Dr. Schiller trained Dr. Fine years ago. Apparently they haven't stayed buddies since then.
He thinks I have MC and IBS and that is why I don't respond to medications for one or the other because the other gets in the way. At least that is what I think he said. It is a long drive to Dallas and I was tired by the time I got there. Then a "fellow" (GI in training) came in first for me to tell my story to (they had records from my other GI doc), then he conferred with Dr. Schiller and then they both came in. He wants me to do a stool test again to see if I am malabsorbing fat. Since I have met my deductible this year I will do it just to see what it says. I asked him how food plays a part in this and I wasn't surprised when he said "I don't know". He knows I am on this diet.
I did get to visit a dear friend so it was not a wasted trip.
Pat
Saw Dr. Schiller yesterday
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Pat,
Hmmmm. His explanation for why meds don't work for you is not entirely satisfying, is it. While it's certainly true that meds for IBDs don't necessarily work for IBS, and vice versa, I see no reason why the appropriate meds for both could not be taken concurrently, if you did, in fact, have both diseases. (Assuming that IBS does, indeed, exist). For example, taking Entocort at the same time as Bentyl should not aggravate IBS symptoms, nor should the Bentyl make IBD symptoms worse, and each should work for the appropriate disease, respectively. It sounds as though he was talking without really thinking about what he was saying.
I'm thinking that someone else recently, (within the last year, maybe), reported that they had been officially diagnosed with both IBS and MC, (concurrently), but I don't remember who it might have been, unfortunately. I still haven't been able to figure out how someone can be diagnosed with both diseases, though, in view of the fact that IBS is a default diagnosis, by definition, (IOW, after everything else is ruled out). It appears to me, that according to the rules, once MC is diagnosed, that preempts the possibility of an IBS definition. Or may be I just don't understand "the rules".
At least Dr. Schiller was honest and open-minded, (maybe), about his position on the part that food plays in MC reactions.
I would assume that you do have a malabsorption problem - otherwise it shouldn't be so difficult for you to gain weight. It will be interesting to see if the test bears that out. I'm curious to see what he will recommend, based on that test result.
Maybe it wasn't a wasted trip - he may surprise you, yet.
Thanks for the update.
Tex
Hmmmm. His explanation for why meds don't work for you is not entirely satisfying, is it. While it's certainly true that meds for IBDs don't necessarily work for IBS, and vice versa, I see no reason why the appropriate meds for both could not be taken concurrently, if you did, in fact, have both diseases. (Assuming that IBS does, indeed, exist). For example, taking Entocort at the same time as Bentyl should not aggravate IBS symptoms, nor should the Bentyl make IBD symptoms worse, and each should work for the appropriate disease, respectively. It sounds as though he was talking without really thinking about what he was saying.
I'm thinking that someone else recently, (within the last year, maybe), reported that they had been officially diagnosed with both IBS and MC, (concurrently), but I don't remember who it might have been, unfortunately. I still haven't been able to figure out how someone can be diagnosed with both diseases, though, in view of the fact that IBS is a default diagnosis, by definition, (IOW, after everything else is ruled out). It appears to me, that according to the rules, once MC is diagnosed, that preempts the possibility of an IBS definition. Or may be I just don't understand "the rules".
At least Dr. Schiller was honest and open-minded, (maybe), about his position on the part that food plays in MC reactions.
I would assume that you do have a malabsorption problem - otherwise it shouldn't be so difficult for you to gain weight. It will be interesting to see if the test bears that out. I'm curious to see what he will recommend, based on that test result.
Maybe it wasn't a wasted trip - he may surprise you, yet.
Thanks for the update.
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.
Tex,
I never took IBS and MC medicines concurrently. I really don't want to take medicines for either. I would love for diet to take care of this. We'll see.
The only way I can see that one can be diagnosed IBS and MC concurrently is that when given the meds or whatever treatment for one or the other the person doesn't respond. I was originally dx with IBS and nothing worked. Never tried Bentyl. Tried Lotronex, fiber, hypnotherapy, calcium carbonate, antidepressants, etc. Then when dx with MC only tried meds for MC, even Prednisone didn't work. It helped but... Nothing tried concurrently. Maybe this is why diet has not worked because of the IBS.
Thanks for your input, Tex. You are amazing to me.
Pat
I never took IBS and MC medicines concurrently. I really don't want to take medicines for either. I would love for diet to take care of this. We'll see.
The only way I can see that one can be diagnosed IBS and MC concurrently is that when given the meds or whatever treatment for one or the other the person doesn't respond. I was originally dx with IBS and nothing worked. Never tried Bentyl. Tried Lotronex, fiber, hypnotherapy, calcium carbonate, antidepressants, etc. Then when dx with MC only tried meds for MC, even Prednisone didn't work. It helped but... Nothing tried concurrently. Maybe this is why diet has not worked because of the IBS.
Thanks for your input, Tex. You are amazing to me.
Pat
Dr. Schiller
I'm rather surprised that he doesn't seem to accept his student's work......... 
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi,
Baylor Med (the Dallas location) is one of the centers for excellence in gastroenterology. Dr. S. was a speaker at a recent conference for the American Gastroenterology docs (I forget the exact name but think it includes the two capitalized words.)
Anyway, they had their annual national meeting in Houston earlier this year, and a physician I knew was in attendence. (Hope I'm not getting this mixed up with G.I.G. national conference in Dallas -- some of the main celiac docs from around the country spoke there this year as well, and the same doc attended and reported back on that as well.)
They, as a whole, I think, are definitely more aware that a connection with gluten and other food allergies is involved, but have to be tentative publically until the research comes out officially. This is just the way it works. All the thousands of people who are assymptomatic now, even though we might have all the proof we need in our own bodies, we are still antedotal evidence until the appropriate research studies are published in certain important journals. This process takes forever anyway, but who wants to wait for that as sick as some of us have been?!!!
As we've discussed here many times, the reason for these docs' reluctance is that there has not been peer review for the stool tests as of yet. To my knowledge, that is the ONLY thing that's holding up official recognition. Obviously, thousands of us and people with other gluten sensitive and other food sensitivity issues have benefitted enormously from these stool tests and Dr. Fine's advice, and most especially, by not eating the appropriate allergens -- mainly gluten.
I was in attendance at Dr. Fine's presentation of his research, and it was excellent. Apparently, the other docs who've tried to duplicate his findings haven't been able to do so because they've simply used the dilutions and other aspects of the testing exactly as they are used in the accepted BLOOD tests for gluten senitivity, and as Dr. Fine can attest, the ones used for the blood tests DON'T work on STOOL specimens.
Dr. Fine was able to adjust the dilutions and at least one other thing to come up with a good test, and the others who've tried to replicate that haven't bothered to make the appropriate adjustments -- one attempt at replication I'm thinking of was a German study.
I don't see how the appropriate peer review can come to pass unless another research team, totally independent of Dr. Fine's lab, comes up with the right dilutions, etc. appropriate for stool instead of blood in order to replicate his test results. I suppose he could just give his methods to them, but perhaps no one is willing to do the research, even with that information, at this point in time. I think that if he could figure out the dilutions, etc., that work, that surely another research lab could do it, but apparently, the German researchers gave up without even attempting the adjustments. This is a real dilemna! However, I can understand Dr. S's and others professional positions, particularly with patients. What they may say in a Q&A session with docs asking direct questions might show a little more openness to the possibility. At one of these conferences, one of the MAIN celiac docs actually stated that HE'D like to take Dr. Fine's tests. Ha!
At any rate, you should be in pretty good hands with the reputation that place has. Did they suggest scoping your small intestine to look for damaged villi as yet? I'm sure you know that that is the so-called "gold standard" for the typically flattened villi criteria to get the celiac diagnosis. If you've read much here, you probably realize that most folks with M.C. will not show up positive for celiac disease on this or other tests (some do show up with villi completely flat, however, and there are other serious things that can be found during the scope.) Once you are sure you don't have a classic case, that doesn't rule out the possibility of gluten sensitivity which can be playing havoc with your colon and other organs. This is where Dr. Fine's tests can help -- when all the "accepted" tests don't show anything.
One thing you can be thankful for is that someone did a good job of taking enough specimens in your colon to get a name attached -- M. C. -- to what you've got so that you could find this wonderful support group.
By the way, I was originally diagnosed with IBS until a few days after the colonoscopy when the biopsy reports were phoned to me after they came back from the pathologist. At the time, I specifically asked the gastro whether the M.C. replaced the diagnosis of I.B.S. or whether I had both, and I know he said that I had both. Frankly, I think he just felt he had to say something, so that's what he said as though he were confident. However, I've heard that he's thinking more along the lines of a wider presence of gluten sensitivity and food allergens with the M.C. more recently. Hope that's true!
I really just consider IBS as an acknowledgment to us by the physician that there's something real going on in our guts so we don't get the feeling they think it's all in our heads.
Actually, I think they used to think that, so at least we're making progress giving it a name, making what happens with the "attacks" a real entity, at least.
Speaking of that, it's true that folks not on the diet, if they're gluten or other sensitive, tend to react when they are emotionally upset, but I can tell you from experience that I've had lots of really upsetting things going on, and not a single reaction (other than perfectly solid stools) happened during those trying times. Also, a reaction to something you ate, say, 24 hours before may come so quickly after eating something spicey or oily or greasey that you think that's the what your gut is reacting to. I call those "secondary triggers."
Once off the allergens, especially gluten, you'll find those secondary ones tend to fade a way.
Just a few wandering thoughts late at night.
Well wishes!
Luce
Baylor Med (the Dallas location) is one of the centers for excellence in gastroenterology. Dr. S. was a speaker at a recent conference for the American Gastroenterology docs (I forget the exact name but think it includes the two capitalized words.)
Anyway, they had their annual national meeting in Houston earlier this year, and a physician I knew was in attendence. (Hope I'm not getting this mixed up with G.I.G. national conference in Dallas -- some of the main celiac docs from around the country spoke there this year as well, and the same doc attended and reported back on that as well.)
They, as a whole, I think, are definitely more aware that a connection with gluten and other food allergies is involved, but have to be tentative publically until the research comes out officially. This is just the way it works. All the thousands of people who are assymptomatic now, even though we might have all the proof we need in our own bodies, we are still antedotal evidence until the appropriate research studies are published in certain important journals. This process takes forever anyway, but who wants to wait for that as sick as some of us have been?!!!
As we've discussed here many times, the reason for these docs' reluctance is that there has not been peer review for the stool tests as of yet. To my knowledge, that is the ONLY thing that's holding up official recognition. Obviously, thousands of us and people with other gluten sensitive and other food sensitivity issues have benefitted enormously from these stool tests and Dr. Fine's advice, and most especially, by not eating the appropriate allergens -- mainly gluten.
I was in attendance at Dr. Fine's presentation of his research, and it was excellent. Apparently, the other docs who've tried to duplicate his findings haven't been able to do so because they've simply used the dilutions and other aspects of the testing exactly as they are used in the accepted BLOOD tests for gluten senitivity, and as Dr. Fine can attest, the ones used for the blood tests DON'T work on STOOL specimens.
Dr. Fine was able to adjust the dilutions and at least one other thing to come up with a good test, and the others who've tried to replicate that haven't bothered to make the appropriate adjustments -- one attempt at replication I'm thinking of was a German study.
I don't see how the appropriate peer review can come to pass unless another research team, totally independent of Dr. Fine's lab, comes up with the right dilutions, etc. appropriate for stool instead of blood in order to replicate his test results. I suppose he could just give his methods to them, but perhaps no one is willing to do the research, even with that information, at this point in time. I think that if he could figure out the dilutions, etc., that work, that surely another research lab could do it, but apparently, the German researchers gave up without even attempting the adjustments. This is a real dilemna! However, I can understand Dr. S's and others professional positions, particularly with patients. What they may say in a Q&A session with docs asking direct questions might show a little more openness to the possibility. At one of these conferences, one of the MAIN celiac docs actually stated that HE'D like to take Dr. Fine's tests. Ha!
At any rate, you should be in pretty good hands with the reputation that place has. Did they suggest scoping your small intestine to look for damaged villi as yet? I'm sure you know that that is the so-called "gold standard" for the typically flattened villi criteria to get the celiac diagnosis. If you've read much here, you probably realize that most folks with M.C. will not show up positive for celiac disease on this or other tests (some do show up with villi completely flat, however, and there are other serious things that can be found during the scope.) Once you are sure you don't have a classic case, that doesn't rule out the possibility of gluten sensitivity which can be playing havoc with your colon and other organs. This is where Dr. Fine's tests can help -- when all the "accepted" tests don't show anything.
One thing you can be thankful for is that someone did a good job of taking enough specimens in your colon to get a name attached -- M. C. -- to what you've got so that you could find this wonderful support group.
By the way, I was originally diagnosed with IBS until a few days after the colonoscopy when the biopsy reports were phoned to me after they came back from the pathologist. At the time, I specifically asked the gastro whether the M.C. replaced the diagnosis of I.B.S. or whether I had both, and I know he said that I had both. Frankly, I think he just felt he had to say something, so that's what he said as though he were confident. However, I've heard that he's thinking more along the lines of a wider presence of gluten sensitivity and food allergens with the M.C. more recently. Hope that's true!
I really just consider IBS as an acknowledgment to us by the physician that there's something real going on in our guts so we don't get the feeling they think it's all in our heads.
Actually, I think they used to think that, so at least we're making progress giving it a name, making what happens with the "attacks" a real entity, at least.
Speaking of that, it's true that folks not on the diet, if they're gluten or other sensitive, tend to react when they are emotionally upset, but I can tell you from experience that I've had lots of really upsetting things going on, and not a single reaction (other than perfectly solid stools) happened during those trying times. Also, a reaction to something you ate, say, 24 hours before may come so quickly after eating something spicey or oily or greasey that you think that's the what your gut is reacting to. I call those "secondary triggers."
Once off the allergens, especially gluten, you'll find those secondary ones tend to fade a way.
Just a few wandering thoughts late at night.
Well wishes!
Luce
Luce,
That procedure was verified by an Italian lab, about 5 years ago. We've discussed it a time or two previously, on this board, (you may have been away at the time), but nothing has happened in the research area since then, to my knowledge.
http://www.celiac.com/articles/740/1/It ... Page1.html
Tex
That procedure was verified by an Italian lab, about 5 years ago. We've discussed it a time or two previously, on this board, (you may have been away at the time), but nothing has happened in the research area since then, to my knowledge.
http://www.celiac.com/articles/740/1/It ... Page1.html
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.
Well then,
Why hasn't Dr. Fine's study been published, or has it, if this backs up his work? Do you think this will be the verification that his tests need, since this article says the technique is similar, and it is testing stool for the same thing?
I think that there's a fear that if people don't have the biopsy proven results that they won't be as likely to stay on the diet, and as a result, diet sloppily, possibly leading to dire consequences in the long term -- even a fast killing lymphoma, but I figure that's a danger even WITH the biopsy proven diagnosis of classical celiac disease. Guess once Dr. Fasano's blocking medication is approved for prescribed use, that will help the people who can't seem to do the diet no matter how hard they try. Too bad it takes so long to get the research and replication that's needed. I'm just glad to know that the Italians came out with that study that long ago. Sooo...what's the deal with the attitude against the original researcher and his tests. Looks political to me, or perhaps jealousy. I just hope, for the sake of the victims of this stuff, that all the testing done continues to get more sensitive no matter who is developing them. That should be the goal, plus lessoning the trauma in getting diagnosed, as well as the time it takes to get diagnosed. I figure the less invasive (and expensive) the first series of tests are, the more people who will be screened before their bodies and lives are so messed up. I don't want what happened to me happening to anyone!!!
Thanks for the update, Wayne. 2004 is a long time ago. Did I quit reading THAT long ago??!!! Anyway, I'm sure glad to hear that news!
Yours, Luce
I think that there's a fear that if people don't have the biopsy proven results that they won't be as likely to stay on the diet, and as a result, diet sloppily, possibly leading to dire consequences in the long term -- even a fast killing lymphoma, but I figure that's a danger even WITH the biopsy proven diagnosis of classical celiac disease. Guess once Dr. Fasano's blocking medication is approved for prescribed use, that will help the people who can't seem to do the diet no matter how hard they try. Too bad it takes so long to get the research and replication that's needed. I'm just glad to know that the Italians came out with that study that long ago. Sooo...what's the deal with the attitude against the original researcher and his tests. Looks political to me, or perhaps jealousy. I just hope, for the sake of the victims of this stuff, that all the testing done continues to get more sensitive no matter who is developing them. That should be the goal, plus lessoning the trauma in getting diagnosed, as well as the time it takes to get diagnosed. I figure the less invasive (and expensive) the first series of tests are, the more people who will be screened before their bodies and lives are so messed up. I don't want what happened to me happening to anyone!!!
Thanks for the update, Wayne. 2004 is a long time ago. Did I quit reading THAT long ago??!!! Anyway, I'm sure glad to hear that news!
Yours, Luce
Luce,
Thanks for all the info. I have had all the scopes and biopsies from top to bottom and the camera pill in between. Only thing found was the MC. No damage to villi. First scope was 2000 and the last was 2006 with endoscope and camera pill in 2007. If I didn't have Enterolab report and people on this board encouraging me I wouldn't be able to stay on this diet because I have seen no results from removing gluten from my diet. And I was/am very careful to remove all gluten. Actually when I bailed from the gluten free diet last April after being on it for 9 months I felt better and my BMs were firmer and I gained weight, but I was also on Entocort and Imuran. This time I have been on the diet but even stricter ( removing not only gluten, soy, and casein, but also legumes, corn, and fructose. (been dx as fructose intolerant) I am not on Imuran anymore but have been on Entocort going on 2 months. Off Imuran for a little over a month. Diet for a little over 2 months. It seems to me that I should be seeing results, like firmer BMs. I don't go as frequently and maybe that is all I should expect at this time. I'm just a little frustrated. Thanks again.
Pat
Thanks for all the info. I have had all the scopes and biopsies from top to bottom and the camera pill in between. Only thing found was the MC. No damage to villi. First scope was 2000 and the last was 2006 with endoscope and camera pill in 2007. If I didn't have Enterolab report and people on this board encouraging me I wouldn't be able to stay on this diet because I have seen no results from removing gluten from my diet. And I was/am very careful to remove all gluten. Actually when I bailed from the gluten free diet last April after being on it for 9 months I felt better and my BMs were firmer and I gained weight, but I was also on Entocort and Imuran. This time I have been on the diet but even stricter ( removing not only gluten, soy, and casein, but also legumes, corn, and fructose. (been dx as fructose intolerant) I am not on Imuran anymore but have been on Entocort going on 2 months. Off Imuran for a little over a month. Diet for a little over 2 months. It seems to me that I should be seeing results, like firmer BMs. I don't go as frequently and maybe that is all I should expect at this time. I'm just a little frustrated. Thanks again.
Pat
Luce,
I don't have the foggiest idea why so few doctors are willing to accept the work that Dr. Fine has done. I've wondered a few times if maybe the "good ol' boy" network that seems to prevail in medicine, has chosen to spurn him because of his "second career" as a songwriter/rock-and-roll performer. Maybe that's just not dignified enough to appeal to their highly sophisticated senses, so they choose to exclude him from their hallowed halls. Who knows? In the meantime, ignorance marches on.
Wayne
I don't have the foggiest idea why so few doctors are willing to accept the work that Dr. Fine has done. I've wondered a few times if maybe the "good ol' boy" network that seems to prevail in medicine, has chosen to spurn him because of his "second career" as a songwriter/rock-and-roll performer. Maybe that's just not dignified enough to appeal to their highly sophisticated senses, so they choose to exclude him from their hallowed halls. Who knows? In the meantime, ignorance marches on.
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 would say his chances of a Nobel Prize are way out in front of his chances for a Grammy! Ha!
In reality, I suspect that his starting up his own lab after leaving Baylor Med in Dallas as well as the sort of self diagnosis approach from his website may be a little scary to some people. I have a little cringe factor myself with some of the more new agy things that he includes in his programs. I don't think they are necessary to our getting any better, myself being a perfect example as I don't do any of that stuff and I'm perfectly well just on his dietary recommendations alone. I just think those unnecessary additions are confusing, and not just to his peers.
Have a safe journey Wayne, and good luck with the truck!
Yours, Luce
In reality, I suspect that his starting up his own lab after leaving Baylor Med in Dallas as well as the sort of self diagnosis approach from his website may be a little scary to some people. I have a little cringe factor myself with some of the more new agy things that he includes in his programs. I don't think they are necessary to our getting any better, myself being a perfect example as I don't do any of that stuff and I'm perfectly well just on his dietary recommendations alone. I just think those unnecessary additions are confusing, and not just to his peers.
Have a safe journey Wayne, and good luck with the truck!
Yours, Luce
Morning Luce,
I have a hunch that you're probably correct about that. His approach certainly flies in the face of conventional medicine attitudes, and is bound to ruffle some feathers on the big birds. LOL.
Thanks,
Wayne
I have a hunch that you're probably correct about that. His approach certainly flies in the face of conventional medicine attitudes, and is bound to ruffle some feathers on the big birds. LOL.
Thanks,
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.