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I noticed a few recent posts about symptoms following colonoscopy and other GI tests. I noticed that I enjoyed a remission of my LC symptoms after the colonoscopy and upper GI/barium series - a remission that lasted up to 3 weeks if I recall correctly. My doctor did not offer any possible explanation (but she was terrible anyway). I can only guess that by washing out many accumulated bacteria, that my GI system took a "breather" of sorts until the bad bacteria had enough time to re-establish themselves. Is this hypothesis medically plausible? Do you wash out bacteria with the colonoscopy prep and barium?
Has anyone else here had their MC symptoms improve after colonoscopy and/or barium upper GI series?
Remission after colonoscopy?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Remission after colonoscopy?
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
Hi Z!
My, you certainly do raise interesting/provocative MC issues! Are you in a scientific profession?
Remission after colonoscopy has been noted in the literature. Dr. Fine believes it occurs because the cleanout washes out all of those antibodies to gluten, dairry, etc. temporarily. In fact, at one point he was developing a protocol using Epsom salts to be used on a regular basis to flush out the accumulated antibodies. I haven't heard any more about it, however.
Love,
Polly
My, you certainly do raise interesting/provocative MC issues! Are you in a scientific profession?
Remission after colonoscopy has been noted in the literature. Dr. Fine believes it occurs because the cleanout washes out all of those antibodies to gluten, dairry, etc. temporarily. In fact, at one point he was developing a protocol using Epsom salts to be used on a regular basis to flush out the accumulated antibodies. I haven't heard any more about it, however.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Polly,
I have a Masters in Public Health and work for a prevention-oriented non-profit, so I know how to do the research. I was a medical assistant for an OB/GYN while in grad school. I'm probably a case example of "a little information can be a dangerous thing" or whatever the saying is.
I've been thinking I might change employers someday once I got an accurate diagnosis - and go work for the national organization of whatever disease it is. Unfortunately, there is no national organization in DC for the Potty People!!
If the NIDDK at NIH updates it's MC information and starts studying our disease, maybe I'll go there.
I have a Masters in Public Health and work for a prevention-oriented non-profit, so I know how to do the research. I was a medical assistant for an OB/GYN while in grad school. I'm probably a case example of "a little information can be a dangerous thing" or whatever the saying is.
I've been thinking I might change employers someday once I got an accurate diagnosis - and go work for the national organization of whatever disease it is. Unfortunately, there is no national organization in DC for the Potty People!!
If the NIDDK at NIH updates it's MC information and starts studying our disease, maybe I'll go there.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
Zizzle,
This country desperately needs a national organization for promoting research, and dispensing accurate information about MC and it's treatment. Precious little of the information about this disease that is available on the websites of the big medical institutions, and IBD national support groups, is accurate. Much/most of it was incorrect when it was originally written, and it has never been corrected.
Perhaps you are the person best-suited for pursuing this project. Maybe this is your destiny. You're obviously qualified, based on your background. Setting up a non-profit is simply a matter of doing your homework, setting up a board of directors, and bylaws, and filing some paperwork. If you're interested in doing this, we'll certainly help in any way we can.
http://nonprofit.about.com/od/gettingst ... tartup.htm
http://business-law.freeadvice.com/corp ... ration.htm
Tex
This country desperately needs a national organization for promoting research, and dispensing accurate information about MC and it's treatment. Precious little of the information about this disease that is available on the websites of the big medical institutions, and IBD national support groups, is accurate. Much/most of it was incorrect when it was originally written, and it has never been corrected.
Perhaps you are the person best-suited for pursuing this project. Maybe this is your destiny. You're obviously qualified, based on your background. Setting up a non-profit is simply a matter of doing your homework, setting up a board of directors, and bylaws, and filing some paperwork. If you're interested in doing this, we'll certainly help in any way we can.
http://nonprofit.about.com/od/gettingst ... tartup.htm
http://business-law.freeadvice.com/corp ... ration.htm
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, a national organization may be needed since there currently is no home for us among the crohn's/colitis organizations. But perhaps there should be a home there? Has anyone reached out to those organizations to ask them to increase their research and education on MC specifically, especially since we are starting to learn it may be present in a huge number of "IBS" sufferers? I would hate to start a new organization if there is an existing one willing to make a department/unit for us, especially in these times of few resources and associations often consolidating under association management groups. Or would we be better served having the appearance that we have our own organization, even if it isn't more than a nice website, active forum, and a part-time and volunteer staff? I'm happy to look into this, but would love to know what people's interests are.
For example,
Are you interested in hosting a national or international conference on MC? (I manage my organization's national conference and workshops)
Do you want to be able to advocate with government agencies and/or Congress?
Do you think we could charge membership dues to offset costs?
Do we have access to enough recognized "experts" to help further our cause?
Do folks here have time to sort through the mounds of information in this forum to develop our own patient and provider fact sheets and education materials?
Personally, this would be alot of fun for me. And it's certainly something I'm qualified to do, even if it's just moonlighting.
I agree, a national organization may be needed since there currently is no home for us among the crohn's/colitis organizations. But perhaps there should be a home there? Has anyone reached out to those organizations to ask them to increase their research and education on MC specifically, especially since we are starting to learn it may be present in a huge number of "IBS" sufferers? I would hate to start a new organization if there is an existing one willing to make a department/unit for us, especially in these times of few resources and associations often consolidating under association management groups. Or would we be better served having the appearance that we have our own organization, even if it isn't more than a nice website, active forum, and a part-time and volunteer staff? I'm happy to look into this, but would love to know what people's interests are.
For example,
Are you interested in hosting a national or international conference on MC? (I manage my organization's national conference and workshops)
Do you want to be able to advocate with government agencies and/or Congress?
Do you think we could charge membership dues to offset costs?
Do we have access to enough recognized "experts" to help further our cause?
Do folks here have time to sort through the mounds of information in this forum to develop our own patient and provider fact sheets and education materials?
Personally, this would be alot of fun for me. And it's certainly something I'm qualified to do, even if it's just moonlighting.
I know that Joan has had a few rounds with the CCFA. She finally convinced them that MC was actually an IBD, (prior to that, they argued with her, insisting that it was not an IBD, 
), but that's about as far as it went. The impression I get is that they don't seem interested in changing their current attitude, (that MC is a rare disease with a benign course, and only Crohn's and UC are serious inflammatory bowel diseases that deserve their attention).
I can certainly sort out all the information collected in our database, in any way needed, and I have a hunch that Polly would be willing to verify it's medical accuracy.
Tex
), but that's about as far as it went. The impression I get is that they don't seem interested in changing their current attitude, (that MC is a rare disease with a benign course, and only Crohn's and UC are serious inflammatory bowel diseases that deserve their attention).I can certainly sort out all the information collected in our database, in any way needed, and I have a hunch that Polly would be willing to verify it's medical accuracy.
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.
Hmmm...I searched for organizations working on colitis, and you are right, there is very little going on in the US. If CCFA won't talk to us, going it alone is probably the next step, until someone notices us. I searched for IBS organizations and found one with a semi-official sounding name and website: http://www.ibsgroup.org/ibsassociation. It seems they tried to become a national association and gave up. They are now a support forum like ours.
"The Irritable Bowel Syndrome Association was folded into the Irritable Bowel Syndrome Self Help and Support Group in 2009. We are proud of the accomplishments of the IBS Association during its role as an organization dedicated to helping everyone who suffers from IBS through patient communication, support, treatment, accurate information and education."
I think we should reach out to the founder, Jeffrey D. Roberts, to find out what happened. Perhaps there are some pitfalls we can avoid.
With 600 members of this forum, we could certainly start an association.
"The Irritable Bowel Syndrome Association was folded into the Irritable Bowel Syndrome Self Help and Support Group in 2009. We are proud of the accomplishments of the IBS Association during its role as an organization dedicated to helping everyone who suffers from IBS through patient communication, support, treatment, accurate information and education."
I think we should reach out to the founder, Jeffrey D. Roberts, to find out what happened. Perhaps there are some pitfalls we can avoid.
With 600 members of this forum, we could certainly start an association.
We may indeed have a similar problem, because IBS is also a "nuisance disease with a benign course". Of course, there's some question whether it's actually a disease at all, since it's the default diagnosis when no other reason for the symptoms can be found. I believe that IBS has recently achieved the status of a "branded disease", (if I recall correctly, I believe I read somewhere that there's now a drug specifically targeted to it, though it may still be in the test stage).
Frankly, though, I'm not completely sure that I'm convinced that MC is actually a disease, either. It appears to be a collection of symptoms, (some of which are unique), due to an extremely wide range of causes. Technically, it doesn't even meet the definition of a decent syndrome, since there is no clear-cut, predictable, characteristic condition, or pattern of behavior, that tends to occur under certain circumstances, to uniquely define it. True, the original description of MC meets that definition, but the original description is incorrect. It's too simplistic, and it only applies to a subset of cases.
The original description of this disease, named collagenous colitis, was written by the Swedish pathologist Claes Lindström, in 1976. It was described as a disease that is clinically characterized by chronic watery diarrhoea, and an interior lining of the colon, (the mucosa), that appears normal to the unaided eye, but where certain distinctive characteristic changes are noted, on a cellular level, (histological changes), when a biopsy sample of the mucosa is examined under a microscope.
The problem is, not everyone has diarrhea, let alone watery diarrhea, in fact some patients present with constipation. Also, there are indeed certain distinctive changes noted in the cellular histololgy, but they appear in many variations, in various forms of the disease. Each variation has it's own set of laboratory markers, and believe it or not, there are at least a dozen recognized forms of MC now, and more are being discovered as time goes on. To add to the confusion, the clinical symptoms of each form of the "condition" vary widely, among patients, while patients who have the various forms, tend to share the same clinical symptoms, on a somewhat random basis.
That sounds more like a collection of symptoms, rather than a disease. 
Tex
Frankly, though, I'm not completely sure that I'm convinced that MC is actually a disease, either. It appears to be a collection of symptoms, (some of which are unique), due to an extremely wide range of causes. Technically, it doesn't even meet the definition of a decent syndrome, since there is no clear-cut, predictable, characteristic condition, or pattern of behavior, that tends to occur under certain circumstances, to uniquely define it. True, the original description of MC meets that definition, but the original description is incorrect. It's too simplistic, and it only applies to a subset of cases.
The original description of this disease, named collagenous colitis, was written by the Swedish pathologist Claes Lindström, in 1976. It was described as a disease that is clinically characterized by chronic watery diarrhoea, and an interior lining of the colon, (the mucosa), that appears normal to the unaided eye, but where certain distinctive characteristic changes are noted, on a cellular level, (histological changes), when a biopsy sample of the mucosa is examined under a microscope.
The problem is, not everyone has diarrhea, let alone watery diarrhea, in fact some patients present with constipation. Also, there are indeed certain distinctive changes noted in the cellular histololgy, but they appear in many variations, in various forms of the disease. Each variation has it's own set of laboratory markers, and believe it or not, there are at least a dozen recognized forms of MC now, and more are being discovered as time goes on. To add to the confusion, the clinical symptoms of each form of the "condition" vary widely, among patients, while patients who have the various forms, tend to share the same clinical symptoms, on a somewhat random basis.
That sounds more like a collection of symptoms, rather than a disease. 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.
When I read about the numbers of MC sufferers with other autoimmune diseases, it makes me think of MC as a side effect of the autoimmune disease, or a secondary condition. It seems to be a symptom of something much greater going on in the body.
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
Well, actually, from an autoimmune viewpoint, IMO, probably all of the autoimmune "diseases" are not really diseases at all. They appear to be nothing more than various responses to gluten-sensitive enteropathy and neuropathy. All of them. The symptoms are different, but the basic cause is the same - gluten-sensitive enteropathy and neuropathy, IOW, disease of the digestive tract, and disease of either, (or both), the central nervous system, and/or the enteric nervous system, caused by a sensitivity to gluten. The only disease here, is gluten-sensitivity. Everything else is a "symptom" of it.
Remember what George Bernard Shaw once said?
Tex
Remember what George Bernard Shaw once said?
At least, that's how I see it.“… the characteristic microbe of a disease might be a symptom instead of a cause.”
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.
I've been thinking along the same lines..........that gluten (and other food sensitivities) is the underlying issue. And food sensitivities cannot really be considered autoimmune (AI), because strictly speaking, AI refers to the body attacking its own tissues. In food sensitivities, the body is attacking foreign proteins, not its own tissues. The damage to tissues is done by the antibody/antigen complex. Of course, the related diseases are often AI, like Hashimoto's thyroiditis and diabetes type I.
I guess you can argue that the colitis part of our disease might be autoimmune - if, indeed, the body makes antibodies to its own good bacteria and that is what destroys them. But do we know if this is the case? Or is it other factors (food intolerances, antibiotics, etc.) that actually promote the growth of bad bacteria and kill off the good bacteria?
Tex, you are right about IBS - physicians do not consider anything that is labelled a "syndrome" to be a disease. Otherwise the name would be changed to "irritable bowel disease".
Love,
Polly
I guess you can argue that the colitis part of our disease might be autoimmune - if, indeed, the body makes antibodies to its own good bacteria and that is what destroys them. But do we know if this is the case? Or is it other factors (food intolerances, antibiotics, etc.) that actually promote the growth of bad bacteria and kill off the good bacteria?
Tex, you are right about IBS - physicians do not consider anything that is labelled a "syndrome" to be a disease. Otherwise the name would be changed to "irritable bowel disease".
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
I'll buy your theory. Incidentally, do you think people with MC who achieve remission with diet may live longer and healthier that the general population? Could we be the enlightened few, the ones who were fortunate enough to develop a clear and obvious symptom of our gluten intolerance? I wish I could do a longitudinal study of this crew, to see how many sucumb to heart disease, cancer and other standard causes of mortality, and at what age.
Does anyone here feel like they are aging slower and/or more gracefully due to the changes in their diet? Could this be a fountain of youth?
You've caught me during a rare optimistic mood...
Does anyone here feel like they are aging slower and/or more gracefully due to the changes in their diet? Could this be a fountain of youth?
You've caught me during a rare optimistic mood...
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
Polly,
Great observation! I've often wondered about the MC issue of "the body attacking its own tissues". While it's true that the "good" bacteria in the intestines, (and for that matter, in other places), may be symbiotic, that doesn't make them part of the body, (self). Really, the immune system is attacking the bacteria, (even though they may be our allies - that's called friendly fire, in military terms), and not actually attacking our own tissue. Anyway, because of that characteristic, many authorities do not consider MC to be an autoimmune disease.
That makes me wonder, though, if this situation might also apply to the other "autoimmune issues", such as the ones you mentioned. How do we know that there is not some undetected "foreign invader" present, which is actually the target of the immune system response? I can't help but believe that the immune system has a lot more integrity than is commonly claimed. "Corrupt", is in the eye of the beholder, and we may just not be seeing the correct evidence. We may be completely overlooking the "smoking gun".
I realize that autoimmune responses are usually detected by measuring antibodies to human enzymes, but the big question is, "are we really going about that correctly?" Researchers may be misinterpreting something in the process, to corrupt the findings. Almost all research procedures involves assumptions, and those assumptions can amount to huge accuracy loopholes, in certain circumstances.
Love,
Tex
Great observation! I've often wondered about the MC issue of "the body attacking its own tissues". While it's true that the "good" bacteria in the intestines, (and for that matter, in other places), may be symbiotic, that doesn't make them part of the body, (self). Really, the immune system is attacking the bacteria, (even though they may be our allies - that's called friendly fire, in military terms), and not actually attacking our own tissue. Anyway, because of that characteristic, many authorities do not consider MC to be an autoimmune disease.
That makes me wonder, though, if this situation might also apply to the other "autoimmune issues", such as the ones you mentioned. How do we know that there is not some undetected "foreign invader" present, which is actually the target of the immune system response? I can't help but believe that the immune system has a lot more integrity than is commonly claimed. "Corrupt", is in the eye of the beholder, and we may just not be seeing the correct evidence. We may be completely overlooking the "smoking gun".
I realize that autoimmune responses are usually detected by measuring antibodies to human enzymes, but the big question is, "are we really going about that correctly?" Researchers may be misinterpreting something in the process, to corrupt the findings. Almost all research procedures involves assumptions, and those assumptions can amount to huge accuracy loopholes, in certain circumstances.
Love,
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.
Zizzle,
At one time, I had a bookmark to a research article, (which I've since lost, and haven't been able to relocate), which demonstrated that properly-treated celiacs live longer than the general population. Since then, I've seen a research article which claims the opposite, but as you and I both know, a good researcher can prove virtually anything, and these days, it's getting tougher to find research that goes against the goals of Big Pharma. Selective reporting is the key to "Creative" research results.
I believe that the original article was valid, but I can't figure out the correct key words to locate it, again.
I believe that I posted the URL on the old board, but of course, those data are no longer available on the web.
Tex
At one time, I had a bookmark to a research article, (which I've since lost, and haven't been able to relocate), which demonstrated that properly-treated celiacs live longer than the general population. Since then, I've seen a research article which claims the opposite, but as you and I both know, a good researcher can prove virtually anything, and these days, it's getting tougher to find research that goes against the goals of Big Pharma. Selective reporting is the key to "Creative" research results.
I believe that the original article was valid, but I can't figure out the correct key words to locate it, again.
I believe that I posted the URL on the old board, but of course, those data are no longer available on the web.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.