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

[Ocean]

There was also a story in the NYT recently, a first person account about a young boy who improved with leaky gut treatment. I linked to it somewhere on this site. It did list his protocol in there also.

 

[Junto]

There are likely many ways to heal your gut. Here is a study showing colostrum to be very effective.
http://www.naturalnews.com/031500_colostrum_leaky_gut_syndrome.html

I think whats more important, however, is elimination of toxins(natural) that attack the gut. We have have clear evidence of which foods are the offending few...mainly grains, legumes, beans, fructose and excess omega-6.
http://perfecthealthdiet.com/2010/0...i-healing-the-gut-by-eliminating-food-toxins/

 

[Hip]

Interesting links, thanks Junto.

I have been on a low lectin diet for some time now, avoiding the nightshade family of foods (includes tomato, potato, bell peppers, aubergine/eggplant), the bean family (includes all beans and peanuts), and grains (includes wheat, corn, oats, rye and rice).

Grains I find are the hardest to avoid, because it then becomes a little difficult to get carbohydrates in your diet, especially since you can't have potatoes either (though sweet potatos or yams are fine).

Interestingly, if you eat some sugar (sucrose) at the same time, this affords some protection from the damaging effect of dietary lectins (1). So if you are going to have some say some grains in your diet, along with their toxic lectins, then a "spoon full of sugar helps the toxins go down".


As far as bovine colostrum is concerned, this supplement seems to prevent the increase in leaky gut (gut permeability) caused by NSAIDs (1), but as for colostrum's ability to prevent the increase in gut leakiness due to heavy exercise (as stated in the link you provide), there seems to be conflicting evidence: the study your link refers to (here 1) says colostrum prevents the exercise-induced increase in gut leakiness, but another similar study said colostrum increases exercise-induced gut leakiness (1). So it seems it is not so clear.

In any case, when I took high doses of colostrum (2 heaped teaspoons daily), it I found it generally helpful for my ME/CFS.

 

[Victronix]

I look forward to going through this thread in detail, but just wanted to share --

This is not ME/CFS, but autism, a very recent TED talk by a CalTech researcher using mice models --
Mind-Altering Microbes: How the Microbiome Affects Brain and Behavior

It was posted on the blog of Paul Patterson, author of Infectious Behavior, Brain Immune Connections in Autism, Schizphrenia and Depression.

 

[Victronix]

There was also a story in the NYT recently, a first person account about a young boy who improved with leaky gut treatment. I linked to it somewhere on this site. It did list his protocol in there also.

That's here: http://www.nytimes.com/2013/02/03/magazine/the-boy-with-a-thorn-in-his-joints.html

Once they had the diagnosis, Walker realized he’d (her infant son Shane, with severe arthritis) probably been in pain every night of his life. Walker is a social worker and massage therapist who works with cancer patients at NorthShore University HealthSystem outside Chicago. When Shane’s rheumatologist presented methotrexate or steroid injections as the only choices, she was horrified. Because she worked in the integrative medicine department — a combination of alternative and conventional treatments — she knew there were other things to try. She dug into medical-literature databases. She learned about a centuries-old, anti-inflammatory Chinese concoction called four-marvels powder from a visiting naturopath. And she sought guidance from her colleague, Dr. Leslie Mendoza Temple, the head of the hospital’s integrative medicine program, who, while wary of the risks, had been comfortable giving Walker’s program a three-month trial. “I tried everything that I knew was safe to see what would work,” Walker told me.

I grabbed my pen and paper and started taking notes. No gluten. No dairy. No refined sugar. No nightshades, a group of plants that includes potatoes and tomatoes, which are thought by some to be potentially inflammatory, as is sugar. Every day, Shane took a probiotic. Plus two tablespoons of sour Montmorency cherry juice and at least 2,000 milligrams of omega-3’s from fish oil, known for their anti-inflammatory properties. Instead of naproxen, Shane took a combination of ibuprofen and Tylenol to lower his overall intake of nonsteroidal anti-inflammatories, which can be hard on the gut. And a quarter teaspoon, daily, of the four-marvels powder.

Walker said she believed that her son’s arthritis was caused by something I had never heard of before — leaky-gut syndrome, a concept that has been accepted in alternative circles for years despite a name that asks you not to take it seriously. The idea is that inflammation in the gut causes the tight junctions between the cells that make up the intestinal lining to loosen. Then, like a lax bouncer, the barrier starts letting through undesirables, various proteins or bacteria that would normally be rebuffed; they then leak into surrounding tissues. The uninvited guests, the hypothesis goes, then trigger an offensive by the body, which uses inflammation to try to get rid of them. That sustained inflammatory response characterizes autoimmune disease.

Six weeks into the alternative therapy, Shane started feeling better. After three months, his arthritis pain was gone.
. . .
Some researchers are optimistic that probiotics, which contain various strains of bacteria, could one day help restore a balanced population. A couple of different ones have been shown to reduce joint inflammation in mice, says Fergus Shanahan, the chairman of the department of medicine at University College, Cork, in Ireland, and a leading probiotics researcher.

Probiotics may also help to tighten up a hyperpermeable gut barrier, says Robert J. Shulman, a professor of pediatrics with a specialty in pediatric gastroenterology at Baylor College of Medicine in Houston. He has an N.I.H. grant to study the effects of a probiotic called VSL No. 3 (which is the kind we gave Shepherd) on gut bacteria and gut-barrier function in adults with irritable bowel syndrome, a disorder in which changes in the gut bacterial population are associated with inflammation in the colon.

Another potential method of recolonizing the gut, which is gaining ground, is the fecal transplant. It is exactly what it sounds like. People infected with C. diff. have responded well when they’ve been given stool from healthy individuals (usually via colonoscopy).

 

[MishMash]

If all else fails, go to the salad bar at your local grocery and purchase a carry-out salad of field greens, broccoli, cabbage, and other veggie condiments. I would say buy organic, but many of us can barely make it to the supermarket, much less to a specialty health food store. Include lean chicken or turkey, if they have it. Make sure your gut is occupied, at least partially, every day by dark green leafy veggies. Leave out gluten, don't drink milk, eat ice cream. It will hellp you feel better, if not heal leaky gut.

 

[Daffodil]

so i had another methane and hydrogen breath test yesterday. it was about a month after a 10-day course of xifaxan (generic from india). the results showed a tiny bit of improvement but i am still positive for SIBO. i talk to my doc today..he is a gut expert.

although i was sure it had nothing to do with the xifaxan at the time, i had a stellar week 10 days after my course of xifaxan. some days i felt almost normal, aside from the brain fog, which was less but definitely not gone.

now i am thinking there really might be A LOT to this gut treatment!

there are CFS docs experimenting with intermittent, long term antibiotics now....wonder if that would help me.

xox

 

[Junto]

Interesting links, thanks Junto.

I have been on a low lectin diet for some time now, avoiding the nightshade family of foods (includes tomato, potato, bell peppers, aubergine/eggplant), the bean family (includes all beans and peanuts), and grains (includes wheat, corn, oats, rye and rice).

Grains I find are the hardest to avoid, because it then becomes a little difficult to get carbohydrates in your diet, especially since you can't have potatoes either (though sweet potatos or yams are fine).

Interestingly, if you eat some sugar (sucrose) at the same time, this affords some protection from the damaging effect of dietary lectins (1). So if you are going to have some say some grains in your diet, along with their toxic lectins, then a "spoon full of sugar helps the toxins go down".


As far as bovine colostrum is concerned, this supplement seems to prevent the increase in leaky gut (gut permeability) caused by NSAIDs (1), but as for colostrum's ability to prevent the increase in gut leakiness due to heavy exercise (as stated in the link you provide), there seems to be conflicting evidence: the study your link refers to (here 1) says colostrum prevents the exercise-induced increase in gut leakiness, but another similar study said colostrum increases exercise-induced gut leakiness (1). So it seems it is not so clear.

In any case, when I took high doses of colostrum (2 heaped teaspoons daily), it I found it generally helpful for my ME/CFS.

All good points. I would say the majority of the battle for most of us is to eliminate the offending foods. Once we stop worsening existing wounds in our digestive tract, the body should be able to heal itself. Doesn't it work that way for the majority of our ailments(cut/bruise, fever etc.)? I am oversimplifying it slightly, but the point is still valid, I believe.
There are other factors involved in digestive help. Most of us who have leaky gut have SIBO. If you don't make dietary changes SIBO will persist. You mentioned needing a non-nightshade carb source. If you believe you have Leaky Gut, it is highly likely you have SIBO. If you have SIBO you want to starve the bacteria in your small intestine of energy so that they will diet out. There is a carb source however, that will not feed these bastards...dextrose.

If one were to construct the perfect diet to combat Leaky Gut/SIBO, I think it would look like the first phase of GAPS diet without any veggies. My own plan of attack for this exact scenario is to only eat meat(sticking to ruminents for the superior omega3/6 ratio) bone broth (the more gelatenous the better), coconut oil (great for digestion and fighting virus/bacteria), grass fed beef tallow and egg yolk(full of nutrition and little to no allergens). I'll also thrown in some dextrose in my morning coffee if I feel a bit blah. It's best to have some carbs so that your body isn't forced to manufacture 100% of it via ketones.

Going back to your quandary about finding a suitable carb source. It's true that if you want to keep it low toxin, non-night shade that your stuck with sweet potatoes(and tarro, tapioca, yucca). However hard it may be to eat a sweet potato every day, it may be worth doing this for the short-term for diagnostic purposes. You may only have to do this for a few weeks or months in order to heal. At that point, you can add them back in. Here is another option, to minimize the oxilates in potatoes, peel them(this is where most of the toxins are), dice them up and cook them slowly in water. The vast majority of the toxins are water soluble. This method should vastly minimize the toxins to the point where they are easily cleared by our system.

Good luck!
Junto

 

[Junto]

so i had another methane and hydrogen breath test yesterday. it was about a month after a 10-day course of xifaxan (generic from india). the results showed a tiny bit of improvement but i am still positive for SIBO. i talk to my doc today..he is a gut expert.

although i was sure it had nothing to do with the xifaxan at the time, i had a stellar week 10 days after my course of xifaxan. some days i felt almost normal, aside from the brain fog, which was less but definitely not gone.

now i am thinking there really might be A LOT to this gut treatment!

there are CFS docs experimenting with intermittent, long term antibiotics now....wonder if that would help me.

xox

That's great news! Must be exciting to experience significant results.

If you've seen any of my last posts, you'll find that I happen to agree with you that there is definetely a connection between gut health and CFS/Fibro. Many studies point to this.

Your brain fog could have been due to pathogenic bacteria die-off which can cause a cytokine storm. When they die, they release toxins that your body has to clear. Another course of antibiotics could help, or it could cause further dysbiosis. I'd make sure your current diet is optimized first, this will help to support beneficial bacteria and starve the opportunistic bacteria. I've done a lot of research into this and I happen to believe that a refined version of the paleo diet, Perfect Health Diet (http://perfecthealthdiet.com/the-diet/) or the GAPS diet is great for this. Just keep in mind that with SIBO, your going to want to go very low carb to starve the pathogenic bacteria in your small intestine. Diet alone may do the trick.

Best of luck to you and please keep us posted on your progress!
Junto

 

[Daffodil]

LOW CARB? oh crap. i live for pasta lol

thanks Junto. those diets you mentioned really look worthy of further investigation!

i wonder if the plasmacytoid dendritic cell malfunction creates a kind of positive inflammation feedback loop so maybe lessening the inflammation in whatever way we can, can ultimately help, despite the HERV's.

i also brought the idea of Anatabloc up to my doctor....he actually seemed intrigued and will look into this further. there is some paper where it shows that it ameliorates disease in autoimmune encephalomyelits in mice. has anyone else taken this product? someone on the board told me about it.

anyway, we are now looking at possibily more xifaxan for me, but wont be sure until next week. there seem to be several people i am hearing about now, who are doing well on xifaxan for the gut.

xoxo

 

[Daffodil]

i am reading a forum where people's rosacea is disappearing with xifaxan.

just how many diseases will be in remission with xifaxan? but how long can we take the drug before resistant bugs start emerging!

something is causing bowels to become inflamed in so many diseases.

chicken/egg question...

 

[Daffodil]

i'm becoming more and more convinced that the key to this whole mess is in the gut. i read that bacterial toxins can compromise the immune system and this results in viral replication. this is exactly what could be happening with me. my titres are never sky high...just enough to imply something is messing with my immune system. i also notice that when i am really sick, i am always clutching at my stomach...i never really noticed this before; i always focus on the awful feeling in my head and neck...but now i see it is all connected to my gut.

maybe HERV's are at the core of this disease..but i wonder how much one could improve if one knew what to do to eliminate gut inflammation. HERV's thrive with inflammation.

i have tried elimination diets before but have just felt sicker. i wish i knew what to do. its so unfortunate that they are only scratching the surface with this.

this whole puzzle is really coming together in unexpected ways and entirely too slowly :-/

i will investigate the low carb diet and GAPS diet. only problem is, when i am this sick, it is impossible to even grocery shop let alone make creative meals. and even the smallest changes make me so nauseous.

the other day, we ordered greasy spicy indian food. i was too sick to cook so we ended up eating that on and off for days. now, i am in a humungous agonizing crash.

if i get out of this super-flare, i am going to have to do something about this diet.

 

[MeSci]

LOW CARB? oh crap. i live for pasta lol

You might be OK if you replaced wheat pasta with corn/rice pasta, and not too much of it. I have a bit of pasta every day but have replaced about half the (corn/rice-based) pasta with salad, which I sprinkle lightly with lemon juice, and it's nice!

My main carb addiction was crusty wholemeal bread, but I love my health more than I love that. My thinking was: eating doesn't take very long, so that's pleasure that lasts maybe a couple of hours a day, but the ill effects from eating the wrong food are with you 24/7. A no-brainer when you look at it like that.

There are plenty of low-carb foods that I love, and I allow myself unlimited nibbling of roasted salted cashew nuts...mmmm.

And the weight I lost after going gluten-free/low-carb has stayed off.

 

[Daffodil]

hi MeSci....so you are saying this diet is actually helping you? what has improveD?
thank you!

 

[MeSci]

Yes, it is definitely helping, but I expect progress to be slow, especially as I have been ill for so long (about 19 years). I started by going gluten-free, and the weight started falling off, then I reduced carbs in general, especially sugar and grains. My IBS improved dramatically, muscle tension decreased, my mood became calmer, sleep improved, my sinuses cleared, my dermatitis cleared, post-exertional malaise became so mild that it was hard to tell whether I was having any. Then I started deteriorating again, and think I pinned it down to inadvertent consumption of carbs for a couple of months, and am still climbing back out of that hole. I think I'm getting there. Now that I have tasted something resembling health again I'm not prepared to settle for illness any more!

One thing that has not improved yet is energy, but that may take longer. I think we tend to get a lot of adrenaline-type energy instead of a more healthy type, and this diet seems to be reducing adrenaline levels. I think that the body needs to repair itself more before the healthy energy returns. As the gut wall is repaired, auto-immunity should slowly decline, which I hope will allow the mitochondria to start functioning normally again, producing ATP aerobically and not producing excessive amounts of lactate any more.

I think that it is the adrenaline that often keeps us ill, making us burn energy through muscle tension, and driving us to push ourselves beyond our bodies' healthy limits, and preventing us from getting enough quality sleep. So I am prepared to accept a little more enforced resting if it helps my body to heal.

 

[Daffodil]

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

 

[MeSci]

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

Please hold on to hope. Maybe your adverse reactions to the diets were indeed due to bacterial die-off. If only the health professionals were on the ball and could give us some rationally-based, carefully-monitored regime, rather than leaving us to fend for ourselves.

Many of us have been in the pit of despair. I myself attempted suicide about a year after becoming ill, partly due to the illness and partly due to life events, but I soon found my will to live again. Maybe if there had been forums like this I wouldn't have tried to kill myself, and I hope that sites like this do save many people from despair.

 

[Daffodil]

wow! i am so sorry to hear that you actually tried. i can absolutely relate. i had a hard life even before this disease!

now that this is being considered autoimmune, i am more upset. i mean....autoimmune diseases have never had effective, safe treatments.

i guess we all have to find some purpose in order to keep going.

xoxoxoxo

 

[MeSci]

wow! i am so sorry to hear that you actually tried. i can absolutely relate. i had a hard life even before this disease!

now that this is being considered autoimmune, i am more upset. i mean....autoimmune diseases have never had effective, safe treatments.

i guess we all have to find some purpose in order to keep going.

xoxoxoxo

I actually believe that the leaky gut diet IS an effective, safe treatment for autoimmune diseases. The paper cited in the first message, which can be found here:

http://integrativehealthconnection....1/Leaky-gut-in-CFS-treatment-of-leaky-gut.pdf

states that the diet worked, and refers to autoimmunity, appearing to imply that the diet reduces autoimmune activity.

If you want further evidence, this paper:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886850/
gives (very scientifically-detailed) info about exactly how leaky gut can lead to autoimmunity, and concludes very positively:

"This new theory implies that once the autoimmune process is activated, it is not auto-perpetuating, but rather can be modulated or even reversed by preventing the continuous interplay between genes and environment. Since TJ dysfunction allows this interaction, new therapeutic strategies aimed at re-establishing the intestinal barrier function offer innovative, unexplored approaches for the treatment of these devastating diseases."

I think we can be even more positive than that, in that the first study indicates that there is already a treatment that appears to work. Although the second paper looks at different autoimmune diseases, I see no reason why it should not apply equally to others.

Hard life - yes, my own has been full of trials and tribulations, and I think that this plays a part in the aetiology of the illness for many of us, probably via effects on the stress hormone system. It can also compromise the blood-brain barrier - another possible source of immune abnormalities.

 

[Misfit Toy]

Hip or anyone...my question is..I have leaky gut. I would love to try this protocol, but I am so sensitive to supplements. I wonder if one could cut the dose down or try these things individually?? I also need to do something with the leaky gut but I am so hesitant as to spend more money and get sick. I also have the methylation gene mishap where you are supposed to take methylfolate and I can't do both protocols at one time as I won't know what is doing what. You basically have to be your own scientist.

Has anyone tried what Hip is recommending in a smaller dose. I am also horribly allergic to grape seed extract. Makes my IC go nuts.