Irritable Bowel Syndrome caused by MCAS? New report.

[ljimbo423]

Apparently these anti-CdtB and anti-vinculin autoantibodies are at high levels in patients with IBS-D and IBS-M, but not in IBS-C.

So this suggests IBS-C may be a different condition to IBS-D and IBS-M.

Some interesting points there Hip.

I only had IBS-D for years but for the last couple of years I've had only IBS-C, not IBS-M. I wonder if this means I had anti-CdtB and anti-vinculin autoantibodies but now they are gone.

I did have multiple gut infections when I was younger, like food poisoning etc.

 

[Hip]

I only had IBS-D for years but for the last couple of years I've had only IBS-C, not IBS-M. I wonder if this means I had anti-CdtB and anti-vinculin autoantibodies but now they are gone.

Hard to say. In some people, IBS-C symptoms could alternatively be slow transit constipation, I guess. Or could be gastroparesis (partial paralysis of the stomach), which often results in slow transit constipation. Quite a few of the ME/CFS patients with CCI reported they had gastroparesis.

This article discusses the difference between IBS-C and slow transit constipation.


In my case, I have IBS-D. It's not too bad now, but it used to be very severe.

I've found that taking peppermint oil capsules twice daily calms the bowel and more or less eliminates all IBS-D symptoms. But even if I make my IBS vanish in this way, it does not help my ME/CFS symptoms.

I would have thought it would, because some studies show IBS not only affects the bowel, but also has an impact on the prefrontal cortex of the brain, altering cognition. So you'd think improving IBS symptoms might improve brain fog and cognition, but it did not in my case.

Not sure how IBS affects the brain; maybe it's an autoimmune process that affects the brain, or maybe it's driven by some of the other gut-brain connections, like the vagus nerve.

But perhaps my peppermint oil capsules are only a Band Aid for the symptoms, but do nothing to alleviate the underlying condition.


One study found that 6% of patients diagnosed with IBS-D in fact have microscopic colitis (inflammation of the large intestine). So this is yet another bowel condition to take into account.

Treatments for microscopic colitis include bismuth subsalicylate (Pepto-Bismol), or steroids.

 

[ljimbo423]

Thanks Hip. Interesting links there. Especially the one about IBS altering cognition.

 

[YippeeKi YOW !!]

Pam, nothing is proven in science (that is for logic/math), but instead a theory is created.

I've said this before, but feel the need to repeat it because my Friendly Neighborhood Pedant license is up for renewal:

Before a theory can be accepted as a theory, it's preceded by an hypothesis, which is what a lot of people are referring to when they quote something as being a theory.

To move from 'hypothesis' to 'theory', sufficient evidence of its accuracy or workability has to be produced. So while it can;t be exactly proven, it can be proven to be more than hypothetical.

There. That should renew me for at least another quarter .... maybe even six months ....

 

[ljimbo423]

Before a theory can be accepted as a theory, it's preceded by an hypothesis, which is what a lot of people are referring to when they quote something as being a theory.

To move from 'hypothesis' to 'theory', sufficient evidence of its accuracy or workability has to be produced. So while it can;t be exactly proven, it can be proven to be more than hypothetical.

What I find fascinating, (without going too far off topic) is that Evolution is still considered a "Theory"! There's tons of evidence for it, yet it's still a theory, it's not considered a fact.

 

[YippeeKi YOW !!]

There's tons of evidence for it, yet it's still a theory, it's not considered a fact.

I think that without a reliable time machine, gathering actual, provable evidence might be difficult. The reason it moved from being a hypothesis to being a theory was that sufficient 'soft' evidence abounded, and more is coming to light as science progresses.

That's why Einstein's Special Theory of Relativity is a theory and not a fact, even tho it can, to a degree, be proven out hypothetically.

It's also why hypotheses about the root causes of various 'mystery' illnesses, including ME, remain in the hypothetical stages. At least so far ....

 

[MCASMike]

I forgot to mention, over the last few years, until I started on the MCAS protocol, I had a weird GI issue. It's not easy to describe, but it felt like food was moving through the GI too slowly. I would feel a little bloated, and sometimes it would almost seem like fermenting was occurring (it was uncomfortable but in a kind of active way), and I would get gas (belching) hours after eating, but without reflux or any other symptoms. That's gone now too.

 

[bertiedog]

o this suggests IBS-C may be a different condition to IBS-D and IBS-M.

Yes that is correct hence the new name for methane predominant SIBO now being called IMO because methanogens are archae not bacteria so it wouldn't be correct to call it SIBO now. BTW It is common for patients who have only methanogens as their issue to be obese with a BMI at least 15 points higher than normal whereas the IBS patient who has hydrogen as their issue are likely to be underweight.

I have listened to hours of You Tube videos about this topic and it seems it can be complicated in reading the results of the breath test. Usually they look for over 20 parts per million to diagnose hydrogen related SIBO and I think it was anything over 5 ppm for methanogens but he did stress that once fermentation happens the methanogens and hydrogen sulphide competes literally to gobble up the hydrogen, its literally food for them. If the methanogens win then there could be a flat lined picture as the hydrogen has been removed yet it is still a problem but there would be evidence of methanogens but not necessarily at a very high level.

With regards to methane it can show up in a breath test when taken at baseline, it doesn't need an hour or so to rise as is the case with hydrogen. Methanogens hang around for a long time in the small intestines and colon.

They have found that in around 25% of patients who have bad symptoms of SIBO were getting this flat lined picture and that is why they have gone on to develop the new test Trio Smart which can measure if there is hydrogen sulphide causing the issue. I am pretty sure he said that these can be the sickest patients with many other symptoms like bloating, inflammation, headaches, FM, interstitial cystitis (which I have developed more recently and couldn't understand why) and pain conditions.

I am not sure if there could still be Vinculin antibodies (which never go away) with hydrogen sulphide, I should think there could be because the main symptom with the hydrogen sulphide issue is diarrhoea which can be very severe. They do know which bacteria are causing the issue with this type of SIBO but I think they are going to publish a paper on this before announcing it publicly.

With regard to the methanogens they don't know yet why you have them in the first place but I think I have read that you could inherit them from your mother. Again this would fit with my own situation as my mother suffered with very severe constipation throughout her life. (This is just a thought of mine, it is still being studied by Dr Pimentel and his team).

He definitely now states that they have proved that for up to 80% of patients who have IBS do in fact have SIBO. I am not too sure for the other reasons why you could have IBS but having any abdominal surgery was the next most common reason as adhesions could affect the nerves in the gut.

One other thing I remember is that he has cultured the bacteria in both the large and small intestines and he finds that there are approximately the same number of bacteria which is contrary to what everyone thought previously but the biome is different.

Dr Pimentel doesn't really like using glucose for a breath test he prefers lactulose but I don't remember the reason for this.

Pam

 

[bertiedog]

ust came across a new IBS test called IBS Smart developed by Dr Pimentel that detects anti-CdtB and anti-vinculin antibodies.

This is the one I wanted to get here in the UK but its only the Maas Clinic that offer this at around £250. However you have to have a consultation and I am not well enough to travel and to be honest I only want to have the test as I understand what its all about. You can have a phlebotonist come to your home and draw blood but that's another £80 so I decided I would go ahead and treat as if its a combo of hydrogen and methane and see how it goes. They aren't certain yet how to treat hydrogen sulphide anyway as they are conducting trials to find this out.

Pam

 

[ljimbo423]

Such good information @bertiedog. Thank you for taking the time to post this! It's really amazing what they are finding in SIBO and IBS. I'm sure they will find much more as research continues.

 

[bertiedog]

I wonder if this means I had anti-CdtB and anti-vinculin autoantibodies but now they are gone.

You never loose the anti-Vinculin ones btw but you can loose the anti CdtB ones and many people do so somebody could have had severe food poisoning and could have developed the CdtB ones but as time went on they disappeared over time so this person didn't go on to have the Vinculin antibodies.

Apparently once you have these you are at greater risk of developing food poisoning in the future and then this reinforces the problem. For this reason Dr Pimentel gives patients who are going to be travelling and have Vinculin antibodies, Rifaximin to take at a low dose just in case they should develop food poisoning.

Pam

 

[bertiedog]

think that without a reliable time machine, gathering actual, provable evidence might be difficult. The reason it moved from being a hypothesis to being a theory was that sufficient 'soft' evidence abounded, and more is coming to light as science progresses.

However in this case the team at Mount Sinai have proved it in spades, covering all aspects as to why you develop it in the first place, what actually happens and for which you can test, ie Blood test for antibodies, Breath Test for gases, they have cultured the bacteria in both the colon and small intestines and they know how to treat too.

Obviously its not a 100% thing but its up there around 75-80%.

It is an example of huge progress via great scientists. Yes I wish they could do this for ME too!

Pam

 

[Hip]

being called IMO because methanogens are archae not bacteria so it wouldn't be correct to call it SIBO now.

Yes, it makes sense.

It is common for patients who have only methanogens as their issue to be obese with a BMI at least 15 points higher than normal whereas the IBS patient who has hydrogen as their issue are likely to be underweight.

That's interesting.

I was thinking about getting a breath test for SIBO/IMO, but then I read that the sensitivity and specificity of the SIBO breath tests are quite low: at 55% and 83% respectively for the glucose breath test. Ref: 1

So you will get many false negatives, and some false positive test results.

Apparently the gold standard for SIBO testing is small-bowel aspiration and culture, but that is rarely used, and I could not find any such tests commercially available.



I can't help feeling that the SIBO might reflect some fundamental immune issue. This could explain why when you take antibiotics for SIBO, the infection typically comes back. Normally with antibiotics, these kill most of the bacterial infection, and then it is up to the immune system to clear up the remains, and prevent the infection returning. Normally that works. But with SIBO, the infection often returns after antibiotics.

So perhaps there is some sort of immune weakness in the small intestine of SIBO patients that makes it hard for them to control these bacteria.

 

[YippeeKi YOW !!]

@Bert

However in this case the team at Mount Sinai have proved it in spades, covering all aspects as to why you develop it in the first place, what actually happens and for which you can test, ie Blood test for antibodies, Breath Test for gases, they have cultured the bacteria in both the colon and small intestines and they know how to treat too.

I was responding to a post here about Darwin's Theory of Evolution. Not ME or SIBO.

See posts #25 and #26 .....

And I believe that you're incorrect about the 'proven' part re SIBO and MCAS ... it's still hypothetical, and all they know for sure is that MCAS could cause SIBO thru alterations to GI immune system function, or " .... altered motility by local release of MC mediators. Antibiotic therapy appears to improve GI symptoms in some MCAS patients.....".

Not exactly a ringing endorsement.

 

[bertiedog]

And I believe that you're incorrect about the 'proven' part re SIBO and MCAS

I haven't mentioned any connection between SIBO and MCAS, it was others here who did that not me,

Pam

 

[YippeeKi YOW !!]

However in this case the team at Mount Sinai have proved it in spades, covering all aspects as to why you develop it in the first place, what actually happens and for which you can test, ie Blood test for antibodies, Breath Test for gases, they have cultured the bacteria in both the colon and small intestines and they know how to treat too.

Obviously its not a 100% thing but its up there around 75-80%.

It is an example of huge progress via great scientists. Yes I wish they could do this for ME too!

Clearly, I, uhhhhh, misunderstood .... I think it was the title of this thread that may have contributed to that, along with all your previous posts here...

Assumptions. Dangerous things.

What were you referring to?

 

[bertiedog]

So perhaps there is some sort of immune weakness in the small intestine of SIBO patients that makes it hard for them to control these bacteria.

Presumably if you have got these Vinculin antibodies which never go that would be one reason for things to keep going wrong. I think they slow everything down with the MMC so the cleaning wave doesn't work as it should and fermentation keeps happening when we eat. Methananogens do the same thing but there are no antibodies if they are in the small bowel.

I forgot to say earlier something which is important and Dr P says it is extremely common for his patients to have both hydrogen and methanogens show up when tested.

Apparently the gold standard for SIBO testing is small-bowel aspiration and culture, but that is rarely used, and I could not find any such tests commercially availab

For his studies Dr Pimentel regularly uses this gold standard investigation as another way of proving what he has been finding via the breath tests. He talked about qPCR being used but to be honest I don't know what that is!

Pam

 

[bertiedog]

What were you referring to?

IBS being SIBO in the vast majority of cases ie over 70-80%.

 

[YippeeKi YOW !!]

IBS being SIBO in the vast majority of cases ie over 70-80%.

Thanks !!!

 

[raghav]

IBS-D the transit is fast and hence undigested food reaches colon and causes bacterial overgrowth which slowly spreads to small intestine and causes SIBO