Fixing Leaky Gut Helps ME/CFS, and Sometimes Achieves Full Remission
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Mary, leaky gut can be caused by a number of things. SIBO, FODMAP malabsorption and low stomach acid can all cause leaky gut. Your diet can be dialed in and your gut will remain leaky if the underlining cause is not fixed.
MeSci
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Maybe you can get away with doing the diet without supplements, although l-glutamine is generally very well-tolerated as far as I know. I take grapefruit seed extract rather than grape seed extract, but this is pretty powerful stuff that can interact with some meds (notably warfarin) so you might want to forgo that. (It suits me fine.) I only use that when my gut starts playing up again and I want to fix it as quickly as possible.
I also take sodium bicarbonate, which some people have also reported to be beneficial for interstitial cystitis.
These two sites:
http://www.umm.edu/medref/
http://lpi.oregonstate.edu/infocenter/
are good sources of info on supplements, but you may need to look elsewhere re grapefruit seed extract (GSE). Some of the online info claims that any efficacy is due to contaminants. It may be that some GSE is contaminated, but I am fairly confident that the one I use isn't (Viridian).
MeSci
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Do you have dairy? Some people are sensitive to this. The leaky gut diet used by Maes and Lunis excluded milk.
I think that it is also necessary to reduce exertion and stress as much as possible, as these too will acidify the blood, making it harder for the gut to achieve and maintain a healthy pH.
No I don't have any dairy and not for a long time. I am rarely able to exert myself so that leaves stress? Other than that which my illness causes I don't have any real source of stress, for which I am so grateful as I know many have.
Misfit Toy
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My next question is....people are recommending grape seed extract. What about D-Limonene? I am taking that for reflux. The extract of an orange peel. It seems similar to GSE.
MeSci
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Are you taking any of the supplements that may complement the leaky gut diet? As Junto says, there may be other things that need addressing.
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hi me sci. you make some very interesting observations.
i tried gluten free, wheat free, and a few other diets in 2007 (been sick since 1993) but they made me feel awful and sicker. however, now i have to wonder whether it wasn't some kind of die off.
if i respond to the next trial of xifaxan, i will surely try some kind of diet. everything is so slow going, i wonder if i won't just spend the rest of my life trying to get a handle of this disease and then die..whats the pont
I'm almost certain you'd feel better in the long run going off of gluten/wheat. Nobody is healthier for eating wheat, it is very low in nutrition and is chock full of anti-nutrients and proteins that aggrevate the immune system.
MeSci
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I feel strongly that this thread needs a hefty
BUMP.
Evidence IMO points to fixing leaky gut being probably the first step for many/most ME patients.
Then as health improves slowly, physical activity will increase as the body indicates that it can cope with more.
Leaky gut treatment = Horse
Activity = cart.
Trying the cart first will not work IMO.
Patience is essential. This is not a quick fix, but I think there is good reason to believe that it is a REAL fix. There will be setbacks due to dietary mistakes and supplements not suiting people, as well as due to exertion and stress.
But the overall trend should be positive. It certainly is for me.
About the only thing that has not improved is energy, so maybe that is the last thing that gets fixed.
I've been on the regime for over a year. I see no reason to stop, and every reason to persevere.
BUMP.
Evidence IMO points to fixing leaky gut being probably the first step for many/most ME patients.
Then as health improves slowly, physical activity will increase as the body indicates that it can cope with more.
Leaky gut treatment = Horse
Activity = cart.
Trying the cart first will not work IMO.
Patience is essential. This is not a quick fix, but I think there is good reason to believe that it is a REAL fix. There will be setbacks due to dietary mistakes and supplements not suiting people, as well as due to exertion and stress.
But the overall trend should be positive. It certainly is for me.
About the only thing that has not improved is energy, so maybe that is the last thing that gets fixed.
I've been on the regime for over a year. I see no reason to stop, and every reason to persevere.
Hip
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What leaky gut fixing supplements have you been taking for the last year, MeSci?
MeSci
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L-glutamine, plus periodic short courses of grapefruit seed extract (GSE) when bowels have got loose again - it's an antibiotic that I use which fixes the gut although I am not exactly sure whether it's because it preferentially kills the bad gut flora or whether it reduces them overall, enabling the diet to create the right balance again.
I also take sodium bicarbonate to reduce acidity, and alpha-lipoic acid, acetyl-l-carnitine and omega-3, and also bone minerals, but I can't remember offhand what I take some of these for!
I've provided links in an earlier message to sites which have pages on these supplements, except perhaps GSE and bicarb.
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.
Firestormm
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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 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.
It's not just a matter of having "tummy problems" and "feeling better" when avoiding certain foods. My entire body swells up extra when eating gluten, eggs, and cranberries. It's an objective sign of dysfunction which anyone who cares to can observe. I'm also not aware of any explanation for such a systemic problem other than an immune reaction to the foods which trigger it.
I didn't have any of these problems prior to getting ME.
Firestormm
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And do you attribute this to 'leaky-gut'? You know where I am going with this: the title of the thread and all and it being theory and wonky at best. I am though sorry if I have downplayed your symptoms. Believe me my Mumsky has to avoid certain foods too and she swells like a balloon and has terrible tummy trouble if she inadvertently or experimentally eats something she knows she shouldn't. She feels absolutely dreadful too. She doesn't have ME however: at least not to our knowledge - always a possibility as we are in this forever grey area of knowledge.
August59
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A lot of the time you will here it referred to as "Increased intestinal permeability".
Firestorm, I had leaky gut for a long time before CFS. My symptoms were not "tummy problems" at all. It started at puberty with geographic tongue. Soon after I started to get ringworm alot, developed severe scoliosis and was shaky and weak for no reason. With each life event I developed more weakness and finally, viral symptoms. I went off gluten 18 years ago and it helped tremendously- NOT for "tummy problems" but for brain fog and HPV. But it wasn't enough. Soon after I became intolerant of other foods that I failed to address until years later.
After a flu in 1999 that was so bad I couldn't eat anything but broth for a month, I noticed for the first time since puberty my geographic tongue went away- and the only time. After I resumed eating it came back and so did a host of viral symptoms such as persistent low grade fevers that just got worse. Digestive problems weren't apparent until after this.
Then there was body temp problems, exercise intolerance and being in bed most of the time, heart palpatations, rashes, and sores on my face and mouth, parasites, peeling skin, and worsening viral symptoms, persistent upper respiratory congestion, chronic sore throats, periods from hell, narcolepsy, etc. Most of the time I was house bound. Sun or cold would trigger crashes that would leave me in bed for months. I believe my "leaky gut" or, 'autimmune response to foods that destroyed the immune system in my small intestine,' left me suscestible to ENTEROVIRUSES that caused my CFS.
With others PWC's, perhaps the virus causes the leaky gut. I don't know. Chicken or egg? But if CFS is caused by an intestinal virus- makes sense to heal the intestines if possible. My indicator for this is my geographic tongue. I believe when it goes away I have this thing licked. But it takes time. It is VERY difficult. Will keep you posted.
After a flu in 1999 that was so bad I couldn't eat anything but broth for a month, I noticed for the first time since puberty my geographic tongue went away- and the only time. After I resumed eating it came back and so did a host of viral symptoms such as persistent low grade fevers that just got worse. Digestive problems weren't apparent until after this.
Then there was body temp problems, exercise intolerance and being in bed most of the time, heart palpatations, rashes, and sores on my face and mouth, parasites, peeling skin, and worsening viral symptoms, persistent upper respiratory congestion, chronic sore throats, periods from hell, narcolepsy, etc. Most of the time I was house bound. Sun or cold would trigger crashes that would leave me in bed for months. I believe my "leaky gut" or, 'autimmune response to foods that destroyed the immune system in my small intestine,' left me suscestible to ENTEROVIRUSES that caused my CFS.
With others PWC's, perhaps the virus causes the leaky gut. I don't know. Chicken or egg? But if CFS is caused by an intestinal virus- makes sense to heal the intestines if possible. My indicator for this is my geographic tongue. I believe when it goes away I have this thing licked. But it takes time. It is VERY difficult. Will keep you posted.
Actually, with me, 'leaky gut' causes more symptoms of the NERVOUS system than anything else.
I was gluten free and still eating grains 13 years ago. I would persistently wake up my family each night screaming, "No! No!" in my sleep. In the morning my body was tense and contorted with my fists clenched tightly and my knees to my chest. When I went off of grains this went away. This happened at the onset of my CFS, btw.
Leaky gut can affect every system of the body with one noticing NO "tummy problems" in many cases at at all.
I was gluten free and still eating grains 13 years ago. I would persistently wake up my family each night screaming, "No! No!" in my sleep. In the morning my body was tense and contorted with my fists clenched tightly and my knees to my chest. When I went off of grains this went away. This happened at the onset of my CFS, btw.
Leaky gut can affect every system of the body with one noticing NO "tummy problems" in many cases at at all.
Firestormm
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Adlyfrost Thank you
I had never come across Geographic Tongue before so I looked it up very quickly; at web md and the mayo clinic and NHS Choices. Again I am sorry if my use of the phrase 'tummy problems' is belittling. However, there doesn't appear to be any direct connection between the conditions you describe and this theory pertaining to 'Leaky-Gut'.
Also had to check scoliosis because I can never remember what these names refer to; and I saw curvature of the spine and was shocked. Did that correct itself or do you/did you need to wear a brace? And the ringworm - I guess that didn't respond to conventional treatment either?
Look. As I said. If you have found that removing gluten from your diet is helping you with health generally, then great. Really. But there is no evidence - other than your own which is important - to suggest that all of what you have described is caused by this 'Leaky Gut' or that the treatment you have found useful has resolved this 'Leaky-Gut' either.
Some, all, or none of the symptoms and terrible discomfort you have endured and that I endure daily; could be down just as easily to ME as to anything else. We don't know. We scramble around in our desperation trying to find something, someone, to listen and to DO something: and if we are lucky we can get to a point where we can manage.
But. Saying that 'Fixing Leaky Gut Helps ME/CFS and Sometimes Achieves Full Remission' is frankly unsubstantiated based on the original post in this thread or on anything I have been able to find anywhere. Leaky Gut according to the links in my post above is being dished out as an explanation for a lot of unexplained conditions without any proof or attempts at proof.
As are many other theories.
I had never come across Geographic Tongue before so I looked it up very quickly; at web md and the mayo clinic and NHS Choices. Again I am sorry if my use of the phrase 'tummy problems' is belittling. However, there doesn't appear to be any direct connection between the conditions you describe and this theory pertaining to 'Leaky-Gut'.
Also had to check scoliosis because I can never remember what these names refer to; and I saw curvature of the spine and was shocked. Did that correct itself or do you/did you need to wear a brace? And the ringworm - I guess that didn't respond to conventional treatment either?
Look. As I said. If you have found that removing gluten from your diet is helping you with health generally, then great. Really. But there is no evidence - other than your own which is important - to suggest that all of what you have described is caused by this 'Leaky Gut' or that the treatment you have found useful has resolved this 'Leaky-Gut' either.
Some, all, or none of the symptoms and terrible discomfort you have endured and that I endure daily; could be down just as easily to ME as to anything else. We don't know. We scramble around in our desperation trying to find something, someone, to listen and to DO something: and if we are lucky we can get to a point where we can manage.
But. Saying that 'Fixing Leaky Gut Helps ME/CFS and Sometimes Achieves Full Remission' is frankly unsubstantiated based on the original post in this thread or on anything I have been able to find anywhere. Leaky Gut according to the links in my post above is being dished out as an explanation for a lot of unexplained conditions without any proof or attempts at proof.
As are many other theories.
Firestorm, if you are looking for a proven cure then look in Heaven. If I knew what cured CFS I'd be rich right now- and healthy, and not on this forum, but winning the Nobel prize. My point is that fixing 'leaky gut' could be the key to remission in SOME people but it takes ALOT of time and effort. If you take away anything from my post it is that: it takes ALOT of time and effort. And, that one can't go by how one's stomach feels.
Leaky gut is caused by broken tight junctions in cells in the lining of the small intestine where nutrients are absorbed and the villi and Peyer's patch (immune system of the SI) are. The most common triggers are the foods I listed in a previous post. To heal this, it takes a lot of PROTEIN in a very easy to digest form. Bone broths are best. Until it is healed, solid food irritates it and more sensitivities can develop (esp. in severe cases). That is why, if this is a cure, it would not be so apparent. No one wants to go on a mostly liquid diet for who knows how long.
As for geographic tongue, like scoliosis, it is considered an idiopathic, mostly benign condition by the medical establishment- the same people who do not recognize CFS/ME. But I have observed a direct correlation with the state of my tongue with my health and diet. Scoliosis is also related to nutritional deficiencies- also not by the mainstream medical establishment but by alternative Dr's who have been successful at treating it. Yes I had to wear a brace then again in my late thirties when I started to have breathing problems. There are also exercises that help correct it. The ringworm did respond to treatment.
I think of the CFS geographical clusters that have appeared in people with no previous health problems. Here CFS looks like an infectious disease, probably not leaky gut. But we can't assume CFS is caused by the same thing in everyone. We don't all have the same history. We were not all robustly healthy people who suddenly came down sick.
In my case, it was more slow and gradual. I have always been weak. My mom told me when I was three I used to shake violently after eating a piece of toast (gluten) and kicks herself that she didn't pick up on the sensitivity then. I am posting this so that may be someone like me can benefit. But in the end one has to trust themselves and go with what they think will work for them. Don't waste your time and energy on healing leaky gut if you don't think it will help. But don't dismiss it either, if it works for someone else!
From the research that I have done, I think CFS is UNIVERSALLY caused 99% of the time by a virus and 90% of the time by an intestinal virus. And there is PLENTY of proof / evidence for that! Fixing leaky gut is how I have decided to fight that virus since Equilibrant and other herbal immune modulators either give me horrible panic attacks or have not been effective. And I don't like what I am hearing about the side effects in inefficacy of anti-viral drugs. But the proof is in the pudding. Will keep you posted.
Leaky gut is caused by broken tight junctions in cells in the lining of the small intestine where nutrients are absorbed and the villi and Peyer's patch (immune system of the SI) are. The most common triggers are the foods I listed in a previous post. To heal this, it takes a lot of PROTEIN in a very easy to digest form. Bone broths are best. Until it is healed, solid food irritates it and more sensitivities can develop (esp. in severe cases). That is why, if this is a cure, it would not be so apparent. No one wants to go on a mostly liquid diet for who knows how long.
As for geographic tongue, like scoliosis, it is considered an idiopathic, mostly benign condition by the medical establishment- the same people who do not recognize CFS/ME. But I have observed a direct correlation with the state of my tongue with my health and diet. Scoliosis is also related to nutritional deficiencies- also not by the mainstream medical establishment but by alternative Dr's who have been successful at treating it. Yes I had to wear a brace then again in my late thirties when I started to have breathing problems. There are also exercises that help correct it. The ringworm did respond to treatment.
I think of the CFS geographical clusters that have appeared in people with no previous health problems. Here CFS looks like an infectious disease, probably not leaky gut. But we can't assume CFS is caused by the same thing in everyone. We don't all have the same history. We were not all robustly healthy people who suddenly came down sick.
In my case, it was more slow and gradual. I have always been weak. My mom told me when I was three I used to shake violently after eating a piece of toast (gluten) and kicks herself that she didn't pick up on the sensitivity then. I am posting this so that may be someone like me can benefit. But in the end one has to trust themselves and go with what they think will work for them. Don't waste your time and energy on healing leaky gut if you don't think it will help. But don't dismiss it either, if it works for someone else!
From the research that I have done, I think CFS is UNIVERSALLY caused 99% of the time by a virus and 90% of the time by an intestinal virus. And there is PLENTY of proof / evidence for that! Fixing leaky gut is how I have decided to fight that virus since Equilibrant and other herbal immune modulators either give me horrible panic attacks or have not been effective. And I don't like what I am hearing about the side effects in inefficacy of anti-viral drugs. But the proof is in the pudding. Will keep you posted.