with my diet'. I am extremely serious about trying to fix my illness, which is substantially better than it was when I started the regime. I expect it to take a few years to improve things more substantially or even - I dare to hope - return me to a state of being ME-free or almost so. I have explained here and/or in other threads why it may take years, using an analogy of vaccinations and the need for boosters.

You say

it should be the most researched theory out there. And all fixable by diet.

and I have pointed out why it is not as researched as it should be. Because it cannot be patented and turned into megabucks!

I ask this in a friendly way, Firestormm, but are you very fond of what you currently eat? I know that people can be very unwilling to change their diets, and may consequently try to rationalise this by coming up with other reasons not to do it...

Please don't put other people off trying though! It's not exactly dangerous, unlike some of the drugs on offer.

I have not claimed to prove anything, and, as said elsewhere, science is not actually about proving things. It is about formulating hypotheses and finding evidence for and against them by testing them. Evidence can take diverse forms.

Can I rest my case now - it's getting heavy!

 

[xchocoholic]

Dr Oz just had a guest on his show who did a segment on this last week. He explained it via multiple props too which makes it easier to understand. Tc ... X

 

[Hip]

Firestormm

If you look up leaky gut on PubMed, you will see that there are dozens of studies on this, and the reality of leaky gut (aka: intestinal permeability, or: intestinal hyperpermeability) is not in question. Leaky gut may not yet be a condition routinely recognized and tested for by your average doctor, but in medical research circles, it seems its existence is not doubted.

Once again I ask 'How do you fix a leaky-gut?' and prove you have fixed it. As the thread title implies, this is allegedly possible.

Testing for leaky gut (intestinal hyperpermeability) is very straightforward, and is discussed earlier in this thread (here). In short, you use the mannitol lactulose test. This urine sample-based test can be performed at home.

Studies like this one from 1991 show that intestinal permeability can be measurably decreased by dietary intervention.

If you want to test for the intestinal permeability in your own gut, consider taking the mannitol lactulose test.

If this test shows you have leaky gut, you can then, if you so desire, take the test again to see if any leaky-gut fixing diet, supplements or drugs you take have made any improvements to your intestinal permeability level.

I did not take this mannitol lactulose test myself, because I did not want to spend the money.

I am saying the title of this thread is erroneous.

The title of this thread encapsulates what was found in these two studies on ME/CFS patients:

Normalization of leaky gut in chronic fatigue syndrome (CFS) is accompanied by a clinical improvement.

Normalization of the increased translocation of endotoxin from gram negative enterobacteria (leaky gut) is accompanied by a remission of chronic fatigue syndrome.

 

[Adlyfrost]

Firestormm: I think one will know when they in full remission! That means no more fevers, excercise intolerance, brain fog, sores, chills, 'inability to walk it is so bad' fatigue, palpitations, low BP, etc.

I should know if it works in about 2 more months. If it doesn't, I'll be the first to own up to it. If it only makes me feel a little better, reduces crashes- then it will have worked as good as any scientifically proven supplement or drug. But I will left you know.

MeSci: There are degrees of food intolerance and sensitivities. I am very severely damaged. All the foods I mentioned can cause reactions so I have eliminated them all until I heal. Fermented foods include coconut Kefir, sauerkraut, cultured coconut milk- foods with massive amounts of good microbes. I don't know if there are any microbes in wine, and alcohol can feed harmful microbes- so be careful. I do plan on going back on pineapple, grapes and healthy sweet foods in moderation once I am healed. But the rest of the food is gone for good. If get healthy, I don't want to ever go back! I'll eat bugs if I have to.... ok, may be- please don't quote me on that.

 

[Hip]

The only leaky supplement that I have taken daily for 18 months now is N-acetylglucosamine 750 mg. I have had very good results with this (my ME/CFS has much improved over this period of time). Though I think the benefits of N-acetylglucosamine (NAG) are likely also due to reasons other than its supposed leaky gut benefits. So I would recommend people include NAG in any leaky gut protocol they try. I buy Jarrow N-acetylglucosamine, which is good value for money.

 

[MeSci]

MeSci: There are degrees of food intolerance and sensitivities. I am very severely damaged. All the foods I mentioned can cause reactions so I have eliminated them all until I heal. Fermented foods include coconut Kefir, sauerkraut, cultured coconut milk- foods with massive amounts of good microbes. I don't know if there are any microbes in wine, and alcohol can feed harmful microbes- so be careful. I do plan on going back on pineapple, grapes and healthy sweet foods in moderation once I am healed. But the rest of the food is gone for good. If get healthy, I don't want to ever go back! I'll eat bugs if I have to.... ok, may be- please don't quote me on that.

I echo your feelings on this. The way I have put it personally is - yes, I loved some of the foods I have given up, but I love my health more. I would add - I hate being ill, and giving up a few foods which only gave brief pleasure while I was eating them is well worth it if it means that I can stop feeling ill much of the time.

In any case, I am still enjoying my food - it's just different food, and it took a while to figure out what to eat instead of my prohibited/reduced foods. All part of the journey/adventure that is life!

 

[Firestormm]

Hip I can't promise I will complete my reading and return (relief all round) but, you will be pleased to know I have spent the last 2 hours reading through some papers and broadening my mind. Unfortunately, I still don't buy it. But leave it with me as I want to read De Meilier and Maes's theories; and try and understand how your test can be applied to ME when it has been looked at for crohn's disease but is not the preferred route to diagnosis: and blood tests and biopsy is the preferred route for coeliac. I get that the generalisation of permeability possibly plays a role in a whole host of disease: but I still don't think it has made the necessary jump to conventional medicine. Clinical trials are lacking.

MeSci re your comment about my possible intransigence in relation to my own diet. I am afraid you are wrong. I rarely adopt a position without first having dipped my toe in the water; and dietary experimentation believe me was another costly avenue that was explored. Load of nonsense in my case.

But again and please let me stress; if anyone feels better for having stuck to some recommended dietary plan or reached this point with their own independent efforts: then good for you.

The 'leaky-gut' link to ME remains theoretical. And I will get to grips with that test though; so help me gods

Edit: I got me crohn's and coeliac muddled above. Corrected.

 

[Lala]

There is a test for leaky gut, see http://www.leakygut.co.uk/testing.htm
As far as I know healthy controls have different test results from those with leaky gut.

 

[MeSci]

Hip I can't promise I will complete my reading and return (relief all round) but, you will be pleased to know I have spent the last 2 hours reading through some papers and broadening my mind. Unfortunately, I still don't buy it. But leave it with me as I want to read De Meilier and Maes's theories; and try and understand how your test can be applied to ME when it is used for coeliac disease. I get the generalisation of permeability possibly playing a role in a whole host of disease: but I still don't think it has made the necessary jump to conventional medicine. Clinical trials are lacking.

MeSci re your comment about my possible intransigence in relation to my own diet. I am afraid you are wrong. I rarely adopt a position without first having dipped my toe in the water; and dietary experimentation believe me was another costly avenue that was explored. Load of nonsense in my case.

But again and please let me stress; if anyone feels better for having stuck to some recommended dietary plan or reached this point with their own independent efforts: then good for you.

The 'leaky-gut' link to ME remains theoretical. And I will get to grips with that test though; so help me gods

Healthy scepticism is a good thing, as is an open mind.

It takes a very long time for research findings to translate into clinical practice, and even then, treatments are continually being found to be ineffective even when they have been used for years, as is clear from the regular updates in Physician's First Watch. So I have more faith in science and pooled experience than in conventional medicine, which - it must not be forgotten - is itself responsible for a lot of illness, injury and death. I myself have suffered too many bad experiences with the NHS to have much faith in them any more.

There is info here about the slow leap from research findings to clinical practice:

http://www.esf.org/coordinating-res...of-medical-research-in-clinical-practice.html

Hope you didn't take offence at my casting of nasturtiums.

 

[Firestormm]

There is a observable leap in logic that I did observe and which has not been satisfactorily explained. Aside from folk putting 'feeling better' through changes in diet down to 'leaky-gut' without evidence; and 'leaky-gut' remaining a theory for ME and other diseases; and that is that the association between coeliac and the antigen gluten is actually very unique.

For other theories pertaining to food substances and 'leaky-gut' the jury is out: both on the theory and on any other antigens. It seems that the leap has been made both in terms of the theory applying to other diseases and to the problem being helped by removal and replacement of items within a diet including gluten. There is another possible explanation for feeling better after the removal of certain food substances of course and that is allergic response and/or intolerance.

No offence taken MeSci. Hope the same applies.

 

[MeSci]

There is a observable leap in logic that I did observe and which has not been satisfactorily explained. Aside from folk putting 'feeling better' through changes in diet down to 'leaky-gut' without evidence; and 'leaky-gut' remaining a theory for ME and other diseases; and that is that the association between coeliac and the antigen gluten is actually very unique.

For other theories pertaining to food substances and 'leaky-gut' the jury is out: both on the theory and on any other antigens. It seems that the leap has been made both in terms of the theory applying to other diseases and to the problem being helped by removal and replacement of items within a diet including gluten. There is another possible explanation for feeling better after the removal of certain food substances of course and that is allergic response and/or intolerance.

No offence taken MeSci. Hope the same applies.

Certainly no offence here!

I wonder whether you (and others here) have seen this recent thread I posted about gluten also affecting non-coeliacs:

http://forums.phoenixrising.me/inde...-diet-helps-people-with-diarrhoeal-ibs.24467/

It's one of a number of papers and articles I have seen on the subject recently.

 

[Sparrowhawk]

I have run into a naturopath/alternative healing bias to just say "leaky gut" as if that explains any kind of IBS a person may have. Also the assumption that if you eat any food long enough, and have a leaky gut, your body will begin to develop "allergies" or an immune response to that food. Remedies they would suggest abound but none of them seem to be things I can tolerate. For example I tried glutamine which is supposed to help rebuild your intestinal lining, but my stomach rebelled.

With that said, traditional Western medicine helped me no more than the alternative side of the house. Full scoping and biopsies from both ends produced the IBS diagnosis, which the Gastro Dr. said to me is "what we call it when your guts are a mess but we don't know what's wrong with you." Brilliant.

I have to say it was -- and I mean this without irony -- validating and confirming to find this board and that gut involvement is in fact a common issue for ME/CFS folks. Still sifting through this section on what people do to try to mitigate that. I've already eliminated all sugars, carbs almost entirely, almost all nuts/seeds, all milk/cheese, and while each of those steps helped in the stages when I removed the food items, my digestion over all has not been improving lately. I'm at the point of needing to add things back rather than take away.

 

[Gypsy]

Sparrowhawk

Have you been tested or treated for possible SIBO? The antibiotic Xifaxan helped my "IBS" symptoms. So I am guessing it has really been a problem of too much bacteria in my gut/small intestine since this antibiotic helped.

Sadly, it really did not help my ME/CFS or help me achieve full remission-I wish! But, atleast I was finally able to find something that helped my gut symptoms- mainly bloating. Usually repeat courses are needed though of the abx.

 

[Sparrowhawk]

Gypsy I did the full Genova/Metamatrix stool test twice over the course of 2 months, and nothing dire showed up there other than a high % of lymphocytes and some fat absorbing issues. I'm taking enzymes which seems to help my stomach emptying. Not sure if that would have shown SIBO or if I need to do a different test for that? What would you recommend? Thanks.

 

[Gypsy]

Gypsy I did the full Genova/Metamatrix stool test twice over the course of 2 months, and nothing dire showed up there other than a high % of lymphocytes and some fat absorbing issues. I'm taking enzymes which seems to help my stomach emptying. Not sure if that would have shown SIBO or if I need to do a different test for that? What would you recommend? Thanks.

The "gold standard" test for SIBO is the lactulose/mannitol test. There may be an at home version. Most people though have to have this test at a hospital/doctors office.

I have never had these tests. I was prescribed Xifaxan solely on symptoms. I have had IBS symptoms for 10+ years. But in the last few, EVERY food I ate made me bloated. Terribly bloated. So I was prescribed Xifaxan based on IBS dx and symptoms. It has been studied and shown effective for a certain percentage of people with IBS.

I believe many cases of IBS are actually SIBO. Are you made worse by probiotics? I am. Adding in additional bacteria via probiotics was doing me no favors!

Someone else got substantial improvement after taking several heavy duty courses of antibiotics for an unrelated problem- urinary tract infection I think. They must have wiped out the bacteria causing the symptoms.

Sadly, usually repeat courses of abx are needed in SIBO. Wish there was a permanant fix.

P.S. I have also been probed and prodded over the years with all the GI tests, endoscopies, colonoscopies, gastric emptying tests, and some I don't even know the name of. They never came up with any diagnosis other than "IBS" (I also do have Acid Reflux).

 

[Sparrowhawk]

I'd be really loathe to try antibiotics again unless I'm dying, as I feel two years of Doxy is part of what got me in this mess.

I don't get the bloating at this point, just the D. I can't seem to make well formed stools. Have wondered if that's the high fiber diet but in the past on the same diet things have come out almost undigested. What I get now is really almost too digested.

I haven't taken probiotics for a while, in anticipation of doing the American Gut Project test -- they want to be sure you get a straight read of what is in your gut without outside influences. When I did start to go back on them they seemed to make things worse -- opposite of my previous experience.

What was truly weird is some of my best weeks were right after the scoping procedure. As though getting entirely cleaned out perhaps helped things reset for a while. Still not willing to drink two liters of that stuff again any time soon!