Hi Tex,
I am curious about the documented research you mention below in a message to Andrew:
"Your gut will have to heal first, and that seems to take around three years for many of us. YMMV, but there is documented research that indicates that 36 months is a reasonable timeframe for an upper limit."
Can you point me to a link to the research?
I'm curious because my gastro told me that 99% of her celiac patients have normal villi on their one year follow up endoscopy. I've also read that the gut lining actually replenishes itself quite quickly if you are not eating triggers of course.
Does this timeframe apply to MC in particular, and does healing the gut in this context also mean the absence of histologic changes on a colonoscopy pathology report (like no lympocytes and no collagenous band)? Basically wondering what 'heal the gut' means in this context.
I don't doubt the experience of people in this group, that's for sure. You all are by far the real experts on MC!
Be well, Celia
Tex, I am curious...
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Tex, I am curious...
I beleive in magic!
Hi Celia,
I was referring to total resolution of symptoms, and total absence of residual histologic abnormalities, (IOW, a "clean" colonoscopy report).
Well, naturally, I can't find the article I'm looking for, since I can't remember the key words that I used to find it in the first place, a couple of years ago. I've got to get to work, but maybe it will come to me over the weekend, and I can locate it. It's probably bookmarked on an older computer, if I can find the time to search through thousands of old boolmarks. I'll try to take a look, when time permits.
In the meantime, here's a report of a project that reached similar conclusions:
http://gut.bmjjournals.com/cgi/content/ ... t/43/5/629
Please remember that MC is not celiac disease. Celiacs generally respond promptly to a GF diet, (according to the standards used in celiac diagnosis).
Over three years after adopting the GF diet, I still showed residual damage to the small intestine, as indicated by a fecal fat absorption test. What the nature of the damage was, I have no idea, but remember that the classic celiac diagnosis proceedure only considers villous atrophy as the "gold standard", as far as intestinal damage is concerned. Any other changes are pretty much ignored.
Yes, the mucosa of the gut is constantantly being replaced, (since it operates in such a harsh environment). In fact, the mucosa of the stomach, for example, replaces itself, (without looking up the exact amount of time, since I'm short on time this morning), every few days. However, rapid replacement of the mucosa does not imply that the gut is healed as soon as the mucosa is renewed. (Just ask anyone with stomach ulcers). Sure, the gut heals quickly, but "quickly" is a relative term. Much of the damage from MC, is submucosal.
Also, remember that we are all different, and there are all sorts of extreme examples for certain individual cases. On the average, though, most of the members of this board did not totally recover in just a few months. They were better, sure, but total recovery takes years, in most cases.
Tex
I was referring to total resolution of symptoms, and total absence of residual histologic abnormalities, (IOW, a "clean" colonoscopy report).
Well, naturally, I can't find the article I'm looking for, since I can't remember the key words that I used to find it in the first place, a couple of years ago. I've got to get to work, but maybe it will come to me over the weekend, and I can locate it. It's probably bookmarked on an older computer, if I can find the time to search through thousands of old boolmarks. I'll try to take a look, when time permits.
In the meantime, here's a report of a project that reached similar conclusions:
http://gut.bmjjournals.com/cgi/content/ ... t/43/5/629
Please remember that MC is not celiac disease. Celiacs generally respond promptly to a GF diet, (according to the standards used in celiac diagnosis).
Over three years after adopting the GF diet, I still showed residual damage to the small intestine, as indicated by a fecal fat absorption test. What the nature of the damage was, I have no idea, but remember that the classic celiac diagnosis proceedure only considers villous atrophy as the "gold standard", as far as intestinal damage is concerned. Any other changes are pretty much ignored.
Yes, the mucosa of the gut is constantantly being replaced, (since it operates in such a harsh environment). In fact, the mucosa of the stomach, for example, replaces itself, (without looking up the exact amount of time, since I'm short on time this morning), every few days. However, rapid replacement of the mucosa does not imply that the gut is healed as soon as the mucosa is renewed. (Just ask anyone with stomach ulcers). Sure, the gut heals quickly, but "quickly" is a relative term. Much of the damage from MC, is submucosal.
Also, remember that we are all different, and there are all sorts of extreme examples for certain individual cases. On the average, though, most of the members of this board did not totally recover in just a few months. They were better, sure, but total recovery takes years, in most cases.
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.
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artteacher
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Hi Tex and Celia,
The lady who lives in Seattle and writes all the gluten free books (her name excapes me at the moment) has said that one way of calculating that she has found accurate (but anecdotal, I'm sure) is one month healing for as many years as you've had problems. It was in the preface of one of her earliest books. She also listed the progressing of foods that usually people are intolerant of. One thing I remember is that citrus was one of the last things not tolerated, as celiac disease progresses, and dairy was one of the first.
Love, Marsha
The lady who lives in Seattle and writes all the gluten free books (her name excapes me at the moment) has said that one way of calculating that she has found accurate (but anecdotal, I'm sure) is one month healing for as many years as you've had problems. It was in the preface of one of her earliest books. She also listed the progressing of foods that usually people are intolerant of. One thing I remember is that citrus was one of the last things not tolerated, as celiac disease progresses, and dairy was one of the first.
Love, Marsha
Tex,
Don't worry about going through all those bookmarks! I just wanted to be sure that I understood what you meant. You've given a good explanation. Thank you.
I realize that MC is not celiac, and that recovery will take a different course. The studies I've seen suggest inflammation in the SI, but not necessarily villous atrophy except in a small number of cases.
The thing about this article (and other research I've read) is that it makes it sounds like MC just disappears after 38 months without any intervention. That doesn't make sense to me.
Thanks again for the explanation. Just wondering what I have to look forward to timewise!
Celia
Don't worry about going through all those bookmarks! I just wanted to be sure that I understood what you meant. You've given a good explanation. Thank you.
I realize that MC is not celiac, and that recovery will take a different course. The studies I've seen suggest inflammation in the SI, but not necessarily villous atrophy except in a small number of cases.
The thing about this article (and other research I've read) is that it makes it sounds like MC just disappears after 38 months without any intervention. That doesn't make sense to me.
Thanks again for the explanation. Just wondering what I have to look forward to timewise!
Celia
I beleive in magic!
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artteacher
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- Posts: 731
- Joined: Wed Aug 24, 2005 11:13 pm
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Hi Celia,
Bette Hagman. You mean I can't give facts based on fuzzy memory? Darn.
Remember, she's referring to celiac disease. Love, Marsha
Bette Hagman. You mean I can't give facts based on fuzzy memory? Darn.
Remember, she's referring to celiac disease. Love, Marsha
Celia,
You wrote:
The problem with that article, (and others), is that the researchers did not address the treatment history of the sample population. It sounds as tough the participants had absolutely no treatment, but realistically, where would they find a sample population such as that? Can you imagine having MC, and not trying some form of treatment, in order to escape the life-altering symptoms?
There is another problem with that article, in this conclusion:
"Progression from lymphocytic colitis to collagenous colitis was not observed".
The statement is undoubtedly true, since most of the subjects were in remission, so that's a no-brainer. How could it progress, when active MC was not even present? However, the statement is misleading, in that it suggests that LC cannot segue to CC, and vice versa, which, of course, is not true. In fact, the two forms, (and the form known simply as microscopic colitis, which presents the clinical markers of both LC and CC) are known to switch from one form to another, and sometimes back again, in some patients. But again, so what? The outward symptoms, and the treatments are the same, so what difference does it make?
They could just as well have pointed out that progression from LC to leprosy was not observed, by similar logic. That statement would also be true, but so what? It would be just as meaningless as the observation that they made.
If, by some rare chance, the population in this study did indeed have a history free of any form of treatment, then one explanation for the conclusions of that research project might be that using meds, or diet, or a combination treatment, might somehow adversely affect the body, so that it becomes impossible for the body to achieve the "default" remission that the articles suggests. I find that explanation to be rather difficult to accept, however.
Personally, I suspect that they studied a typical group of LC patients, and got typical results, based on the fact that roughly 80% of patients with LC will be successful in finding a treatment that will resolve their symptoms, and their remission will continue, as long as they continue their treatment. The 20% that were not in remission in the study, included the number of patients who were unsuccessful in finding a treatment that worked for them, and the patients who were lax with their treatment programs
Regarding your original post: I forgot to acknowledge in my response, that most MC patients will certainly achieve significant overall improvement in their health, within a few months to a year, (some in much less time), however, I still believe that it takes roughly three years of diligence, (using either meds, diet, or a combination), before the gut is healed well enougn that one can qualify for a negative result, on biopsies taken during a followup colonscopy.
Tex
You wrote:
LOL. I thought that would catch your eye. Step to the head of the class, 'cause that's exactly why most of the rest of us don't believe articles such as that, either. Our collective experience proves otherwise. We can achieve remission, but if we stop all treatments, the symptroms virtually always resume, usually in a few weeks, (though there are a few exceptions).The thing about this article (and other research I've read) is that it makes it sounds like MC just disappears after 38 months without any intervention. That doesn't make sense to me.
The problem with that article, (and others), is that the researchers did not address the treatment history of the sample population. It sounds as tough the participants had absolutely no treatment, but realistically, where would they find a sample population such as that? Can you imagine having MC, and not trying some form of treatment, in order to escape the life-altering symptoms?
There is another problem with that article, in this conclusion:
"Progression from lymphocytic colitis to collagenous colitis was not observed".
The statement is undoubtedly true, since most of the subjects were in remission, so that's a no-brainer. How could it progress, when active MC was not even present? However, the statement is misleading, in that it suggests that LC cannot segue to CC, and vice versa, which, of course, is not true. In fact, the two forms, (and the form known simply as microscopic colitis, which presents the clinical markers of both LC and CC) are known to switch from one form to another, and sometimes back again, in some patients. But again, so what? The outward symptoms, and the treatments are the same, so what difference does it make?
They could just as well have pointed out that progression from LC to leprosy was not observed, by similar logic. That statement would also be true, but so what? It would be just as meaningless as the observation that they made.
If, by some rare chance, the population in this study did indeed have a history free of any form of treatment, then one explanation for the conclusions of that research project might be that using meds, or diet, or a combination treatment, might somehow adversely affect the body, so that it becomes impossible for the body to achieve the "default" remission that the articles suggests. I find that explanation to be rather difficult to accept, however.
Personally, I suspect that they studied a typical group of LC patients, and got typical results, based on the fact that roughly 80% of patients with LC will be successful in finding a treatment that will resolve their symptoms, and their remission will continue, as long as they continue their treatment. The 20% that were not in remission in the study, included the number of patients who were unsuccessful in finding a treatment that worked for them, and the patients who were lax with their treatment programs
Regarding your original post: I forgot to acknowledge in my response, that most MC patients will certainly achieve significant overall improvement in their health, within a few months to a year, (some in much less time), however, I still believe that it takes roughly three years of diligence, (using either meds, diet, or a combination), before the gut is healed well enougn that one can qualify for a negative result, on biopsies taken during a followup colonscopy.
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.
Celia,
I don't know whether this has any relevance to your interest expressed in your post as this refers to celiac disease, but here goes anyway.
I've read a couple of studies about the timing of lymphoma diagnoses in terms of years post diagnosis/dietary treatment.
One study based itself on 1 or 2 yrs out, and another on a full 5 yrs out. There were significant dropoffs in the curves of both diagnoses after these years.
Sooo...think there's a rapid progression downward in the percentage of lymphoma cases once a good dietary regimen is begun and continued faithfullly. This dropoff seems to be the more dramatic the closer to the initiation of diet one is. This explains why one with celiac disease needs to not fool around with the diagnosis or a strict elimination of diet without interruption.
As you know, inflammation of tissues seems to be involved in these types of cancers.
Since M.C. has only started being diagnosed a few decades ago, it just could be that there's just not been enough time yet to notice any relationship with certain cancers, either in the colon OR in the small bowel secondary to M.C./gs, but it seems reasonable that this connection may one day be made.
In my case, for example, I did have small bowel damage because I had the anti-tTg, etc. as well as the fecal fat elevated. I'm sure you've read Dr. Fine's website thoroughly by now, so you may remember that he gives a number of reasons why one's fecal fat might be elevated, so it's not totally specific for small bowel damage, whether it be from gluten or something else. However, with the more specific anti-tTg, the fecal fat score is highly corroborative, especially in persons with relevant genes.
Why do I mention these curves for the incidence of lymphoma? Welp, it's because I think when one has enough irritation to cause cancer (along with other factors, perhaps other genes, for example), that just may be considered the ultimately damaged tissue in these otherwise predisposed persons, and it just might give us an idea of how long before the worst of damage is healed on diet. In other words, the time it takes for the most damaged tissues. The rest of us, I would think, would take less time to return to "normal" or "almost normal." At least I think the curves just might be similar, without the extreme of damage resulting in cancer, of course.
I also think that one's fatigue level, provided adequate supplementation of nutrients accompanies a good diet, is a good barometer of the progress one is making toward healing in most cases.
I have also found that observing my stools for fat ( amount of floatation) between laboratory fecal fat testing has paralleled
precisely the amount of fatigue that I have experienced during recovery.
Many of us, if not most or all of us, experience a good bit of nerve damage, including that to the gut, which can hamper it's functioning properly. Unfortunately, nerve damage is less reversible than the damage to our other organ systems, but I believe that a certain amount of it is improved, and may continue to improve long after we think we're all better. There really needs to be more long, long term studies on this, but then, what good would the results really do us -- so what, as Wayne puts it. Ha!
I assume that damage to other digestive organs' endothelium heals as quickly as that of the intestines, small or large, once gf, but I don't know. These supportive organs plus other parts of the digestive tract from mouth to anus all have to heal before our systems will look like they used to. For most of us, it's too late for our gall bladders! Ha!
Anyway, I just wanted to point out that our digestive system is a very dynamic and interactive system, and each puzzle piece has to be working properly for the other pieces to function "normally." I assume that, other than the nervous system damage (mostly from things like B-12 and other B-vits being malasorbed), that most of these other organs heal at about the same rate, but if per chance someone had a weakness in one particular part of the system, that could effect the whole digestive system.
This may be the most important thing, more relevant to your question -- remember that damage is patchy in these diseases, and more so the earlier the biopsies are taken.
Therefore, the further out from the time one has been diagnosed/diet initiated soon after, the MORE patchy the lesions become.
Therefore, the further out in time one gets, even with multiple biopsy samples on each of the endoscopies, the more probable it will be that NO damaged tissues will be biopsied, and thus, an "all-clear" negative biopsy report will result, despite the actual presence of damaged tissue.
Again, at this point, it's another "so-what" that the biopsies missed a few damaged tissues, as we've demonstrated that the diet is working, and we just have to assume in that case that the process of healing will continue until the gut endothelium is entirely like the most recent
negative tissue samples inspected on the normal biopsy report.
Point is that at three years, it just could be that the AVERAGE person being biopsied after three years will not have any positive slides looked at by the pathologist, just from chance alone. That would mean that it might take a little longer, depending on age and other health factors, for there to be a true "all clear" which we'll probably never actually see, or even be aware of as we should be pretty asymptomatic by then, hopefully. Perhaps this is somewhere in the neighborhood of the five year observation on the development of lymphomas at significantly higher rates prior to 5 yrs off the diet. Who knows?
I failed to mention earlier that there is documentation of the fact that the celiacs unresponsive to diet are more prone to the cancers, so this backs up my earlier mentioned ideas a little bit, I hope, but nothing proven, of course.
Anyway, I hope I'm making a little sense here, but if not, that's nothing new for me at the late hours I usually type here.
By the way, Celia, you and Wayne have the most thought-provoking conversations, and you've brought i a few new angles that I don't believe we've talked about before on some of your other threads, so thanks so much. I'll miss you when you are off in Europe!
Yours, Luce
I don't know whether this has any relevance to your interest expressed in your post as this refers to celiac disease, but here goes anyway.
I've read a couple of studies about the timing of lymphoma diagnoses in terms of years post diagnosis/dietary treatment.
One study based itself on 1 or 2 yrs out, and another on a full 5 yrs out. There were significant dropoffs in the curves of both diagnoses after these years.
Sooo...think there's a rapid progression downward in the percentage of lymphoma cases once a good dietary regimen is begun and continued faithfullly. This dropoff seems to be the more dramatic the closer to the initiation of diet one is. This explains why one with celiac disease needs to not fool around with the diagnosis or a strict elimination of diet without interruption.
As you know, inflammation of tissues seems to be involved in these types of cancers.
Since M.C. has only started being diagnosed a few decades ago, it just could be that there's just not been enough time yet to notice any relationship with certain cancers, either in the colon OR in the small bowel secondary to M.C./gs, but it seems reasonable that this connection may one day be made.
In my case, for example, I did have small bowel damage because I had the anti-tTg, etc. as well as the fecal fat elevated. I'm sure you've read Dr. Fine's website thoroughly by now, so you may remember that he gives a number of reasons why one's fecal fat might be elevated, so it's not totally specific for small bowel damage, whether it be from gluten or something else. However, with the more specific anti-tTg, the fecal fat score is highly corroborative, especially in persons with relevant genes.
Why do I mention these curves for the incidence of lymphoma? Welp, it's because I think when one has enough irritation to cause cancer (along with other factors, perhaps other genes, for example), that just may be considered the ultimately damaged tissue in these otherwise predisposed persons, and it just might give us an idea of how long before the worst of damage is healed on diet. In other words, the time it takes for the most damaged tissues. The rest of us, I would think, would take less time to return to "normal" or "almost normal." At least I think the curves just might be similar, without the extreme of damage resulting in cancer, of course.
I also think that one's fatigue level, provided adequate supplementation of nutrients accompanies a good diet, is a good barometer of the progress one is making toward healing in most cases.
I have also found that observing my stools for fat ( amount of floatation) between laboratory fecal fat testing has paralleled
precisely the amount of fatigue that I have experienced during recovery.
Many of us, if not most or all of us, experience a good bit of nerve damage, including that to the gut, which can hamper it's functioning properly. Unfortunately, nerve damage is less reversible than the damage to our other organ systems, but I believe that a certain amount of it is improved, and may continue to improve long after we think we're all better. There really needs to be more long, long term studies on this, but then, what good would the results really do us -- so what, as Wayne puts it. Ha!
I assume that damage to other digestive organs' endothelium heals as quickly as that of the intestines, small or large, once gf, but I don't know. These supportive organs plus other parts of the digestive tract from mouth to anus all have to heal before our systems will look like they used to. For most of us, it's too late for our gall bladders! Ha!
Anyway, I just wanted to point out that our digestive system is a very dynamic and interactive system, and each puzzle piece has to be working properly for the other pieces to function "normally." I assume that, other than the nervous system damage (mostly from things like B-12 and other B-vits being malasorbed), that most of these other organs heal at about the same rate, but if per chance someone had a weakness in one particular part of the system, that could effect the whole digestive system.
This may be the most important thing, more relevant to your question -- remember that damage is patchy in these diseases, and more so the earlier the biopsies are taken.
Therefore, the further out from the time one has been diagnosed/diet initiated soon after, the MORE patchy the lesions become.
Therefore, the further out in time one gets, even with multiple biopsy samples on each of the endoscopies, the more probable it will be that NO damaged tissues will be biopsied, and thus, an "all-clear" negative biopsy report will result, despite the actual presence of damaged tissue.
Again, at this point, it's another "so-what" that the biopsies missed a few damaged tissues, as we've demonstrated that the diet is working, and we just have to assume in that case that the process of healing will continue until the gut endothelium is entirely like the most recent
negative tissue samples inspected on the normal biopsy report.
Point is that at three years, it just could be that the AVERAGE person being biopsied after three years will not have any positive slides looked at by the pathologist, just from chance alone. That would mean that it might take a little longer, depending on age and other health factors, for there to be a true "all clear" which we'll probably never actually see, or even be aware of as we should be pretty asymptomatic by then, hopefully. Perhaps this is somewhere in the neighborhood of the five year observation on the development of lymphomas at significantly higher rates prior to 5 yrs off the diet. Who knows?
I failed to mention earlier that there is documentation of the fact that the celiacs unresponsive to diet are more prone to the cancers, so this backs up my earlier mentioned ideas a little bit, I hope, but nothing proven, of course.
Anyway, I hope I'm making a little sense here, but if not, that's nothing new for me at the late hours I usually type here.
By the way, Celia, you and Wayne have the most thought-provoking conversations, and you've brought i a few new angles that I don't believe we've talked about before on some of your other threads, so thanks so much. I'll miss you when you are off in Europe!
Yours, Luce
Luce,
Your overview is very interesting. The idea of nerve damage to the intestines is a new one to me, I find that intriguing! I see that healing is going to take awhile. A good friend of mine who is highly intuitive has told me seven years to completely heal (for me). I already feel a million times better than I did in 2004 and 2005! I just feel very stuck right now with my expanding list of food intolerances. My list of what I can eat is getting smaller and smaller.
I hope your mother is feeling okay. Please take care of you too!
Be well, Celia
Your overview is very interesting. The idea of nerve damage to the intestines is a new one to me, I find that intriguing! I see that healing is going to take awhile. A good friend of mine who is highly intuitive has told me seven years to completely heal (for me). I already feel a million times better than I did in 2004 and 2005! I just feel very stuck right now with my expanding list of food intolerances. My list of what I can eat is getting smaller and smaller.
I hope your mother is feeling okay. Please take care of you too!
Be well, Celia
I beleive in magic!
Hi again, Celia,
I assume that some nerve damage is all over the body, but that would include the gut, do to the nutrient deficiencies from the malabsorption problem.
Mom's about the same, thanks. We had her off the little tiny dose of med for hallucinations in an effort to not produce any Parkinsons-like symptoms, but today, she even requested a dose, so guess she's back on it now. Doc had suggested we try just one a day, so hope this works ok this time.
Mom did say tonight that her head was hurting from the last fall she had, so hope no delayed thing is going on in her head. She added that it didn't hurt the first couple of days, so perhaps it's just the way that soreness acts sometimes -- delayed.
I really shouldn't try to write anything the least bit technical at night as I'm sooo goofy. Next day, I can't even make sense of what I've written. Ever have that experience?
Take care.
Yours, Luce
I assume that some nerve damage is all over the body, but that would include the gut, do to the nutrient deficiencies from the malabsorption problem.
Mom's about the same, thanks. We had her off the little tiny dose of med for hallucinations in an effort to not produce any Parkinsons-like symptoms, but today, she even requested a dose, so guess she's back on it now. Doc had suggested we try just one a day, so hope this works ok this time.
Mom did say tonight that her head was hurting from the last fall she had, so hope no delayed thing is going on in her head. She added that it didn't hurt the first couple of days, so perhaps it's just the way that soreness acts sometimes -- delayed.
I really shouldn't try to write anything the least bit technical at night as I'm sooo goofy. Next day, I can't even make sense of what I've written. Ever have that experience?
Take care.
Yours, Luce
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MaggieRedwings
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Boy do I wish 38 months was the magic number or anything close to that.
I was diagnosed in April 1990 and I honestly have to say that with watching all diet and going GF there has been improvement but nothing I would consider cured or remission. Based on my Saturday where I had a terrible flare up and was in the loo most of Saturday night, I would welcome a 38 month healing period.
It comes and it goes but lately it seems to have taken the "room for rent" sign out of the window. LOL
Maggie
I was diagnosed in April 1990 and I honestly have to say that with watching all diet and going GF there has been improvement but nothing I would consider cured or remission. Based on my Saturday where I had a terrible flare up and was in the loo most of Saturday night, I would welcome a 38 month healing period.
It comes and it goes but lately it seems to have taken the "room for rent" sign out of the window. LOL
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
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Resident Birder - I live to bird and enjoy life!