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I had my endo and flex sigmoidoscopy 2 full weeks ago and had yet to hear from my dr. until today. I received this letter:
"Dear NMM,
The recent random biopsies of your colon and duodenum show no evidence of abnormality. The biospies were essentially normal. Continue to use anti-diarrheal medication as needed and the probiotics. If your symptoms worsen or persist, please feel free to call for a clinic appointment.
Please continue to follow up with your primary care physician for general health maintenance and with our office as needed. Please call if you have any questions or if you feel your symptoms are worsening. Thank you for allowing me to participate in your medical care.
Sincerely,
Your Stupid Doctor
(well, I added the Your Stupid Doctor part, obviously.)
I cannot. CANNOT believe this.
I got the pathology report 3 days after the procedures and here is what IT said:
Pre-op Diagnosis: Wt loss, abd pain, change in bowel habits
Post-op Diagnosis: Rule out sprue, microscopic colitis
Final diagnosis:
Duodenum biopsy-
No diagnostic abnormality
Colon random biopsy
Focal, minimally activie colitis, see comment.
Comment:
"Sections show strips of colonic mucosa with intact crypt architecture. Lympoid aggregates are prominent and focally efface the lamina propria. There are minimal, focal neutrophilic infiltrates which are present in the mucosa. These areas are often associated with the lymphoid aggregates. Intraepithelial lymphocytes are not increased in number. The collagen table is not thickened. The lamina propria is not fibrotic."
SOoooooooo, apparently "minimally active colitis" and "essentially normal" mean the same thing??????? WHAT?????
Nowhere in the letter does he even MENTION any form of colitis at all. Just because it is minimal and I don't have an entirely destroyed bowel that means I am just supposed to do nothing and take anti-diarrheal meds? I weigh 97 pounds. Do they not think that a loss of 15 pounds in 5 months is something that should be further explored?
I am sure many of you have similar stories.
WOW. WOW. WOW.
I am SO ready to write a very, very nasty letter to his office. Not only is this doctor a total idiot but all his office staff are rude, nasty, uncaring people.
Ok, thanks for the vent. I just had to get that off my chest in a place where I know people will understand.
Failed again by drs.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
And the beat goes on. 
Hmmmmmm. The pathology report definitely does not describe the markers of MC. Your doctor's first mistake was to try to assess the presence, and/or the extent of MC development, with a Sigmoidoscope. The sigmoidoscope will allow only the distal colon to be examined, (only up to the Sigmoid section). It's fine for checking for hemorrhoids, UC, and/or diverticulosis/diverticulitis. In the hands of an expert, (such as Dr. Fine), it can be used to detect MC. In the hands of a typical GI doc, though, it leaves a lot to be desired, as a diagnostic tool for MC. The reason for that, is the fact that MC is not uniformly distributed in the colon. In fact, the markers of MC are virtually always most pronounced in the proximal colon, (the ascending colon, or right side colon), and MC is typically significantly less prominent, in the descending colon, (the left side colon), and the distal colon, (the sigmoid colon). IOW, it is easy for someone who does not know how to maximize the odds of detecting MC, to simply miss it, when taking the biopsy samples, particularly if they take them in the left side colon, where the markers of MC are the least concentrated.
I note that the pathology report states that the method by which the biopsy samples were gathered was, "Colon random biopsy". That statement is a mistake, of course, since only a relatively small percentage of the total colon could be accessed by the scope that was used. It should have stated, "Distal colon random biopsy". Even if more of the colon could be accessed, though, "random biopsy" is a poor way to detect MC, and it's an especially poor way, when using a sigmoidoscope. IOW, IMO, the reason why the pathologist failed to detect the presence of MC, is because the biopsy samples were collected from areas where MC was not present.
Incidentally, in case you're wondering, yes, there is a way to maximize the odds of detecting MC, when using a sigmoidoscope. When the scope view of a colon in which MC is present, is displayed on the monitor, it is possible to see areas of slightly darker pigmentation, (a darker shade of pink), against the normal light pink background of a typical "healthy" colon. These areas will be present in sort of random "splotches", and they represent areas where MC is active. If the biopsy samples are taken from those "slightly darker pink" areas, MC will be found. If the biopsy samples are taken from the lighter pink background areas, MC will not be found. It's that simple. (Dr. Fine taught me that.
).
The "upper" exam may have had similar issues. Small intestinal damage, from celiac disease, is not uniformly distributed in the small intestine, either, so it's possible to take biopsy samples from the wrong areas in the duodenum, and miss areas where villus atrophy actually exists. In a case like this, it's difficult to say whether the markers do not exist, or you were just unlucky enough to draw a doctor who doesn't know how to find them. Of course, it's possible that he was just having a bad day, too.
Both exams appear to have been worthless, possibly because your doctor didn't know how to properly look for MC, (and maybe he didn't know how to look for celiac disease, either). Soooooo, if I were in your shoes, I would be more than a little upset, too. Those are not fun exams, and they are expensive exams, to boot.
Yep, we definitely understand what you are saying, since quite a few of us have had similar experiences. The sad part is, your doctors opinion is "official", and will now be a part of your record, for better or for worse.
The bottom line is, at least a lot more GI docs are aware of MC now, but most of them still have a way to go, to learn how to properly detect it; and, of course, most of them still have to learn how to properly treat it, also.
Tex
Hmmmmmm. The pathology report definitely does not describe the markers of MC. Your doctor's first mistake was to try to assess the presence, and/or the extent of MC development, with a Sigmoidoscope. The sigmoidoscope will allow only the distal colon to be examined, (only up to the Sigmoid section). It's fine for checking for hemorrhoids, UC, and/or diverticulosis/diverticulitis. In the hands of an expert, (such as Dr. Fine), it can be used to detect MC. In the hands of a typical GI doc, though, it leaves a lot to be desired, as a diagnostic tool for MC. The reason for that, is the fact that MC is not uniformly distributed in the colon. In fact, the markers of MC are virtually always most pronounced in the proximal colon, (the ascending colon, or right side colon), and MC is typically significantly less prominent, in the descending colon, (the left side colon), and the distal colon, (the sigmoid colon). IOW, it is easy for someone who does not know how to maximize the odds of detecting MC, to simply miss it, when taking the biopsy samples, particularly if they take them in the left side colon, where the markers of MC are the least concentrated.
I note that the pathology report states that the method by which the biopsy samples were gathered was, "Colon random biopsy". That statement is a mistake, of course, since only a relatively small percentage of the total colon could be accessed by the scope that was used. It should have stated, "Distal colon random biopsy". Even if more of the colon could be accessed, though, "random biopsy" is a poor way to detect MC, and it's an especially poor way, when using a sigmoidoscope. IOW, IMO, the reason why the pathologist failed to detect the presence of MC, is because the biopsy samples were collected from areas where MC was not present.
Incidentally, in case you're wondering, yes, there is a way to maximize the odds of detecting MC, when using a sigmoidoscope. When the scope view of a colon in which MC is present, is displayed on the monitor, it is possible to see areas of slightly darker pigmentation, (a darker shade of pink), against the normal light pink background of a typical "healthy" colon. These areas will be present in sort of random "splotches", and they represent areas where MC is active. If the biopsy samples are taken from those "slightly darker pink" areas, MC will be found. If the biopsy samples are taken from the lighter pink background areas, MC will not be found. It's that simple. (Dr. Fine taught me that.
).The "upper" exam may have had similar issues. Small intestinal damage, from celiac disease, is not uniformly distributed in the small intestine, either, so it's possible to take biopsy samples from the wrong areas in the duodenum, and miss areas where villus atrophy actually exists. In a case like this, it's difficult to say whether the markers do not exist, or you were just unlucky enough to draw a doctor who doesn't know how to find them. Of course, it's possible that he was just having a bad day, too.
Both exams appear to have been worthless, possibly because your doctor didn't know how to properly look for MC, (and maybe he didn't know how to look for celiac disease, either). Soooooo, if I were in your shoes, I would be more than a little upset, too. Those are not fun exams, and they are expensive exams, to boot.
Yep, we definitely understand what you are saying, since quite a few of us have had similar experiences. The sad part is, your doctors opinion is "official", and will now be a part of your record, for better or for worse.
The bottom line is, at least a lot more GI docs are aware of MC now, but most of them still have a way to go, to learn how to properly detect it; and, of course, most of them still have to learn how to properly treat it, also.
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.
-
no-more-muffins
- Adélie Penguin
- Posts: 90
- Joined: Wed Jun 24, 2009 5:37 pm
Okay, now I'm confused. In your "Introduction" post you said, "My endoscopy results were normal but the sigmoidoscopy showed MC."
Was the pathology report that you were referring to there, the one you posted in this thread, or was it a previous one?
In order to be able to better assess the situation - do you have, (or have you had in the past couple of months), stools that are light gray, or slightly greenish in color, that tend to float, and/or tend to fragment, and have an odor that, (as grannyh puts it), "would knock a buzzard off a garbage truck, at half a mile".
One more question, "How are your teeth?"
Tex
Was the pathology report that you were referring to there, the one you posted in this thread, or was it a previous one?
In order to be able to better assess the situation - do you have, (or have you had in the past couple of months), stools that are light gray, or slightly greenish in color, that tend to float, and/or tend to fragment, and have an odor that, (as grannyh puts it), "would knock a buzzard off a garbage truck, at half a mile".
One more question, "How are your teeth?"
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.
-
no-more-muffins
- Adélie Penguin
- Posts: 90
- Joined: Wed Jun 24, 2009 5:37 pm
There aren't any other pathology reports. Sorry I was unclear. I had my endo and my sigmoid on the same day so both procedures were included in the same report.
I thought that since the report said I had "minimally active colitis" that meant I had colitis. And when I read about the lymphocyte aggregates being prominent I thought that was also a sign of MC.
My stools have been looser than usual (since I have had symptoms), not gray but more yellowish/tan. They break apart in the toilet and I can often see undigested food particles in there. That may be normal... They usually float and it smells just like regular poop as far as I know. Stinky, but no buzzard killing.
As far as my teeth go, I have cavities in most of my molars. I have not noticed a deficiency in enamel but I don't know. My front teeth are all fine. I think I have ok teeth, but not great.
I am short, 5'2". When I was a kid I was never on the growth charts and my parents were worried I wouldn't grow. I went through puberty pretty late with menarche at 15.5 years old.
Any thoughts?
I thought that since the report said I had "minimally active colitis" that meant I had colitis. And when I read about the lymphocyte aggregates being prominent I thought that was also a sign of MC.
My stools have been looser than usual (since I have had symptoms), not gray but more yellowish/tan. They break apart in the toilet and I can often see undigested food particles in there. That may be normal... They usually float and it smells just like regular poop as far as I know. Stinky, but no buzzard killing.
As far as my teeth go, I have cavities in most of my molars. I have not noticed a deficiency in enamel but I don't know. My front teeth are all fine. I think I have ok teeth, but not great.
I am short, 5'2". When I was a kid I was never on the growth charts and my parents were worried I wouldn't grow. I went through puberty pretty late with menarche at 15.5 years old.
Any thoughts?
NMM,
The Lymphoid aggregates are a common feature, and can be connected with UC, but they have no connection with "increased lymphocytic infiltration", which would be a marker for LC. The remark about "minimally active colitis", probably refers to the lymphoid aggregates, and to the presence of focal neutrophilic infiltrates. These are early markers for either Crohn's disease, or UC, though it is impossible to say which, without additional information. Considering the location of the biposy samples, the most likely of the two would be UC. The report also specifically mentions the absence of any collagen band thickening, which rules out CC.
Okay, so let's go over what we have here: The lack of increased lympohocytic infiltration, specifically rules out LC. The absence of any apparent collagen band thickening, specifically rules out CC. The report didn't specifically mention any observations that might suggest large cell MC, clear cell MC, or any of the other rarer forms of MC.
So, I'm thinking that you might possibly have paucicellular LC, especially since you are somewhat asymptomatic, (no watery D), but technically, there should have been at least a slight elevation in IELs, (Intra-Epithelial Lymphocytes), for that to be a possibility, so this is just specualtion on my part, and would have to be verified by having a pathologist familiar with diagnosing paucicellular LC, examine some slides made from biopsy samples taken from the right side colon, and/or the transverse colon.
http://cat.inist.fr/?aModele=afficheN&cpsidt=16071305
If you want to read more technical info about paucicellular LC, this is a good article:
http://ajcp.ascpjournals.org/content/12 ... l.pdf+html
Note these quotes from that article:
Please don't be concerned about the comments that I made about Crohn's and UC, above. The fact that preliminary markers exist, most definitely does not mean that either of these diseases will develop. If you want to take precautions, following the GF diet might help to minimize any risk that might exist, but, of course, that sort of preemptive treatment has not been researched, nor documented, to the best of my knowledge.
Your stool description suggests possible gluten sensitivity, but not celiac disease, (the odor would be horrendous, with CD, and usually with MC). Floating stools are an indication of incomplete digestion, and possibly fat malabsorption. Do you notice any greasy, (iridescent), stains radiating outward from them in the water? If so, that would indicate fat malabsorption, and therefore malabsorption of fat-soluble vitamins, etc., which is common with MC.
You didn't mention the condition of your teeth. If they are fine, with no abnormal degree of cavities, or enamel erosion, then you either do not have celiac disease, or you have not had it long enough to accrue any damage. Significant gluten sensitivity, in the absence of fully-developed CD, can have the same effect on the teeth.
The bottom line is, IMO, the pathology report you posted does not rule out MC, because the area where the biopsy samples were collected, was poorly selected. It's possible that the report could have valid findings, but it's also very possible that the report simply amounts to a false negative, due to a poorly planned procedure.
Remember, all of this is just my opinion, as a student of MC - I am not a doctor.
Edit: Whoa! I see you added some more information about your teeth, height, and your relatively late maturity. Wow! If that was all the information that I had to go on, I would be forced to argue that you are most definitely a celiac. We are missing something here, (or at least your doctors are). I believe that you are, at the very least, highly gluten sensitive, whether you are symptomatic or not, and regardless of what the "upper" endoscopy biopsy results showed. It would be very interesting to see what Dr. Fine would have to say about your situation. This appears to be a classic example of undiagnosed celiac disease. I would suggest that you ask your doctor for a bone density test. If you have osteopenia, (or worse), that would pretty well clinch the case for celiac disease.
Tex
The Lymphoid aggregates are a common feature, and can be connected with UC, but they have no connection with "increased lymphocytic infiltration", which would be a marker for LC. The remark about "minimally active colitis", probably refers to the lymphoid aggregates, and to the presence of focal neutrophilic infiltrates. These are early markers for either Crohn's disease, or UC, though it is impossible to say which, without additional information. Considering the location of the biposy samples, the most likely of the two would be UC. The report also specifically mentions the absence of any collagen band thickening, which rules out CC.
Okay, so let's go over what we have here: The lack of increased lympohocytic infiltration, specifically rules out LC. The absence of any apparent collagen band thickening, specifically rules out CC. The report didn't specifically mention any observations that might suggest large cell MC, clear cell MC, or any of the other rarer forms of MC.
So, I'm thinking that you might possibly have paucicellular LC, especially since you are somewhat asymptomatic, (no watery D), but technically, there should have been at least a slight elevation in IELs, (Intra-Epithelial Lymphocytes), for that to be a possibility, so this is just specualtion on my part, and would have to be verified by having a pathologist familiar with diagnosing paucicellular LC, examine some slides made from biopsy samples taken from the right side colon, and/or the transverse colon.
http://cat.inist.fr/?aModele=afficheN&cpsidt=16071305
If you want to read more technical info about paucicellular LC, this is a good article:
http://ajcp.ascpjournals.org/content/12 ... l.pdf+html
Note these quotes from that article:
IOW, the increase in IELs can be so slight that classic LC would not be indicated.The distinctive features that separated paucicellular LC from LC were patchiness and a lower density of surface IELs such that the morphologic criteria of classic LC were not fulfilled.
IOW, the descending colon is not the place to be trying to diagnose paucicellular LC, (nor classic LC, for that matter).Some of the sigmoid colon and rectal biopsy specimens were minimally abnormal and were not diagnostic of paucicellular LC on their own accord.
Please don't be concerned about the comments that I made about Crohn's and UC, above. The fact that preliminary markers exist, most definitely does not mean that either of these diseases will develop. If you want to take precautions, following the GF diet might help to minimize any risk that might exist, but, of course, that sort of preemptive treatment has not been researched, nor documented, to the best of my knowledge.
Your stool description suggests possible gluten sensitivity, but not celiac disease, (the odor would be horrendous, with CD, and usually with MC). Floating stools are an indication of incomplete digestion, and possibly fat malabsorption. Do you notice any greasy, (iridescent), stains radiating outward from them in the water? If so, that would indicate fat malabsorption, and therefore malabsorption of fat-soluble vitamins, etc., which is common with MC.
You didn't mention the condition of your teeth. If they are fine, with no abnormal degree of cavities, or enamel erosion, then you either do not have celiac disease, or you have not had it long enough to accrue any damage. Significant gluten sensitivity, in the absence of fully-developed CD, can have the same effect on the teeth.
The bottom line is, IMO, the pathology report you posted does not rule out MC, because the area where the biopsy samples were collected, was poorly selected. It's possible that the report could have valid findings, but it's also very possible that the report simply amounts to a false negative, due to a poorly planned procedure.
Remember, all of this is just my opinion, as a student of MC - I am not a doctor.
Edit: Whoa! I see you added some more information about your teeth, height, and your relatively late maturity. Wow! If that was all the information that I had to go on, I would be forced to argue that you are most definitely a celiac. We are missing something here, (or at least your doctors are). I believe that you are, at the very least, highly gluten sensitive, whether you are symptomatic or not, and regardless of what the "upper" endoscopy biopsy results showed. It would be very interesting to see what Dr. Fine would have to say about your situation. This appears to be a classic example of undiagnosed celiac disease. I would suggest that you ask your doctor for a bone density test. If you have osteopenia, (or worse), that would pretty well clinch the case for celiac disease.
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.
-
no-more-muffins
- Adélie Penguin
- Posts: 90
- Joined: Wed Jun 24, 2009 5:37 pm
The interesting thing too is that my Ttg was a big fat 0. My total IgA was 118, so I know I can make IgA antibodies.
I don't notice any fat or irridescent stains radiating from my stool
How much does a bone density scan usually run? I have (obviously) met my deductible and now I have to pay 20%. The question too is: Can I get my dr. to order the scan? (Maybe my pcp).
So Tex, from the info I have given, would you say that it is more likely that I actually do have celiac rather than MC? (I don't want either, but hey, at this point I actually think celiac sounds better... hopefully there will be no milk allergy.) I would love to consult with Dr. Fine about my symptoms.
And you say you are a student of MC. It made me think: It is too bad that the drs. aren't also students. You know FAR more than they do and I really value your opinion.
I have been following a GF diet for 2 weeks now. I have been dairy free for a couple of days. In your opinion would you stay GF and dairy free as well? I know that is a hard question to answer, but if YOU were ME, what would you do at this point as far as diet goes? What about taking pepto bismol?
Oh, how I wish I had more answers.
I don't notice any fat or irridescent stains radiating from my stool
How much does a bone density scan usually run? I have (obviously) met my deductible and now I have to pay 20%. The question too is: Can I get my dr. to order the scan? (Maybe my pcp).
So Tex, from the info I have given, would you say that it is more likely that I actually do have celiac rather than MC? (I don't want either, but hey, at this point I actually think celiac sounds better... hopefully there will be no milk allergy.) I would love to consult with Dr. Fine about my symptoms.
And you say you are a student of MC. It made me think: It is too bad that the drs. aren't also students. You know FAR more than they do and I really value your opinion.
I have been following a GF diet for 2 weeks now. I have been dairy free for a couple of days. In your opinion would you stay GF and dairy free as well? I know that is a hard question to answer, but if YOU were ME, what would you do at this point as far as diet goes? What about taking pepto bismol?
Oh, how I wish I had more answers.
NMM
Right. There are a lot of confusing test results involved here.
The cost of a DEXA scan should run somewhere over $200, (full cost). Yes, your PCP should order the test - she or he needs to have a baseline scan in your records, anyway, for future reference.
Well, obviously, you don't have fully-developed celiac disease, (which is the only "official" definition of celiac disease), or at least some of the biopsy samples from your "upper" endoscopy exam would have shown extensive villus atrophy. Also, the apparent absence of steatorrhea, (fat in the stool), is further evidence of the lack of mechanical damage to your intestines. A potential MC diagnosis is possible, but certainly not a done deal, at this point. Whatever the problem might be, the lab tests are failing to reveal any clues.
You have too many of the classic signs of damage due to long-term gluten sensitivity, for them to be just a coincidence. If Polly happens to read this, I believe that she will either agree with me, or enumerate the reasons why I am wrong to reach that conclusion, because being a pediatrician, she's much more familiar with the effects of long-term gluten sensitivity on growth and maturity, than I am.
I suspect that you are very gluten sensitive, as evidenced by your pattern of growth, delayed maturity, tooth damage, etc., but you are very atypical, as far as your digestive system "indicators" are concerned.
Unfortunately, Dr. Fine no longer offers patient consultations, but, depending on how your test results came out, (if you had any testing done at Enterolab), he might be willing to answer a few questions, in a followup e-mail, especially since this seems to be such a unique case. Also, he might respond to an e-mail from a colleague, (Polly) - he has done so in the past.
I appreciate the kind words, but really, all of us here are students of MC, and there is a good chance that many/most of us may know more about the practical side of dealing with MC, (such as how to treat it, how to live with it, etc.), than most of the GI docs, at this point in time. Of course, many of the GI docs are not students of MC, simply because they already have their sheepskin hanging on the wall, officially certifying them as "experts" in the specialty of gastrointestinal diseases. 
If I were in your shoes, I honestly believe that I would order some tests from Enterolab, to determine once and for all, if gluten sensitivity is an issue, and I would proceed form there. I have 100% confidence in the accuracy of that particular test. Also, the gene test might help to shed some light on your situation.
If I didn't want to have any of those tests done, then I would manage my diet according to how my body reacts to it. I'm not sure if the full Pepto-Bismol treatment would be advisable, unless you have fairly serious D. Constipation might be a risk at that level of treatment. Of course, you could adjust the dose downward, as needed. Unless you happen to be intolerant of it, it shouldn't hurt anything to use it.
Are you by any chance taking Caltrate? Some members have found that it controls their D, so that could be why D is not a serious problem for you.
As you continue to explore, eventually you'll be able to figure out exactly what's going on. At some point in your research, all of the pieces of the puzzle will begin to fall into place, and the light bulb will come on. There's a reason for everything.
Tex
The cost of a DEXA scan should run somewhere over $200, (full cost). Yes, your PCP should order the test - she or he needs to have a baseline scan in your records, anyway, for future reference.
Well, obviously, you don't have fully-developed celiac disease, (which is the only "official" definition of celiac disease), or at least some of the biopsy samples from your "upper" endoscopy exam would have shown extensive villus atrophy. Also, the apparent absence of steatorrhea, (fat in the stool), is further evidence of the lack of mechanical damage to your intestines. A potential MC diagnosis is possible, but certainly not a done deal, at this point. Whatever the problem might be, the lab tests are failing to reveal any clues.
You have too many of the classic signs of damage due to long-term gluten sensitivity, for them to be just a coincidence. If Polly happens to read this, I believe that she will either agree with me, or enumerate the reasons why I am wrong to reach that conclusion, because being a pediatrician, she's much more familiar with the effects of long-term gluten sensitivity on growth and maturity, than I am.
I suspect that you are very gluten sensitive, as evidenced by your pattern of growth, delayed maturity, tooth damage, etc., but you are very atypical, as far as your digestive system "indicators" are concerned.
Unfortunately, Dr. Fine no longer offers patient consultations, but, depending on how your test results came out, (if you had any testing done at Enterolab), he might be willing to answer a few questions, in a followup e-mail, especially since this seems to be such a unique case. Also, he might respond to an e-mail from a colleague, (Polly) - he has done so in the past.
I appreciate the kind words, but really, all of us here are students of MC, and there is a good chance that many/most of us may know more about the practical side of dealing with MC, (such as how to treat it, how to live with it, etc.), than most of the GI docs, at this point in time. Of course, many of the GI docs are not students of MC, simply because they already have their sheepskin hanging on the wall, officially certifying them as "experts" in the specialty of gastrointestinal diseases.
If I were in your shoes, I honestly believe that I would order some tests from Enterolab, to determine once and for all, if gluten sensitivity is an issue, and I would proceed form there. I have 100% confidence in the accuracy of that particular test. Also, the gene test might help to shed some light on your situation.
If I didn't want to have any of those tests done, then I would manage my diet according to how my body reacts to it. I'm not sure if the full Pepto-Bismol treatment would be advisable, unless you have fairly serious D. Constipation might be a risk at that level of treatment. Of course, you could adjust the dose downward, as needed. Unless you happen to be intolerant of it, it shouldn't hurt anything to use it.
Are you by any chance taking Caltrate? Some members have found that it controls their D, so that could be why D is not a serious problem for you.
As you continue to explore, eventually you'll be able to figure out exactly what's going on. At some point in your research, all of the pieces of the puzzle will begin to fall into place, and the light bulb will come on. There's a reason for everything.
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.
-
no-more-muffins
- Adélie Penguin
- Posts: 90
- Joined: Wed Jun 24, 2009 5:37 pm
Thanks Tex, I actually got my enterolab kit yesterday and I am just waiting for Monday so I can send in my sample. I chose to not do the gene testing because while it will give me some info, it won't really affect my diet. I just have spent SO much money on tests that I decided to go straight for the intolerances. I am doing gluten, milk, soy, yeast and egg.
I have not been taking caltrate.
Another thing that is interesting to note is that my CBCs have all come back normal and I am not at all anemic. My b12 was fine. All my metabolic tests came back normal, yet I am obviously sick.
Polly, if you read this, please respond. If you would be able to email Dr. Fine I would very much appreciate it. I can write a list of all my symptoms etc. so that it will be all in one list.
I'll have to make an appt. with my pcp after I get my results from enterolab.
I have not been taking caltrate.
Another thing that is interesting to note is that my CBCs have all come back normal and I am not at all anemic. My b12 was fine. All my metabolic tests came back normal, yet I am obviously sick.
Polly, if you read this, please respond. If you would be able to email Dr. Fine I would very much appreciate it. I can write a list of all my symptoms etc. so that it will be all in one list.
I'll have to make an appt. with my pcp after I get my results from enterolab.
I was thinking that you had mentioned ordering some tests from Enterolab, but I wasn't sure, because when I looked back, I couldn't find that info, and I can't trust my memory for keeping up with all the details in everyone's situation. (Doctors have a big advantage, since they have a copy of your complete file available to them, right there on their desk). Those test results should be very enlightening, and I agree that while interesting, the gene test results would not affect your diet choices, so that test is not particularly important at this point.
Tex
Exactly. Your situation presents some real diagnostic challenges.no-more-muffins wrote:Another thing that is interesting to note is that my CBCs have all come back normal and I am not at all anemic. My b12 was fine. All my metabolic tests came back normal, yet I am obviously sick.
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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no-more-muffins
- Adélie Penguin
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The funny thing is that it is actually kind of "normal" to be abnormal. It seems that because gluten and other intolerances have such a different effect on different people it is almost normal to be abnormal, lol. Unfortunately to be diagnosed, it does present even more of a challenge.
And, would you say it is save for me to take ibuprofen?
And, would you say it is save for me to take ibuprofen?
Well, I would have to agree that around here it's definitely the "norm".
The only "safe" OTC pain killer is acetaminophen, (Tylenol). The opiate-based pain killers will not trigger MC, but they require a prescription, of course.
Tex
Not knowing if you have any of the genes that predispose to MC, I would have to say no, because in individuals who have certain genes that predispose to MC, NSAIDs can trigger MC, and ibuprofen is an NSAID. There's certainly no guarantee that it would trigger MC, but it can, and does, happen. NSAID use triggered MC for quite a few of our members, in their opinion.no-more-muffins wrote:And, would you say it is save for me to take ibuprofen?
The only "safe" OTC pain killer is acetaminophen, (Tylenol). The opiate-based pain killers will not trigger MC, but they require a prescription, of course.
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.
NMM,
I know you probably sent your Enterolab sample off but you can always upgrade it. You may want to consider geting the malabsorption test and the lactoferrin/colitis test. Since your stools are still a bit strange the malabsorption test will give you an idea of the amount of intestinal damage, if any, that has occuured. The colitis test can rule out UC or Crohn's, but not MC. A high yeast value may be indicative of Crohn's - in fact, Dr. Fine is going to be changing his yeast test to be used to identify the possibility of Crohn's.
In one of our discussions at camp Dr. Fine talked about the antibody results - he thinks very high results (like over 300) are proabably indicative of celiac - lower values most likely gluten intolerance. But he was very clear that both CD and gluten intolerance can both cause malabsorption and other serious side effects. I think many of us who have been so sick were convinced we had CD but we had gluten intolerance.
I was actually glad I had the gene test - it put to rest the idea that I had undiagnosed CD. I am also short (4'11") and have a mouth full of cavities from childhood. I was certain I was celiac but turns out I am a double DQ1 and don't have either celiac gene. But, I know all of these tests are expensive so I understand your hesitation. You could see if insurance will cover it - I have learned that they are more likley to pay of your docotor orders it rather than ordering it yourself.
Mary Beth
I know you probably sent your Enterolab sample off but you can always upgrade it. You may want to consider geting the malabsorption test and the lactoferrin/colitis test. Since your stools are still a bit strange the malabsorption test will give you an idea of the amount of intestinal damage, if any, that has occuured. The colitis test can rule out UC or Crohn's, but not MC. A high yeast value may be indicative of Crohn's - in fact, Dr. Fine is going to be changing his yeast test to be used to identify the possibility of Crohn's.
In one of our discussions at camp Dr. Fine talked about the antibody results - he thinks very high results (like over 300) are proabably indicative of celiac - lower values most likely gluten intolerance. But he was very clear that both CD and gluten intolerance can both cause malabsorption and other serious side effects. I think many of us who have been so sick were convinced we had CD but we had gluten intolerance.
I was actually glad I had the gene test - it put to rest the idea that I had undiagnosed CD. I am also short (4'11") and have a mouth full of cavities from childhood. I was certain I was celiac but turns out I am a double DQ1 and don't have either celiac gene. But, I know all of these tests are expensive so I understand your hesitation. You could see if insurance will cover it - I have learned that they are more likley to pay of your docotor orders it rather than ordering it yourself.
Mary Beth
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no-more-muffins
- Adélie Penguin
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