What is recommended for LEAKY GUT?

[keenly]

I believe this is a MAJOR component is CFS and alot of health issues in humans.

What does de meirleir recommend?

any thoughts?

 

[Karin]

Don't know about De Merleir, but here is what I remember about the leaky gut:

Alessio Fasano invented a drug, Larazotide, that signals the gut tight-junctions to close, closing the leaky gut. It is still at the trial stage for Celiac Disease. He is the one who discovered zonulin, a substance produced by the body to open and close the tight junctions of the gut/blood barrier, brain/blood barrier, and lung/blood barrier. Larazotide counteract zonulin. However, little is known about which mechanisms regulate zonulin in the body.

www.celiaccenter.org/celiac/documents/UnlockingKey.pdf
http://www.autism.com/pro_videomp4.asp?mp4=baltimore_2010_33_fasano&h=480&w=640&VID=95

Other than that, mast cells might be playing role. When overactivated, they could create leaky gut conditions and/or leaky lungs and/or brain/blood barrier. Some drugs or compounds block the mast cells, like Quercetin, Gastrocrom or Ketotifen (not available in the US). Another thing that can help, I think, is remove the foods one is sensitive to, in order not to stimulate the mast cells and constantly upset the gut/blood barrier.

http://ec2-174-129-232-51.compute-1...-contribute-autism-theoharis-theoharides-md-p

I also heard sulphate deficiency can cause leaky gut. Epsom salt baths or rubs, foods rich in sulfur, MSM, could help.

And I think XMRV or HIV themselves cause a leaky gut and/or leaky BBB by some mechanism during viral budding, though I don't remember where I heard that.

Karin

 

[Tammie]

I also heard sulphate deficiency can cause leaky gut. Epsom salt baths or rubs, foods rich in sulfur, MSM, could help.
Karin

I have actually read sort of the opposite - that many of us cannot properly process these, and as a result they biuld up in our bodies and are toxic and can CAUSE leaky gut......I also know that personally I absolutely cannot tolerate MSM - had horrible reactions to it

aloe is supposed to be very healing for the gut as are licorice and glutamine

 

[Karin]

I have actually read sort of the opposite - that many of us cannot properly process these, and as a result they biuld up in our bodies and are toxic and can CAUSE leaky gut......I also know that personally I absolutely cannot tolerate MSM - had horrible reactions to it

aloe is supposed to be very healing for the gut as are licorice and glutamine

If sulfur foods is toxic for you maybe that's because the conversion sulfites to sulfates is not working properly, leading to an accumulation of toxic sulfites and not enough sulphate. Sulfur from food is first transformed into sulfites and then sulfate. I heard that to help this conversion sulfite to sulfate, molybdenum supplements help. Maybe that would be something to try? Either it helps or it does not, but it would not hurt I would think. Lentils are naturally very rich in molybdenum.

 

[Tuha]

I am the patient of him. What he told me - that I have gut disbiosis and also leaky gut. i dont know exactly what is for leaky gut. but he priscribed me some ATB, probiotics, chlorella, mucoperm,..

 

[zoe.a.m.]

Karin already said the most important things. Larazotide acetate is definetly the best and only drug to treat leaky gut. However it is not available yet.

Okay, so where is this med and what kind of timetable are we looking at? Does anyone know? I can't help but feel this could be one of the most important ways to treat CFS and I'm wondering if we're looking at another Ampligen-like situation with the waiting, waiting, waiting...

I just got confirmation that my gut is a mess (no surprise other than it took 10 years for someone to order the tests!) and, boy oh boy, it's hard to know where to start! What is "mucoperm..."?

Still can't say enough good things about Dr. Ohhira's 12-Plus for a probiotic.

 

[zoe.a.m.]

Just started googling and it looks like an article written in Oct. of 08 said the drug was fast tracked. Does anyone know what that really amounts to in terms of years/months? It's kind of strange that it seems to have gotten that approval based on how it would help celiac when it potentially has effects on diseases with far fewer, if any, treatments. I don't mean to play down the seriousness of celiac though, just that it is currently manageable and at least the mechanism is understood.

I sent an email to the company asking if they had any projected dates for study outcomes. It probably won't go far, but I see they are a private company and could certainly make a lot of money with this, so who knows?!

 

[Karin]

I think Alessio Fasano is a pioneer in the idea that leaky gut is associated with autoimmune disease in general, not just Celiac Disease. He is one of the firsts, and it is not 'mainstream' yet. Simply just the concept of Leaky Gut, for most of last century it was thought to be a myth, and was not taken seriously. It was widely talked about in alternative medecine, but laughed at by mainstream. Alessio Fasano is the first one who demonstrated to the scientific world that it was true, the gut could become leaky. He said in a conference that (I quote), 'I was crucified head-down' when he demonstrated this, but finally it was accepted. Still, it will take time for it to become more widely accepted.

I think Celiac is THE condition where it is accepted now, the one for which fundings are there. Other conditions are still 'up in the air'. Hopefully once the drug will be available for Celiac, it will become easier to show that it is helping other conditions as well, simply because the drug will be available off-label, and studies will be done.

 

[Karin]

One thing to keep in mind too is that Larazotide taken orally would work only on the gut, I think. It would not work on the BBB. Leaky gut is a major issue in autism, but unfortunately, not only the gut is leaky in this condition but the brain/blood barrier as well. I wish there would be a drug available to close this one as well. This is devastating in autism, since the brain is not shielded from immune reactions hapening elsewhere in the body and you get brain inflamation, cross-reactions with brain proteins, etc... But closing the leaky gut would help a lot nevertheless by decreasing the amount of 'crap' pouring from the gut into the blood and overloading the immune system and the detox systems, kidneys and liver, and of course polluting the brain. At least, this is the way I see it, after spending almost four years working very hard on my son's gut and seeing with my own eyes the incredible effect it had on his brain function (he has autism).

I am sure some amount of leaky BBB is also happening in CFS.

 

[zoe.a.m.]

Hopefully once the drug will be available for Celiac, it will become easier to show that it is helping other conditions as well, simply because the drug will be available off-label, and studies will be done.

Yes, isn't it funny how mainstream medicine will suddenly admit to the existence or seriousness of something once there's a pill for it--as though they had been aware of it all along!?!

 

[dannybex]

Causes of Leaky Gut / Zinc-Carnosine for LG...

One thing to keep in mind too is that Larazotide taken orally would work only on the gut, I think. It would not work on the BBB. Leaky gut is a major issue in autism, but unfortunately, not only the gut is leaky in this condition but the brain/blood barrier as well. I wish there would be a drug available to close this one as well. This is devastating in autism, since the brain is not shielded from immune reactions hapening elsewhere in the body and you get brain inflamation, cross-reactions with brain proteins, etc... But closing the leaky gut would help a lot nevertheless by decreasing the amount of 'crap' pouring from the gut into the blood and overloading the immune system and the detox systems, kidneys and liver, and of course polluting the brain. At least, this is the way I see it, after spending almost four years working very hard on my son's gut and seeing with my own eyes the incredible effect it had on his brain function (he has autism).

I am sure some amount of leaky BBB is also happening in CFS.

I'm certainly no scientist, but I believe that once the gut is healed, that that prevents problems further downstream (the brain, etc..)...or is that upstream? :Retro smile: Also important to remember that 70% of the immune system, and 70-80% of neurotransmitters like serotonin are found in the gut.

http://en.wikipedia.org/wiki/Serotonin

It's very important to try to find out what is causing the leaky gut -- which could be so many different things, but a good CDSA test would be a great place to start. It can tell you what kind of bugs you have, both bad and good. LG could also be a result of food intolerances such as those from salicylates or phenols (which are in tons of foods, and esp artificial colors/flavors) but can be corrected with diet and amino acids (from what I've read). There are a lot of kids with autism -- and adults too - who have made major improvements by eliminating high salicylate foods (or other things like gluten or casein) from their diet. And some have had success using a digestive enzyme called "No-Fenol" which helps digest high-phenol/salicylate foods.

Also, there's a supplement called Zinc-Carnosine that has been proven in clinical studies to help repair the intestines:

http://www.ncbi.nlm.nih.gov/pubmed/16777920

"Oral ZnC decreased gastric (75% reduction at 5 mg/ml) and small-intestinal injury (50% reduction in villus shortening at 40 mg/ml; both p<0.01).

CONCLUSION: ZnC, at concentrations likely to be found in the gut lumen, stabilises gut mucosa."

Several different companies make a zinc-carnosine supplement. Best prices are probably at iherb or vitacost.

hope this is helpful?

d.

 

[Karin]

Thanks!

Yes, we've done several CDSA, including those that do PCR study of the stool to also see dead stuff (e.g. anaerobic bacteria). We've also done many microbial urine organic tests to look for the byproduct from gut flora and see if there are any abnomalities. Also checked blood for immune reactions to normal flora, as well as IgG food panels to look for immune reactions to common foods. Yes, there was a huge bacterial overgrowth, about 20 times more than the maximum normal, per organic acids. Criptosporidium and rhodotorula have shown up in stool, as well as very large amounts of klebsiella. IgG reactions to over 50 foods (for a total of 200 tested). Intense immune reaction to saccharomyces, family of yeast used in breads, beer, kefir, etc... Pancreatic function seems impaired. Lots of maldigestion, very acidic stool pH. Low motility, impactions confirmed with x-rays, stools rarely formed, usually runny and light colored. Celiac panel negative.

He is taking about 200 billions CFUs total a day of four probiotic formulations he does very well with (Threelac, Culturelle, Reuteri and Super proBio). He also takes enzymes with meals, over-the-counter ones and prescription ones (Creon, pancreatic). We did try secretin nasal spray for a while with meals, to stimulate the pancreas, but did not see much. He is on a diet free of gluten and dairy and all the IgG reactive foods, all natural organic cooked from scratch and mostly pureed to make it more digestible. And of course, we have treated repetitively all the infections with whatever necessary, antibiotics, antifungals, antiparasite, and herbs.

After almost four years of that it has helped immensely, but the gut is not 'healed'. It is just kept in better shape through heavy support. But something is attacking it, maybe XMRV directly, or just autoimmune. I still totally agree that working on the gut is worth it. It does need to be addressed from many sides simulatenously, and there is a lot of trial and error. Elimination diets have been the most effective weapon for us.

I do have Gastrocrom sitting on my counter and need to try this. It blocs the mast cells during meals to prevent food reactions. I am also going to try another mast cell blocker. He is already on singulair (for its non-steroid anti-inflamation properties), which is already supposed to help some with the GI tract as well.

 

[Karin]

Do you know anything about how to reduce a leaky BBB? Btw I have exactly the same digestive problems as your son.

No, I don't know, I keep looking. I have a feeling (though that's all it is, no evidence) that sulfur antioxidants might help. We did OSR for a year with great results, but I am not sure anymore about it. I might try ALA instead. Again, might just be wishful thinking.

 

[Karin]

I really want to know what is causing all these problems. I want to know the cause for leaky gut and the cause for a disrupted BBB. I want to know where it all starts or if there really is a common starting point that makes the immune system go haywire. I read that scientists try to make the BBB permeable for a short period of time through medication to get other needed medication into the brain and I also read that a leaky BBB could be a cause of Alzheimer but I'd love to see XMRV as causative agent. All we can do right now is just prevent some damage but we don't get healed.

Exactly my thought. Something is causing leaky gut, leaky BBB and leaky lungs, and that might be the source of all the problems. Look at all this increase in food allergies, asthma, depression, bipolar, celiac, autoimmune, in the general population. This could all originate from the same thing, affecting people differently and leading to a variety of disorders. In autism, it is the same thing but much more dramatic, from a much younger age, even before birth. Maybe CFS too? I know that it is likely way oversimplified.

 

[zoe.a.m.]

Exactly my thought. Something is causing leaky gut, leaky BBB and leaky lungs, and that might be the source of all the problems. Look at all this increase in food allergies, asthma, depression, bipolar, celiac, autoimmune, in the general population.

I hate to be a damper but I think it comes back to the environment. It's a damper because I don't think we'll ever see research that points to what chemical or compound causes x,y,z... There's no question in my mind though that it comes back to genetic material being mutated, cells becoming dysfunctional (leading to anything from cell wall membrane permeability to toll-receptor errors causing cancer). The outbreaks of ME/CFS, and I'm sure there are outbreaks, relatively speaking, of many of the other conditions you've mentioned, even if they are as large as a nation.

Honestly, no puns intended, but my gut tells me that it's the very food (and its soil, water, etc.) that we eat and that we have been fed in public schools and that our parents and grandparents ate, that is causing problems with leaky gut. I don't have high hopes that this will be discovered since it's been the chemical companies since the beginning, funded often times by the govt, who have been throwing all of this stuff into the environment and they are honestly the only ones with the info and the funds to really study it which would never be in their interest.

 

[Tal]

I believe this is a MAJOR component is CFS and alot of health issues in humans.

What does de meirleir recommend?

any thoughts?

I don't know the person you're refering to, but I did run into this link: http://www.allergyescape.com/leaky-gut-syndrome.html

 

[5150]

No pun intended either but please tell me why the majority of my friends and majority of people I see walking and talking on the streets seems perfectly healthy. The same at university. I know some medical students who have to work 14 hours a day in hospital and only eat sweets and pizza and drink coke. They are perfectly healthy and their bodies seem to be perfectly adapted to this kind of food. Sure, maybe later they get the consequences but right now they are doing very good despite the fact that they only eat "garbage". None of them has a "leaky gut".

These people who are perfectly healthy are those who haven't yet been exposed to the {whatever causative agent}XMRV? that takes down the immune system, that then exposes us(those former healthy folks) to the cascade of symptoms that encompass so-called Chronic Fatigue Syndrome: including digestive disorder which will roll into other problems downstream. Whatever the cause is(XMRV?), it appears to be very contagious, imo more than WPI says. I say"extremely contagious", especially via saliva.

So if I were to kiss on the lips any of those healthy people walking down the street, or cough on them in enclosed setting, or even breathe on them closely, they would likely enter into our Hell of cfs...such is the stuff of cohorts.

It matters not how healthy one is or is not. If you are exposed to the {causative agent}XMRV?, you are going to become infected and proceed down the long road of all the symptoms that come with this horrid disease. Yes, you can address the symptoms piece by piece, and it will consume all of your time each day and become your life; not a high quality of living. Personally, I was a bit of a health addict when I was stricken. Worked as a high tree climber and did professional landscape design&installation, as well as other tough exercising on my own:running,etc. Paid close attention to my diet, too. But that was 30 years ago when I was the healthy one walking down the street. Progressively these past 30 years have become harder and now more hell-ish. If an answer doesn't come soon, my heart grows weaker(I can feel it happening), my prostate is a problem, i must go to bed multi-times per day to re-energize for another short burst, inflammation whole body -- constant intruder, I just feel unwell.

So because someone is healthy and "walking down the street" doesn't guarantee it will continue. It's kinda like Lou Gehrig said when he was speaking at his day devoted to honoring his years as a NY Yankee,to the fans at Yankee Stadium(he was dying from ALS) :"I just got a bad break." We did,too. It's how we endure that matters. For leaky gut, eating appropriate foods and drinks, plus getting good supplements is about all to do. Plus light exercise if possible (walking,light weights).

best to each of you.
5150

 

[cigana]

Hi,

Just want to add my own thoughts here. I too believe leaky gut (like all diseases) happens because we are out of touch with our natural environment. Our biggest contact with our environment is via our intestines and the food we eat today is not what we were designed to eat, so it is no wonder problems like leaky gut occur. Another factor taking us out of our natural environment is chronic stress. This can lower SIgA and hence allow dysbiosis which is the MAJOR cause of leaky gut. So best to fix dysbiosis and boost SIgA.

Why can some people eat crap and get away with it? Genes.

Just want to add too that these things can also heal leaky-gut:

-Water-only fasting. A cut on your arm isn't going to heal if you keep brushing it. Same with the gut wall. This has been clinically proven to heal autoimmune disorders via the gut.

-An elemental diet. I have no proof it heals LG directly but it does heal SIBO which can cause LG. It also makes sense to only allow elemental nutrients while trying to heal. You don't want to be eating protein during the healing as these are what mainly contribute to the autoimmune response (animal protein in particular because it is most like our own).

-Colostrum. A recent study by Imperial College showed this.

Best wishes,

Cig

Why do some people eat crap and don't get leaky gut?

 

[allwxrider]

I've tried small amounts of probiotics. Dr. Brenda Watson, CNC of RenewLife.com says to take lots of probiotics, like 50 billion for gut disorders. I decided to try her Leaky Gut package deal: Book + IntestNew + Fiber (FOS food for probiotics) + Probiotic (enteric capsule 50 billion).
I have had CFS for ~20 years, it got real bad the last 5. My spouse is fine. XMRV, HERV et al would most certainly be Xferred via STD. The answer must be in the immune system. If indeed 80% of the immune system is in the gut. We should focus there.
Maybe we live in too sterile of an environment. Buttermilk, sour cream, saurkraut might be part of the answer. Getting rid of chlorine bleach, antibacterial soaps. Filtering our precious water of flourine and chlorine is another.

If its safe and cheap, I'll try it.