the link below, is a link to a paper on MC. A lot of it a just the common stuff for the most of us here. But is also contains an overview of current research results. Paper is dated may 2010, so very recent.
It also confirms the general medical view on MC; mainly an older ladies disease and this quote comes straight from the article: "Symptoms of diarrhea and abdominal pain may precede the diagnosis by a number of months. These symptoms are generally mild. With most patients, symptoms resolve spontaneously or with symptomatic therapy".
But also interesting new features, that for example MC maybe not as rare as always thought, figures vary from 1-5 on 100.000 to almost a 100 on 100.000 in that article.
Also this quote I found interesting: An increased number of T cells in the epithelium raise the suspicion that MC is the result of a dysfunctional immunological response to a yet undetermined luminal toxin. This theory is supported by the observation that in some patients an elemental diet results in symptom resolution. What is an elemental diet? Gluten, soy and diary free?
Of course in the whole article, besides the word elemental diet, not a word about gluten.
http://www.medscape.com/viewarticle/717156_2
If you (for what reason) only can read an abstract, I also have a word version of the article, which I can email to anybody who is interested
harma
interesting article on MC
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Harma,
An elemental diet is a diet usually involving a gastric feeding tube, or intravenous feeding, using liquidized nutrients, in a pre-digested form. It is usually composed of amino acids, fats, sugars, vitamins, and minerals. It contains no protein at all, because it is often used to feed people who might be vulnerable to life-threatening food reactions. With no protein, no one can have a severe reaction to it.
That might be a new article, but it is apparently written by people who know very little about the disease. There is no way that this statement, from that article, is correct:
Tex
An elemental diet is a diet usually involving a gastric feeding tube, or intravenous feeding, using liquidized nutrients, in a pre-digested form. It is usually composed of amino acids, fats, sugars, vitamins, and minerals. It contains no protein at all, because it is often used to feed people who might be vulnerable to life-threatening food reactions. With no protein, no one can have a severe reaction to it.
That might be a new article, but it is apparently written by people who know very little about the disease. There is no way that this statement, from that article, is correct:
That's just plainMC is a disease that predominantly affects older patients, with incidence rates anywhere from 5 to 10 times higher in those over 65.
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.
This is hardly groundbreaking. Of course feeding an elemental diet would work, but it's not a viable treatment by any means. People would rather live with D than drink an elemental formula - there would be no indication for parenteral or tube feeding as long as the gut was working, so you would have to drink this stuff. They are ridiculously expensive and unpalatable. If they had gotten symtoms under control with an elemental feeding and then treated it like an elimination diet . . . add back foods one at a time, they could isolate what was causing the problem, but to simply remove everything is absurd.
Mary Beth
Mary Beth
This was basically a review article, so it only reflects what has been published. That being said there were a few interesting points made that show there has been some progress in understanding the disease, even if the importance of diet isn't recognized yet.
For example, in the past MC has been trivialized as being self limited, and responsive to medication. The following quote shows a recognition that for about 30% of MC patients, relapse is a problem.
What I don't understand it that why, with the clear association between CD and MC in a number of scientific papers, the possible role of gluten is not mentioned even in passing. Surely someone would at least mention the possibility! I can only think that it's because of the tunnel vision for drug treatment with doctors.
Rosie
For example, in the past MC has been trivialized as being self limited, and responsive to medication. The following quote shows a recognition that for about 30% of MC patients, relapse is a problem.
And another quote shows the high relapse rate with Entocort, which we certainly already are aware of:There is only limited information about the long-term course and the prognosis of MC. One study followed 81 patients for an average of 37 months. Their initial symptoms were successfully treated with a number of different drugs. Approximately 30% of these patients relapsed with ~70% remaining symptom free.[59] Prospective observational and clinical trials are warranted to specifically address the issue of prognosis and the durability of the response to initial therapy.
Although effective in the short-term, all trials showed a high rate (61–80%) of relapse within ~2 weeks of budesonide cessation. Age <60 was a significant risk factor for relapse.
What I don't understand it that why, with the clear association between CD and MC in a number of scientific papers, the possible role of gluten is not mentioned even in passing. Surely someone would at least mention the possibility! I can only think that it's because of the tunnel vision for drug treatment with doctors.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
I have a hunch that "mysterious trend" has a lot to do with the "good-old-boys" club that dictates policy for the field of gastroenterology, and their refusal to acknowledge the existence of non-celiac gluten-sensitivity. Whenever one of them is in a position to screen articles for publication, They probably do whatever they can, to make sure that it doesn't get published, if it suggests the existence of non-celiac gluten-sensitivity.Rosie wrote:What I don't understand it that why, with the clear association between CD and MC in a number of scientific papers, the possible role of gluten is not mentioned even in passing.
Call me paranoid, but that trend is becoming way too obvious to be explained away as simply a coincidence, IMO.
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 have a theory that the 30% (or whatever the true figure is) that relapse - and due to "self-selection" that would be almost 100% of people on this board - constitute a different disease from those that do not relapse.For example, in the past MC has been trivialized as being self limited, and responsive to medication. The following quote shows a recognition that for about 30% of MC patients, relapse is a problem.
Quote:
There is only limited information about the long-term course and the prognosis of MC. One study followed 81 patients for an average of 37 months. Their initial symptoms were successfully treated with a number of different drugs. Approximately 30% of these patients relapsed with ~70% remaining symptom free.[59] Prospective observational and clinical trials are warranted to specifically address the issue of prognosis and the durability of the response to initial therapy.
Just because the Dx is the same it does not follow that the root cause is the same. Thus, generalizations about the profile of people who get "MC" and the treatment of "MC" (or the recognized sub-sets: Collagenous Colitis, Lymphocytic Colitis, Mastocytic Enterocolitis) are likely to mislead.
All best, Ant
that is the same thing I keep wondering about, to total difference of reality of all the MC patients here and the reality in the medical papers, in so many aspects. Considering it a disease of are generally mild symptoms, in most patients symptoms resolving spontaneously or with symptomatic therapy in almost 70% of the cases, mainly affecting older ladies. I keep on wondering where is that reality in the medical world and science papers based upon? It is so different of the experiences of all the people here. No matter who, young/old, just joined or been here for a while. The reality created in medical papers does so not match with the real world of MC patients.
But all the research they do with groups of patients have to be based on somethings. Could it be that our criteria of being better and remission could be different than medical science uses? A loose stool but no D anymore or a decrease in toilet visit is seen as "recovered". Or maybe patients in these tests and research complain about other physical and mental problems but is simply labelled as "other" or "not MC related, for example as IBS or mental problems. Or are the patients group to small?
But all the research they do with groups of patients have to be based on somethings. Could it be that our criteria of being better and remission could be different than medical science uses? A loose stool but no D anymore or a decrease in toilet visit is seen as "recovered". Or maybe patients in these tests and research complain about other physical and mental problems but is simply labelled as "other" or "not MC related, for example as IBS or mental problems. Or are the patients group to small?
Harma,
Good thinking. Those are very good points, and I suspect that you may well be correct, for this reason:
Doctors/researchers are required to write their reports based on what their peers regard as "sound" scientific principles. That means that they have to base their "remission" judgments on "the rules of the game". Because of the flawed medical description of MC, they cannot recognize non-celiac gluten sensitivity and it's connection with MC, (nor other food sensitivities), (unless they are radicals, willing to stick their necks out, by going against the prevailing medical consensus). They cannot recognize neurological symptoms as being connected with MC, and they cannot "officially" recognize the involvement of organs other than the colon. Pain is not "officially" a part of the description of MC, so many GI docs insist that no pain is involved, and the list goes on and on.
If anyone has any doubts about how severely these "rules" affect medical research reports about MC, consider this:
The huge role of food sensitivities, as a factor in the control of the symptoms of MC, are virtually always "overlooked" in mainstream medical reports, (as Rosie pointed out above). They are totally off the radar. And yet, if a single patient should develop MC from a drug, it is immediately written up as a case report, even though the evidence might be very weak, and circumstantial. And, that drug is subsequently listed in the literature,as a "documented" cause of MC, from that day forward.
Why does that happen? It happens simply because the reporting of adverse effects of drugs, is encouraged. The reporting of events involving non-celiac gluten-sensitivity, on the other hand, is not only not encouraged, but it is strongly discouraged, and most researchers are not willing to risk the career-wrecking "punishments" that can result from ignoring the prevailing mindset of those who decide whether or not their research reports will be published.
The bottom line seems to be that, researchers are straitjacketed by the rules, unless they are willing to be bold enough to break the rules, and risk being scorned, (and stonewalled), by "the powers that be". Because of all that, their definition of remission is vastly different from ours, and the disease itself is vastly different, in their "official" eyes. It's no wonder that we seem to be talking about different diseases.
Tex
Good thinking. Those are very good points, and I suspect that you may well be correct, for this reason:
Doctors/researchers are required to write their reports based on what their peers regard as "sound" scientific principles. That means that they have to base their "remission" judgments on "the rules of the game". Because of the flawed medical description of MC, they cannot recognize non-celiac gluten sensitivity and it's connection with MC, (nor other food sensitivities), (unless they are radicals, willing to stick their necks out, by going against the prevailing medical consensus). They cannot recognize neurological symptoms as being connected with MC, and they cannot "officially" recognize the involvement of organs other than the colon. Pain is not "officially" a part of the description of MC, so many GI docs insist that no pain is involved, and the list goes on and on.
If anyone has any doubts about how severely these "rules" affect medical research reports about MC, consider this:
The huge role of food sensitivities, as a factor in the control of the symptoms of MC, are virtually always "overlooked" in mainstream medical reports, (as Rosie pointed out above). They are totally off the radar. And yet, if a single patient should develop MC from a drug, it is immediately written up as a case report, even though the evidence might be very weak, and circumstantial. And, that drug is subsequently listed in the literature,as a "documented" cause of MC, from that day forward.
Why does that happen? It happens simply because the reporting of adverse effects of drugs, is encouraged. The reporting of events involving non-celiac gluten-sensitivity, on the other hand, is not only not encouraged, but it is strongly discouraged, and most researchers are not willing to risk the career-wrecking "punishments" that can result from ignoring the prevailing mindset of those who decide whether or not their research reports will be published.
The bottom line seems to be that, researchers are straitjacketed by the rules, unless they are willing to be bold enough to break the rules, and risk being scorned, (and stonewalled), by "the powers that be". Because of all that, their definition of remission is vastly different from ours, and the disease itself is vastly different, in their "official" eyes. It's no wonder that we seem to be talking about different diseases.
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.
Ant, interesting point! We all know that when some people develop MC from a drug reaction, in most cases stopping the drug stops the symptoms. Tex has often said that is true "unless the genes that trigger gluten sensitivity are also triggered." That may be the 30% that are represented on this forum, and indeed represent a "different disease".I have a theory that the 30% (or whatever the true figure is) that relapse - and due to "self-selection" that would be almost 100% of people on this board - constitute a different disease from those that do not relapse.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Hmmmmmmmmm. The more I think about this, the more it makes sense. This, of course, brings up George Bernard Shaw's insightful statementRosie wrote:Ant, interesting point! We all know that when some people develop MC from a drug reaction, in most cases stopping the drug stops the symptoms. Tex has often said that is true "unless the genes that trigger gluten sensitivity are also triggered." That may be the 30% that are represented on this forum, and indeed represent a "different disease".
“… the characteristic microbe of a disease might be a symptom instead of a cause.”
I believe that Polly first mentioned this concept, (and this quote), several years ago.
And, either I'm in a state of déjà vu, or I've posted this before, but I reckon I'll post it again, since it seems to be the logical conclusion, here.
So what if microscopic colitis is simply one of the symptoms of non-celiac gluten-sensitivity? We know that microscopic colitis does not cause gluten-sensitivity, (according to Dr. Fine's research findings). But, he also says that, inversely, gluten-sensitivity does not cause MC. It doesn't?
I'm beginning to wonder about the solidity of that proof, because that claim is all that stands in the way of the possibility that for many of us, microscopic colitis is simply a symptom of non-celiac gluten-sensitivity, (and other food sensitivities), which would explain a lot of things, if true. The logic here is that if we remove those food sensitivities from our diet, then the symptom, (MC), goes away. 
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.
interesting thoughts Tex!! If MC is a reaction to medication (in some cases), why could it than also not be a reaction to food ingredients? Only I don't understand why the gluten sensitivity does not cause MC (as Dr Fine says). What causes it than? If MC is just one of the symptoms of non-celiac gluten sensitivity,than gluten does cause the MC (or I am seeing this wrong). By the way we call it non-celiac gluten sensitivity, but of course celiac is also just one of the gluten sensitivity symptoms. Looking it that way, that gluten sensitivity has many symptoms and celiac is just one of them, that would be a major breakthrough in medicine!!
We've seen members here who have been able to achieve remission within a short time by just eliminating gluten. Additional members need only also eliminate casein. And a few more need to eliminate soy. Then there are the rest of us 
.
I'm beginning to suspect that some of the difficult cases, myself included, have mast cell involvement, or mastocytic enterocolitis. As I look over the list of foods which are high in histamines, I find that I have problems with almost all of them. In a sense, I've been "barking up the wrong tree." Now that I'm following a low-histamine diet, my MC is getting better. I still have a long way to go before I can claim remission, but I wonder if some of the more difficult cases are due to excess mast cells.
Below is a link to a list of recommended/non-recommended foods for a low-histamine diet for comparison. Note that even on this list, gluten is allowed.
Of course, I still am GF, though I've never been certain that it's my major intolerance. I never saw any improvement after a month of being GF.
http://www.urticaria.thunderworksinc.co ... tamine.htm
Gloria
.I'm beginning to suspect that some of the difficult cases, myself included, have mast cell involvement, or mastocytic enterocolitis. As I look over the list of foods which are high in histamines, I find that I have problems with almost all of them. In a sense, I've been "barking up the wrong tree." Now that I'm following a low-histamine diet, my MC is getting better. I still have a long way to go before I can claim remission, but I wonder if some of the more difficult cases are due to excess mast cells.
Below is a link to a list of recommended/non-recommended foods for a low-histamine diet for comparison. Note that even on this list, gluten is allowed.
Of course, I still am GF, though I've never been certain that it's my major intolerance. I never saw any improvement after a month of being GF.http://www.urticaria.thunderworksinc.co ... tamine.htm
Gloria
You never know what you can do until you have to do it.
I'm pretty sure they are. I wouldn't be surprised to learn that most of us with some type of allergy issues, also have some degree of mast cell involvement with their GI issues.Gloria wrote:I wonder if some of the more difficult cases are due to excess mast cells.
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 agree with you 100%.Harma wrote:but of course celiac is also just one of the gluten sensitivity symptoms. Looking it that way, that gluten sensitivity has many symptoms and celiac is just one of them, that would be a major breakthrough in medicine!!
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.