I saw my GI today for a follow up. He seems to still think that i may actually have Crohn's instead of MC. He does not seem to trust the colonoscopy results from my prior GI and wants to do another one and also do several biopsies as well while in there. He felt that since the Asacol and Entocort started off helping me but lost effect meant that we were on the right track with Inflammatory Bowel Disease and NOT IBS (thank you!!!!) but he wants to see what is going on before moving on to the next course of treatment. I am scheduled for another colonoscopy on 3/4....lovely. He was also very concerned with my weight loss while on the Entocort.
I also got my Enterolab results in. I do have Gluten Intolerance so i will be starting my Gluten Free diet asap! One thing i wasn't quite sure of what it meant in my results is for the Fecal Antitissue Transglutaminase. It says 'You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivite'. What exactly does this mean?
Thanks for all your help!!!
GI Appt Today and Enterolab Results In...
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GI Appt Today and Enterolab Results In...
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Re: GI Appt Today and Enterolab Results In...
Does your GI Dr believe in testing for Small Bowel Intestinal Overgrowth, like via a lactulose breath test (testing for both Methane/Hydrogen)? If I've already asked, sorry. I forget who I've asked and who I haven't.ErinD wrote:I saw my GI today for a follow up. He seems to still think that i may actually have Crohn's instead of MC. He does not seem to trust the colonoscopy results from my prior GI and wants to do another one and also do several biopsies as well while in there. He felt that since the Asacol and Entocort started off helping me but lost effect meant that we were on the right track with Inflammatory Bowel Disease and NOT IBS (thank you!!!!) but he wants to see what is going on before moving on to the next course of treatment. I am scheduled for another colonoscopy on 3/4....lovely. He was also very concerned with my weight loss while on the Entocort.
I also got my Enterolab results in. I do have Gluten Intolerance so i will be starting my Gluten Free diet asap! One thing i wasn't quite sure of what it meant in my results is for the Fecal Antitissue Transglutaminase. It says 'You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivite'. What exactly does this mean?
Thanks for all your help!!!
Are any other blood tests showing any (even small) abnormalities? Specfically Liver Enzyme tests and CBC (complete blood count).
Can you copy the entire results from the results email? It'll help to figure out what it's saying. My guess is that you showed Anti Ttg, but I'd still like to see everything.
Thanks,
Mike
Hi Mike,
Here are my results, i just did the Gluten Sensitivity Tests through Enterolab:
Fecal Antigliadin IgA 14 (Normal Range <10 Units)
Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)
Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)
My doctor has not ordered a breath test but he did do another complete blood work up today.
Here are my results, i just did the Gluten Sensitivity Tests through Enterolab:
Fecal Antigliadin IgA 14 (Normal Range <10 Units)
Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)
Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)
My doctor has not ordered a breath test but he did do another complete blood work up today.
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Erin,
Regarding your question about tTG: Tissue transglutaminase is an enzyme that is known to be the autoantigen in coeliac disease. IOW, it's a normal enzyme tissue which is a target of autoimmune reactions in celiacs, due to a sensitivity to dietary gluten.
When they say "You have an autoimmune reaction to the human enzyme tissue transglutaminase", secondary to dietary gluten sensitivity", they mean that the presence of gluten in your intestines, triggers a reaction which causes your body to attack itself.
I'm not a doctor, of course, but I see no logical reason for your doctor to suspect Crohn's, in your case. I'm not sure what his agenda might be, but I think that he's on a wild goose chase. Unless you're passing blood, the odds of you having Crohn's, (based on your symptoms, and your Enterolab test results), are slim to none, IMO.
I'm not sure what to think of his request for another colonoscopy. He may have good intentions, or he may just want to satisfy his own curiosity - IOW, sort of use you as a guinea pig to conduct a little research on IBDs. If he doesn't trust the other GI doc's diagnosis, he should be able to request samples of the existing biopsies, or simply obtain permission to examine the slides from the original biopsies, and make his own determination from them, (as a second opinion), thus sparing you a second, (and unnecessary), colonoscopy. A second exam seems like an unnecessary imposition, for such an intrusive test - a test which is certainly not without risk. IOW, if I were in your shoes, that request would probably strike me as a callous disregard for my personal comfort and safety. If it has been five or more years since your last colonoscopy, then it's certainly not an unreasonable request, but I gather that your last colonoscopy was done within the last year or two, (you probably mentioned it, but I don't remember).
Tex
Regarding your question about tTG: Tissue transglutaminase is an enzyme that is known to be the autoantigen in coeliac disease. IOW, it's a normal enzyme tissue which is a target of autoimmune reactions in celiacs, due to a sensitivity to dietary gluten.
When they say "You have an autoimmune reaction to the human enzyme tissue transglutaminase", secondary to dietary gluten sensitivity", they mean that the presence of gluten in your intestines, triggers a reaction which causes your body to attack itself.
I'm not a doctor, of course, but I see no logical reason for your doctor to suspect Crohn's, in your case. I'm not sure what his agenda might be, but I think that he's on a wild goose chase. Unless you're passing blood, the odds of you having Crohn's, (based on your symptoms, and your Enterolab test results), are slim to none, IMO.
I'm not sure what to think of his request for another colonoscopy. He may have good intentions, or he may just want to satisfy his own curiosity - IOW, sort of use you as a guinea pig to conduct a little research on IBDs. If he doesn't trust the other GI doc's diagnosis, he should be able to request samples of the existing biopsies, or simply obtain permission to examine the slides from the original biopsies, and make his own determination from them, (as a second opinion), thus sparing you a second, (and unnecessary), colonoscopy. A second exam seems like an unnecessary imposition, for such an intrusive test - a test which is certainly not without risk. IOW, if I were in your shoes, that request would probably strike me as a callous disregard for my personal comfort and safety. If it has been five or more years since your last colonoscopy, then it's certainly not an unreasonable request, but I gather that your last colonoscopy was done within the last year or two, (you probably mentioned it, but I don't remember).
Tex
Hi Tex,
thanks for your response. I wasnt sure what that meant on the Entorolab report, now i do
I am not sure why he is suspecting Crohn's either. I had my last colonoscopy done in October of 2007 so really only a few months ago. I think the only reason he may not trust the other GI's reports, etc is she is not a very reputable (unfortunately i didn't find that out until AFTER the fact, of course went blindly on my PCP's recommendation) doctor and has actually been suspended from practice recently. strangely enough she, and my records can't be located. But still, like you said, it is not something i particularly want to go through again and i don't know what would be seen differently this time.
thanks for your response. I wasnt sure what that meant on the Entorolab report, now i do
I am not sure why he is suspecting Crohn's either. I had my last colonoscopy done in October of 2007 so really only a few months ago. I think the only reason he may not trust the other GI's reports, etc is she is not a very reputable (unfortunately i didn't find that out until AFTER the fact, of course went blindly on my PCP's recommendation) doctor and has actually been suspended from practice recently. strangely enough she, and my records can't be located. But still, like you said, it is not something i particularly want to go through again and i don't know what would be seen differently this time.
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Also...
I am sure there is an explanation someplace around but i can't find it...is it common to have gluten intolerance and not have it bother me until now? I had always eaten tons of bread products etc prior to becoming ill last year with no problems. does it just lie dormant until something triggers it off?
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Erin,
Yes, your experience was pretty much like what we all experienced. Everything was fine, and we ate what we liked, until one day when the D started, and then our lives were changed forever. Evidently, MC can be triggered by many things, meds, (NSAIDs, proton pump inhibitors, antibiotics, etc), stopping a smoking habit, the leaky gut syndrome, enteritis of any origin, extreme, (or chronic), stress, and various other things, some of which have probably not even been discovered yet. The leaky gut syndrome, for example can be caused by any and all of those same triggers, or it can be caused by the excessive ingestion of certain food items, such as alcohol, or sugar, or certain proteins such as the gliadin fraction of gluten, or casein, or various other proteins which are characterized by similar polymer chains.
LGS develops like most allergies, by slowly becoming worse with each occurrence, until eventually, it takes very little of a trigger food to cause the tight junctions to open, resulting in a systemic reaction. The outcome is that once this point is reached, then we are normally stuck with the resulting sensitivity for the rest of our lives, unless we avoid the offending trigger.
Many in the general population carry the genes which make them susceptible to gluten sensitivity, but for most of them, the condition is never activated, so they never develop a sensitivity, (at least, not on a level where they present with clinical symptoms). So far, I don't believe that we have any members here, who do not have at least one gene which makes them vulnerable to gluten sensitivity, (that doesn't necessarily mean that every one of us is gluten sensitive, however).
It's interesting to note that celiacs, on the other hand, do not always have a copy of one of the so-called "celiac genes", (the DQ2, or DQ8 genes), and yet they are celiacs, according to the classic diagnostic tests. In fact, quite a few of them refer to themselves as members of a "double DQ1" group. They have gene molecular analysis results such as this, for example:
HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 0503
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)
Many of them also have multiple intolerances, (besides gluten), and they agree with what many of us here believe, that there really is no significant difference between gluten sensitivity, and celiac disease, except in the minds of certain doctors, who base their opinions on the outcome of the classic celiac tests, alone. The bottom line is, we all have to avoid gluten, and if it quacks like a duck, walks like a duck, etc.
Sorry, I got sidetracked there, but what I'm trying to get to is the fact that even many celiacs are either assymptomatic, (they have the disease but don't display any symptoms), or they are latent celiacs, (they have the disease, but they don't have any symptoms until the intestinal damage reaches a level where it begins to cause reactions), or they develop the disease later in life, after some event triggers it.
Regarding your GI doc's request for a new colonoscopy: well, if the previous GI doc was suspended for professional reasons, that sheds a whole different light on the matter. Usually a pathologist makes the actual diagnosis, by examining the biopsy samples, but some GI docs ignore that diagnosis and make their own "diagnosis". If that's what happened, and it's not possible to discover who the pathologist was who originally examined the samples, (to verify what the actual pathologist's diagnosis was), or if the original GI doc did her own pathology work, then I would have to say that without another colonoscopy, your diagnosis is guesswork, at this point, so your new GI doc's request is certainly reasonable, (and advisable), especially if you want to get a script for meds to treat the MC, (rather than to try to rely on diet alone to treat it).
Tex
Yes, your experience was pretty much like what we all experienced. Everything was fine, and we ate what we liked, until one day when the D started, and then our lives were changed forever. Evidently, MC can be triggered by many things, meds, (NSAIDs, proton pump inhibitors, antibiotics, etc), stopping a smoking habit, the leaky gut syndrome, enteritis of any origin, extreme, (or chronic), stress, and various other things, some of which have probably not even been discovered yet. The leaky gut syndrome, for example can be caused by any and all of those same triggers, or it can be caused by the excessive ingestion of certain food items, such as alcohol, or sugar, or certain proteins such as the gliadin fraction of gluten, or casein, or various other proteins which are characterized by similar polymer chains.
LGS develops like most allergies, by slowly becoming worse with each occurrence, until eventually, it takes very little of a trigger food to cause the tight junctions to open, resulting in a systemic reaction. The outcome is that once this point is reached, then we are normally stuck with the resulting sensitivity for the rest of our lives, unless we avoid the offending trigger.
Many in the general population carry the genes which make them susceptible to gluten sensitivity, but for most of them, the condition is never activated, so they never develop a sensitivity, (at least, not on a level where they present with clinical symptoms). So far, I don't believe that we have any members here, who do not have at least one gene which makes them vulnerable to gluten sensitivity, (that doesn't necessarily mean that every one of us is gluten sensitive, however).
It's interesting to note that celiacs, on the other hand, do not always have a copy of one of the so-called "celiac genes", (the DQ2, or DQ8 genes), and yet they are celiacs, according to the classic diagnostic tests. In fact, quite a few of them refer to themselves as members of a "double DQ1" group. They have gene molecular analysis results such as this, for example:
HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 0503
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)
Many of them also have multiple intolerances, (besides gluten), and they agree with what many of us here believe, that there really is no significant difference between gluten sensitivity, and celiac disease, except in the minds of certain doctors, who base their opinions on the outcome of the classic celiac tests, alone. The bottom line is, we all have to avoid gluten, and if it quacks like a duck, walks like a duck, etc.
Sorry, I got sidetracked there, but what I'm trying to get to is the fact that even many celiacs are either assymptomatic, (they have the disease but don't display any symptoms), or they are latent celiacs, (they have the disease, but they don't have any symptoms until the intestinal damage reaches a level where it begins to cause reactions), or they develop the disease later in life, after some event triggers it.
Regarding your GI doc's request for a new colonoscopy: well, if the previous GI doc was suspended for professional reasons, that sheds a whole different light on the matter. Usually a pathologist makes the actual diagnosis, by examining the biopsy samples, but some GI docs ignore that diagnosis and make their own "diagnosis". If that's what happened, and it's not possible to discover who the pathologist was who originally examined the samples, (to verify what the actual pathologist's diagnosis was), or if the original GI doc did her own pathology work, then I would have to say that without another colonoscopy, your diagnosis is guesswork, at this point, so your new GI doc's request is certainly reasonable, (and advisable), especially if you want to get a script for meds to treat the MC, (rather than to try to rely on diet alone to treat it).
Tex
The original pathologist should have the original slide. The new GI doc can get a copy and have his pathologist look at it. No need to have new colonoscopy. At least that is what my new GI doc did. Made sense to me. He said he suspected Crohn's and wanted capsule endoscopy. Insurance made me do regular endoscopy first. Then I had the capsule. All Negative!!!! Just MC. What a waste. But of course they would say they don't know that until they do the tests. Erin, don't be afraid to ask questions of your doctor. Ask him if he can just have his pathologist look at the original colonoscopy slide. Sure would save you the risk and money and time.
Pat
Pat
Erin,
To expand on what Pat posted, just in case your new doc might balk at having to do the legwork/phonework required to locate the original pathologist, I would strongly suggest that you get a copy of the pathology report on that endoscopy exam from the records department at the hospital/clinic, where the original colonoscopy was done. (They may call themselves the "Release of Records" department, for example - that was the case at the hospital where most of my records are located). You'll need to sign a request form, but a copy of the report should be free of charge to the patient, (attorneys are charged a fee, for example, but doctors and patients are not - I'm not sure about doctors from another institution, however). You need to know the date of the exam, when you request the copy of the report. In fact, I would request a copy of both the endoscopy report, (the GI's colonoscopy exam report), and the pathology report. Even if the GI doc herself is missing, those records should be there. If they're not, there's some serious hanky-panky going on at that hospital.
The pathologist's report will show exactly what was found during the examination of the slides under the microscope, (provided you can understand doctorspeak). If you know how to read it, you don't even need a GI doc to interpret it. Also, by reading the endoscopy report, (written by the original GI doc), you will be able to make a reasonable judgment concerning whether or not the exam itself was properly conducted, and whether the biopsy samples were taken from appropriate areas, etc., and you will see the remarks made about the general appearance of the epithelia of your colon, (for example, any mention of lesions that might be related to Crohn's). Without any visible lesions, nor any mention of related issues in the pathologist's report, there is absolutely no reason to suspect Crohn's.
If I were in your shoes, I would request those reports ASAP, and then you can go from there to decide if another colonoscopy is warranted. IOW, you will then have the information necessary to make an informed decision, rather than leaving it up to your GI doc to decide.
Tex
To expand on what Pat posted, just in case your new doc might balk at having to do the legwork/phonework required to locate the original pathologist, I would strongly suggest that you get a copy of the pathology report on that endoscopy exam from the records department at the hospital/clinic, where the original colonoscopy was done. (They may call themselves the "Release of Records" department, for example - that was the case at the hospital where most of my records are located). You'll need to sign a request form, but a copy of the report should be free of charge to the patient, (attorneys are charged a fee, for example, but doctors and patients are not - I'm not sure about doctors from another institution, however). You need to know the date of the exam, when you request the copy of the report. In fact, I would request a copy of both the endoscopy report, (the GI's colonoscopy exam report), and the pathology report. Even if the GI doc herself is missing, those records should be there. If they're not, there's some serious hanky-panky going on at that hospital.
The pathologist's report will show exactly what was found during the examination of the slides under the microscope, (provided you can understand doctorspeak). If you know how to read it, you don't even need a GI doc to interpret it. Also, by reading the endoscopy report, (written by the original GI doc), you will be able to make a reasonable judgment concerning whether or not the exam itself was properly conducted, and whether the biopsy samples were taken from appropriate areas, etc., and you will see the remarks made about the general appearance of the epithelia of your colon, (for example, any mention of lesions that might be related to Crohn's). Without any visible lesions, nor any mention of related issues in the pathologist's report, there is absolutely no reason to suspect Crohn's.
If I were in your shoes, I would request those reports ASAP, and then you can go from there to decide if another colonoscopy is warranted. IOW, you will then have the information necessary to make an informed decision, rather than leaving it up to your GI doc to decide.
Tex
Thanks for all the info!
Its funny how my family is reacting to the Enterolab results. As soon as they came back with Gluten Intolerance found i got from my husband, 'but you have eaten that stuff for years with no problems?' and from my parents 'well nobody in OUR family has problems with Gluten!' Don't get me wrong, they have been TREMENDOUS with support but its still funny in a way to see their reactions sometimes....
As for my prior GI and colonscopy. When i switched to this new doctor i had to go to the hospital i had all my proceedures done at to get all of my records since i couldn't locate the old GI. They gave me a pretty disc with results, images, etc of every single procedure i had done throughout this whole process EXCEPT my colonoscopy and upper endoscopy! No explanation as to why. The doctor was suspended for falsifying patient documents and reports, having her DAUGHTER make diagnosis for her and for studying other people's records that were not her patient. Lovely doctor...
Kinda Scary!
Its funny how my family is reacting to the Enterolab results. As soon as they came back with Gluten Intolerance found i got from my husband, 'but you have eaten that stuff for years with no problems?' and from my parents 'well nobody in OUR family has problems with Gluten!' Don't get me wrong, they have been TREMENDOUS with support but its still funny in a way to see their reactions sometimes....
As for my prior GI and colonscopy. When i switched to this new doctor i had to go to the hospital i had all my proceedures done at to get all of my records since i couldn't locate the old GI. They gave me a pretty disc with results, images, etc of every single procedure i had done throughout this whole process EXCEPT my colonoscopy and upper endoscopy! No explanation as to why. The doctor was suspended for falsifying patient documents and reports, having her DAUGHTER make diagnosis for her and for studying other people's records that were not her patient. Lovely doctor...
Kinda Scary!
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Wow! Probably their legal counsel advised them to sequester all her reports, due to all the legal implications. That's just plain bad luck. You've probably already done about all you can do on that issue. There's not much point in 
She does sound like a real jewel. That's sad.
Tex
She does sound like a real jewel. That's sad.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.
Erin,
Try going directly to the pathologist. That is what I did. If you don't know who they are the hospital should be able to tell you who was used. He/She should have the original slides and reports. Hope that works.
Also, my doctor said that many things can trigger the gluten intolerance. Surgery, a virus, stress. Amazing! I know an 80+ year old lady from church who had surgery and bingo she became gluten intolerant. Changed her life at a late date, but she is on the diet and as long as she eats GF no trouble. We now have gluten free communion. Ha!
Pat
Try going directly to the pathologist. That is what I did. If you don't know who they are the hospital should be able to tell you who was used. He/She should have the original slides and reports. Hope that works.
Also, my doctor said that many things can trigger the gluten intolerance. Surgery, a virus, stress. Amazing! I know an 80+ year old lady from church who had surgery and bingo she became gluten intolerant. Changed her life at a late date, but she is on the diet and as long as she eats GF no trouble. We now have gluten free communion. Ha!
Pat