After my appointment with the Dr. (GI) today ...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Wayne,
There's a lot to digest in your post. I'll probably miss a lot of your questions, but here are my thoughts on some of them.
First off, I agree that Becky wrote a great post - it was right to the point, right on the money, and the timing was great.
Your doctor did surprisingly well, though he was a bit off in some of his opinions. Our experiences here, suggest that he was expecting results from the Entocort sooner than statistics might justify. True, some patients see good results that quickly, but that's not a typical response - most take longer.
His "plan of action" sorta sounds as if he plans to try every drug with even a remote chance of helping, but never allowing sufficient time for each drug to bring results, before switching to another.
You are not the only member here who has Barrett's Esophagus, and many of us have GERD. If you keep the GERD under reasonable control, the Barrett's is very unlikely to progress past where it is now.
Most of us have small intestinal inflammation. If only the proximal end, (the upper end), is inflamed, (while the distal end, (the lower end), is not, I would say the odds are rather high that you probably have a celiac gene, and the disease may someday fully develop.
Your GI doc may be correct, when he says that you have a third form of MC. If, when the pathologist examined your biopsy samples under the microscope, he could count around a hundred or more lymphocytes infiltrated into the surface of your epithelium, and the sub-epithelial collagen bands were several times thicker than normal, then you have what is usually referred to as simply MC, (microscopic colitis), which has the markers of both LC and CC. However, lymphocytes are always present in all versions of MC, (including collagenous colitis), so if the lymphocyte count is significantly below that, then you simply have CC. Actually, there are at least several other rather rare forms of MC, that many/most doctors are not even aware of, such as giant cell MC, (with subepithelial multinucleated giant cells), microscopic colitis with granulomatous inflammation, etc.
I agree with his statement, "You're wrong ... MC is common ...". Very, very few doctors are aware of that fact, but I've seen research articles documenting the fact that if random members of the general population are given a colonoscopy with biopsies, a surprisingly high percentage will show evidence of having had MC, at some time in the past. The reason this is virtually unknown, is because no one has a colonoscopy exam with biopsies, unless MC is suspected. They might have a colonoscopy, perhaps, (for cancer screening, or other purposes), but biopsies are almost never taken, unless MC is suspected. The big question, of course, is, "Why did they all get over it, in a matter of days, while we cannot shake it, without changing our diets, or taking meds?". And, why does it take us months, or years, to get over it, and then we also have to remain on an altered diet, or continue to take meds for the rest of our lives? He's obviously spent some time studying this disease, if he is aware of the fact that it's not rare, as is commonly believed. (Many "experts" still believe that the prevalence of MC is only in the range of eight or ten cases per hundred thousand, in the general population). Obviously, that claim is ludicrous, as cases are now being diagnosed at previously unbelievable rates.
There is no correlation between severe cases of MC and Crohn's or UC. It is not impossible for us to also develop Crohn's or UC, (because MC does not make us immune to other IBDs), but the odds are almost astronomical that MC might turn into Crohn's or UC. We probably have about the same chance of developing another IBD as anyone else in the general population. In fact, we have a member or two who were first diagnosed with MC, and later with UC. Likewise, we have two or three members who were first diagnosed with celiac disease, and then MC. However, IMO, the order of diagnosis does not necessarily reflect the order in which the diseases originally presented. In a perfect world, the first disease to present would be the first to be diagnosed, but it takes so long to get a diagnosis for some of these diseases, that all bets are off, as far as establishing a correct hierarchy is concerned.
Your doctor totally missed this next one:
You probably know a lot more about the GF diet that your doctor will ever know, unless he has actually used it himself, for a significant amount of time. You can try a gluten challenge if you want, (most GI docs are in favor of it, since it's no hide off their butts, and it provides good data on your record), however, I can tell you right now that you probably couldn't get a positive test, even if you were a full-blown celiac, unless you've been eating gluten for somewhere around six months. Anything less than that is pretty "iffy", and may or may not provide a valid test. Since your upper endoscopy biopsy was negative for villous atrophy, though, the chances of you testing positive on a celiac blood test are about as close to zero as you can get. You are probably more sensitive to gluten than the average celiac, but a classic celiac blood test will never detect it - they just aren't sensitive enough to detect the type of gluten sensitive enteropathy that we have.
I think that candida is involved far more often than most GI docs realize. He did good on the probiotics question, however.
Even though your iron levels may have looked OK, you will probably feel better, and have more energy, if you take sublingual, (absorb under the tongue), B-12, just in case you have a malabsorption problem.
You know, I watched the monitor closely during my colonoscopy, but I never even thought about asking for a copy on a DVD. I may check into that, yet. I didn't even realize that it was recorded, (and it may not have been, since that was eight years ago), but I'll check that out, the next time I'm there. It may well be that images or videos are not available for release - I've never looked into that. I can tell you though, that you should be able to obtain copies of all written reports of all procedures, (including surgery, endoscopy exams, blood tests, etc.), at absolutely no cost to you, as the patient. Anyone else has to pay for them. Go to the "Records", or "Release of Records" department in the hospital/clinic, and request each of the records that you want, (usually specified by procedure and date). All you should have to do is show some proper identification, and sign the form or forms. If you don't pick them up in person, there might be a charge, but they should be free, if you pick them up there.
I'm not sure what your GI doc's overall grade should be. He's definitely much better than average, though certainly not perfect. All in all, I would consider him to be a keeper. Compared with so many of the losers out there, he's a pretty decent GI doc. I'm impressed that he knew a few obscure facts that precious few GI docs are aware of.
Tex
There's a lot to digest in your post. I'll probably miss a lot of your questions, but here are my thoughts on some of them.
First off, I agree that Becky wrote a great post - it was right to the point, right on the money, and the timing was great.
Your doctor did surprisingly well, though he was a bit off in some of his opinions. Our experiences here, suggest that he was expecting results from the Entocort sooner than statistics might justify. True, some patients see good results that quickly, but that's not a typical response - most take longer.
His "plan of action" sorta sounds as if he plans to try every drug with even a remote chance of helping, but never allowing sufficient time for each drug to bring results, before switching to another.
You are not the only member here who has Barrett's Esophagus, and many of us have GERD. If you keep the GERD under reasonable control, the Barrett's is very unlikely to progress past where it is now.
Most of us have small intestinal inflammation. If only the proximal end, (the upper end), is inflamed, (while the distal end, (the lower end), is not, I would say the odds are rather high that you probably have a celiac gene, and the disease may someday fully develop.
Your GI doc may be correct, when he says that you have a third form of MC. If, when the pathologist examined your biopsy samples under the microscope, he could count around a hundred or more lymphocytes infiltrated into the surface of your epithelium, and the sub-epithelial collagen bands were several times thicker than normal, then you have what is usually referred to as simply MC, (microscopic colitis), which has the markers of both LC and CC. However, lymphocytes are always present in all versions of MC, (including collagenous colitis), so if the lymphocyte count is significantly below that, then you simply have CC. Actually, there are at least several other rather rare forms of MC, that many/most doctors are not even aware of, such as giant cell MC, (with subepithelial multinucleated giant cells), microscopic colitis with granulomatous inflammation, etc.
I agree with his statement, "You're wrong ... MC is common ...". Very, very few doctors are aware of that fact, but I've seen research articles documenting the fact that if random members of the general population are given a colonoscopy with biopsies, a surprisingly high percentage will show evidence of having had MC, at some time in the past. The reason this is virtually unknown, is because no one has a colonoscopy exam with biopsies, unless MC is suspected. They might have a colonoscopy, perhaps, (for cancer screening, or other purposes), but biopsies are almost never taken, unless MC is suspected. The big question, of course, is, "Why did they all get over it, in a matter of days, while we cannot shake it, without changing our diets, or taking meds?". And, why does it take us months, or years, to get over it, and then we also have to remain on an altered diet, or continue to take meds for the rest of our lives? He's obviously spent some time studying this disease, if he is aware of the fact that it's not rare, as is commonly believed. (Many "experts" still believe that the prevalence of MC is only in the range of eight or ten cases per hundred thousand, in the general population). Obviously, that claim is ludicrous, as cases are now being diagnosed at previously unbelievable rates.
There is no correlation between severe cases of MC and Crohn's or UC. It is not impossible for us to also develop Crohn's or UC, (because MC does not make us immune to other IBDs), but the odds are almost astronomical that MC might turn into Crohn's or UC. We probably have about the same chance of developing another IBD as anyone else in the general population. In fact, we have a member or two who were first diagnosed with MC, and later with UC. Likewise, we have two or three members who were first diagnosed with celiac disease, and then MC. However, IMO, the order of diagnosis does not necessarily reflect the order in which the diseases originally presented. In a perfect world, the first disease to present would be the first to be diagnosed, but it takes so long to get a diagnosis for some of these diseases, that all bets are off, as far as establishing a correct hierarchy is concerned.
Your doctor totally missed this next one:
There most definitely is a connection. Like Crohn's disease, MC can affect the digestive system from anus to mouth, and, in fact, the small intestine is usually involved, in most cases.Q. Is there any relationship between the inflammation in my small intestine and that in the colon?
You probably know a lot more about the GF diet that your doctor will ever know, unless he has actually used it himself, for a significant amount of time. You can try a gluten challenge if you want, (most GI docs are in favor of it, since it's no hide off their butts, and it provides good data on your record), however, I can tell you right now that you probably couldn't get a positive test, even if you were a full-blown celiac, unless you've been eating gluten for somewhere around six months. Anything less than that is pretty "iffy", and may or may not provide a valid test. Since your upper endoscopy biopsy was negative for villous atrophy, though, the chances of you testing positive on a celiac blood test are about as close to zero as you can get. You are probably more sensitive to gluten than the average celiac, but a classic celiac blood test will never detect it - they just aren't sensitive enough to detect the type of gluten sensitive enteropathy that we have.
Bad answer - any other sensitivities will prevent your intestines from healing. I will admit though, that your doc is way better than most, in that he at least recognizes that you can be gluten sensitive without being a celiac. Kudos for him there.Q. Are there any other sensitivities that might be contributing to my condition?
A. There might ... but we won't worry about that now.
MC can present with a form of diarrhea known as secretory diarrhea, in which the colon actually secretes copious amounts of water into the lumen, rather than removing the water, the way it is supposed to do. This is why MC can cause such massive amounts of diarrhea, at times.... either a secretion or problem with absorption
I think that candida is involved far more often than most GI docs realize. He did good on the probiotics question, however.
Even though your iron levels may have looked OK, you will probably feel better, and have more energy, if you take sublingual, (absorb under the tongue), B-12, just in case you have a malabsorption problem.
You know, I watched the monitor closely during my colonoscopy, but I never even thought about asking for a copy on a DVD. I may check into that, yet. I didn't even realize that it was recorded, (and it may not have been, since that was eight years ago), but I'll check that out, the next time I'm there. It may well be that images or videos are not available for release - I've never looked into that. I can tell you though, that you should be able to obtain copies of all written reports of all procedures, (including surgery, endoscopy exams, blood tests, etc.), at absolutely no cost to you, as the patient. Anyone else has to pay for them. Go to the "Records", or "Release of Records" department in the hospital/clinic, and request each of the records that you want, (usually specified by procedure and date). All you should have to do is show some proper identification, and sign the form or forms. If you don't pick them up in person, there might be a charge, but they should be free, if you pick them up there.
I'm not sure what your GI doc's overall grade should be. He's definitely much better than average, though certainly not perfect. All in all, I would consider him to be a keeper. Compared with so many of the losers out there, he's a pretty decent GI doc. I'm impressed that he knew a few obscure facts that precious few GI docs are aware of.
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.
Hi Wayne,
Aren't we fortunate to have Tex! I would have been at a loss to answer your questions.
I think your doc is doing a better job for you than mine did. I've cancelled my next appointment with him and will go solo for awhile until I see my primary in a couple of weeks to see what he thinks.
You had GREAT questions. I applaud you.
This is quite a journey, isn't it? That's why the serenity prayer seems so appropriate for us. "Courage to change the things I can" is the clencher for me, making the lifestyle changes that are sooo hard. Like thoughts of "how do I not eat my child's birthday cake", "this is so not fair", etc. Food has always been very high on a pedestal for me. Now, I'm feeling very empowered. I'm the one in charge, not the food! It's quite exhilirating.
Hang in there!
~Becky
Aren't we fortunate to have Tex! I would have been at a loss to answer your questions.
I think your doc is doing a better job for you than mine did. I've cancelled my next appointment with him and will go solo for awhile until I see my primary in a couple of weeks to see what he thinks.
You had GREAT questions. I applaud you.
This is quite a journey, isn't it? That's why the serenity prayer seems so appropriate for us. "Courage to change the things I can" is the clencher for me, making the lifestyle changes that are sooo hard. Like thoughts of "how do I not eat my child's birthday cake", "this is so not fair", etc. Food has always been very high on a pedestal for me. Now, I'm feeling very empowered. I'm the one in charge, not the food! It's quite exhilirating.
Hang in there!
~Becky
Hi Wayne,
That was a PDA, (Personal Digital Assistant), actually a pocket computer, that he pulled out of his pocket. I carry one too. They're really handy, but like all computers, they are only as good as the person who uses them, and you can find the same misguided information on them, as you can find on any computer.
http://www.rxlist.com/cgi/generic/entocort_ad.htm
Cramps are not on the short list, because they occurred during trials in less than 5 % of patients.
He may well think that the GF diet should resolve all symptoms promptly, and it does, for some lucky people. Some see relief after only a couple of days or so, but not very many. It took several of us here about a year, and it took me over a year and a half to reach remission, but I could tell that I was on the right track at about a year into the diet.
Yes, there could be a problem taking cholestyramine and virtually any other med together, simply because cholestramine tends to bind other drugs taken concurently. The recommendation is to take other meds at least one hour before, or four to six hours after taking cholestyramine, (or as long afterwards as is practical, if you can't wait four hours or more). There isn't a risk of an adverse reaction, it's just that the cholestramine will impede the absorption of the other meds, so that their effectiveness may be significantly diminished. Benadryl, on the other hand, can exaggerate the sedating effects of other drugs with sedating qualities, anti-anxiety meds, many common pain medications, and certain meds used to treat high blood pressure. Benedryl shouldn't affect the way that cholestramine works though. IOW, the cholestramine will interfere with the absorption of Benedryl, (if they are taken together), but the Benedryl shouldn't affect the absorption of the cholstramine. I hope I haven't just confused the issue here.
Since I'm a rather slow writer, due to the fact that I often get side-tracked, because I usually have more than one thing going on at a time, here, I'll go ahead and post this, in case you want to make a decision on the meds, and get to bed before I finish reading the rest of your post, and responding to it.
Tex
That was a PDA, (Personal Digital Assistant), actually a pocket computer, that he pulled out of his pocket. I carry one too. They're really handy, but like all computers, they are only as good as the person who uses them, and you can find the same misguided information on them, as you can find on any computer.
From:Adverse events, occurring in 520 patients treated with ENTOCORT EC 9 mg (total daily dose) in short term active disease state studies, with an incidence of <5% and greater than placebo (n=107) are listed below by body system:
Body as a Whole: asthenia, C-Reactive protein increased, chest pain, dependent edema, face edema, flu-like disorder, malaise; Cardiovascular: hypertension; Central and Peripheral Nervous System: hyperkinesia, paresthesia, tremor, vertigo; Gastrointestinal: anus disorder, Crohns disease aggravated, enteritis, epigastric pain, gastrointestinal fistula, glossitis, hemorrhoids, intestinal obstruction, tongue edema, tooth disorder; Hearing and Vestibular: Ear infection-not otherwise specified; Heart Rate and Rhythm: palpitation, tachycardia; Metabolic and Nutritional: hypokalemia, weight increase; Musculoskeletal:arthritis aggravated, cramps, myalgia; Psychiatric: agitation, appetite increased, confusion, insomnia, nervousness, sleep disorder, somnolence;Reproductive,Female: intermenstrual bleeding, menstrual disorder; Respiratory: bronchitis, dyspnea;Skin and Appendages: acne, alopecia, dermatitis, eczema, skin disorder, sweating increased; Urinary: dysuria, micturition frequency, nocturia; Vascular: flushing; Vision: conjunctivitis, eye abnormality, vision abnormal; White Blood Cell: leukocytosis
http://www.rxlist.com/cgi/generic/entocort_ad.htm
Cramps are not on the short list, because they occurred during trials in less than 5 % of patients.
He may well think that the GF diet should resolve all symptoms promptly, and it does, for some lucky people. Some see relief after only a couple of days or so, but not very many. It took several of us here about a year, and it took me over a year and a half to reach remission, but I could tell that I was on the right track at about a year into the diet.
Yes, there could be a problem taking cholestyramine and virtually any other med together, simply because cholestramine tends to bind other drugs taken concurently. The recommendation is to take other meds at least one hour before, or four to six hours after taking cholestyramine, (or as long afterwards as is practical, if you can't wait four hours or more). There isn't a risk of an adverse reaction, it's just that the cholestramine will impede the absorption of the other meds, so that their effectiveness may be significantly diminished. Benadryl, on the other hand, can exaggerate the sedating effects of other drugs with sedating qualities, anti-anxiety meds, many common pain medications, and certain meds used to treat high blood pressure. Benedryl shouldn't affect the way that cholestramine works though. IOW, the cholestramine will interfere with the absorption of Benedryl, (if they are taken together), but the Benedryl shouldn't affect the absorption of the cholstramine. I hope I haven't just confused the issue here.
Since I'm a rather slow writer, due to the fact that I often get side-tracked, because I usually have more than one thing going on at a time, here, I'll go ahead and post this, in case you want to make a decision on the meds, and get to bed before I finish reading the rest of your post, and responding to it.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Wayne,
Okay, continuing here, I probably should have pointed out that that was just a WAEG about the implications of inflammation locations, regarding future developments. I sort of assumed that you are aware that speculations such as that are certainly not chiseled in stone. Speaking in general terms, the inflammation patterns of Crohn's disease and MC are very similar, (the lesions of Crohn's obviously penetrate far deeper into the mucosa of the intestines than MC - in fact, MC does not even produce any lesions, only superficial inflammation visible only under a microscope), but the distribution of inflammation follows a very similar pattern. IOW, typically, both large areas of the colon, and part or all of the ileum, (the lower third of the small intestine), is inflamed with both diseases. Inflammation is usually not as significant in the upper regions of the small intestine, with both diseases. This is why an ileostomy will usually "cure" either disease, though it is almost never used with MC, since that would be akin to burning down the barn, in order to get rid of the rats.
On the other hand, the upper part of the small intestine, (the duodenum), and the middle section, (the jejunum), is always severely damaged by untreated celiac disease, (except in the case of "latent" celiac sprue), whereas the lower end, and the colon, are usually spared.
The assimilation of all this was the basis for my "off the cuff" comment that you may have a celiac gene making you susceptible to gluten damage to the upper end of the small intestine. I hope I'm not just confusing you, because you won't find such a conclusion in the literature, at least I've never seen it laid out this way. I'm mostly just "thinking out loud", here. (I often do that. LOL.)
Most multivitamins contain the cyanocobalamin form of B-12, which must be converted to methylcobalamin or adenosylcobalamin before it can be used by the body, and absorptivity is often very poor, (often only a fraction of one percent, which is virtually useless). If you dissolve a sublingual tablet of methylcobalamin, (1000 micrograms is a reasonable dose), under the tongue every day, the absorption level will be almost as good as receiving an injection. IOW, look for the methylcobalamin form, rather than cyanocobalamin. You should be able to find it at any health food store, pharmacy, Wal-Mart, etc. If you can't locate any, just ask a pharmacist. It's an OTC product. B-12 can be stored for long periods by the body, so after you get your levels up, you can usually coast for a while.
I'm not aware that hospitals are prohibited by law from charging for dispensing copies of records. I'm guessing that the laws allow them to charge a "reasonable fee" for reproducing records. Locally, though, I've never encountered one that charged the patient, unless they were mailed, and if they are mailed, there is almost always a charge. The usual fee for attorneys here in Texas, is one dollar per page.
There is probably also a difference in the cost, when requesting the records from the "Records" department of the hospital/clinic, compared with requesting them from a doctor. Doctors almost never do anything without charging for it. Am I right?
If you're lucky, the Entocort will control your D until you can get the gluten challenge out of the way. If you're not lucky, you will wonder why you're doing a gluten challenge, long before it is over, and the D will continue for months after you resume the GF diet. It all depends on your sensitivity. I would surmise that the greater the celiac "effect" on your gluten sensitivity, the less likely it is that the Entocort will control the D, because Entocort is not activated until it reaches the ileum, and the colon. Therefore, it will not protect against any inflammation above the ileum.
Several members who have had their gallbladders removed have tried cholestyramine, but frankly I can't recall anyone who was happy with the results, as far as controlling the symptoms of MC are concerned. You might do a search of the archives on this site - the search function works pretty well.
Don't let that worry you. In all my years of researching the literature available on this disease, (and other IBDs), I can recall finding two reports, (IOW, reports of two patients), where the researchers suspected that MC had segued into another IBD, (I believe UC), but there was no way to prove that the initial case of MC actually had anything to do with the development of UC. As I mentioned before, having MC does not make us immune to developing any other IBDs, but by the same token, it doesn't necessarily make us more susceptible, either.
I have no idea what he was referring to with his comments about "lead" colon. If he pronounced the word "lead", in the same way that the name for the metal called "lead" would be pronounced, (IOW, if he pronounced it "led", rather that "leed"), then he was probably referring to "lead pipe" colon, which is an advanced stage of development in UC, characterized by rather rigid colon walls, with an appearance similar to the interior of a lead pipe. If that is indeed what he was referring to, I would have to say the he was talking
. That has absolutely nothing to do with MC, and his reference to it makes him sound like a nut.
Remember, a lot of what I post is just my opinion, based on experience and research, and I don't have a medical degree. There are a lot of ifs, ands, and buts involved this disease, and we are all different. The road to remission can be a pretty complex journey, or it can be a simple one, but there is a path to remission for everyone - we just have to find it.
Tex
Okay, continuing here, I probably should have pointed out that that was just a WAEG about the implications of inflammation locations, regarding future developments. I sort of assumed that you are aware that speculations such as that are certainly not chiseled in stone. Speaking in general terms, the inflammation patterns of Crohn's disease and MC are very similar, (the lesions of Crohn's obviously penetrate far deeper into the mucosa of the intestines than MC - in fact, MC does not even produce any lesions, only superficial inflammation visible only under a microscope), but the distribution of inflammation follows a very similar pattern. IOW, typically, both large areas of the colon, and part or all of the ileum, (the lower third of the small intestine), is inflamed with both diseases. Inflammation is usually not as significant in the upper regions of the small intestine, with both diseases. This is why an ileostomy will usually "cure" either disease, though it is almost never used with MC, since that would be akin to burning down the barn, in order to get rid of the rats.
On the other hand, the upper part of the small intestine, (the duodenum), and the middle section, (the jejunum), is always severely damaged by untreated celiac disease, (except in the case of "latent" celiac sprue), whereas the lower end, and the colon, are usually spared.
The assimilation of all this was the basis for my "off the cuff" comment that you may have a celiac gene making you susceptible to gluten damage to the upper end of the small intestine. I hope I'm not just confusing you, because you won't find such a conclusion in the literature, at least I've never seen it laid out this way. I'm mostly just "thinking out loud", here. (I often do that. LOL.)
Most multivitamins contain the cyanocobalamin form of B-12, which must be converted to methylcobalamin or adenosylcobalamin before it can be used by the body, and absorptivity is often very poor, (often only a fraction of one percent, which is virtually useless). If you dissolve a sublingual tablet of methylcobalamin, (1000 micrograms is a reasonable dose), under the tongue every day, the absorption level will be almost as good as receiving an injection. IOW, look for the methylcobalamin form, rather than cyanocobalamin. You should be able to find it at any health food store, pharmacy, Wal-Mart, etc. If you can't locate any, just ask a pharmacist. It's an OTC product. B-12 can be stored for long periods by the body, so after you get your levels up, you can usually coast for a while.
I'm not aware that hospitals are prohibited by law from charging for dispensing copies of records. I'm guessing that the laws allow them to charge a "reasonable fee" for reproducing records. Locally, though, I've never encountered one that charged the patient, unless they were mailed, and if they are mailed, there is almost always a charge. The usual fee for attorneys here in Texas, is one dollar per page.
There is probably also a difference in the cost, when requesting the records from the "Records" department of the hospital/clinic, compared with requesting them from a doctor. Doctors almost never do anything without charging for it. Am I right?
If you're lucky, the Entocort will control your D until you can get the gluten challenge out of the way. If you're not lucky, you will wonder why you're doing a gluten challenge, long before it is over, and the D will continue for months after you resume the GF diet. It all depends on your sensitivity. I would surmise that the greater the celiac "effect" on your gluten sensitivity, the less likely it is that the Entocort will control the D, because Entocort is not activated until it reaches the ileum, and the colon. Therefore, it will not protect against any inflammation above the ileum.
Several members who have had their gallbladders removed have tried cholestyramine, but frankly I can't recall anyone who was happy with the results, as far as controlling the symptoms of MC are concerned. You might do a search of the archives on this site - the search function works pretty well.
Tex, I'm at a loss why he wanted me to think my condition might be the beginnings of "more serious" (his words) colitis (he mentioned ulcerative).
Don't let that worry you. In all my years of researching the literature available on this disease, (and other IBDs), I can recall finding two reports, (IOW, reports of two patients), where the researchers suspected that MC had segued into another IBD, (I believe UC), but there was no way to prove that the initial case of MC actually had anything to do with the development of UC. As I mentioned before, having MC does not make us immune to developing any other IBDs, but by the same token, it doesn't necessarily make us more susceptible, either.
I have no idea what he was referring to with his comments about "lead" colon. If he pronounced the word "lead", in the same way that the name for the metal called "lead" would be pronounced, (IOW, if he pronounced it "led", rather that "leed"), then he was probably referring to "lead pipe" colon, which is an advanced stage of development in UC, characterized by rather rigid colon walls, with an appearance similar to the interior of a lead pipe. If that is indeed what he was referring to, I would have to say the he was talking
. That has absolutely nothing to do with MC, and his reference to it makes him sound like a nut. Remember, a lot of what I post is just my opinion, based on experience and research, and I don't have a medical degree. There are a lot of ifs, ands, and buts involved this disease, and we are all different. The road to remission can be a pretty complex journey, or it can be a simple one, but there is a path to remission for everyone - we just have to find it.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Wayne,
All those symptoms are coming from gluten, including the sore on your tongue. Many of us have mouth sores, until we cut gluten out of our diet. Depression goes hand and hand with MC.
Expect your neurological symptoms to also get worse, during this gluten challenge. Gluten causes reversible brain damage, for many patients who are gluten sensitive, but doctors who are aware of this aspect of the disease, are truly rare:
http://www.celiac.com/articles/1085/1/G ... Page1.html
This is just my opinion, but GI docs who "prescribe" gluten challenges, violate the spirit of the hippocratic oath, since challenges "punish" the patient unnecessarily. If the patient wants to do a challenge, fine - but the doctor shouldn't be the one requesting it.
Good luck with the challenge.
You're most welcome,
Tex
All those symptoms are coming from gluten, including the sore on your tongue. Many of us have mouth sores, until we cut gluten out of our diet. Depression goes hand and hand with MC.
Expect your neurological symptoms to also get worse, during this gluten challenge. Gluten causes reversible brain damage, for many patients who are gluten sensitive, but doctors who are aware of this aspect of the disease, are truly rare:
http://www.celiac.com/articles/1085/1/G ... Page1.html
This is just my opinion, but GI docs who "prescribe" gluten challenges, violate the spirit of the hippocratic oath, since challenges "punish" the patient unnecessarily. If the patient wants to do a challenge, fine - but the doctor shouldn't be the one requesting it.
I agree - the sooner you can get away from gluten, the better off you'll be.Wayne wrote:That may be partly why I'm depressed ... I don't want to go backward, I want to go forward.
Good luck with the challenge.
You're most welcome,
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.