This Just Dawned On Me :shock:
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
This Just Dawned On Me :shock:
Hi All,
It just occurred to me (while responding to another thread) that I learned something new from the kidney stone events that I had a couple of months back. I've long suspected this, but I never could find any research data to substantiate it. The fact of the matter is, the excessively loud gurgling noises that most of us are embarrassed about during MC reactions apparently originate in the small intestine, not the colon.
I had that symptom a couple of months ago, as a result of a short MC flare that apparently was triggered by the passage of 2 kidney stones. Apparently the first stone caused a lot of inflammation, and when the second one came along (3 weeks later), the accumulated inflammation exceeded my personal threshold at which an MC reaction is triggered. This was the first true MC reaction that I've had since my colon was removed almost 5 years ago. The reaction only lasted for about a day (thank goodness), but it included the classic watery D and the loud gurgling gut noises. Obviously, the noise did not originate in my colon (since said organ has presumably been resting peacefully in some landfill for almost 5 years now. ). That leaves the small intestine as the prime suspect, by default.
So this is pretty strong epidemiological evidence that MC may be at least as much a small intestinal syndrome as it is colon event. This is also something that I have long maintained, but mainstream medicine continues to ignore it. I'm beginning to wonder if MC might actually be primarily a small intestinal syndrome, and what happens in the colon is only a minor part of it.
There are a number of references cited in the book, that verify that inflammation exists concurrently in both the colon and the small intestine in many/most MC patients. And likewise (since IMO, celiac disease and MC are not actually diseases — they are both simply symptoms of the same disease — namely, gluten sensitivity), celiac disease is also marked by inflammation in the colon in many/most cases. So clearly the evidence is there. But no one has been willing to admit that the original description (and even the name) of microscopic colitis is incorrect. Colitis means inflammation of the colon. But that's not even half the story, because it totally overlooks the inflammation in the small intestine, and often in the stomach, and even the esophagus.
Clearly, the proper name for microscopic colitis would be "microscopic enterocolitis" (or "microscopic bowelitis"), which means inflammation of the mucous membrane of both the small and large intestines, visible only under a microscope. Another candidate for a proper name would be "microscopic coloenteritis".
What are your thoughts on this? And remember, you read it here first.
Tex
It just occurred to me (while responding to another thread) that I learned something new from the kidney stone events that I had a couple of months back. I've long suspected this, but I never could find any research data to substantiate it. The fact of the matter is, the excessively loud gurgling noises that most of us are embarrassed about during MC reactions apparently originate in the small intestine, not the colon.
I had that symptom a couple of months ago, as a result of a short MC flare that apparently was triggered by the passage of 2 kidney stones. Apparently the first stone caused a lot of inflammation, and when the second one came along (3 weeks later), the accumulated inflammation exceeded my personal threshold at which an MC reaction is triggered. This was the first true MC reaction that I've had since my colon was removed almost 5 years ago. The reaction only lasted for about a day (thank goodness), but it included the classic watery D and the loud gurgling gut noises. Obviously, the noise did not originate in my colon (since said organ has presumably been resting peacefully in some landfill for almost 5 years now. ). That leaves the small intestine as the prime suspect, by default.
So this is pretty strong epidemiological evidence that MC may be at least as much a small intestinal syndrome as it is colon event. This is also something that I have long maintained, but mainstream medicine continues to ignore it. I'm beginning to wonder if MC might actually be primarily a small intestinal syndrome, and what happens in the colon is only a minor part of it.
There are a number of references cited in the book, that verify that inflammation exists concurrently in both the colon and the small intestine in many/most MC patients. And likewise (since IMO, celiac disease and MC are not actually diseases — they are both simply symptoms of the same disease — namely, gluten sensitivity), celiac disease is also marked by inflammation in the colon in many/most cases. So clearly the evidence is there. But no one has been willing to admit that the original description (and even the name) of microscopic colitis is incorrect. Colitis means inflammation of the colon. But that's not even half the story, because it totally overlooks the inflammation in the small intestine, and often in the stomach, and even the esophagus.
Clearly, the proper name for microscopic colitis would be "microscopic enterocolitis" (or "microscopic bowelitis"), which means inflammation of the mucous membrane of both the small and large intestines, visible only under a microscope. Another candidate for a proper name would be "microscopic coloenteritis".
What are your thoughts on this? And remember, you read it here first.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
That seems logical. Maybe, what happens in the colon is merely a result of what really goes on in the small intestine?
The MC history will have to be re-written... But, then again I think you are the only one to have written a book on MC
The medicine world seems to be clueless on the subject.
Lilja
That seems logical. Maybe, what happens in the colon is merely a result of what really goes on in the small intestine?
The MC history will have to be re-written... But, then again I think you are the only one to have written a book on MC
The medicine world seems to be clueless on the subject.
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
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- Adélie Penguin
- Posts: 170
- Joined: Thu Aug 28, 2014 3:30 pm
If you are right it is a critical discovery because most specialists deny that any symptoms exist in the small intestine or oeoohagus. And yet how many of us problems in these areas. When gastric biopsies ( gastroscopies ) are done they don't test for MC there. I'm not sure what they do test for tbh.
I have learned from reading Jacalyn Duffin, an MD and medical historian, to consider diseases as ideas rather than things and like all ideas they are subject to change over time due to changes in information and changes in the culture. Unfortunately most practicing physicians do not treat named diseases this way. To most of them the disease definition is carved in stone and you either have it, that thing called MC or some other disease, or you don't. Duffin points out that sometimes a single disease gets broken up into several and likewise several diseases become a single disease. Other diseases disappear entirely over the course of time. Suffering does not disappear, only the name given to it and our understanding of its causes and treatment. IN other words don't believe everything your doctors tell you. They may simply be using bad ideas which lead to bad treatment. Of course sometimes their ideas are good and their treatments successful. The trick is being able to tell the difference.
Jean
Jean
I can't think of any reason offhand why we would need to change our treatment approach. After all, what we're doing works for celiac disease also.Linda wrote:Does that mean we would treat our symptoms any differently?
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Jean,
That logic certainly makes sense, and treating diseases as ideas should fit right in with the concept of doctors "practicing" medicine. And while the medical community does seem willing to make changes as new information becomes available, as a group they seem to be much more willing to add diseases and "create" satellite diseases/ideas (such as pre-this and pre-that), than to correct long-standing mistakes (by removing or updating invalid research data and/or conclusions, for example), and updating obsolete diagnostic criteria (celiac disease is a good example). IMO the celiac diagnostic criteria are completely broken, and they're the main reason why such a small percentage of celiacs are ever diagnosed. That's unacceptable, and yet it just goes on and on, as if nobody in the profession cares.
And it's definitely true that doctors can only perform on a level allowed by the research data available to them. IMO, the most troublesome (and persistent) problems in medicine are not due to doctors performing poorly (per se). I have a hunch that the most damaging poor performance can be traced to misguided reliance on faulty information that comes from corrupt research reports, and guidelines recommended by those who profit greatly from the use of their guidelines (namely, the pharmaceutical industry). Like any machine that relies on the analysis and utilization of vast stores of data, the medical industry needs to be updated and rebooted.
Tex
That logic certainly makes sense, and treating diseases as ideas should fit right in with the concept of doctors "practicing" medicine. And while the medical community does seem willing to make changes as new information becomes available, as a group they seem to be much more willing to add diseases and "create" satellite diseases/ideas (such as pre-this and pre-that), than to correct long-standing mistakes (by removing or updating invalid research data and/or conclusions, for example), and updating obsolete diagnostic criteria (celiac disease is a good example). IMO the celiac diagnostic criteria are completely broken, and they're the main reason why such a small percentage of celiacs are ever diagnosed. That's unacceptable, and yet it just goes on and on, as if nobody in the profession cares.
And it's definitely true that doctors can only perform on a level allowed by the research data available to them. IMO, the most troublesome (and persistent) problems in medicine are not due to doctors performing poorly (per se). I have a hunch that the most damaging poor performance can be traced to misguided reliance on faulty information that comes from corrupt research reports, and guidelines recommended by those who profit greatly from the use of their guidelines (namely, the pharmaceutical industry). Like any machine that relies on the analysis and utilization of vast stores of data, the medical industry needs to be updated and rebooted.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
I agree with you, I have always experienced the gurgling in my small intestine. Several years ago when I saw Dr Pardi, the expert and researcher in MC at Mayo clinic, he heard my gurgling and had asked if I had eaten yet. So the "expert" doctor does not understand that gurgling is one of the symptoms of MC. After seeing 2 GI doctors, I have decided that I know more than them and they are of little help to me. Thanks for the forum and all of the support and information.
I agree with you, I have always experienced the gurgling in my small intestine. Several years ago when I saw Dr Pardi, the expert and researcher in MC at Mayo clinic, he heard my gurgling and had asked if I had eaten yet. So the "expert" doctor does not understand that gurgling is one of the symptoms of MC. After seeing 2 GI doctors, I have decided that I know more than them and they are of little help to me. Thanks for the forum and all of the support and information.
Donna
Diagnosed with CC August 2011
Diagnosed with CC August 2011
Hi Donna,
That's kind of amazing that even Dr. Pardi wouldn't be aware of the connection, but I suppose we shouldn't be surprised, because I've never seen that information in any official medical literature. If it's there, I haven't been able to locate it.
Thank you for your kind words, and thank you for sharing your support and information (and your insight). Without all the helpful member input, this board wouldn't be very helpful.
Tex
That's kind of amazing that even Dr. Pardi wouldn't be aware of the connection, but I suppose we shouldn't be surprised, because I've never seen that information in any official medical literature. If it's there, I haven't been able to locate it.
Thank you for your kind words, and thank you for sharing your support and information (and your insight). Without all the helpful member input, this board wouldn't be very helpful.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
- UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
We read it here first!
I completely agree. Dr Marsh's presentation at the 2013 gluten summit alludes to celiac research being so focused on the villi, the small intestine but the lamina propria is where the lymphocytic infiltration occurs...and doesn't the lamina propria begin in the esophagus (or the mouth?) and end you know where?
I think it's all the same. And I think my GERD was inflammation due to gluten casein allergy. The MC was my breaking point with all of this. I don't think I would have it if I had figured out the food sensitivity answer to my GERD a lot sooner.
The mouth sores, the hemorrhoids, the colitis, I think it's all the same but in celiac the villi flattening is how it expresses, in MC perhaps the colitis or as you say small intestine rumbling.
If anyone is interested, I think you can access the presentation here, there are a ton of thought provoking ideas from this guy, who is being completely ignored by his "peers"
http://theglutensummit.com/michael-marsh-md-dsc-frcp/
Hugs,
Nancy
I completely agree. Dr Marsh's presentation at the 2013 gluten summit alludes to celiac research being so focused on the villi, the small intestine but the lamina propria is where the lymphocytic infiltration occurs...and doesn't the lamina propria begin in the esophagus (or the mouth?) and end you know where?
I think it's all the same. And I think my GERD was inflammation due to gluten casein allergy. The MC was my breaking point with all of this. I don't think I would have it if I had figured out the food sensitivity answer to my GERD a lot sooner.
The mouth sores, the hemorrhoids, the colitis, I think it's all the same but in celiac the villi flattening is how it expresses, in MC perhaps the colitis or as you say small intestine rumbling.
If anyone is interested, I think you can access the presentation here, there are a ton of thought provoking ideas from this guy, who is being completely ignored by his "peers"
http://theglutensummit.com/michael-marsh-md-dsc-frcp/
Hugs,
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
Yes, all mucosal linings are considered to be the combination of the epithelia (the surface layer) and the lamina propria (located just below the epithelia), and this is certainly true for every part of the digestive tract. I agree with Dr. Marsh. Researchers and medical organizations seem to be unable to see the forest for the trees. They worry about the condition of the villi, but that's why it takes years to accumulate enough damage for a doctor to be able to diagnose celiac disease. The lymphocytes are there right from the start. If pathologists counted lymphocytes (and ignored the condition of the villi) they would be able to diagnose celiac disease very early in the disease, thus sparing the patient years of suffering. But they can't do that, because it wouldn't fit the primitive diagnostic criteria that they seem unable to change.Nancy wrote:I completely agree. Dr Marsh's presentation at the 2013 gluten summit alludes to celiac research being so focused on the villi, the small intestine but the lamina propria is where the lymphocytic infiltration occurs...and doesn't that start in the esophagus (or the mouth?) and end you know where?
I'm in the same boat. The handwriting was on the wall for years before my symptoms began. And I would have gladly changed my diet in a heartbeat if I had any idea what the consequences would be if I didn't. But unfortunately I didn't have the foggiest idea what the handwriting on the wall meant, at the time.Nancy wrote:I think it's all the same. And I think my GERD was inflammation due to gluten casein allergy. The MC was my breaking point with all of this. I don't think I would have it if I had figured out the food sensitivity answer to my GERD a lot sooner.
Yes, I've seen that presentation, and as I recall it was very informative. He's in the same situation as Dr. Fine — ignored by his peers, because they consider individuals who choose to think for themselves, as "radicals", and they are aware that if they associate with radicals, they, too, risk being labeled a radical, by the highly-regimented "Good-Ol-Boys Club that decides who is relevant and who is not, in medicine.
Thanks for your insight.
Hugs,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Well the famous Dr. Alessio Fasano said to me back in 2010 that they used to think celiac was confined to the small intestine, but (in the context of MC), they know that's not the case. He fully considered my MC and severe gluten intolerance as ample evidence to conclude I have celiac.
I think we need to move towards Chinese medicine and just get diagnosed with "gut disharmony." I have so many mild diseases and syndromes happening all at once it's hard to keep track!! Candida overgrowth, dysbiosis, lack of digestive enzymes, gene mutations and nutrient deficiencies affecting neurotransmitter levels, etc, etc. Yet I know if I can ever truly fix one of them, I will fix all of them in the process...
I think we need to move towards Chinese medicine and just get diagnosed with "gut disharmony." I have so many mild diseases and syndromes happening all at once it's hard to keep track!! Candida overgrowth, dysbiosis, lack of digestive enzymes, gene mutations and nutrient deficiencies affecting neurotransmitter levels, etc, etc. Yet I know if I can ever truly fix one of them, I will fix all of them in the process...
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Oh, and I recently read and may have posted a research study about IBS where they uncovered that IBS patients secrete too much fluid into the small intestine. That certainly would cause all the gurgling. That's my theory at least.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone