Visit the Microscopic Colitis Foundation Website
a lecture on MC:
http://www.totalcme.com/cmeEngine.asp?c ... Transcript
for us nothing new, also not a word of the (possible) involvement of gluten. Gives a good view how mainstream medicine sees MC
a lecture on MC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Harma, that was rather interesting. There were a couple of things that I noticed.
1. Dr. Loftus mentioned the bismuth trial that Dr. Fine published in 1998, but was quite mocking of Dr. Fine. He said something like "Dr. Fine only published an abstract and never followed up with a full paper. And I hear that he has some sort "on-line" business where he counsels people with MC". There were a few titters from the audience, because his tone of voice was very mocking. He didn't mention anything about the real business, Enterolab. So we already knew that among the mainstream doctors, Dr. Fine isn't regarded very highly, but this really brought it home to me......... It was a really unfair and inaccurate put-down. Go and listen, and see what I mean.
2. The treatment regimen was interesting. Number 1 was to explore whether there might be a relationship to one of class of drugs known to be associated with MC, like SSRIs NSAIDs and PPIs. We all are aware that there is a sizable percentage of MC people that gain remission when they stop taking one of those drugs, so that makes sense.
Then that leaves the percentage of people who aren't in that category. Dr Loftus mentioned Entocort as the most effective drug for resistant cases. Interestingly, he said that anecdotal evidence shows that most patients can't successfully taper off and must be put on a maintenance dose. Thats old news to us, but provides ammunition in dealing with doctors who don't want to prescribe it for more than a few months.
3. Dr Loftus did mention the association of MC and CD, but of course didn't make the connection with non-CD gluten sensitivity. But that's a big start. I'm hopeful that in the near future there will be studies looking at this connection.......
Rosie
1. Dr. Loftus mentioned the bismuth trial that Dr. Fine published in 1998, but was quite mocking of Dr. Fine. He said something like "Dr. Fine only published an abstract and never followed up with a full paper. And I hear that he has some sort "on-line" business where he counsels people with MC". There were a few titters from the audience, because his tone of voice was very mocking. He didn't mention anything about the real business, Enterolab. So we already knew that among the mainstream doctors, Dr. Fine isn't regarded very highly, but this really brought it home to me......... It was a really unfair and inaccurate put-down. Go and listen, and see what I mean.
2. The treatment regimen was interesting. Number 1 was to explore whether there might be a relationship to one of class of drugs known to be associated with MC, like SSRIs NSAIDs and PPIs. We all are aware that there is a sizable percentage of MC people that gain remission when they stop taking one of those drugs, so that makes sense.
Then that leaves the percentage of people who aren't in that category. Dr Loftus mentioned Entocort as the most effective drug for resistant cases. Interestingly, he said that anecdotal evidence shows that most patients can't successfully taper off and must be put on a maintenance dose. Thats old news to us, but provides ammunition in dealing with doctors who don't want to prescribe it for more than a few months.
3. Dr Loftus did mention the association of MC and CD, but of course didn't make the connection with non-CD gluten sensitivity. But that's a big start. I'm hopeful that in the near future there will be studies looking at this connection.......
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Rosie,
Excellent analysis. That's exactly what I got out of it, also. For the most part, it was pretty much what I would expect from a speaker from the Mayo Clinic - a lot of the same old, same old.
The organization of the presentation was good, however, and it included the mention of several drugs that I was unaware had been associated with MC - among others, the bisphosphonates and the stations. Hmmmmm. MC causes osteoporosis, and the favored treatment, (bisphosphonates), causes MC, (for some people) - talk about a vicious cycle.
Something that caught my eye in particular, was some of the drugs in the "intermediate risk" category - monoamine oxidase inhibitors, beta-blockers, an ACE-inhibitor, (lisinopril), and simvastatin. Rasagaline is a monoamine oxidase inhibitor, and during the period when I was taking it, (for a misdiagnosis of Parkinson's disease), I did notice that I had a lot of D on a fairly regular basis, but I blamed it on allergies, (hayfever), and the time of year, (many of us tend to have a flare in the fall of the year). I'm guessing now, that the rasagaline was the cause of that D, but at least I didn't have any other significant symptoms. If I had experienced some of the other symptoms, I would have been more likely to have recognized it as an "MC event".
Since my TIA in May, I've been taking both lisinopril and simvastatin, so I suppose I'm lucky that I no longer have a colon, (it was removed in February), because theoretically, that makes me exempt from the possibility of having an MC reaction, these days. For all I know, though, I might be having D from them, because with an ileostomy, the output is pretty much liquid, anyway, so it's difficult to tell the difference.
As long as I continue to totally avoid gluten, I'm assuming that those drugs shouldn't trigger an MC-type reaction in my small intestine, but who knows? These are probably uncharted waters.
Anyway, I did learn a thing or three from that lecture, so thanks, Harma, for posting about it.
Tex
Excellent analysis. That's exactly what I got out of it, also. For the most part, it was pretty much what I would expect from a speaker from the Mayo Clinic - a lot of the same old, same old.
The organization of the presentation was good, however, and it included the mention of several drugs that I was unaware had been associated with MC - among others, the bisphosphonates and the stations. Hmmmmm. MC causes osteoporosis, and the favored treatment, (bisphosphonates), causes MC, (for some people) - talk about a vicious cycle.
Something that caught my eye in particular, was some of the drugs in the "intermediate risk" category - monoamine oxidase inhibitors, beta-blockers, an ACE-inhibitor, (lisinopril), and simvastatin. Rasagaline is a monoamine oxidase inhibitor, and during the period when I was taking it, (for a misdiagnosis of Parkinson's disease), I did notice that I had a lot of D on a fairly regular basis, but I blamed it on allergies, (hayfever), and the time of year, (many of us tend to have a flare in the fall of the year). I'm guessing now, that the rasagaline was the cause of that D, but at least I didn't have any other significant symptoms. If I had experienced some of the other symptoms, I would have been more likely to have recognized it as an "MC event".
Since my TIA in May, I've been taking both lisinopril and simvastatin, so I suppose I'm lucky that I no longer have a colon, (it was removed in February), because theoretically, that makes me exempt from the possibility of having an MC reaction, these days. For all I know, though, I might be having D from them, because with an ileostomy, the output is pretty much liquid, anyway, so it's difficult to tell the difference.
As long as I continue to totally avoid gluten, I'm assuming that those drugs shouldn't trigger an MC-type reaction in my small intestine, but who knows? These are probably uncharted waters.Anyway, I did learn a thing or three from that lecture, so thanks, Harma, for posting about it.
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.
Do you know what really "frosts" me about the mocking comments made about Dr. Fine? Why should a doctor who is trying to use the web to reach actual patients and help them be subject to ridicule? It's not as though the bismuth treatment is bad......in fact, it is the first drug treatment Dr Loftus recommends. And of course he never mentions that Dr Fine no longer recommends the bismuth treatment, because the gluten-free diet works better.
I think that a big part of this attempt to minimize Dr. Fine is the threat that the web poses to the old way of doing business, where the "big name" doctors and drug companies control the information. Dr Fine is using the web to inform people and offer help that doesn't go through these "gatekeepers".
Rosie
I think that a big part of this attempt to minimize Dr. Fine is the threat that the web poses to the old way of doing business, where the "big name" doctors and drug companies control the information. Dr Fine is using the web to inform people and offer help that doesn't go through these "gatekeepers".
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 been listening to the lecture a second and a third time. What I don't understand is why the connection with gluten and MC is not made. They say in 1/3 of the patients with celiac the colon is in the same way affected as in MC (or MC like they say) and in most cases this recovers after a gluten free diet. Hello, there must be ringing a bell some where, in somebody's head. Maybe this colon damage is also caused by the gluten (and recovery is due to the gluten free diet). And also they refer to 4 till 10% of the MC patients also have celiac. So there is connection in both directions. An MC like colon in 30% of the celiacs and 4% of the MC's have Celiac.
Why does than no one (I mean someone in medical profession) at least come with the suggestion that MC also may be a gluten related disease, except for Dr fine? It is the safest and cheapest therapy they could offer. Or why not, at least, include a gluten free diet in a double blind study.
How can we make the medical world aware of us, the only MC patient group on earth and our experiences with the gluten soy milk and/or yeast free diet. I just wish some researchers would find us and would become interested in our experiences and would write a paper about it.
Why does than no one (I mean someone in medical profession) at least come with the suggestion that MC also may be a gluten related disease, except for Dr fine? It is the safest and cheapest therapy they could offer. Or why not, at least, include a gluten free diet in a double blind study.
How can we make the medical world aware of us, the only MC patient group on earth and our experiences with the gluten soy milk and/or yeast free diet. I just wish some researchers would find us and would become interested in our experiences and would write a paper about it.
Rosie,
Exactly! Dr. Fine is viewed as a radical, by members of the "Good Old Boys" Medical Club, so they recommend the treatment he developed, (out of one side of their mouth), while attempting to smear his reputation, (out of the other side of their mouth). Is that incongruous or what?
That lecture strikes me as a typical, "strictly by the book" offering of the Mayo Clinic. I suspect that anyone who is part of the team there, is pretty much obligated to follow a rigorous set of rules, when they make such a presentation. IOW, each speaker surely speaks for his or her teammates, and for the institution, (whether they like it or not).
That talk offers a glimpse into their convoluted pattern of thinking. They recommend his treatment, (because it meets the rigors of scientific research, so they can't fault it), while going out of their way to display their dislike for him, (because he deliberately violates their "ivory tower" rules and regulations, by reaching out to clients by way of a modern means of doing business, namely the internet).
I wonder why it never occurred to them that by tooting their own horn, (offering such encapsulated lectures on the internet), they are utilizing the same media, for the same business purposes, as Dr. Fine is doing.
Yep, that presentation is designed to promote their image among other medical institutions, and among members of the public in general, and the ultimate goal, of course, is to improve their bottom line. Only minor details distinguish such actions from what Dr. Fine is doing on the web. Well gosh, that suggests that they are a bunch of - (Gasp) - "Hypocrites". Does it not?
One has to wonder about their twisted logic. Or could it be a sign of lack of maturity? They respect Dr. Fine's work, but they hate his "guts", for personal/business reasons.
That suggests that their collective emotions have never matured past the adolescent stage.
Tex
Exactly! Dr. Fine is viewed as a radical, by members of the "Good Old Boys" Medical Club, so they recommend the treatment he developed, (out of one side of their mouth), while attempting to smear his reputation, (out of the other side of their mouth). Is that incongruous or what?
That lecture strikes me as a typical, "strictly by the book" offering of the Mayo Clinic. I suspect that anyone who is part of the team there, is pretty much obligated to follow a rigorous set of rules, when they make such a presentation. IOW, each speaker surely speaks for his or her teammates, and for the institution, (whether they like it or not).
That talk offers a glimpse into their convoluted pattern of thinking. They recommend his treatment, (because it meets the rigors of scientific research, so they can't fault it), while going out of their way to display their dislike for him, (because he deliberately violates their "ivory tower" rules and regulations, by reaching out to clients by way of a modern means of doing business, namely the internet).
I wonder why it never occurred to them that by tooting their own horn, (offering such encapsulated lectures on the internet), they are utilizing the same media, for the same business purposes, as Dr. Fine is doing.
Yep, that presentation is designed to promote their image among other medical institutions, and among members of the public in general, and the ultimate goal, of course, is to improve their bottom line. Only minor details distinguish such actions from what Dr. Fine is doing on the web. Well gosh, that suggests that they are a bunch of - (Gasp) - "Hypocrites". Does it not?One has to wonder about their twisted logic. Or could it be a sign of lack of maturity? They respect Dr. Fine's work, but they hate his "guts", for personal/business reasons.
That suggests that their collective emotions have never matured past the adolescent stage. 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.
They can't make that connection, because they represent the Mayo Clinic, and the Mayo Clinic does not acknowledge non-celiac gluten sensitivity. It's that simple. At the Mayo Clinic, they go by the book, even when the book is wrong, and they know better.Harma wrote:What I don't understand is why the connection with gluten and MC is not made. They say in 1/3 of the patients with celiac the colon is in the same way affected as in MC (or MC like they say) and in most cases this recovers after a gluten free diet. Hello, there must be ringing a bell some where, in somebody's head.
Unless something has been proven by means of a random, double-blind trial, they cannot accept it as fact. Of course, strangely enough, they seem to feel free to assume that the opposite is true, without any proof at all. 
I've always though that seemed rather twisted, but maybe that's just me. 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.
Haven't they ever heard the saying
Rosie
Why is it so hard for mainstream doctors to simply say that the jury is out.......that anecdotal reports suggest that gluten sensitivity may play a role in some cases of MC, but the necessary studies to confirm or refute this haven't been done yet.Absence of proof is not proof of absence........
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
"Of course, strangely enough, they seem to feel free to assume that the opposite is true, without any proof at all. I've always though that seemed rather twisted, but maybe that's just me. ""
that is exactly my point too, what irritates me so much. Of course there is no scientific proof with double blind randomized bla bla trials. Because there are never done!!! So you also can't rule out the possibility. Just if they could see the possible connection for a start. As if all the medication GI's prescribe for MC have such a "scientific" basis like prednisone and other immune suppressors. I am sure if only one patients reacted very well on one type of medication it would be mentioned. As something, very useful to do more research on.
I will stop ranting about it, it can make so angry, such a stupid attitude for such educated people and so extremely well paid.
I've always though that seemed rather twisted, but maybe that's just me. "" that is exactly my point too, what irritates me so much. Of course there is no scientific proof with double blind randomized bla bla trials. Because there are never done!!! So you also can't rule out the possibility. Just if they could see the possible connection for a start. As if all the medication GI's prescribe for MC have such a "scientific" basis like prednisone and other immune suppressors. I am sure if only one patients reacted very well on one type of medication it would be mentioned. As something, very useful to do more research on.
I will stop ranting about it, it can make so angry, such a stupid attitude for such educated people and so extremely well paid.