Well, this is certainly interesting. I am assuming that no biopsies were taken, since there is no microscopic report. This in itself is inexcusable in the light of your symptom of chronic D added to the grossly abnormal-looking mucosa. And the doc even commented on the large amount of fluid present - wouldn't you think he'd be looking for any possible cause? Wayne, you should feel cheated with regard to this colonoscopy, and not because there were only 3 of you in the room. LOL! Biopsies most definitely were indicated in this case.
Also, I can't believe that he didn't mention the area of stenosis in the impression. He should have reported on the length (size) of the narrowing. And he didn't warn you that this might some day become a life-threatening situation. The stenosis was already severe enough to have caused generalized colon changes, as noted by the colon looking "somewhat capacious". It would be dilated most likely because of the large volume of food piling up because so little could get thru the narrowing in a timely fashion. This would explain the constipation - when the colon becomes dilated like that, it loses some of its muscular power and doesn't function well.
The tics/spasms could have been acute due to the irritation from the scope, but also may have been chronic attempts by the colon to help force food thru the narrowing.
And I can't believe you weren't given any info or followup for the diverticulitis, which is usually treated with antibiotics and soft diet for a few weeks. And then other dietary manipulations over the long term.
The worst of all, IMHO, is that they had planned to do this procedure without any anesthetic. WHY???? That is barbaric!
My guess would be that in addition to diverticulitis and stenosis, that you also have gluten intolerance. I say this because you had documented small bowel damage, as evidenced by your elevated fecal fat score. The findings on your colonoscopy were limited to the large intestine, and as far as I know, neither diverticulitis nor stenosis can lead to damage of the small intestine. Gluten, in our experience here, is the "damager" of the small intestine.
I guess you can tell that I am not impressed with your original GI. Thank goodness he is long gone. GOOD RIDDANCE!
Thanks for sharing this report. It is an excellent example of incompetence, IMHO. (Sorry to be so blunt, but it makes me ANGRY....GRRRRR).
Love,
Polly
Polly - Here's That Endoscopy Report From 5 1/2 Years Ago
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi All,
Sorry to be so late with this response. I read your posts first thing this morning, but didn't have time to respond, due to a fairly long trip I had to make, to pick up some supplies for my business. Anyway, now that I'm back here goes:
Liz and Shirley,
Thanks. I appreciate your kind words. I'm not sure if honorary membership will be appropriate or not, at this point, but we'll see what develops.
Polly,
Thanks, I really appreciate your opinion on that report. I wasn't sure if I was just being picky, or if I was justified in being upset, because he obviously had trouble getting the instrument through the constricted part, and yet failed to even mention it to me, let alone warn me about future risks.
Actually, immediately after the initial exam, the GI doc sent me to the ER, to get prepped for a series of CT scans, (claiming that I had a large tumor in my colon), and when they couldn't "see" any tumor in the scans, one of the ER room doctors gave me a prescription for some antibiotics, in case I had an infection. He also had a nurse give me some kind of "supplemental cocktail" to drink, and a prescription for some supplements, since I was anemic, at the time. I believe they gave me a shot, too, (possibly B12), but I'm not sure about that.
The antibiotics stopped my diarrhea, but by the time I made my followup visit to the GI doc, the diarrhea was back, so he gave me a second course of antibiotics, just in case the first round had not been enough to do the job. The results were the same--the antibiotics stopped the diarrhea almost immediately, but after I finished taking them, the diarrhea came right back. This was about six to eight weeks before I had the colonoscopy. In between, I had some other tests.
When he thought I had a tumor, he suggested that I eat Cream of Wheat, but after they couldn't find any cancer, he told me to eat whatever I wanted.
Actually, he asked me if I wanted an anesthetic, and I told him no. I had already been through a sigmoidoscopy by then, without an anesthetic, so I didn't see any reason why it would be necessary for the colonoscopy.
Yes, the fecal fat score bothers me some. If it weren't for that, I would say that a gluten challenge is definitely in order. Things being what they are, though, I'm having a tough time deciding whether or not to try it. I would certainly hate to be that sick again, and to have to go through the recovery period again. On the other hand, if I were to pass the test, it would make life a lot easier.
I was hoping that you would make it easy, by making the decision for me, as to whether or not to do a gluten challenge. LOL. I can certainly understand, though, that you might prefer to not be involved with that issue.
Love,
Wayne
Sorry to be so late with this response. I read your posts first thing this morning, but didn't have time to respond, due to a fairly long trip I had to make, to pick up some supplies for my business. Anyway, now that I'm back here goes:
Liz and Shirley,
Thanks. I appreciate your kind words. I'm not sure if honorary membership will be appropriate or not, at this point, but we'll see what develops.
Polly,
Thanks, I really appreciate your opinion on that report. I wasn't sure if I was just being picky, or if I was justified in being upset, because he obviously had trouble getting the instrument through the constricted part, and yet failed to even mention it to me, let alone warn me about future risks.
Actually, immediately after the initial exam, the GI doc sent me to the ER, to get prepped for a series of CT scans, (claiming that I had a large tumor in my colon), and when they couldn't "see" any tumor in the scans, one of the ER room doctors gave me a prescription for some antibiotics, in case I had an infection. He also had a nurse give me some kind of "supplemental cocktail" to drink, and a prescription for some supplements, since I was anemic, at the time. I believe they gave me a shot, too, (possibly B12), but I'm not sure about that.
The antibiotics stopped my diarrhea, but by the time I made my followup visit to the GI doc, the diarrhea was back, so he gave me a second course of antibiotics, just in case the first round had not been enough to do the job. The results were the same--the antibiotics stopped the diarrhea almost immediately, but after I finished taking them, the diarrhea came right back. This was about six to eight weeks before I had the colonoscopy. In between, I had some other tests.
When he thought I had a tumor, he suggested that I eat Cream of Wheat, but after they couldn't find any cancer, he told me to eat whatever I wanted.
Actually, he asked me if I wanted an anesthetic, and I told him no. I had already been through a sigmoidoscopy by then, without an anesthetic, so I didn't see any reason why it would be necessary for the colonoscopy.
Yes, the fecal fat score bothers me some. If it weren't for that, I would say that a gluten challenge is definitely in order. Things being what they are, though, I'm having a tough time deciding whether or not to try it. I would certainly hate to be that sick again, and to have to go through the recovery period again. On the other hand, if I were to pass the test, it would make life a lot easier.
I was hoping that you would make it easy, by making the decision for me, as to whether or not to do a gluten challenge. LOL. I can certainly understand, though, that you might prefer to not be involved with that issue.
Love,
Wayne
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 just my opinion now but......
Wayne, as for the GF trial, you have said in the past that you feel better while staying away from the gluton. Your artheritis is gone, the nitnoids, aches and pains have all but dissapeared. Good reason to continue, IMHO.
Also, regarding your 3 day trial before you ended up in the hospital: did reintroducing those foods contribute to the blockage because they were a "new" food? Would the problem have presented itself anyway? Was anything proven during the trial? Just some questions.
Good luck in whatever you choose to do. I realize that by eating healthier, I FEEL healthier. Although my diet, or "change of lifestyle" which is in the long-term category keeps me away from most gluton, I am eating some along the way. The amount however, is small.
I find that eliminating the bad fats and carbs and eating "healthy" foods have enabled me to truly feel better if not down-right GOOD in a very short period of time! Some of the aches and pains are gone, my head is clearer and I have tons more energy! It also helps the frame of mind and happier attitude because I am playing an active part in my health!
OK, time for me to get off of my soapbox and get to work! Knowing you, you will make the best decision for YOU!
All my love,
Mars
Wayne, as for the GF trial, you have said in the past that you feel better while staying away from the gluton. Your artheritis is gone, the nitnoids, aches and pains have all but dissapeared. Good reason to continue, IMHO.
Also, regarding your 3 day trial before you ended up in the hospital: did reintroducing those foods contribute to the blockage because they were a "new" food? Would the problem have presented itself anyway? Was anything proven during the trial? Just some questions.
Good luck in whatever you choose to do. I realize that by eating healthier, I FEEL healthier. Although my diet, or "change of lifestyle" which is in the long-term category keeps me away from most gluton, I am eating some along the way. The amount however, is small.
I find that eliminating the bad fats and carbs and eating "healthy" foods have enabled me to truly feel better if not down-right GOOD in a very short period of time! Some of the aches and pains are gone, my head is clearer and I have tons more energy! It also helps the frame of mind and happier attitude because I am playing an active part in my health!
OK, time for me to get off of my soapbox and get to work! Knowing you, you will make the best decision for YOU!
All my love,
Mars
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
Wayne,
From reading all of this, and with my limited understanding, I'd say you have enough evidence that you have MC and gluten intolerance. There were reasons why you believed you had MC, are they still valid?
However, it is not absolutely proven that you have it, and knowing you, you have to know for sure. Therefore, I bet you will probably do the gluten challenge. If it was me, I'd start with your last discovered intolerances and work backwards:
1. citrus
2. dairy
3. corn
4. gluten
If you react to any of these, I think I'd stop there, especially corn.
Polly's results from her colonoscopy may prove helpful to you. If she still shows damage (I hope not) it might indicate that you would still benefit from another one, of course with microscopic biopsies. Did they do any biopsies during your surgery?
Let us know what you decide. Love, Jean
From reading all of this, and with my limited understanding, I'd say you have enough evidence that you have MC and gluten intolerance. There were reasons why you believed you had MC, are they still valid?
However, it is not absolutely proven that you have it, and knowing you, you have to know for sure. Therefore, I bet you will probably do the gluten challenge. If it was me, I'd start with your last discovered intolerances and work backwards:
1. citrus
2. dairy
3. corn
4. gluten
If you react to any of these, I think I'd stop there, especially corn.
Polly's results from her colonoscopy may prove helpful to you. If she still shows damage (I hope not) it might indicate that you would still benefit from another one, of course with microscopic biopsies. Did they do any biopsies during your surgery?
Let us know what you decide. Love, Jean
Be kind to everyone, because you never know what battles they are fighting.
Mornin' Wayne!
Nope, I can't make the decision for you. LOL! I think Mars and Jean have brought up some excellent points.
If you are going to do a trial, I would advise waiting until after your reattachment surgery. You don't want to risk setting into motion months of D that might interfere with that.
I like Jean's suggestion for how to approach a trial. It may be that you would react fairly quickly, which might minimize the length of any flare.
It sounds as if you had some malnutrition back at the time of that colonoscopy, based upon the anemia and them treating you with supplements and possibly B-12. Is that when you had the high fecal fat too? To what do you attribute the damage to your small intestine if it wasn't gluten? I know you have the genes for gluten intolerance, but, of course, that doesn't mean that you HAVE gluten intolerance.
It's true that the only way to know for sure is to do a challenge.
Let us know what you decide. BTW, didn't other relatives have GI problems (or am I imagining that)?
Love,
Polly
Nope, I can't make the decision for you. LOL! I think Mars and Jean have brought up some excellent points.
If you are going to do a trial, I would advise waiting until after your reattachment surgery. You don't want to risk setting into motion months of D that might interfere with that.
I like Jean's suggestion for how to approach a trial. It may be that you would react fairly quickly, which might minimize the length of any flare.
It sounds as if you had some malnutrition back at the time of that colonoscopy, based upon the anemia and them treating you with supplements and possibly B-12. Is that when you had the high fecal fat too? To what do you attribute the damage to your small intestine if it wasn't gluten? I know you have the genes for gluten intolerance, but, of course, that doesn't mean that you HAVE gluten intolerance.
It's true that the only way to know for sure is to do a challenge.
Let us know what you decide. BTW, didn't other relatives have GI problems (or am I imagining that)?
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Mars,
Excellent observations, and I can't argue with anything you said. The only question in my mind about the symptoms that the GF diet eliminated, is the possibility that those symptoms might have been caused by diverticulitis, rather than gluten intolerance. In order to keep from regularly getting sick, I had to cut out all foods that were somewhat bulky, (that is, contained significant amounts of fiber), and sugars, and anything else that contributed significantly to fermentation, (which, of course, would also include lactose). It was a catch 22 situation, because the preferred treatment for diverticulosis is fiber, but the constriction preempted the possibility of ingesting any significant amounts of fiber.
IOW, maybe it's possible that diverticulitis also causes leaky gut syndrome, which could have caused the arthritis, and other symptoms. A lof of GI diseases mimic each other, to some extent, as far as symptoms are concerned. For example, when I was reacting regularly, I had enough of the symptoms of fibromyalgia and SLE, to have been diagnosed with both those conditions. I think that most of us here, have been in that situation.
Regarding the 3-day diet trial that I did, you asked some very good questions. (Tough questions, actually). I think that the trial certainly appears to have initiated the beginning of the end, so to speak, because it filled my gut with more volume than the constriction would allow to pass, in a timely manner, and even though I slowed way down on eating, to give it time to clear out, it just couldn't handle the backlog. Some of the things that I added, such as popcorn, were just too bulky.
Probably, I would eventually have had to do something sugerywise anyway, but the trial certainly seems to have brought the situation to a head.
What did it prove? Well, I think I proved that I'm not really sensitive to corn, for example. It's the fiber and the sugar in corn, that apparently caused the problems. As far as I can tell, that's really all that I was able to conclude, from the trial. The jury is still out on dairy products, citrus, and gluten.
You're right about the healthy diet. I think that even if I were to prove to myself that I'm not gluten intolerant, I wouldn't go back to regularly eating bread, and a lot of things based on wheat flour. It would be nice, though, to not have to worry about trace amounts.
You know, that diet is really working for you. You sound so upbeat that it's infectious. Now I'm not sure that I'm even interested in doing a gluten challenge. Thanks for the pep talk.
Love,
Wayne
Excellent observations, and I can't argue with anything you said. The only question in my mind about the symptoms that the GF diet eliminated, is the possibility that those symptoms might have been caused by diverticulitis, rather than gluten intolerance. In order to keep from regularly getting sick, I had to cut out all foods that were somewhat bulky, (that is, contained significant amounts of fiber), and sugars, and anything else that contributed significantly to fermentation, (which, of course, would also include lactose). It was a catch 22 situation, because the preferred treatment for diverticulosis is fiber, but the constriction preempted the possibility of ingesting any significant amounts of fiber.
IOW, maybe it's possible that diverticulitis also causes leaky gut syndrome, which could have caused the arthritis, and other symptoms. A lof of GI diseases mimic each other, to some extent, as far as symptoms are concerned. For example, when I was reacting regularly, I had enough of the symptoms of fibromyalgia and SLE, to have been diagnosed with both those conditions. I think that most of us here, have been in that situation.
Regarding the 3-day diet trial that I did, you asked some very good questions. (Tough questions, actually). I think that the trial certainly appears to have initiated the beginning of the end, so to speak, because it filled my gut with more volume than the constriction would allow to pass, in a timely manner, and even though I slowed way down on eating, to give it time to clear out, it just couldn't handle the backlog. Some of the things that I added, such as popcorn, were just too bulky.
Probably, I would eventually have had to do something sugerywise anyway, but the trial certainly seems to have brought the situation to a head.
What did it prove? Well, I think I proved that I'm not really sensitive to corn, for example. It's the fiber and the sugar in corn, that apparently caused the problems. As far as I can tell, that's really all that I was able to conclude, from the trial. The jury is still out on dairy products, citrus, and gluten.
You're right about the healthy diet. I think that even if I were to prove to myself that I'm not gluten intolerant, I wouldn't go back to regularly eating bread, and a lot of things based on wheat flour. It would be nice, though, to not have to worry about trace amounts.
You know, that diet is really working for you. You sound so upbeat that it's infectious. Now I'm not sure that I'm even interested in doing a gluten challenge. Thanks for the pep talk.
Love,
Wayne
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Jean,
As I mentioned in my post above, to Mars, the question in my mind is whether or not diverticulitis could cause those symptoms.
I've been trying corn, in the form of tortilla chips, and I seem to tolerate it ok. I selected tortilla chips, because tortillas are made from masa, and most of the pericarp, (outer shell), is removed from the corn before it is wet-milled to make masa. I suspect that Fritos, for example, are made from whole kernels, but I'm just guessing at that. Fritos are made by an extrusion process, and it's difficult for me to believe that Frito-Lay would go to the expense of removing the pericarp, and discarding it, if they didn't have to, (and they shouldn't have to, to make Fritos). I could be wrong about Fritos, though.
I'm trying to avoid the pericarp on corn, because it may not be desirable for long-term use with diverticulosis. Popcorn hulls, for example, are verboten, but that might be the case just because of their size, shape, and sharp edges.
I think I'll try dairy and citrus, and see what happens. I tried some GF rice-based cereal a week or so ago, (from Arrowhead Mills), pre-sweetened with natural fruit sugars, as I recall, and using coconut milk. It really sucked, primarily because of the coconut milk. I think I'll get some cow's milk and try it. I might even try heavy cream, instead, since that has a minimum amount of lactose.
Yes, I'm anxious to see that pathology report from Polly's exam. It should prove to be interesting. As for the biopsies taken during my surgery, I posted my pathology report a couple of weeks back, probably while you were out sick. Here is that thread:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=2556
The bottom line is, I'm not in a big hurry to rush into a gluten challenge, I'm just considering it.
Love,
Wayne
As I mentioned in my post above, to Mars, the question in my mind is whether or not diverticulitis could cause those symptoms.
I've been trying corn, in the form of tortilla chips, and I seem to tolerate it ok. I selected tortilla chips, because tortillas are made from masa, and most of the pericarp, (outer shell), is removed from the corn before it is wet-milled to make masa. I suspect that Fritos, for example, are made from whole kernels, but I'm just guessing at that. Fritos are made by an extrusion process, and it's difficult for me to believe that Frito-Lay would go to the expense of removing the pericarp, and discarding it, if they didn't have to, (and they shouldn't have to, to make Fritos). I could be wrong about Fritos, though.
I'm trying to avoid the pericarp on corn, because it may not be desirable for long-term use with diverticulosis. Popcorn hulls, for example, are verboten, but that might be the case just because of their size, shape, and sharp edges.
I think I'll try dairy and citrus, and see what happens. I tried some GF rice-based cereal a week or so ago, (from Arrowhead Mills), pre-sweetened with natural fruit sugars, as I recall, and using coconut milk. It really sucked, primarily because of the coconut milk. I think I'll get some cow's milk and try it. I might even try heavy cream, instead, since that has a minimum amount of lactose.
Yes, I'm anxious to see that pathology report from Polly's exam. It should prove to be interesting. As for the biopsies taken during my surgery, I posted my pathology report a couple of weeks back, probably while you were out sick. Here is that thread:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=2556
The bottom line is, I'm not in a big hurry to rush into a gluten challenge, I'm just considering it.
Love,
Wayne
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 who ever said we should always ask for our reports, everything right down to the blood work done. With my moving around these last couple of years I have failed to do so, but it was interesting to me a while back while going through my medical reports from when I first started to see a GI for having unexplained D, I found that in his original report he wrote that he was looking for evidence of CC, but then he did not take any biopsies at the time! And he stated that my colon and so forth looked unremarkable! Soooooo, about 5 yrs later I got really sick, and then of course he did take biopsies and so forth and the rest is history now. But with the other doctors that I have seen since, well, it just seems that they do not feel that anything is a big deal. And so, I am wondering if I should get all the reports from the last tests back, as he told me things that I really didn't understand either, but at the time, I just wanted to leave and crawl into a hole somewhere.
If anything you have given us all something to think about with our own individual problems. Some of us have top notch GI's that stay on top of things and so forth, but for the ones who have had "CRAPPY GI's", we should stay on top of it ourselves. As they tend to downplay everything they find when they cannot explain it. It doesn't mean the problem goes away, as was your case, it showed up a few years down the way and in not the way you might have liked either!
If the doctor had been thinking of what was best for you, then he would have had you down for a re-check or something along the way, instead of dismissing you without telling you all his findings. I for one am glad you are not seeing this person anymore either.
Gentle hugs
Wendy
If anything you have given us all something to think about with our own individual problems. Some of us have top notch GI's that stay on top of things and so forth, but for the ones who have had "CRAPPY GI's", we should stay on top of it ourselves. As they tend to downplay everything they find when they cannot explain it. It doesn't mean the problem goes away, as was your case, it showed up a few years down the way and in not the way you might have liked either!
If the doctor had been thinking of what was best for you, then he would have had you down for a re-check or something along the way, instead of dismissing you without telling you all his findings. I for one am glad you are not seeing this person anymore either.
Gentle hugs
Wendy
Hi Polly,
I'm inclined to agree with you. I never thught about it before, but explosive D with an ostomy bag, might be even less fun than the regular version. Those things have a rather limited capacity, and you don't really have any control over BMs. If an eruption occurred while you were changing bags, for example, you would literally "paint the walls", due to the location of the stoma. LOL. I would hate to have to contend with that for several months--not a good situation.
I also agree with you on trying other triggers, rather than gluten. It's certainly possible that these other foods were problems simply because of the diverticulosis/diverticulitis, corn because of its fiber, and dairy because of the fermentation potential. I don't know what the problem might have been with citrus. Maybe it just got caught in the crossfire. As mentioned above, I've already tried corn, and found it to be ok, so I might as well try dairy and citrus.
Yes, I apparently had malabsorption problems back in those days. The fecal fat test was done at Enterolab, last May, (2005), which was about 4 years and 11 months, after the colonoscopy, and 3 years and 9 months, after I started the GF diet.
I really don't know what else to attribute the damage to, other than gluten. There's one other possibility here. I might just be a plain old celiac. There's even a possibility that I was asymptomatic for many years, and that could have contributed to the neoplasm problem in my sigmoid colon. Then, when that got out of hand, it started causing the symptoms, that began to show up.
Actually, I'm not so sure that there is such a clear distinction between celiacs and MCers, anyway. Has anyone ever done any biopsies of the colon on a celiac? They just might show the markers of MC. Has anyone ever done any biopsies of the duodenum on an MCer? They just might show damage to the villi.
Yes, I had relatives with GI problems. My father bled to death in a hospital, from angiodysplasia, (massive colonic bleeding), and apparently, so did an uncle, whom the doctors misdiagnosed as a victim of ulsers.
My mother had about half her colon removed, because it became hard and flattened, causing chronic constipation. I don't know what that type of condition is called, or even if it has a name.
Anyway, the bottom line is, any gluten challenge is officially on indefinite hold, for the forseeable future.
Love,
Wayne
I'm inclined to agree with you. I never thught about it before, but explosive D with an ostomy bag, might be even less fun than the regular version. Those things have a rather limited capacity, and you don't really have any control over BMs. If an eruption occurred while you were changing bags, for example, you would literally "paint the walls", due to the location of the stoma. LOL. I would hate to have to contend with that for several months--not a good situation.
I also agree with you on trying other triggers, rather than gluten. It's certainly possible that these other foods were problems simply because of the diverticulosis/diverticulitis, corn because of its fiber, and dairy because of the fermentation potential. I don't know what the problem might have been with citrus. Maybe it just got caught in the crossfire. As mentioned above, I've already tried corn, and found it to be ok, so I might as well try dairy and citrus.
Yes, I apparently had malabsorption problems back in those days. The fecal fat test was done at Enterolab, last May, (2005), which was about 4 years and 11 months, after the colonoscopy, and 3 years and 9 months, after I started the GF diet.
I really don't know what else to attribute the damage to, other than gluten. There's one other possibility here. I might just be a plain old celiac. There's even a possibility that I was asymptomatic for many years, and that could have contributed to the neoplasm problem in my sigmoid colon. Then, when that got out of hand, it started causing the symptoms, that began to show up.
Actually, I'm not so sure that there is such a clear distinction between celiacs and MCers, anyway. Has anyone ever done any biopsies of the colon on a celiac? They just might show the markers of MC. Has anyone ever done any biopsies of the duodenum on an MCer? They just might show damage to the villi.
Yes, I had relatives with GI problems. My father bled to death in a hospital, from angiodysplasia, (massive colonic bleeding), and apparently, so did an uncle, whom the doctors misdiagnosed as a victim of ulsers.
My mother had about half her colon removed, because it became hard and flattened, causing chronic constipation. I don't know what that type of condition is called, or even if it has a name.
Anyway, the bottom line is, any gluten challenge is officially on indefinite hold, for the forseeable future.
Love,
Wayne
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.
Wendy,
For most of my life, I just assumed that doctors told us everything we needed to hear, and I never asked for a copy of a report. Now that I know that they, (some of them, anyway), only tell us what they feel like telling us at the moment, I will never have another major test, without getting a copy of the report, so that I can review it myself.
I never dreamed that there could be such a huge information gap, until I started reading these things. They're better than the stuff you see on the soap operas. LOL.
Hugs,
Wayne
For most of my life, I just assumed that doctors told us everything we needed to hear, and I never asked for a copy of a report. Now that I know that they, (some of them, anyway), only tell us what they feel like telling us at the moment, I will never have another major test, without getting a copy of the report, so that I can review it myself.
I never dreamed that there could be such a huge information gap, until I started reading these things. They're better than the stuff you see on the soap operas. LOL.
Hugs,
Wayne
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.
Wayne,
Did you have any health problems as a child? Seems to me like kids sometimes show signs of celiacs which are undiagnosed. They "grow out of it" and then symptoms reappear later in life. My Mom is starting to think she experienced this. Food for thought.
I'm really interested in what you figure out. Keep us posted!
Love, Jean
Did you have any health problems as a child? Seems to me like kids sometimes show signs of celiacs which are undiagnosed. They "grow out of it" and then symptoms reappear later in life. My Mom is starting to think she experienced this. Food for thought.
I'm really interested in what you figure out. Keep us posted!
Love, Jean
Be kind to everyone, because you never know what battles they are fighting.
Wayne,
You know, you have done an amazing job as "self-diagnosed" - especially in view of the total lack of credible info and support you have had from the medical community. You are a detective extraordinare!
I am truly in awe of the conclusions you were able to draw, when many of your problems were not ones experienced by most here - the constipation or slow bowel motility, the fermentation issue, etc.
As far as your wondering about diverticulosis causing leaky gut, you never know. At least as far as I know, there is no connection known at the present time , but look how much we have learned here from our own MC experiences that isn't to be found in any medical reference. Maybe you will be rewriting the book on that condition?
Does leaky gut refer to small intestine only? I just assumed it did since that is the only place in the gut where absorption of proteins occurs. I think the only thing absorbed in the colon (large intestine) is water, so I am assuming that it is not physiologically possible for proteins to go through a damaged colon. Just thinking out loud here.
The D in "plain old" MC occurs, in part, because water is not properly absorbed in the colon. But this D becomes prolonged if gluten tolerance is also present and will not stop until gluten is eliminated or medication is taken to quiet the immune system. Also, my thought is that no one with "plain" MC should have any malabsorption or malnutrition, since the main damage is only limited to the colon (where only water is absorbed). However, it is gluten that damages the part of the gut where absorption takes place - the small intestine. Thus, those with gluten intolerance can experience anemia, B-12 deficiency, abnormal fat absorption, and the gamut of nutritional deficiencies.
Interesting that you could be a celiac. I know that celiacs can get MC and have positive colon biopsies. But biopsies are probably only done for a reason, like chronic D. We have at least one member with the combination. And your family history is significant I think. Even though you don't really know the details of your relatives' illnesses, maybe somehow it is all related.
Anyway, we are all interested to know what you find out. Maybe the citrus problem is related to the acidity. Do tomatoes and other acid foods bother you?
Love,
Polly
You know, you have done an amazing job as "self-diagnosed" - especially in view of the total lack of credible info and support you have had from the medical community. You are a detective extraordinare!
I am truly in awe of the conclusions you were able to draw, when many of your problems were not ones experienced by most here - the constipation or slow bowel motility, the fermentation issue, etc.As far as your wondering about diverticulosis causing leaky gut, you never know. At least as far as I know, there is no connection known at the present time , but look how much we have learned here from our own MC experiences that isn't to be found in any medical reference. Maybe you will be rewriting the book on that condition?
Does leaky gut refer to small intestine only? I just assumed it did since that is the only place in the gut where absorption of proteins occurs. I think the only thing absorbed in the colon (large intestine) is water, so I am assuming that it is not physiologically possible for proteins to go through a damaged colon. Just thinking out loud here.
The D in "plain old" MC occurs, in part, because water is not properly absorbed in the colon. But this D becomes prolonged if gluten tolerance is also present and will not stop until gluten is eliminated or medication is taken to quiet the immune system. Also, my thought is that no one with "plain" MC should have any malabsorption or malnutrition, since the main damage is only limited to the colon (where only water is absorbed). However, it is gluten that damages the part of the gut where absorption takes place - the small intestine. Thus, those with gluten intolerance can experience anemia, B-12 deficiency, abnormal fat absorption, and the gamut of nutritional deficiencies.
Interesting that you could be a celiac. I know that celiacs can get MC and have positive colon biopsies. But biopsies are probably only done for a reason, like chronic D. We have at least one member with the combination. And your family history is significant I think. Even though you don't really know the details of your relatives' illnesses, maybe somehow it is all related.
Anyway, we are all interested to know what you find out. Maybe the citrus problem is related to the acidity. Do tomatoes and other acid foods bother you?
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Wayne. You wrote:
I think you are wise to put the gluten challenge on hold for now. You've been through so much and seem to be on the mend. Stay the course!!!
Love,
Carrie
Good grief, Wayne, that is an incredible family history. No wonder you may be (or are) inclined to digestive problems. You do have one or more of the celiac genes, don't you? I think you are right on the mark to be thinking about celiac again. I don't remember if you have had the celiac biopsy or not. Anyway it certainly is worthy of consideration. There's no law that says you can't have celiac and also something else, right?Yes, I had relatives with GI problems. My father bled to death in a hospital, from angiodysplasia, (massive colonic bleeding), and apparently, so did an uncle, whom the doctors misdiagnosed as a victim of ulsers.
My mother had about half her colon removed, because it became hard and flattened, causing chronic constipation. I don't know what that type of condition is called, or even if it has a name.
I think you are wise to put the gluten challenge on hold for now. You've been through so much and seem to be on the mend. Stay the course!!!
Love,
Carrie
Wayne
Sorry to be so slow in a reply. I am not the fastest thinker but maybe halfast is good enough.
You have made so many amazing discoveries and helped so many others at the same time. speaking for so many I give my heartfelt thanks
If I was in your current circumstance I would have to requestion everything that I had ever questioned. In a way, it must seem like starting over. Never a bad place to be in that, in my experience, it always leads to new insights. IMHO real creative thinking comes from a time of gathering data, questioning it , being confused and questioning it again , gathering more information, questioning it , finding some clarity and then starting all over. A kind of thinking that you have always promoted and and has resulted such great concepts as Karen’s discovery of the paleolithic diet.
Some thoughts-
With Dr. Fine’s testing a gluten challenge need not be such an arduous task that it has been in the past. It used to be that you would have to consume gluten containing grains for some time until it again resulted in small bowel damage. In that I and many others MI’s immediately have brain fog, aches and pains and general malaise with the smallest ingestion of gluten that I suspect is from the antigens, I also suspect that if you ordered his gluten antibodies stool test and consumed gluten containing grains for a few short days it would show up on his tests . It is an idea anyway, and something you might ask Dr. Fine about in that one of his essays is about discovering the problem before damage occurs so their is no reason that you would have to go as far as extreme D.
Another thought that I have entertained is that if one had undiagnosed celiac disease might food not absorbed in the small bowel, enter the large bowel and result in fermentation , massive multiplication of bad bacteria and end up creating diverticular problems as you have found.
Well, you might have thought of these things already. You have helped so many that I only hope that you can find some new hope for you self .
MyBest to You My Friend
Matthew
Sorry to be so slow in a reply. I am not the fastest thinker but maybe halfast is good enough.
You have made so many amazing discoveries and helped so many others at the same time. speaking for so many I give my heartfelt thanks
If I was in your current circumstance I would have to requestion everything that I had ever questioned. In a way, it must seem like starting over. Never a bad place to be in that, in my experience, it always leads to new insights. IMHO real creative thinking comes from a time of gathering data, questioning it , being confused and questioning it again , gathering more information, questioning it , finding some clarity and then starting all over. A kind of thinking that you have always promoted and and has resulted such great concepts as Karen’s discovery of the paleolithic diet.
Some thoughts-
With Dr. Fine’s testing a gluten challenge need not be such an arduous task that it has been in the past. It used to be that you would have to consume gluten containing grains for some time until it again resulted in small bowel damage. In that I and many others MI’s immediately have brain fog, aches and pains and general malaise with the smallest ingestion of gluten that I suspect is from the antigens, I also suspect that if you ordered his gluten antibodies stool test and consumed gluten containing grains for a few short days it would show up on his tests . It is an idea anyway, and something you might ask Dr. Fine about in that one of his essays is about discovering the problem before damage occurs so their is no reason that you would have to go as far as extreme D.
Another thought that I have entertained is that if one had undiagnosed celiac disease might food not absorbed in the small bowel, enter the large bowel and result in fermentation , massive multiplication of bad bacteria and end up creating diverticular problems as you have found.
Well, you might have thought of these things already. You have helped so many that I only hope that you can find some new hope for you self .
MyBest to You My Friend
Matthew
Jean,
Bingo! Now that I think about it, I do indeed have childhood memories of frequent problems with constiopation, which seemed to diminish somewhere during my teen years. (I'm not sure why I have such vivid memories of something this disgusting, but apparently it indelibly impressed itself into my memory). I wonder if that could have been associated with gluten sensitivity.
My worst health problem as a kid, was asthma, which turned to hayfever when I neared my 20s, and then the hayfever disappeared when I started to show MC symptoms, (or whatever they were).
That's an interesting question. I'll think about it some more. Maybe some more memories will turn up.
Love,
Wayne
Bingo! Now that I think about it, I do indeed have childhood memories of frequent problems with constiopation, which seemed to diminish somewhere during my teen years. (I'm not sure why I have such vivid memories of something this disgusting, but apparently it indelibly impressed itself into my memory). I wonder if that could have been associated with gluten sensitivity.
My worst health problem as a kid, was asthma, which turned to hayfever when I neared my 20s, and then the hayfever disappeared when I started to show MC symptoms, (or whatever they were).
That's an interesting question. I'll think about it some more. Maybe some more memories will turn up.
Love,
Wayne
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.