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Crohn's Disease Forum » General IBD Discussion » The (mis)labelling of Crohn's as an autoimmune disease


 
08-01-2012, 10:11 AM   #31
Moe.
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One of the causative agents is MAP.
Causes the same type of inflammation in cows. (do we agree?)

You may or may not agree. The immune response is to send out macrophages to deal with the pathogen, consume it for breakfast, and poo it out (very simple). With MAP the macrophage consumes it, but MAP is able to replicate inside the macrophage and then kill it(not so simple).

Excess TNF is then produced in the gut by the cytokines. Due to the immune system trying to kill MAP or any other associated Pathogens. So the Immune system is weakened due to this bacteria.

"Recent findings indicate that activated T lymphocytes, showing restricted T-cell receptor repertoire and a Th1-like profile of cytokine production, are responsible for macrophage activation and release of inflammatory cytokines, toxic oxygen metabolites and nitric oxide, which initiate and maintain the transmural intestinal inflammation in Crohn's disease. A critical event in the promotion of Th1-type response at gut level may involve up-regulation of IL-12 production and the breakdown of tolerance against the intestinal flora".
(cant add the source am new user)

Which then leads to the fact that yes it is one bad ass problem, but can be solved if people (governments) really cared. Things that work
-SCD/low Carb Diets (Remove Dairy except for yoghurt and carbs out of the system)
-Anti-Map Treatments (destroys the bacteria) we do not know how much, but S.Naser and Hermon-Taylor will bring something to the table soon.
-Stem Cell therapy (The immune system returns to normal, it can actually remove the bacteria).
-Humira/Remicade removes excess TNF.

So is it an auto-immune disease? Maybe if you want to look at it that. Ill always disagree.

Every problem has a solution, therefore Every disease has a cure.
Do you remember the days H.Polyri was caused by stress. I Kid you not stress causing stomach ULCERS.
08-01-2012, 10:16 AM   #32
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I see the distinction between the two labels in the original argument, and it reminds me of my last visit to my gastro. To me the experience was frustrating and illustrates the narrow mindset in the vast majority of practicioners in the medical profession - a reminder for me again that I might as well be a faceless lump of flesh with a big label over my face that says 'Crohn's Disease' to remind the doctor what my treatment should be.

Basically, every 'negative' physical symptom I have ever got, is summarized as proof of my 'Crohn's' acting up, as though it was the only thing going on in my body. As though there weren't a whole host of other activities going on that were totally unrelated to this poorly defined disease. For example, 20 years ago I had a resection and over time one of the small intestine looped up and connected itself to my duodenum and created a hole. They had to go in and fix it, and I got an ileostomy. My surgeon said when the original resection was done 20 years ago stuffed it all back in and it was a mess, like kinked water hose. Well the gastro said, there was 'active Crohn's' simply because the surgeon noted inflamed tissue at the site where the intestine connected to the duodenum. Well duh! So, that means every little inflammation is evidence of Crohn's - to my doctor at least. Since the last operation I have had NO PAIN, and no symptoms. Yet the gastro wants to put me on Humira etc.

Sorry, this is off topic. But my point is that I disagree with using either label. Why get hung up on it? If the cause is within my control then I can be pro-active and do something about it. If its genetic, then not so much and I may as well give up and let nature take its course.

However, since all the stats show increased incidence of this 'disease' in developed countries, I am tempted to emulate conditions that exist in those countries where it has yet to appear. Namely, cleanliness. Proliferation of bacteria, absence of sterile cleanliness. Fact is, we have more bacteria in our bodies than cells. The significance is not lost on me. Also, when I was severely anemic I craved eating earth! Clay to be exact. It's a good source of bacteria. It won't cure a physical hole in the intestine or a damaged duodenum but it will re-populate the gut with good bacteria.

In any case, I'm quite happy with my overactive immune system. No colds, flu, infections. No way am I going to trade in some pain and diarrhea for risk of major infection or disease. I don't care what you call it, it's all the same to me.

Just my 2 cents...
08-01-2012, 01:28 PM   #33
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Very interesting concept Mark - thanks for posting. I am half way through watching it, and I find it fascinating, and his research results seems very plausible.

I was just wondering though, and would appreciate everyone's input here, if this theory is true, why would the immunosuppresant class of drugs like 6MP and Methotrexate improve Crohn's symptoms - as it would further weaken the immune system, allowing the infectious agent to multiply and cause further damage. Instead, why would it help Crohn's symptoms when we weaken the immune system further.

If Crohn's is caused by various infectious agents like MAP, E Coli, H Pylori infecting us, and then our mutation of the NOD2 gene not being able to recognize it, and our weak immune system not being able to destroy the infection, why would treatments that weaken our immune system help?

That's the only part that puzzles me and I'm trying to figure out a reason why.

Last edited by Tenacity; 08-01-2012 at 02:31 PM.
08-01-2012, 01:43 PM   #34
kiny
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Very interesting concept Mark - thanks for posting. I am half way through watching it, and I find it fascinating, and his research results seems very plausible.

I was just wondering though, and would appreciate everyone's input here, if this theory is true, why would the immunosuppresant class of drugs like 6MP and Methotrexate improve Crohn's symptoms - as it would further weaken the immune system, allowing the infectious agent to multiply and cause further damage. Instead, why would it help Crohn's symptoms when we weaken the immune system further (and in stem cell transplants, we actually destroy the immune system).

If Crohn's is caused by various infectious agents like MAP, E Coli, H Pylori infecting us, and then our mutation of the NOD2 gene not being able to recognize it, and our weak immune system not being able to destroy the infection, why would treatments that weaken our immune system help?

That's the only part that puzzles me and I'm trying to figure out a reason why.
I wasn't really nice in the thread back then, but someone bumped it so, now I bumped it myself.

MAP or invasive E Coli are not regular bacteria, MAP especially is a really smart bacteria and doesn't behave at all like other bacteria. It has really sophisticated ways to steal iron, it is able to prevent apoptosis and it hides inside macrophages, which means normal antibiotics like Flagyl and rifaximin can't get to it, because they are not macrophage penetrating, if MAP is involved, they could actually end up making the disease worse, because they are predisposing you for antibiotics resistance the moment they do use macrophage penetrating antibiotics. Clarithromycin and cipro for example are macrophage penetrating. That's why they use them instead of normal antibiotics, because of their ability to get to the pathogen.

It's also incredibly hard to detect, you can rarely see it under microscope, it takes months to culture, the best way is DNA testing with PCR. And it behaves differently depending on the host, in humans it is in spheroplast form and there is more than one strain of MAP, which explains why some couldn't find MAP at all for years.

As far as your questions, 6MP and TNF-blockers have not the effect on MAP as you would think. Certain TNF blockers are able to induce apoptosis, for some reason TNF-blockers and 6MP halt MAP and in the case of infliximab it lowers MAP, at least in the short term.

http://www.johnes.org/handouts/files/Shin_6MP.pdf

http://www.ecco-jccjournal.org/artic...017-7/abstract

That doesn't mean 6MP or TNF blockers are a good way to stop a pathogen though, it's just that they see it's stopping MAP (maybe on an insignificant level though), they see this in almost all successful crohn medications. But coming off the medication and the long term use of medication might actually end up helping MAP, but in the short term, immunosuppressants don't seem to be beneficial to MAP, for whatever reason, it's detrimental to MAP. Might be the same with invasive E Coli, I dunno.

Immune modulators like 6MP and TNF blockers could be making the disease both better and worse, the paradox that an immunesuppressant might actually stop a pathogen in the short term but help in the long term, is I think part of the reason gastros have had a hard time in the past wrapping their head around the increased MAP and invasive E Coli they find, they have blamed it on increased permeability and side effects of the disease instead of considering it's caustative.

Not all mycobacteria respond like that, some do benefit from TNF blockers, like tuberculosis, that's why they do that test under your skin, mantoux test, because TNF blockers are known to help latent tuberculosis.

As far as overreactive immune system some people use, that's not what is actually going on at all. People with crohn are immune deficient, very simple tests have shown this. Inject a harmless pathogen in a person with crohn, now do the same thing in a control, the person with crohn will take much longer to wipe out the pathogen than the control. NOD2 and ATG16L1 mutations predispose people with a weakened immune response. Our adaptive immune system might try to overcompensate, but that doesn't mean we have an overreactive immune system, we might be overcompensating our innate immune system or both because we are unable to clear the bacteria.

As far as our body attacking "harmless bacteria", I would like to know which mythical bacteria those are that suddenly invoke an immune response. MAP and invasive E Coli are anything but harmless. I have a real hard time believing that our body just one day decided to attack our own intestinal flora for no reason at all, it makes no sense and not a single study actually shows this is what is going on. That isn't stopping sites and doctors from making stuff up to explain the disease though.

Last edited by kiny; 08-01-2012 at 02:41 PM.
08-01-2012, 02:03 PM   #35
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I've never heard of autoinflammatory and I've been battling CD for 21 yrs now....not saying I know IBD inside and out, but autoinflammatory has never been used in any of the research articles I've gotten from the CCFC, nor have I seen it being used in any online research.

This is what I do know;

According to researchers IBD is an inflammatory disease that causes the immune system to function improperly and ends up attacking harmless bacteria (that the immune system believes is actually harmful bacteria) that are found in the GI tract.

Also according to researchers, there is a gene located on chromosome 5 that normally produces a protein that sits on the cell surface and controls movemement of specific substances in and out of the cell. When altered, the gene produces a protein that functions improperly allowing toxins increased entry into the cell...this gene is primarily observed in CD patients. This is the genetic part of crohn's disease, the nature of having crohn's disease means that your immune system functions improperly, unable to recognize harmless bacteria as just that so it attacks the harmless bacteria and therefore causes inflammation.
08-01-2012, 06:46 PM   #36
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Tenacity, I'm not real savvy on the immune system or the terminology, but my rudimentary understanding is that because our innate immune system (first line of defense) is defective, the invaders are able to take up residence within our cells (within our macrophages actually, which are the cells which are supposed to capture invaders and then self-destruct, killing the invader in the process and showing it's dna to our immune system so that said invaders will be quickly recognized in the future). Since this process does not work, our adaptive (I think) immune system goes into action sending in the heavy artillery like TNF-alpha and possibly some other inflammatory chemicals which are aimed at killing the invader. All of the tnf-alpha is painful to our intestinal tissues, and thus immunosuppressants & tnf-alpha-inhibitors put a stop to the barrage of chemicals inflicted on our tissues by our immune system. Now I've heard it said that when the immune system is tamped down like this, our tissues can recover and heal. I've also heard it said, as Dr. Behr mentions in the video, that tnf-alpha-inhibitors can actually induce apoptosis of the macrophages which harbor the MAP, and he further mentions that when tnf-alpha inhibitors were first created, they were created with killing infection in mind, not stopping inflammation. So it seems that it's not entirely clear what percentage of the ameliorating effects that immune suppressors/modulators give, stem from simply stopping the painful barrage of self-inflicted chemicals vs. eradication of MAP. But this is the first I've heard of the MAP stuff. Historically I'd heard simply that the immune drugs just stop the painful chemicals from being self-inflicted.
08-01-2012, 07:37 PM   #37
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So the real question is - if this is so well known (I'm finding articles back to 1997), how are they testing for it and do they consistently test for it (MAP).

I had so many tests I can't even tell you (including several biopsies) and the GI said no trace of any kind of infection. I do have messed up genes and I am creating at least two antibodies at high levels. So how would I ever know? Of course why I'm asking, I don't know since I can't take any form of mycin or Cipro. It appears I'm out of luck if MAP is the problem.

And part of me has a hard time believing I can't fight off infections or I'm not effective at it since I've had to do that for years on my own. I'm allergic to most antibiotics and doctors and dentists are extremely reluctant to give me the remaining ones that I can take based on my history of having a sudden and powerful allergic reaction after a time (not that those antibiotics are very useful anyway). They've left me to my own devices for years with the instruction that if it turns deadly, they'll try something.

Last as for MAP, I would think I'd have been exposed to that as a kid since I grew up in farm country and drank milk by the gallons, not to mention was around cows. I even had unpasteurized milk strained through cheesecloth. Yet I had no issues when I was young at all. I had no issues until I was over 50 and not drinking milk or eating beef at the time. I'm just wondering here - wouldn't this have shown up a long time ago at least in the form of Crohn's?
08-01-2012, 07:46 PM   #38
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So the real question is - if this is so well known (I'm finding articles back to 1997), how are they testing for it and do they consistently test for it (MAP).

I had so many tests I can't even tell you (including several biopsies) and the GI said no trace of any kind of infection. I do have messed up genes and I am creating at least two antibodies at high levels. So how would I ever know? Of course why I'm asking, I don't know since I can't take any form of mycin or Cipro. It appears I'm out of luck if MAP is the problem.

And part of me has a hard time believing I can't fight off infections or I'm not effective at it since I've had to do that for years on my own. I'm allergic to most antibiotics and doctors and dentists are extremely reluctant to give me the remaining ones that I can take based on my history of having a sudden and powerful allergic reaction after a time (not that those antibiotics are very useful anyway). They've left me to my own devices for years with the instruction that if it turns deadly, they'll try something.

Last as for MAP, I would think I'd have been exposed to that as a kid since I grew up in farm country and drank milk by the gallons, not to mention was around cows. I even had unpasteurized milk strained through cheesecloth. Yet I had no issues when I was young at all. I had no issues until I was over 50 and not drinking milk or eating beef at the time. I'm just wondering here - wouldn't this have shown up a long time ago at least in the form of Crohn's?
As far as testing, this is the biggest problem right now related to crohn. Biopsies / serum should be tested for invasive E Coli and for MAP, because for one it's irresponsible not to at this point, and second of all clinics are using Flagyl and rifaximin. Flagyl & rifaximin (and likely a bunch of other I don't know) is predisposing people with macrophage-penetrating antibiotics resistance (this resistance is not seen in Amoxicilline). If the link between Crohn and MAP / E Coli becomes caustative I am going to sue the pants of some people, it is malpractice to ignore facts. The facts are there, MAP and invasive E Coli are found in much higher numbers than in controls.

Even if it isn't caustative, if you have dying cows, goats, buffalos, monkeys, and basically every animal infected who is dying from symptoms extremely similar to crohn, and they test people and actually find in the majority that they have MAP, and then you as a gastro or doctor decide to ignore this, then you are liable for malpractice. This same thing happened with Helicobacter, doctors ignored this, and they all became liable for malpractice, if E Coli or MAP is caustative it is the exact same scenario.

As far as your questions of drinking milk / beef. It might be highly dependent on your intake and ability to clear the bacteria. If you drink a glass of milk for years with 100 MAP (just throwing out a number), this might cause no issues at all. But if you one day eat a piece of steak from a cow diagnosed with Johne's Disease that was slaughtered because it was dying (and make no mistake, this is how farmers operate) it might be far more detrimental to you than all those glasses of milk you consumed.

Last edited by kiny; 08-01-2012 at 08:08 PM.
08-01-2012, 08:19 PM   #39
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I'm going to ask my GI if it was included in the tests when I see her next.

I've never had Flagyl or rifaximin. I'm sure about that. I know what Flagyl is and why they use it. Amoxicillin, while not a problem for this, is also something I've never had because I can't take any cillin forms.

I don't eat beef and I haven't for years and years. If I got it the most likely source would be the water supply or cheese/ice cream.

Trust me, you don't need to explain that they slaughter sick cows. I grew up around all of that. When I grew up, they were dumping DDT on everything for pest control and we all drank well water and ate the food grown in that ground. If you knew what they did to your food, you wouldn't eat anything. It's disgusting. The only thing that surprises me is that I would get this now. Statistically my odds had to be much greater back then.

I'm just hoping that isn't it for me since that would not be a good outcome.
08-01-2012, 08:27 PM   #40
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I'm going to ask my GI if it was included in the tests when I see her next.
I can already tell you it wasn't, the number of clinics testing for MAP or E Coli is extremely small. There is an incomprehensible stance towards relating crohn to infections with many GI, an I hope that when there is a link, they all get what they deserve for their stubbornness to educate themselves. Having a difference of opinion is one thing, but ignoring studies and sitting in an ivory tower putting your fingers in your ears makes you liable.

If testing for infection was an extremely expensive procedure I would change my stance on this, but it isn't, and the only reason it's not being done is pure stubbornness and pure ignorance on the part of some GI, and that's being extremely nice.

JHT talks about it here http://www.youtube.com/watch?v=GPO63UWZgy4

Last edited by kiny; 08-01-2012 at 09:33 PM.
08-01-2012, 08:47 PM   #41
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If people are really interested in this, here is a recent study linking MAP to T1D:

(to put this into perspective, people with crohn are more likely to get diabetes)

http://www.hindawi.com/journals/cdi/2012/785262/

"We demonstrated for the first time that Mycobacterium avium subsp. paratuberculosis (MAP) is present at the onset of T1D in a cohort of italian patients outside Sardinia. This raises some concerns regarding the diffusion of MAP and its possible involvement in triggering T1D."


With enough pressure, testing will begin, but for that to happen, some people need to lower their shield and stubbornness.

If it's not MAP then it's not, but if it is and GI, big pharma and some advocacy groups for farmers are purposely trying to keep the lid on this kettle then they are irresponsible towards their patients.
08-01-2012, 09:06 PM   #42
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A review of the controversy from the clinician's perspective on Mycobacterium avium paratuberculosis and the etiology of Crohn's disease article can be found here...

http://www.ccfc.ca/site/c.ajIRK4NLLh.../IBD_Watch.htm

Second last article in the long list of them...for some reason my puter won't open the abstract link.

And MAP is found in soil and water as well, not just directly from cows.
08-01-2012, 09:25 PM   #43
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This thread has sparked my interest. I still remember the first day I felt something was a little off went I went to the bathroom. It was about a month after I took some antibiotics for a tooth.
From day one I had always thought the antibiotics had SOMEthing to do with me getting Crohn's Disease. Maybe people with the Crohn's gene are the ones whos immune systems are in danger of being compromised by something like antibiotics, environmental trigger, etc...
I NEVER got sick when I was younger. Ever since I got Crohn's I get sick now, and when I get sick it's so so bad and takes me forever to get better. I hear this from soooooo many people with Crohn's that they NEVER got sick before they were diagnosed.

I feel like maybe it's possible the antibiotics damaged my immune system somehow. Since my recent success with diet I feel like maybe my body is unable to fight off the bacteria in foods like carbs and sugars because of my damaged immune system. SO if I avoid those foods, I stay symptom free but still high risk. So if I can eliminate the bacteria causing foods and strengthen my immune system, perhaps I can build my body back up and stay symptom free?
I never considered they were wrong about the immune system, this is interesting and worth testing. It's totally possible because they still don't know what causes Crohn's.

I hope I didn't skip over too many of the rude posts and miss the whole point of this thread lol. If anything I think I might talk to my doc and try to strengthen my immune system after success in being symptom free for a year or so from the SCD diet. I'll let you all know what happens. Shoot i'll try anything =P

Going to watch this youtube video now.
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08-01-2012, 09:45 PM   #44
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Wikipedia has an interesting article on autoimmune disease here: http://en.wikipedia.org/wiki/Autoimmune_disease

Crohn's is labeled here as an autoimmune disease, and also lists the antibodies involved. It has links to the sources quoted; I found it a bit more user-friendly than some medical journals. Maybe that's just me, IDK.

Personally in the 20 years since my diagnosis I've never had a doctor tell me Crohn's disease wasn't an autoimmune disease; it may be the one thing they all agreed on.

I've had GI docs and immunoloists from Johns Hopkins, USC Medical, and UCLA-one of my past GI docs has two doctorates from USC-one in GI, the other in research for autoimmune pathology.

Who knows-in 10 years the doctors might change their minds-that's why I wouldn't get hung up on labels.

It certainly doesn't make any difference in how Crohn's has effected my life and health.
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08-01-2012, 09:47 PM   #45
kiny
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Wikipedia has an interesting article on autoimmune disease here: http://en.wikipedia.org/wiki/Autoimmune_disease

Crohn's is labeled here as an autoimmune disease, and also lists the antibodies involved. It has links to the sources quoted; I found it a bit more user-friendly than some medical journals. Maybe that's just me, IDK.

Personally in the 20 years since my diagnosis I've never had a doctor tell me Crohn's disease wasn't an autoimmune disease; it may be the one thing they all agreed on.

I've had GI docs and immunoloists from Johns Hopkins, USC Medical, and UCLA-one of my past GI docs has two doctorates from USC-one in GI, the other in research for autoimmune pathology.

Who knows-in 10 years the doctors might change their minds-that's why I wouldn't get hung up on labels.

It certainly doesn't make any difference in how Crohn's has effected my life and health.
Let me ask you, what does autoimmune mean to you in relationship to crohn.
08-01-2012, 10:17 PM   #46
kiny
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here's some videos that shows you some insight if you don't like reading studies:

http://www.youtube.com/watch?v=HWuoVJP-wcU

http://www.youtube.com/watch?v=vCVt7...feature=relmfu

into the mythical autoimmune theory (which still has no paper to date that ever showed it is that)

let those people from John Hopkins make an account here and explain to us why it is an autoimmune disease, because you're going to need a lot of help trying to explain why and how our own immune system attacks our own intestine for no apparent reason without any studies to back you up, on the other hand I will have no problem whatsoever to show studies that invasive E Coli or MAP are involved

the reason for you why it's easier to link a Wikipedia page (mind you, you skipped the wikipedia page about crohn's disease itself which shows with sources why it's not autoimmune) to show it's autoimmune, is because you won't find 1 study linking the immune response to our own non-pathogenic intestinal flora, not 1
08-01-2012, 10:23 PM   #47
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I cant believe in our society that someone is "holding out" on the true cause and treatment of Crohns. First of all there is just to much money for the person/people
who develops the treatment. Why not the correct treatment instead of the incorrect
treatment?

I never took antibiotics as a kid and I had Crohns as a kid.


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08-01-2012, 10:25 PM   #48
kiny
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I never took antibiotics as a kid and I had Crohns as a kid.
what do you mean by that when you say that
08-01-2012, 11:27 PM   #49
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what do you mean by that when you say that
That would mean they were diagnosed with Crohn's before they ever took any antibiotics.


Also, please, its pronounced "Crohn's." It was named after Dr. Burrill B. Crohn hence why its called "Crohn's" disease. When you say crohn, all you're doing is saying his last name without a capitol letter.
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08-01-2012, 11:34 PM   #50
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Either Crohn's (by itself) or Crohn disease (without the 's) is correct, but you are correct Crabby, Crohn by itself is nothing but the man's name.
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08-01-2012, 11:39 PM   #51
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Also, please, its pronounced "Crohn's." It was named after Dr. Burrill B. Crohn hence why its called "Crohn's" disease. When you say crohn, all you're doing is saying his last name without a capitol letter.
it's called crohn here, I got used to saying crohn without the s, don't know why this matters, I think most people understand what I mean

Last edited by kiny; 08-02-2012 at 02:13 AM.
08-01-2012, 11:41 PM   #52
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I think what Tots meant when he said he never took anti-biotics as a kid - was in response to what Snoflaky said in her post. She stated that she took anti-biotics as a kid and believed it messed up her immune system.

Kiny - I am not able to view any of your youtube posts - not sure if anyone else can.
08-01-2012, 11:42 PM   #53
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Kiny - I am not able to view any of your youtube posts - not sure if anyone else can.
no idea why, can you say which one in my post or quote me somewhere, I linked a few by now
08-01-2012, 11:53 PM   #54
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kiny,

The thing is, why and how our immune system attacks our intestines is because our immune systems are compromised and not functioning properly just as the gene on chromosome 5 isn't functioning properly for us CDers either, therefore based on these facts our disease's nature is to attack the intestines...just like with other autoimmune diseases that cause inflammation like Lupus for example (inflammation that happens to pop up and attack specific organs) but with CD it's the GI tract that it happens to attack...and bacteria(s) as well as hormones also play a huge role in the puzzle of IBD...

You may just be looking for a simple solution for the cause of IBD, and there very well could be, but the facts are there are many pieces to the puzzle when it comes to IBD specifically and there are even differences between UC and CD as far as bacterias and genes that are involved with each of those IBD's.

Triggers are a key part of having an IBD....you can be predisposed to getting an IBD but if it's not triggered, you won't get sick...and there are many suspected environmental triggers for IBD. Smoking is one known trigger specifically for CD, doesn't mean it's every CDers trigger but smoking (including second-hand smoke) does weaken the immune system..that's just one example.

Making one's immune system stronger, won't necessarily make your IBD go away either...researchers have argued back and forth for decades as to whether the immune system becomes over active or under active, because there are so many variables, they decided to bascially call it what it is, "malfunctioning immune system" or "altered immune system", it simply isn't working properly but not necessarily because it's either over or under active.

It's called Crohn's disease, apostrophe included because it's specficially named after Dr. Burrill Crohn, he discovered the disease and therefore it was named after him which proper grammar calls for an apostrophe "s".
08-02-2012, 12:00 AM   #55
2thFairy
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As a medical transcriptionist, the new rule is to drop the 's if the name is followed by the word "disease," i.e., Alzheimer disease or Crohn disease, but if the name is standing alone, the 's is applied, Alzheimer's or Crohn's.
08-02-2012, 12:02 AM   #56
kiny
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kiny,

The thing is, why and how our immune system attacks our intestines is because our immune systems are compromised and not functioning properly just as the gene on chromosome 5 isn't functioning properly for us CDers either, therefore based on these facts our disease's nature is to attack the intestines...just like with other autoimmune diseases that cause inflammation like Lupus for example (inflammation that happens to pop up and attack specific organs) but with CD it's the GI tract that it happens to attack...and bacteria(s) as well as hormones also play a huge role in the puzzle of IBD...
Right, you can't start lumping these things together. That's the whole problem biologists have with GI who hop from assumption to assumption.

A disregulated immune system (which I'm not arguing against, quite the opposite), does not indicate it "attacks our intestine", that's a very loosely indicated term.

Inflammation or ulcers or immune disregulation does not in any way indicate autoimmune disease, it can, but you can't jump to that conclusion without proof, and sadly for the people who say that, there is no proof.

Inflammation, ulcers, immune disregulation is also implicated in infections, and there are proof of that.

If someone doesn't want to make that distinction then they should stop talking about the cause of crohn altogether, because you can't reasonably argue with someone who just lumps two completely different things together.


I can't argue with people who say autoimmune, bacteria, immune system, attacks own intestine, stress, attacks own flora, attacks non-pathogenic bacteria, granuloma reaction unrelated, related bla bla bla, and they all lump these things together and say it doesn't matter and no one knows what crohn is, honestly, jesus christ, they are totally different things, and some people just lump them all together as if the disease has 10 different causalities.

Another reason I don't like autoimmune is because people behind the theory from crohn autoimmune have been doing just that, they are starting to lump 10 different things together under the autoimmune umbrella, at first it was attacking the own intestine, then it was attacking own flora, now they added "environmental factors", basically they have no clue what they are on about, and every site has been perpetuating this idea of autoimmunity for years while biologists have moved on from that theory 10 years ago. It's time we drop assumptions based on 0 evidence, thank God some are doing that instead of regurgitating the same stuff because they are uniformed.

Many GI are utterly uniformed and it's disgraceful.

Saying a disease is autoimmune is easy when you give 10 definitions to it, just like saying "attacks the own intestine" is easy because that can literally mean anything and doing that implicates that you don't have to explain yourself and can defend yourself from behind the autoimmune umbrella, which is now completely meaningless in medicine.
08-02-2012, 12:52 AM   #57
Tenacity
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A quote from:

Paratuberculosis And Crohn's Disease: Got Milk?
by Michael Greger, MD

The consumer movement also needs to fight to make Crohn's a reportable illness.[397] The official FDA stance that pasteurization eliminates MAP is no longer tenable and must be continuously confronted with the British retail milk studies which put an end to the pasteurization debate once and for all. An extensive Freedom of Information Act search must be initiated to unearth suppressed documents. For example, seven years ago Canada's agriculture department produced a food safety risk assessment paper concluding that the paraTB-Crohn's link was something about which to be concerned. The document, however, was stamped "Protected. Not for Distribution" and was as such buried.[398] These are the kinds of documents the consumer movement needs to get a hold of.

In Dr. Hermon-Taylor's view, "There is overwhelming evidence that we are sitting on a public health disaster of tragic proportions."[399] Europe's Scientific Committee on Animal Health and Animal Welfare, however, concluded that the currently available evidence was insufficient to confirm or disprove the theory.[400] This uncertainly should not impede the government from taking concrete steps to prevent further potential human catastrophe. If the British government had acknowledged the precautionary principle, millions of lives may have been saved. A headline in The Times sums up an inquiry into the mishandling of the mad cow affair released last year in Britain: "Lack of Proof Led to Disaster."[401]

The precautionary principal is the basis for most European environmental law and is playing an increasingly important role in health policies worldwide.[402] Basically it states "If one has a reasonable suspicion that something bad might be going to happen, one has an obligation to try to stop it."[403] An ounce of prevention is worth a pound of cure.
08-02-2012, 12:54 AM   #58
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So, I've read most of your posts kiny and I don't get it. Fussing because someone calls Crohn's an autoimmune disorder seems unproductive to me. It's like arguing with someone over whether that shade of green is chartreuse or lime.

For me it distracts from your other more substantive points about MAP and such. Rants are generally unproductive and make one look like a kook. If you want to be taken seriously then you may want to be more moderate in your speech and posts.

And, I'm sorry, but unless you have been to medical school, four years of residency and up to another 8 years of post-doc training to become a gastroenterologist, I suggest that you refrain from sweeping generalizations about how welll or ill informed GI's may be.

The GI's we work with are on the front lines doing research and treating patients. They are not "utterly uninformed". True, the general GI who has an individual practice and sees 500 patients a month, most of whom do not have IBD, is unlikely to be up on all the latest IBD research. To expect that is inappropriate.

But it seems to me that what you really meant was that many GI's don't agree with you. Those are two different things.

I have no problem disagreeing with GI's. Fired a couple of ped GI's who weren't doing a good job treating my son. But I think that GI's as a whole should be treated with respect. They have spent a lot of years learning their profession and I can guarantee you that they know a whole truckload of stuff we don't.
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Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.

Last edited by Patricia56; 08-02-2012 at 12:34 PM.
08-02-2012, 01:06 AM   #59
tots
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Kiny

Maybe the problem with getting your thoughts across here
is that you are "arguing" "your point". (your words not mine) And you don't seem
to be very tolerant of others view point. I don't think it's working for you very well
We come here looking for a place to land safely to find people who understand
What we are going through. We have enough combative behavior
in regards to our disease in our lives.

I also think my previous post you asked about was self explanatory.

Lauren
08-02-2012, 01:12 AM   #60
pb
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The bottom line really is, if they can figure out exactly what the cause(s) are/is, they have a better chance at curing IBD...I personally think that stem cells in some form would be a likely cure for IBD and probably all other autoimmune disease. If stem cells do end up curing IBD, then I would think that would be proof enough that IBD is infact an autoimmune disease.
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