Hey all,
Well I received a phone call from the nurse at my GI's office yesterday because I had called asking for the results of my biopsy. Apparently, my tests were negative for MC. She called it "great news" .... yes, it's great not to have something, but on the other hand, I am still sick and don't have answers. My mom made the point that we don't know how skilled he is and if he took multiple biopsies, etc. I just feel like I'm banging my head against a brick wall.
I received the kit from Dr. Fine and plan on stopping my Bentyl for the weekend to ensure that I have D (most of the time that D comes on is while I'm at work and then I take immodiums (like today!) to stop it....or I get sick at work). I haven't been able to do it yet because of being out of town and crazy work schedules. Explain to me how my "care" from my GI is to "keep taking the Bentyl and Immodium"---That to me is not care!
Hopefully Dr. Fine's test will yield some answers. I'm going to hold out until I get his results....either way, I might take the pepto bismul to see how that goes. Thanks for all of your suggestions .... I have to hope that something will bring me relief. I'm getting closer to my weight dropping into double digits from triple digits----how can my Dr say that this is IBS????????
Another frustrating day....
new to site --- possible MC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Exactly, our bodies are trying so hard to tell us that somethings not right and we tell it to shut up by covering up the symptoms. That is not care. *sigh*LauraJ wrote:Explain to me how my "care" from my GI is to "keep taking the Bentyl and Immodium"---That to me is not care!
All the best to you. You'll get this figured out eventually.
Mike
Laura,
Mike is correct, of course. The typical GI-recommended treatment to cover up the symptoms is better than nothing in the short term, but a poor way to go in the long term.
Your mother raises an interesting point, since it is quite possible to miss all the sites of inflammation by taking biopsies in the wrong locations, and/or just plain bad luck, depending, of course, on how widespread the inflammation might happen to be. My understanding is that the distribution of inflammed sites in the colon can be rather spotty. Contrary to the claims of most GIs who are poorly acquainted with MC, however, those sites can be seen by the unaided eye. Most GIs completely overlook them, of course, because they don't know what they are looking for. (This is mentioned by Dr. Fine, in his discussion of MC, on his website). I was able to see those inflammed patches during my own colonoscopy--they are visable as faint pink splotches, that barely stand out against the lighter pink background of a normal colon.
Okay, two possibilities come to mind. The first is; you might have a bacterial overgrowth in the small intestine, IOW, bacteria that are normally confined to the colon, may have somehow managed to colonize the ileum, or even higher in the small intestine. This could be causing your problem. If so, then a proper treatment with antibiotics could be used to correct it. (See the link in Marsha's topoic about a new approach to IBS - http://www.perskyfarms.com/phpBB2/viewtopic.php?t=4231). Have any of your doctors ever treated you with antibiotics since this problem first began?
The other possibility involves sailing in uncharted waters, but I'll throw it out for your consideration, anyway. We all know that gluten sensitivity causes villous atrophy for celiacs, and epithelial and sub-epithelial changes to the mucosal lining of the colon, for patients with MC. We also know that food components other than gluten, can trigger reaction episodes in both patient catagories. What we don't know is whether these other food items actually leave easily identifiable markers in the digestive tract, the way that gluten does.
IOW, I've never seen any documention from any research that indicted that anything other than gluten can result in villous atrophy for celiacs. Likewise, I've never seen any research reports that demonstrate that anything other than gluten can result in the lymphocytic infiltration between the cells in the colonic mucosa, and/or the thickening of the sub-epithelial collagen layers, that are so well known as the markers that define the presence of LC, or CC, respectively, (or MC, whenever both markers are present). Maybe that documentation exists, but if it does, I have never seen it.
Now, maybe that documentation doesn't exist simply because no one has ever researched it, or at least never reported it. Or, maybe that documentation doesn't exist because gluten is the only antagonist that can cause damage of those types. If the latter statement is true, then your biopsies would be expected to be negative for MC, simply because you have been on a gluten free diet for a sufficient period of time to allow all the damage originally caused by gluten to heal.
This begs the question then, just what is the mechanism by which non-gluten food triggers manage to cause reactions with clinical symptoms so similar to gluten? We've always just assumed that they cause an inflammatory response similar to gluten, but maybe that's not the case. At any rate, this post is already long enough, so that's a topic for another time.
Regarding the samples for Enterolab, it's certainly not necessary to have D, when you take samples. The antibodies will even be present for at least a month or so after you stop eating those suspect foods, and in the case of gluten, antibodies remain detectable up to a year after going on a GF diet. (This is true for the stool test--it is not true, of course for a blood test for those antibodies). It may be a good idea, however, to avoid certain meds that might mask the production of antibodies. I think Dr. Fine specifically mentions prednisone, so I would assume that any corticosteroid would best be avoided prior to a sample collection. I'm not sure about other meds.
Your mention of Pepto-Bismol reminds me of an interesting point--PB is an anti-bacterial. Hmmmmmm.
Tex
Mike is correct, of course. The typical GI-recommended treatment to cover up the symptoms is better than nothing in the short term, but a poor way to go in the long term.
Your mother raises an interesting point, since it is quite possible to miss all the sites of inflammation by taking biopsies in the wrong locations, and/or just plain bad luck, depending, of course, on how widespread the inflammation might happen to be. My understanding is that the distribution of inflammed sites in the colon can be rather spotty. Contrary to the claims of most GIs who are poorly acquainted with MC, however, those sites can be seen by the unaided eye. Most GIs completely overlook them, of course, because they don't know what they are looking for. (This is mentioned by Dr. Fine, in his discussion of MC, on his website). I was able to see those inflammed patches during my own colonoscopy--they are visable as faint pink splotches, that barely stand out against the lighter pink background of a normal colon.
Okay, two possibilities come to mind. The first is; you might have a bacterial overgrowth in the small intestine, IOW, bacteria that are normally confined to the colon, may have somehow managed to colonize the ileum, or even higher in the small intestine. This could be causing your problem. If so, then a proper treatment with antibiotics could be used to correct it. (See the link in Marsha's topoic about a new approach to IBS - http://www.perskyfarms.com/phpBB2/viewtopic.php?t=4231). Have any of your doctors ever treated you with antibiotics since this problem first began?
The other possibility involves sailing in uncharted waters, but I'll throw it out for your consideration, anyway. We all know that gluten sensitivity causes villous atrophy for celiacs, and epithelial and sub-epithelial changes to the mucosal lining of the colon, for patients with MC. We also know that food components other than gluten, can trigger reaction episodes in both patient catagories. What we don't know is whether these other food items actually leave easily identifiable markers in the digestive tract, the way that gluten does.
IOW, I've never seen any documention from any research that indicted that anything other than gluten can result in villous atrophy for celiacs. Likewise, I've never seen any research reports that demonstrate that anything other than gluten can result in the lymphocytic infiltration between the cells in the colonic mucosa, and/or the thickening of the sub-epithelial collagen layers, that are so well known as the markers that define the presence of LC, or CC, respectively, (or MC, whenever both markers are present). Maybe that documentation exists, but if it does, I have never seen it.
Now, maybe that documentation doesn't exist simply because no one has ever researched it, or at least never reported it. Or, maybe that documentation doesn't exist because gluten is the only antagonist that can cause damage of those types. If the latter statement is true, then your biopsies would be expected to be negative for MC, simply because you have been on a gluten free diet for a sufficient period of time to allow all the damage originally caused by gluten to heal.
This begs the question then, just what is the mechanism by which non-gluten food triggers manage to cause reactions with clinical symptoms so similar to gluten? We've always just assumed that they cause an inflammatory response similar to gluten, but maybe that's not the case. At any rate, this post is already long enough, so that's a topic for another time.
Regarding the samples for Enterolab, it's certainly not necessary to have D, when you take samples. The antibodies will even be present for at least a month or so after you stop eating those suspect foods, and in the case of gluten, antibodies remain detectable up to a year after going on a GF diet. (This is true for the stool test--it is not true, of course for a blood test for those antibodies). It may be a good idea, however, to avoid certain meds that might mask the production of antibodies. I think Dr. Fine specifically mentions prednisone, so I would assume that any corticosteroid would best be avoided prior to a sample collection. I'm not sure about other meds.
Your mention of Pepto-Bismol reminds me of an interesting point--PB is an anti-bacterial. Hmmmmmm.
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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moremuscle
- Rockhopper Penguin
- Posts: 706
- Joined: Wed May 25, 2005 6:16 am
- Location: South Carolina
Hi Laura and welcome to this group of "Help is coming your way" people 
Yeah, congratulations, you've found support and much more. Stick around and soon enough you will be on the track to better control and a better life.
I read Jean's post to you earlier in this thread and I have quoted part of it below because I agree so much with her and I had a similar experience and I have also not been back to the GI since then, which is now 2 years ago.
Quoting Jean:
"Darn Docs (except Polly)!!!
I haven't been back to my GI since my MC diagnosis. He prescribed drugs and told me to see him in 6 weeks (which seems like a long time when you have D 15 times per day). By the six week marker, I'd found this board, gone gluten free, and was on my way to feeling better. I'm glad he diagnoses me correctly but his idea of treatment left alot to be desired.
I don't plan to return to a GI unless something unexpected happens. I probably know more than any of them about my disease from the help of this board."
Sweet dreams, Laura.
Love,
Karen
Yeah, congratulations, you've found support and much more. Stick around and soon enough you will be on the track to better control and a better life.I read Jean's post to you earlier in this thread and I have quoted part of it below because I agree so much with her and I had a similar experience and I have also not been back to the GI since then, which is now 2 years ago.
Quoting Jean:
"Darn Docs (except Polly)!!!
I haven't been back to my GI since my MC diagnosis. He prescribed drugs and told me to see him in 6 weeks (which seems like a long time when you have D 15 times per day). By the six week marker, I'd found this board, gone gluten free, and was on my way to feeling better. I'm glad he diagnoses me correctly but his idea of treatment left alot to be desired.
I don't plan to return to a GI unless something unexpected happens. I probably know more than any of them about my disease from the help of this board."
Sweet dreams, Laura.
Love,
Karen
Inspired by the paleolithic diet and lifestyle -
living w/o gluten, dairy, soy, corn, and yeast.
living w/o gluten, dairy, soy, corn, and yeast.