Prolamines and leaky gut syndrome

[Monty79]

Hi all,

for many years I've suffered from the classic CFS symptoms and tried a lot dietary wise as probably most of you have, too. The only improvement I've noticed was when I went gluten-free and included a lot of fermented foods like homemade milk kefir and sauerkraut, kimchi etc. in my diet. I've felt much better but still had a lot of symptoms, simply not that severe as before. I wondered why and if the gluten had something to do with the improvement, this was when I read a popular book about wheat and a belly (hint, lol), this book not only deals with wheat and gluten but with grains in general.

So I decided to go completely grain-free for a few weeks, just to try and see like I tried a myriad of other things before. And lo and behold, I was completely free of symptoms within 2-3 weeks, this was 4 months ago and I declare myself now officially in remission, lol.

But I wonder why is this? The books I've read don't really give satisfactory explanations.Then I've stumbled across youtube videos of Tom O'Bryan who says grains in general contain gluten-like proteins called prolamines that cause leaky gut syndrome.

I've looked for studies about prolamines but there is literally no research done about this topic. Has anybody heard about this or made similar experiences?

 

[Murph]

Congrats on your remission. That is a remarkable story! I'm interested to hear more....

I've never heard of prolamines. A quick google suggests they are a constituent part of gluten and relevant in coeliac disease. Could you have coeliac disease as well as CFS?

Another, far more common problem in the population is fodmap sensitivity. Symptoms are normally digestive and can be improved by reducing grains.

Are you sensitive to fodmaps (i.e fructans, incl fructose, galric, onion, wheat, oats?)

Digestive symptoms?

 

[Hip]

So I decided to go completely grain-free for a few weeks, just to try and see like I tried a myriad of other things before. And lo and behold, I was completely free of symptoms within 2-3 weeks, this was 4 months ago and I declare myself now officially in remission

But I wonder why is this? The books I've read don't really give satisfactory explanations.

I agree that it does not really make a great deal of sense that simply going gluten and grain free could lead to ME/CFS remission. What was your severity level of ME/CFS on the scale of mild, moderate and severe? Where were you on this scale before you cut out gluten and grains?


Have you considered whether you might have celiac disease rather than ME/CFS? Both diseases have similar symptoms, but celiac responds to the removal of gluten from the diet.

Another possibility to consider is CIRS (chronic inflammatory response syndrome), a mold / biotoxin induced illness that is also misdiagnosed as ME/CFS. One of the treatments of CIRS is a no-amylose diet, which is very similar to a no grain diet.

 

[Carl]

I do not eat gluten and have not in years and yet I still have an extremely increased digestive permeability. Therefore that knocks that idea on the head. It's bullshit IMO. That guy is self promoting and sells dvd's on at least one of his many websites.

Increased digestive permeability is caused, in most cases, by a bacterial infection! None of the supplements that are recommended to fix it can work or will work because healing is prevented until the infection is destroyed. Then the digestive system in multiple places, think IBS too, is repaired in a matter of minutes and no "special" nutrients or additional fixes are required and no l-glutamine is needed. Mine was partially fixed by destroying a highly resistant biofilm and the bacteria within. That was just one of many infections that I have and it was the least resistant. The one which causes CFS is far more resistant, I have had some effect against it but so far have not been able to destroy it. Also no current antibiotic therapy will destroy these bacteria which explains why no one has recovered following any conventional antibiotic therapies.

In your case as Hip suggests, celiac disease might of been what you were suffering from. The real causative factor for any genuine CFS is a bacteria IMO.

 

[echobravo]

@Carl, how did you identify the type of bacteria (having biofilm) that caused your gut infection, and what did you use to 1) break down the biofilm and 2) kill the exposed pathogens?

Isn't it also the case that the inflaming bacteria/yeast can be derply buried in mucus, and therefore difficult to reach even with biofilm eating enzymes?

The CSA stool test found overgrowth of resistant Klebsiella pn. and some Strep species. Any chance to expell those strains using a biofilm brrak-down method?

 

[knackers323]

I do not eat gluten and have not in years and yet I still have an extremely increased digestive permeability. Therefore that knocks that idea on the head. It's bullshit IMO. That guy is self promoting and sells dvd's on at least one of his many websites.

Increased digestive permeability is caused, in most cases, by a bacterial infection! None of the supplements that are recommended to fix it can work or will work because healing is prevented until the infection is destroyed. Then the digestive system in multiple places, think IBS too, is repaired in a matter of minutes and no "special" nutrients or additional fixes are required and no l-glutamine is needed. Mine was partially fixed by destroying a highly resistant biofilm and the bacteria within. That was just one of many infections that I have and it was the least resistant. The one which causes CFS is far more resistant, I have had some effect against it but so far have not been able to destroy it. Also no current antibiotic therapy will destroy these bacteria which explains why no one has recovered following any conventional antibiotic therapies.

In your case as Hip suggests, celiac disease might of been what you were suffering from. The real causative factor for any genuine CFS is a bacteria IMO.

Do you know the name of the bacteria you believe is the cause @Carl ?

 

[ljimbo423]

Hi @Mirea Thank you for sharing your story and congratulations on your remission! I think anything that can cause a leaky gut can lead to cfs/me. Weather it's gluten sensitivity, celiac disease, pathogenic bacteria, chronic use of non-steroidal anti-inflamatory drugs (nsaids) etc.

In my case, it's a bacterial overgrowth that's causing a leaky gut and my cfs. I am having great success in treating it and I have been consistently improving for 4 months now and continue too improve! I went out for a walk about a week ago.

I walked for about 30 minutes and about 1 1/2 miles. I had no PEM until day 2 and it was only a 2 on a scale from 0-10, very mild! Three days after that 30 minute walk, I felt well enough to go for another walk for about 1/2 mile, with no PEM. 5 months ago before I started aggressively treating my gut, that 30 minute walk would have put my PEM level at about a 6 instead of 2,-HUGE progress!!

I am also going to bed at midnight and waking up at 7-8 am, with good energy throughout the day. Just a few weeks ago I was going to bed about 11:30 and waking up about 9-9:30 and I had lees energy. That's another big change as well. Continued success in your remission!!

Jim

 

[trishrhymes]

In my case, it's a bacterial overgrowth that's causing a leaky gut and my cfs. I am having great success in treating it and I have been consistently improving for 4 months now and continue too improve!

Pleased to hear you're having so much success. Can you tell us how it was diagnosed and what treatment you are using. If you've done so on a different thread, a link will be fine.

 

[ljimbo423]

Pleased to hear you're having so much success. Can you tell us how it was diagnosed and what treatment you are using. If you've done so on a different thread, a link will be fine.

Thank you. I had a CDSA done that showed severe dysbiosis. The dysbiosis index went from 0, meaning no dysbiosis to 20, which is as high as the test measured. My dysbiosis was an 18 out of 20!! Here is a link to my basic protocol.

The leaky gut was not tested for, I went by my symptoms, especially the horrendous die off I would get from very tiny amounts of any antibiotic herb. That die off is profoundly less, now that I have significantly lower the bacterial overgrowth with 2 courses of Rifaximin, diet and antibiotic herbs.

 

[msf]

I do not eat gluten and have not in years and yet I still have an extremely increased digestive permeability. Therefore that knocks that idea on the head. It's bullshit IMO. That guy is self promoting and sells dvd's on at least one of his many websites.

Increased digestive permeability is caused, in most cases, by a bacterial infection! None of the supplements that are recommended to fix it can work or will work because healing is prevented until the infection is destroyed. Then the digestive system in multiple places, think IBS too, is repaired in a matter of minutes and no "special" nutrients or additional fixes are required and no l-glutamine is needed. Mine was partially fixed by destroying a highly resistant biofilm and the bacteria within. That was just one of many infections that I have and it was the least resistant. The one which causes CFS is far more resistant, I have had some effect against it but so far have not been able to destroy it. Also no current antibiotic therapy will destroy these bacteria which explains why no one has recovered following any conventional antibiotic therapies.

In your case as Hip suggests, celiac disease might of been what you were suffering from. The real causative factor for any genuine CFS is a bacteria IMO.

My ME was caused was caused by a bacteria, Yersinia Enterocolitica, but I went from moderately severe to moderate when I adopted the FODMAP diet, which excludes gluten amongst other things. I don´t see why someone couldn´t go from moderate to remission on a similar diet.

 

[Monty79]

I agree that it does not really make a great deal of sense that simply going gluten and grain free could lead to ME/CFS remission. What was your severity level of ME/CFS on the scale of mild, moderate and severe? Where were you on this scale before you cut out gluten and grains?

I would say I was between stage 2 and 3 on that scale, not able to work but with a few good days in between where I was able to cook and do housework. Yes, I have thought about the possibility of having celiac disease, but I was tested negative and celiac disease is mainly about gluten. What really did the difference for me was going off all grains in general, including rice, oats, corn, millet etc.

Maybe it's a form of grain sensitivity that was causing so much trouble for me, similar to gluten sensitivity, I really don't know.

 

[Monty79]

Hi @Mirea Thank you for sharing your story and congratulations on your remission! I think anything that can cause a leaky gut can lead to cfs/me. Weather it's gluten sensitivity, celiac disease, pathogenic bacteria, chronic use of non-steroidal anti-inflamatory drugs (nsaids) etc.

Thank you, yeah I think too leaky gut could be the cause for cfs/me for all of us and maybe we are all sensitive to different foods that are causing it. That's great you're having success in treating bacterial overgrowth, I will have to read about that. I know it's a great feeling being able to walk again, how I missed that going for a walk just like that. I'm beginning to ride my mountain bike again, my endurance has already improved in the last few weeks.

I wish you good luck in your remission as well!

 

[Monty79]

In your case as Hip suggests, celiac disease might of been what you were suffering from. The real causative factor for any genuine CFS is a bacteria IMO.

As far as I know it is not very well understood what really causes bacterial dysbiosis in the gut, it could be anything really. If prolamines cause an inflammatory reaction similar to gluten sensitivity to people who are reactive to them, it could very well be the source for it.

 

[Monty79]

I've never heard of prolamines. A quick google suggests they are a constituent part of gluten and relevant in coeliac disease. Could you have coeliac disease as well as CFS?

Another, far more common problem in the population is fodmap sensitivity. Symptoms are normally digestive and can be improved by reducing grains.

Are you sensitive to fodmaps (i.e fructans, incl fructose, galric, onion, wheat, oats?)

Digestive symptoms?

The only digestive symptom I have is constipation. No celiac as I was tested negative. Fodmaps, I don't think this is the cause as my food intake of fermented foods like milk kefir and sauerkraut etc. is really high. And I love onions and garlic! Wheat, oats are a no go for me as I'm avoiding gluten and prolamines.