Source of specimen:
A: Ileum
B: Cecum
C: Ascending colon
D: Transverse
E: Desc. Colon
F: Sigmoid
G: Rectum
Ileum, biopsy, specimen A: Unremarkable ileal mucosa with prominent lymphoid component but no diagnostic evidence of celiac, active ileitis, or microorganisms.
B-G: Essentially unremarkable colonic mucosa with no significant active/ microscopic colitis. Negative for microorganisms.
Any thoughts?
Thanks,
Lisa
pathology report - thoughts?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Lisa,
Thanks for posting that information. Here are my thoughts, and remember - I'm not a doctor.
Since the pathologist only listed his or her interpretations, rather than actual lymphocyte counts, we don't have any solid numbers to work with, but it's obvious that your lymphocyte counts for the biopsy samples taken from your colon, (though not necessarily the one from your ileum), were below 20 lymphocytes per 100 enterocytes, which allowed him/her to conclude that there was "no significant active/microscopic colitis". IOW, the lymphocyte count has to be over 20, to justify an official diagnosis of "classic" LC.
Note that the report says "no significant active/microscopic colitis". If the lymphocyte count had been normal, (around 5 lymphocytes per 100 enterocytes), there would have been no need to qualify that observation with the terms "significant" or "active". In that case the report would have simply said "no indications of microscopic colitis", or something to that effect. Pathologists, (and doctors in general), don't usually have time to waste using unnecessary words in their reports, so there is almost certainly a reason why those words were included. I'm pretty sure that the pathologist's choice of wording was deliberate, and what it actually implies is that your lymphocyte count was still elevated, but below the threshold of 20, (20 is the arbitrary minimum number required for an official diagnosis of classic LC).
However, note that a less common form of LC, (paucicellular LC), is indicated by a lymphocyte count between 5 and 20 lymphocytes per enterocyte. Paucicellular LC is not even on the radar of most pathologists and GI specialists. The diagnostic marker thresholds for paucicellular LC need to be recognized by the pathologists of this world, and incorporated into their diagnostic criteria. Currently, they are almost universally overlooking it.
I believe that this phrase, "Unremarkable ileal mucosa with prominent lymphoid component but no diagnostic evidence of celiac, active ileitis, or microorganisms. ", illuminates the problem with the pathologist's analysis of your biopsy samples. "Prominent lymphoid component" suggests significant lymphocyte presence, (IOW, a relatively high lymphocyte count), in the terminal ileum. This is a common location for inflammation associated with LC, but many doctors don't seem to realize it. (They've been incorrectly taught that LC is a disease of the colon).
Ileitis is a shortened medical term for "Crohn's ileitis". The pathologist noted the presence of an elevated lymphocyte presence in the terminal ileum, and couldn't see any other markers that would indicate Crohn's disease, so he or she made that notation to rule out Crohn's disease, but failed to associate the lymphocyte infiltration in the ileum with MC.
In my strictly unprofessional opinion, you still have LC, but it's most active in your terminal ileum. The LC in your colon has been degraded to a less common type, (paucicellular LC). Obviously, something is still causing your symptoms, and it's almost certainly the inflammation in your ileum and your colon. Research has shown that lymphocyte counts do not correlate with the intensity of symptoms for someone with LC. IOW, some people with minimal lymphocyte counts, have symptoms which are more severe than other patients who have relatively high lymphocyte counts. Most doctors aren't aware of that fact, though, and they mistakenly think that a low lymphocyte count means a "mild" case.
With most of the inflammation in your ileum, your doctors simply don't know what to call it, or how to deal with it, because it doesn't fit what they have learned in their training. IOW, apparently, your doctors simply don't realize that LC can affect the ileum, in the same way that it can affect the colon, and they don't realize that the elevated level of lymphocytes in your colon might also be contributing to your symptoms, even though the count is technically below the level considered to be a minimum for a diagnosis of classic LC.
Also, note that the terminal ileum is a critical part of the intestines, and if it's inflamed, it can cause all sorts of issues. For example, the terminal ileum is where the bile fatty acids are reabsorbed, (along with vitamin B-12, and probably a few other important elements). If the bile acids are not absorbed in the terminal ileum, they will usually trigger diarrhea when they pass into the colon, again, making symptoms worse. I have no proof, of course, but I'll bet a GF cookie, that what I have described here defines the source of your symptoms.
Tex
Thanks for posting that information. Here are my thoughts, and remember - I'm not a doctor.
Since the pathologist only listed his or her interpretations, rather than actual lymphocyte counts, we don't have any solid numbers to work with, but it's obvious that your lymphocyte counts for the biopsy samples taken from your colon, (though not necessarily the one from your ileum), were below 20 lymphocytes per 100 enterocytes, which allowed him/her to conclude that there was "no significant active/microscopic colitis". IOW, the lymphocyte count has to be over 20, to justify an official diagnosis of "classic" LC.
Note that the report says "no significant active/microscopic colitis". If the lymphocyte count had been normal, (around 5 lymphocytes per 100 enterocytes), there would have been no need to qualify that observation with the terms "significant" or "active". In that case the report would have simply said "no indications of microscopic colitis", or something to that effect. Pathologists, (and doctors in general), don't usually have time to waste using unnecessary words in their reports, so there is almost certainly a reason why those words were included. I'm pretty sure that the pathologist's choice of wording was deliberate, and what it actually implies is that your lymphocyte count was still elevated, but below the threshold of 20, (20 is the arbitrary minimum number required for an official diagnosis of classic LC).
However, note that a less common form of LC, (paucicellular LC), is indicated by a lymphocyte count between 5 and 20 lymphocytes per enterocyte. Paucicellular LC is not even on the radar of most pathologists and GI specialists. The diagnostic marker thresholds for paucicellular LC need to be recognized by the pathologists of this world, and incorporated into their diagnostic criteria. Currently, they are almost universally overlooking it.
I believe that this phrase, "Unremarkable ileal mucosa with prominent lymphoid component but no diagnostic evidence of celiac, active ileitis, or microorganisms. ", illuminates the problem with the pathologist's analysis of your biopsy samples. "Prominent lymphoid component" suggests significant lymphocyte presence, (IOW, a relatively high lymphocyte count), in the terminal ileum. This is a common location for inflammation associated with LC, but many doctors don't seem to realize it. (They've been incorrectly taught that LC is a disease of the colon).
Ileitis is a shortened medical term for "Crohn's ileitis". The pathologist noted the presence of an elevated lymphocyte presence in the terminal ileum, and couldn't see any other markers that would indicate Crohn's disease, so he or she made that notation to rule out Crohn's disease, but failed to associate the lymphocyte infiltration in the ileum with MC.
In my strictly unprofessional opinion, you still have LC, but it's most active in your terminal ileum. The LC in your colon has been degraded to a less common type, (paucicellular LC). Obviously, something is still causing your symptoms, and it's almost certainly the inflammation in your ileum and your colon. Research has shown that lymphocyte counts do not correlate with the intensity of symptoms for someone with LC. IOW, some people with minimal lymphocyte counts, have symptoms which are more severe than other patients who have relatively high lymphocyte counts. Most doctors aren't aware of that fact, though, and they mistakenly think that a low lymphocyte count means a "mild" case.
With most of the inflammation in your ileum, your doctors simply don't know what to call it, or how to deal with it, because it doesn't fit what they have learned in their training. IOW, apparently, your doctors simply don't realize that LC can affect the ileum, in the same way that it can affect the colon, and they don't realize that the elevated level of lymphocytes in your colon might also be contributing to your symptoms, even though the count is technically below the level considered to be a minimum for a diagnosis of classic LC.
Also, note that the terminal ileum is a critical part of the intestines, and if it's inflamed, it can cause all sorts of issues. For example, the terminal ileum is where the bile fatty acids are reabsorbed, (along with vitamin B-12, and probably a few other important elements). If the bile acids are not absorbed in the terminal ileum, they will usually trigger diarrhea when they pass into the colon, again, making symptoms worse. I have no proof, of course, but I'll bet a GF cookie, that what I have described here defines the source of your symptoms.
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.
Thank you so, so much, Tex. So you think that it is still MC/ LC but in the ileum? If that is true is there a way to test for it there assuming they still have the tissues to work with? Do you think I could ask the pathologist himself for the actual numbers? What do you think should be my next step? I am going to at least do everything I can to stay on the entocort at a full 9 mg.
At the moment I have a doctor who I used to really have faith in but who I now think doesn't really care what I have to say, so I am going to have to see if I can talk to my internist (who I have been going to for many years and who I trust) next week to see if either she can help me or recommend someone who will listen to what I think.
I am very and eternally grateful to you.
Lisa
At the moment I have a doctor who I used to really have faith in but who I now think doesn't really care what I have to say, so I am going to have to see if I can talk to my internist (who I have been going to for many years and who I trust) next week to see if either she can help me or recommend someone who will listen to what I think.
I am very and eternally grateful to you.
Lisa
This is what I wrote:
These are my questions:
For the first conclusion, it says "unremarkable ileal mucosa with prominent lymphoid component but no diagnostic evidence of celiac disease, active ileitis, or microorganisms."
Questions - did he look for microscopic colitis in the ileum? And what does prominent lymphoid component mean? Is there a number of lymphocytes per enterocyte? I thought that was the standard for microscopic colitis - anything above 20 per 100 is MC. If that test to see the levels was not done, is it possible to do it now?
For the second, it says "no significant active/ microscopic colitis." I am just wondering again, what the lymphocyte per entercyte count was, because if it's over 20 then it would be MC but if it's between 5 and 20 it could be another kind of MC, called paucicellular MC. If this level testing wasn't done is there a way to test it to get these numbers? Why the word significant? Does that mean there was some MC? If not, wouldn't he just say no MC instead of adding "significant active."
These are my questions:
For the first conclusion, it says "unremarkable ileal mucosa with prominent lymphoid component but no diagnostic evidence of celiac disease, active ileitis, or microorganisms."
Questions - did he look for microscopic colitis in the ileum? And what does prominent lymphoid component mean? Is there a number of lymphocytes per enterocyte? I thought that was the standard for microscopic colitis - anything above 20 per 100 is MC. If that test to see the levels was not done, is it possible to do it now?
For the second, it says "no significant active/ microscopic colitis." I am just wondering again, what the lymphocyte per entercyte count was, because if it's over 20 then it would be MC but if it's between 5 and 20 it could be another kind of MC, called paucicellular MC. If this level testing wasn't done is there a way to test it to get these numbers? Why the word significant? Does that mean there was some MC? If not, wouldn't he just say no MC instead of adding "significant active."
Hi Lisa,
I'm sorry that I somehow missed your post on the 15th.
Regarding your questions for the pathologist:
Accordingly, I would make the following changes in your e-mail questions:
Instead of referring to the "number of lymphocytes per enterocyte", or "lymphocyte per enterocyte count", you should refer to the number of lymphocutes per 100 enterocytes" and/or "lymphocyte count per 100 enterocytes".
Instead of asking:
I'm wondering what the specific lymphocyte count was, because another form of MC, (paucicellular LC), is marked by lymphocyte counts between 5 and 20.
In fact, here's how I would word the questions:
Regarding specimen "A", since a "prominent lymphoid component" was noted in the report, I'm wondering if this actually means significant lymphocytic infiltration, i.e., was the lymphocyte count above 20 per 100 enterocytes in the terminal ileum?
Regarding specimens "B-G", the notation "no significant active/ microscopic colitis" suggests an elevated lymphocyte count, but below the 20 lymphocytes per 100 enterocytes threshold necessary for a diagnosis of lymphocytic colitis. I'm wondering what the actual approximate average lymphocyte count was, because as you are probably aware, another form of lymphocytic colitis, known as paucicellular LC, presents with an average lymphocytic infiltration rate between the normal count of 5, and the LC diagnostic threshold of 20.
Thank you very much for any insight you can offer. I'm very concerned, because my microscopic colitis symptoms continue unabated, despite apparent negative biopsy results.
Tex
P. S. If you're corresponding with the pathologist's office, it would probably be better to postpone asking about mast cell staining at this point. Try to get a response on these points first. It's your doctor's duty to request mast cell staining, and that's a separate issue that has nothing to do with this inquiry.
I'm sorry that I somehow missed your post on the 15th.
Regarding your questions for the pathologist:
The assistant is correct. A pathologist does not do any testing - biopsy or other tissue samples are submitted to him or her for analysis, and a pathologist takes those samples, makes slides from them, suitable for examination under a microscope, stains them, (to make certain features stand out better, so that an analysis is easier to do accurately, and then examines those slides under a microscope, and notes in a report whatever is observed in the slides. No tests are done. Part of the analysis involves the counting of lymphocytes, but that's not a test - that's just counting lymphocytes.For the first conclusion, it says "unremarkable ileal mucosa with prominent lymphoid component but no diagnostic evidence of celiac disease, active ileitis, or microorganisms."
Questions - did he look for microscopic colitis in the ileum? And what does prominent lymphoid component mean? Is there a number of lymphocytes per enterocyte? I thought that was the standard for microscopic colitis - anything above 20 per 100 is MC. If that test to see the levels was not done, is it possible to do it now?
For the second, it says "no significant active/ microscopic colitis." I am just wondering again, what the lymphocyte per entercyte count was, because if it's over 20 then it would be MC but if it's between 5 and 20 it could be another kind of MC, called paucicellular MC. If this level testing wasn't done is there a way to test it to get these numbers? Why the word significant? Does that mean there was some MC? If not, wouldn't he just say no MC instead of adding "significant active."
Accordingly, I would make the following changes in your e-mail questions:
Instead of referring to the "number of lymphocytes per enterocyte", or "lymphocyte per enterocyte count", you should refer to the number of lymphocutes per 100 enterocytes" and/or "lymphocyte count per 100 enterocytes".
Instead of asking:
I would simply say:If this level testing wasn't done is there a way to test it to get these numbers? Why the word significant? Does that mean there was some MC? If not, wouldn't he just say no MC instead of adding "significant active."
I'm wondering what the specific lymphocyte count was, because another form of MC, (paucicellular LC), is marked by lymphocyte counts between 5 and 20.
In fact, here's how I would word the questions:
Regarding specimen "A", since a "prominent lymphoid component" was noted in the report, I'm wondering if this actually means significant lymphocytic infiltration, i.e., was the lymphocyte count above 20 per 100 enterocytes in the terminal ileum?
Regarding specimens "B-G", the notation "no significant active/ microscopic colitis" suggests an elevated lymphocyte count, but below the 20 lymphocytes per 100 enterocytes threshold necessary for a diagnosis of lymphocytic colitis. I'm wondering what the actual approximate average lymphocyte count was, because as you are probably aware, another form of lymphocytic colitis, known as paucicellular LC, presents with an average lymphocytic infiltration rate between the normal count of 5, and the LC diagnostic threshold of 20.
Thank you very much for any insight you can offer. I'm very concerned, because my microscopic colitis symptoms continue unabated, despite apparent negative biopsy results.
Tex
P. S. If you're corresponding with the pathologist's office, it would probably be better to postpone asking about mast cell staining at this point. Try to get a response on these points first. It's your doctor's duty to request mast cell staining, and that's a separate issue that has nothing to do with this inquiry.
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 worries - I so appreciate all of your help and know you have a life of your own! I am going to see what he says in response to my original email - and then if he needs refinement I'll use what you wrote to further explain. I am trying not to be too annoying (my gastro is beyond annoyed with me right now so I don't want to get a rep as "one of those patients") - I'll let you know as soon as I hear anything.... Thank you!!
I am just so astonished that a dr would just take a pathologist's conclusions as final. Wouldn't you want to know the underlying data? I couldn't feel confident in making a conclusion about anything unless I did. Maybe I am just crazy.
I am just so astonished that a dr would just take a pathologist's conclusions as final. Wouldn't you want to know the underlying data? I couldn't feel confident in making a conclusion about anything unless I did. Maybe I am just crazy.
I know what you mean - I am always surprised by how much of a doctor's decision-making is driven by something that's kicked out of a computer... they literally only look at the test values that are flagged, and then only in a great hurry. At least the pathologist had to struggle to describe in deathless prose what they observed...
And - your doctor is annoyed at you? Why did s/he feel compelled to let you know this? That strikes me as rather rude (and also as an attempt to get you to back down and stop being an active participant in your health). But I am perhaps overreacting - this is a hot-button issue with me.
And - your doctor is annoyed at you? Why did s/he feel compelled to let you know this? That strikes me as rather rude (and also as an attempt to get you to back down and stop being an active participant in your health). But I am perhaps overreacting - this is a hot-button issue with me.
No - I am over the top mad at and disappointed with my doctor too. She keeps telling me it is not a mast cell issue and that it is a big waste of time. Any time I suggest something she says "no, that's not it." She won't let me stay on the entocort. She didn't even call me with the pathology results - she had her secretary call (only after I called after 10 days when she said she would call me in a week - and BTW, the report was ready 2 days after my colonoscopy). I think she is frustrated she can't figure out what's wrong and taking it out on me - maybe she thinks it's just IBS and I am complaining too much. I am going to wait to see what happens with the mast cell issue and then start with someone new.
Lisa
Lisa
So this very nice assistant from the pathology department at the hospital where I had my colonoscopy has been feeding me information after I emailed him with those questions on Monday. I was doing this w/o my dr, because when I called her office to see if she had any more info (like what does "significant/ active" mean or what the elevated count meant, the sec'y said they had no idea and to call the pathology lab. The assistant just wrote me that that the pathologist "re-reviewed your slides and he will be issuing an addendum to the original pathology report. Stains for lymphocytes and mast cells have been ordered and will take 1 week to complete." However, when I asked for the report he said I would have to get it through my doctor. Which is kind of annoying because I am sort of through with her. Does this sound reasonable? What's your take on what he said? Does it sound like he's found something? I am supposed to go see my doctor on Monday, should I wait until all the reports are back? And, one more question, does the stains for lymphocytes have to do with the mast cell test or with the MC test?
Thanks!
Lisa
Thanks!
Lisa
Yes, I'm pretty sure that's a requirement in all jurisdictions, because of the risk of patients misinterpreting the results, (to say nothing of the additional work it would impose on the labs, since they presumably don't have the patient's records on file).Lisa wrote:Does this sound reasonable?
I would assume that he's merely going to clarify the points you asked about, and add a a mast cell analysis. I don't understand why he would say that he would order stains for lymphocytes, because staining for them is SOP, (standard operating procedure), using a conventional stain. The mast cells, however, require a special stain to make them more easily visable. Either mast-cell tryptase, immunohistochemical analysis for CD117, or Giemsa staining can be used to make mast cells easier to see, but I believe the tryptase stain is preferred, and most labs don't stock it, so they have to order it.
Your original slides were surely stained for lymphocyte evaluation before the original analysis, because a lymphocyte count is necessary for diagnosing or ruling out LC. He may be ordering a different stain, though, so that he can do a recount, just to be sure that he didn't overlook something the first time around. Good for him.
He sounds very helpful.It will almost surely be at least a couple of weeks before the lab receives the stains, and they have time to redo the preparation and analysis of the slides, and they get the reports sent out.
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.