Are we still buying that idea that Crohn's is a chronic auto-immune inflammatory disease?

[InstantCoffee]

It seems absurd to me to believe that it's simply a random, unprovoked attack on the intestines at this point, with all I've known and experienced.

I know there's been strong connections to MAP and Jone's disease, SIBO, etc. but we don't really have a clear answer.

I see modern medical press releases like the one on GED-0301 still referring to it an auto-immune or chronic inflammatory condition and feel like modern pharm is so off-base.

If it is in fact a bacteria, or invasive body of sorts, isn't it dangerous to treat the symptoms while suppressing the immune system and leaving the root cause?



I don't see how chronic inflammation of the terminal ileum explains why I react to a trigger food within minutes of consuming it. Why I'm symptom free as long as I eat a controlled diet, and no amount of biologics could change that for me.

It doesn't account for its increased prevalence in developed countries, unless you simply write that off as more people being diagnosed or living long enough to be diagnosed due to modern medicine.

Even the Crohn's and Colitis foundation seems on board with their microbiome project. The idea that FMT can help or possibly cure it suggests that it's much more.

So where are we at on this? It seems dangerously ignorant to continue to act like it's simply a malfunction of the body if we have evidence to suggest otherwise.

 

[wellen1981]

It seems absurd to me to believe that it's simply a random, unprovoked attack on the intestines at this point, with all I've known and experienced.

I know there's been strong connections to MAP and Jone's disease, SIBO, etc. but we don't really have a clear answer.

I see modern medical press releases like the one on GED-0301 still referring to it an auto-immune or chronic inflammatory condition and feel like modern pharm is so off-base.

If it is in fact a bacteria, or invasive body of sorts, isn't it dangerous to treat the symptoms while suppressing the immune system and leaving the root cause?



I don't see how chronic inflammation of the terminal ileum explains why I react to a trigger food within minutes of consuming it. Why I'm symptom free as long as I eat a controlled diet, and no amount of biologics could change that for me.

It doesn't account for its increased prevalence in developed countries, unless you simply write that off as more people being diagnosed or living long enough to be diagnosed due to modern medicine.

Even the Crohn's and Colitis foundation seems on board with their microbiome project. The idea that FMT can help or possibly cure it suggests that it's much more.

So where are we at on this? It seems dangerously ignorant to continue to act like it's simply a malfunction of the body if we have evidence to suggest otherwise.

Lol, i was reading your wordpress an hour ago.

I have to say that yes most place are still going off what has been incorrectly guessed for years even though the more current understanding shows it to be inaccurate and more describing the symptoms of the causality.

To make your eyes water check this out...

UK is NHS, national health service this is their info on thier website for people wanting to learn about the condition(s)


http://www.nhs.uk/Conditions/Crohns-disease/Pages/Introduction.aspx



Not, even, funny.

The misinformation perpetuates still.


btw the FMT therapy needs to be very, very carefully done...

If for example you are slim build, high metabolism and get a donor who is obese low metabolism you will inherit the gut flora traits of that person and put on weight yourself to a similar degree as the donor.

From what I read up on FMT it seems the best candidates for donor are siblings and immediate family but ideally you would want similar build/metabolism as yourself.

I wish I could quote you my source for the above right now but i dont have ti to hand - all i can say is that medical professionals changed the way they were carrying out FMT in light of this unfortunate 'discovery' when certain patients post FMT started having significant weight changes in a very short space of time.

 

[InstantCoffee]

Lol, i was reading your wordpress an hour ago.

I have to say that yes most place are still going off what has been incorrectly guessed for years even though the more current understanding shows it to be inaccurate and more describing the symptoms of the causality.

To make your eyes water check this out...

UK is NHS, national health service this is their info on thier website for people wanting to learn about the condition(s)


http://www.nhs.uk/Conditions/Crohns-disease/Pages/Introduction.aspx



Not, even, funny.

The misinformation perpetuates still.


btw the FMT therapy needs to be very, very carefully done...

If for example you are slim build, high metabolism and get a donor who is obese low metabolism you will inherit the gut flora traits of that person and put on weight yourself to a similar degree as the donor.

From what I read up on FMT it seems the best candidates for donor are siblings and immediate family but ideally you would want similar build/metabolism as yourself.

I wish I could quote you my source for the above right now but i dont have ti to hand - all i can say is that medical professionals changed the way they were carrying out FMT in light of this unfortunate 'discovery' when certain patients post FMT started having significant weight changes in a very short space of time.

I've heard of single case claiming that and it seems absurd.

Weight gain still obeys basic laws of thermodynamics, you can't gain more weight than you consume calories to do so.

 

[wellen1981]

read up more on gut flora understandings and as you actually mentioned in your first post 'microbiome'

I shared your sceptism at first but this is not talking about weight gain but rather the gut flora balance dictating metabolism rates i believe - wish i had all my research organised to just link you right now.

 

[FrozenGirl]

I think people want to say it is because of something. So they do. Not everyone believes it obviously and it isn't the most prevelant theory but it's out there and its simple, so people go with it. It is annoying but as long as it isn't my doctor saying it, I'm not too bugged by it.

 

[FrozenGirl]

And that is a whole different conversation if you look at crohns vs UC when right now, treatment wise we lump them together for the most part. I believe UC does look like it leans more towards the autoimmune inflammation theory than crohns.

 

[kenvh]

I agree that there is a root cause a d the root is microbiota. The inflammation has inded a root cause and all drugs just supress it. But i do feel like we need some , because what else can some people do? They dont know the cause.
But they should search more after the real cause instead of clearing the normal immune response like u say. I dont think its a wrong immune response. I think its maybe a correct one, but there is somzthing weong with some microbes. Or some are mutated, thats what i think.

Wich diet do u follow? Do u eat low fodmap or scd? Wich supps do u take??

It seems absurd to me to believe that it's simply a random, unprovoked attack on the intestines at this point, with all I've known and experienced.

I know there's been strong connections to MAP and Jone's disease, SIBO, etc. but we don't really have a clear answer.

I see modern medical press releases like the one on GED-0301 still referring to it an auto-immune or chronic inflammatory condition and feel like modern pharm is so off-base.

If it is in fact a bacteria, or invasive body of sorts, isn't it dangerous to treat the symptoms while suppressing the immune system and leaving the root cause?



I don't see how chronic inflammation of the terminal ileum explains why I react to a trigger food within minutes of consuming it. Why I'm symptom free as long as I eat a controlled diet, and no amount of biologics could change that for me.

It doesn't account for its increased prevalence in developed countries, unless you simply write that off as more people being diagnosed or living long enough to be diagnosed due to modern medicine.

Even the Crohn's and Colitis foundation seems on board with their microbiome project. The idea that FMT can help or possibly cure it suggests that it's much more.

So where are we at on this? It seems dangerously ignorant to continue to act like it's simply a malfunction of the body if we have evidence to suggest otherwise.

 

[The Real MC]

FWIW, root cause in my case was trigger foods. I kept a log and isolated foods that triggered inflammation. Once I cut those foods out of my diet, CD gave me a lot less trouble. The only trouble is spicy condiments which can be sneaky, as some have a "slow burn" which is too late to stop. I had a resection, and spices cause the stricture with the ileum was removed to inflame.

There were two occasions I was laid up in the hospital with a blockage at that stricture. In both cases, the NG tube cleared the blockage. The first time, they pumped me 125mg of steroids 4x a day via IV. The reaction my body had to such high dosages was low pulse rate (dipped to dangerously low 30s on one night) and lethargy. By the time I was discharged, I had to go on disability for five weeks because I was not tapered off the steroids and as a result all my muscle motor motions were messed up. I was exhausted, I had no endurance, I couldn't drive, I couldn't read, I had to make more corrections to my typing on the computer, and I couldn't walk straight.

The second time hospital stay was the same, except I was given zero steroids. I was discharged in half the time and I was back to work shortly after with no disability leave.

My GI also agreed that steroids did more harm than good. Frankly I refuse to take pain killers until after the diagnosis from the MRI or after being admitted.

Unfortunately CD has no one-size-fits-all solution.

 

[Ozboz]

So explain this too me I took a bad ecstasy tablet which de-hydrated me and over heated my gut. Prior to that i had no gut issues awesome appetite after my appetite went bad then i started having bleeding although no pain no real symptoms went to GI he did blood work said its lack of fiber. I started taking fiber supplement and no. Bleeding good stools appetite wad good. Then few years later had car accident lost appetite altogether and more bleeding went to Gp he did blood work said I needed to go to hospital then they diagnose with UC got second opinion said its crohn's colitis so where does gut bacteria play into this

 

[Anonymous77]

Im a medical student and ill have to keep it short as I'm in hospital with the crohns as we speak, but we're taught that it is very much autoimmune, regardless of whether a pathogen first triggers it. The main idea is that people demonstrating HLA-B27 can develop it as either a pathogen resembling this protein is beaten and then the immune process continues or the protein itself is overproduced in cells and leads to immune reactions. This is supported by crohns involving whole body inflammation and its close relation to arthropathy. Autologous stem cell transplant seems to have a positive effect on crohns.

I personally believe 'crohns' probably refers to a few different diseases, some true autoimmunities some infective pathology and trying to treat them all as one is futile

 

[eleanor_rigby]

Im a medical student and ill have to keep it short as I'm in hospital with the crohns as we speak, but we're taught that it is very much autoimmune, regardless of whether a pathogen first triggers it. The main idea is that people demonstrating HLA-B27 can develop it as either a pathogen resembling this protein is beaten and then the immune process continues or the protein itself is overproduced in cells and leads to immune reactions. This is supported by crohns involving whole body inflammation and its close relation to arthropathy. Autologous stem cell transplant seems to have a positive effect on crohns.

I personally believe 'crohns' probably refers to a few different diseases, some true autoimmunities some infective pathology and trying to treat them all as one is futile

I'm not sure it is thought of as an autoimmune disease? I cannot find any official bodies that refer to it as this, at least in the UK such as the NHS or NICE. It is thought of as an immune related disease, but does not appear to be an autoimmune disease (in that the immune system is not being triggered by the body itself). With Crohn's the immune system is also attacking healthy bacteria in the gut, not the gut itself, which again is not autoimmune.
You can also be HLA-B27 negative and still have Crohn's.

Furthermore, recent studies have shown stem cell transplants are not particularly effective in Crohn's. See here: http://jamanetwork.com/journals/jama/fullarticle/2475462

 

[InstantCoffee]

FWIW, root cause in my case was trigger foods. I kept a log and isolated foods that triggered inflammation. Once I cut those foods out of my diet, CD gave me a lot less trouble. The only trouble is spicy condiments which can be sneaky, as some have a "slow burn" which is too late to stop. I had a resection, and spices cause the stricture with the ileum was removed to inflame.

There were two occasions I was laid up in the hospital with a blockage at that stricture. In both cases, the NG tube cleared the blockage. The first time, they pumped me 125mg of steroids 4x a day via IV. The reaction my body had to such high dosages was low pulse rate (dipped to dangerously low 30s on one night) and lethargy. By the time I was discharged, I had to go on disability for five weeks because I was not tapered off the steroids and as a result all my muscle motor motions were messed up. I was exhausted, I had no endurance, I couldn't drive, I couldn't read, I had to make more corrections to my typing on the computer, and I couldn't walk straight.

The second time hospital stay was the same, except I was given zero steroids. I was discharged in half the time and I was back to work shortly after with no disability leave.

My GI also agreed that steroids did more harm than good. Frankly I refuse to take pain killers until after the diagnosis from the MRI or after being admitted.

Unfortunately CD has no one-size-fits-all solution.

A trigger is not a root cause. Something is causing your digestion to react poorly to those foods.

 

[Scipio]

Im a medical student and ill have to keep it short as I'm in hospital with the crohns as we speak, but we're taught that it is very much autoimmune, regardless of whether a pathogen first triggers it. The main idea is that people demonstrating HLA-B27 can develop it as either a pathogen resembling this protein is beaten and then the immune process continues or the protein itself is overproduced in cells and leads to immune reactions. This is supported by crohns involving whole body inflammation and its close relation to arthropathy. Autologous stem cell transplant seems to have a positive effect on crohns.

I personally believe 'crohns' probably refers to a few different diseases, some true autoimmunities some infective pathology and trying to treat them all as one is futile

Sounds like you are talking about ankylosing spondylitis‎ and related diseases more than Crohn's. That's where the strong associated with HLA-B27 is evident. There is no particular association of Crohn's with HLA-B27 unless the Crohn's patients also show an extra-intestinal spondylarthritic manifestation, and that's a small minority of Crohn's cases.

Regarding Crohn's as an autoimmune disease is sort of the "old school" view of the condition. You see that in the older text books and publications. Nowadays it tends to seen in the literature not as a direct immune response against self antigens (true autoimmunity) so much as an inappropriate or overly aggressive response to normally benign gut bacteria resulting in collateral damage to gut tissues.

Everyone agrees that Crohn's is a very heterogeneous disease with multiple factors (genetics, gut microbiome, environmental exposures, etc.) playing varying roles in its pathogenesis. That's one reason why it is often so hard to treat.

 

[The Real MC]

A trigger is not a root cause. Something is causing your digestion to react poorly to those foods.

And until that is identified (which no one has), my trigger foods remain a root cause. I was careful to clarify "in my case" as I am well aware that there is no one-size-fits-all solution for CD patients.

 

[eleanor_rigby]

Sounds like you are talking about ankylosing spondylitis‎ and related diseases more than Crohn's. That's where the strong associated with HLA-B27 is evident. There is no particular association of Crohn's with HLA-B27 unless the Crohn's patients also show an extra-intestinal spondylarthritic manifestation, and that's a small minority of Crohn's cases.

Regarding Crohn's as an autoimmune disease is sort of the "old school" view of the condition. You see that in the older text books and publications. Nowadays it tends to seen in the literature not as a direct immune response against self antigens (true autoimmunity) so much as an inappropriate or overly aggressive response to normally benign gut bacteria resulting in collateral damage to gut tissues.

Everyone agrees that Crohn's is a very heterogeneous disease with multiple factors (genetics, gut microbiome, environmental exposures, etc.) playing varying roles in its pathogenesis. That's one reason why it is often so hard to treat.

Yes exactly, you explain that much better than me

 

[my little penguin]

http://www.aaifnc.org/Documents/symposium_2012/Dr._Hal_Hoffman.pdf

Newer studies are placing Crohns as auto inflammatory
Not autoimmune

 

[Anonymous77]

Sounds like you are talking about ankylosing spondylitis‎ and related diseases more than Crohn's. That's where the strong associated with HLA-B27 is evident. There is no particular association of Crohn's with HLA-B27 unless the Crohn's patients also show an extra-intestinal spondylarthritic manifestation, and that's a small minority of Crohn's cases.

Regarding Crohn's as an autoimmune disease is sort of the "old school" view of the condition. You see that in the older text books and publications. Nowadays it tends to seen in the literature not as a direct immune response against self antigens (true autoimmunity) so much as an inappropriate or overly aggressive response to normally benign gut bacteria resulting in collateral damage to gut tissues.

Everyone agrees that Crohn's is a very heterogeneous disease with multiple factors (genetics, gut microbiome, environmental exposures, etc.) playing varying roles in its pathogenesis. That's one reason why it is often so hard to treat.

It certainly is not the way we regard it: crohns is part of a family of disorders called spondyloarthropathies and follows HLA B27 epidemiology quite consistently. Obviously crohns is quite attached to these as about 30% have joint issues alongside it, though im happy to believe the other 70% may be under an entirely different disease mechanism separate to B27, or rather you could say that the 30% may not be crohns. However this same family of diseases also contains uveitis which can occur without any joint involvement. My medical school is attached to one of the two leading IBD research hospitals so it's clearly not outdated, no more than any practiced medicine is. Currently it is doing a lot of research into dimerization of the protein and how that may trigger inflammatory response.

As for it being auto-inflammatory, well that fits well with the hypothesis. I've transcribed a part of one of the lectures on it (recorded because they are obviously of a personal interest):

"A second theory, referred to as the HLA-B27 misfolding hypothesis, is based on a peculiar biochemical property of the HLA-B27 molecule. These unfolded HLA-B27 proteins accumulate in the endoplasmic reticulum. A proinflammatory stress response called the endoplasmic reticulum unfolded protein response ensues. As a result, interleukin 23 is released, activating a proinflammatory response via interleukin-17 and T lymphocytes."
​

 

[Anonymous77]

I'm not sure it is thought of as an autoimmune disease? I cannot find any official bodies that refer to it as this, at least in the UK such as the NHS or NICE. It is thought of as an immune related disease, but does not appear to be an autoimmune disease (in that the immune system is not being triggered by the body itself). With Crohn's the immune system is also attacking healthy bacteria in the gut, not the gut itself, which again is not autoimmune.
You can also be HLA-B27 negative and still have Crohn's.

Furthermore, recent studies have shown stem cell transplants are not particularly effective in Crohn's. See here: http://jamanetwork.com/journals/jama/fullarticle/2475462

Sorry i really should have said auto-immune and/or auto-inflammatory. I personally think we'll find there are multiple diseases that lead to crohns syndrome and attacking normal gut bacteria will be part of this, if not a consequent result in all forms. Most studies i have seen report that stem cell transplants are effective in treating crohns, in fact our hospital was the first in the world to treat a man with MS via this method, which may be why they are so proud.

 

[Glockola]

Well as you all may know. The lab test they did with rats showed that if the intestines were sterile the rats would not develop any form of IBD. So clearly in Crohns the intestinal immune system is overreacting to the bacterial flora.
So I would not call it an autoimmune disease

 

[Glockola]

There seem to be a defect in the gut mucosa that makes it over react to normal bacteria and become inflamed.
Perhaps there is some environmental trigger that sets it all off.

 

[Anonymous77]

As i have heard it the reaction to bacteria may well be secondary; the barrier is first compromised and so immune reactions begin to take place against the invading pathogens. Things like sterility and elemental diets would ease the bacterial load and thus symptoms but not cure the disease. Though i would be interested if you have a link for the study.

 

[Glockola]

As i have heard it the reaction to bacteria may well be secondary; the barrier is first compromised and so immune reactions begin to take place against the invading pathogens. Things like sterility and elemental diets would ease the bacterial load and thus symptoms but not cure the disease. Though i would be interested if you have a link for the study.

Yes, I think you are exactly right, the immune reaction to otherwise normal bacteria flora is only secondary to the compromised intestinal mucosa.

The big question is what causes this breach in the integrity of the intestines. Perhaps it has to do with increased intestinal permeability.

Environmental factors such as genetics, medications, food products and infections.

I heard of one guy who go crohns after 5 years of daily heavy NSAID use.

And another guy who got ulcerative colitis after a severe infection during holiday in egypt.

 

[Glockola]

The interesting thing they did next was to raise a strain of these rats in a completely sterile environment. These rats didn't develop either arthritis or colitis, but similar rats raised in standard lab conditions, which means they were exposed to all kinds of germs, did get the diseases.

 

[Glockola]

This is still all speculation. It could be that IBD is caused by a gut flora imblance that certain genetically predisposed individuals immune system reacts agains.

 

[aypues]

And until that is identified (which no one has), my trigger foods remain a root cause. I was careful to clarify "in my case" as I am well aware that there is no one-size-fits-all solution for CD patients.

it may be the root cause of your symptoms, yes. but the pathology of your disease is not caused by diet. at. all. sorry
it will be with you regardless of what you put in your mouth.

 

[Glockola]

it may be the root cause of your symptoms, yes. but the pathology of your disease is not caused by diet. at. all. sorry
it will be with you regardless of what you put in your mouth.

Yes the Crohns pathology has nothing to do with foods. Some foods may aggravate it. But it isn't possible to cure it through diet. There are some that has gone on a vegetarian diet which seems dangerous from a nutritional standpoint. since many of us are low on calories, proteins and b-vitamins.

 

[Anonymous77]

This is still all speculation. It could be that IBD is caused by a gut flora imblance that certain genetically predisposed individuals immune system reacts agains.

I agree fully that it's all just speculation, it seems every week a new "cause" is found and really what it seems to me is that they are just identifying systemic changes long after the disease has begun - that or there really are dozens of diseases all being called crohns. It all makes you feel very helpless when the medical profession can only shrug its shoulders and the rest of the field is either opportunism or unsubstantiated.

My input in the thread wasn't to defend medicine's ability to fix it, they are shockingly bad in that regard, just that they aren't holding onto auto-immunity out of pig-headedness and jumping to more 'alternative' treatments may still do more harm than good. I wish i could take back all the money i spent on probiotics and supplements and instead give it all to a research charity.

 

[Glockola]

I agree fully that it's all just speculation, it seems every week a new "cause" is found and really what it seems to me is that they are just identifying systemic changes long after the disease has begun - that or there really are dozens of diseases all being called crohns. It all makes you feel very helpless when the medical profession can only shrug its shoulders and the rest of the field is either opportunism or unsubstantiated.

My input in the thread wasn't to defend medicine's ability to fix it, they are shockingly bad in that regard, just that they aren't holding onto auto-immunity out of pig-headedness and jumping to more 'alternative' treatments may still do more harm than good. I wish i could take back all the money i spent on probiotics and supplements and instead give it all to a research charity.

Well let us hope they will find a way to perform whole intestinal transplantations.
So we all can get a new fresh working one.
Maybe they can grow it in a lab from patients own stem cells.

 

[Bufford]

I agree fully that it's all just speculation, it seems every week a new "cause" is found and really what it seems to me is that they are just identifying systemic changes long after the disease has begun - that or there really are dozens of diseases all being called crohns. It all makes you feel very helpless when the medical profession can only shrug its shoulders and the rest of the field is either opportunism or unsubstantiated.

My input in the thread wasn't to defend medicine's ability to fix it, they are shockingly bad in that regard, just that they aren't holding onto auto-immunity out of pig-headedness and jumping to more 'alternative' treatments may still do more harm than good. I wish i could take back all the money i spent on probiotics and supplements and instead give it all to a research charity.

Crohn's like cancer presently has no cure. For researchers its still shooting in the dark when it comes to finding the key to this scourge. But by experimenting perhaps one day there will be a cure. There is nothing wrong with experimenting on your own, we are all pioneers who live and cope with this disease.