4 years ago today I was diagnosed with MC. Which was explained to me as inflammation of the colon. Since then I have had digestive issues constipation and diarrhea vomiting upper body pain nausea. I am on a gf, dairy, chocolate, caffeine, ect free diet.
I had a second colonoscopy recently and I just got off the phone with the nurse who told me that my colon does not show any sign of inflammation or anything else abnormal. I am so confused as I feel the same.
Is it possible that my colon is not inflamed because I don't eat gluten any more. Does the colon only show signs of inflammation when you eat gluten or is it inflamed at all times. Could it be possible that I don't have inflammation any longer.
Please help. Everything I thought I understood all of a sudden has become confusing. I don't know what to make out of this at all.
Please help me understand my second colonoscoy results &
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Was your nurse reading the pathology report, or the GI doc's endoscopy (colonoscopy) report? If it was the latter, then it means nothing, regarding MC, because unlike Crohn's disease and UC, which show up as gross (visible to the naked eye) inflammation, MC is invisible through the colonoscope. It is only detectible under a microscope, thus the name, "microscopic colitis".
Since your colonoscopy was done a dozen days ago, your GI doc's office should have the pathology report in hand by now, so I'm guessing that the nurse was reading your GI doc's interpretation of the pathology report (but it's also possible that she was mistakenly reading from the doctor's original endoscopy report). Even if she was reading from the gastroenterologist's summary of the pathology report (or the pathology report itself), it's still possible that the report is misleading. For an explanation of how this is possible, please read the following quote, which is taken from a post I made in response to another member a few days ago, who's doctor also told him that he "no longer has MC". I've listed a link to the original thread that contains the post, following the quote:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20390
The problem is that doctors (and nurses) don't seem to understand that just because a patient's lymphocyte infiltration count from their colon biopsy samples does not meet the diagnostic criteria for MC, does not mean that no inflammation exists. It merely means that the inflammation level is lower than what is required for an official diagnosis of MC. And that improvement exists because some healing has taken place, but again, that does not mean that healing is complete. It merely means that healing has begun.
Another reason why your symptoms may not seem to be improved is because you might have mast cell activation disorder, which can cause virtually the same symptoms as MC, by another mechanism, namely mast cell degranulation. Inappropriate mast cell activity can result in the dumping of too much histamine in your system, which can result in virtually the same digestive problems as MC. Mast cell activation disorder (MCAD) is very common with MC. Many of us have this problem. You can read more about it in the short articles at the following links:
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
Have you tried taking antihistamines? If they help your symptoms, then you almost surely have MCAD. I hope that some of this is helpful.
Tex
Since your colonoscopy was done a dozen days ago, your GI doc's office should have the pathology report in hand by now, so I'm guessing that the nurse was reading your GI doc's interpretation of the pathology report (but it's also possible that she was mistakenly reading from the doctor's original endoscopy report). Even if she was reading from the gastroenterologist's summary of the pathology report (or the pathology report itself), it's still possible that the report is misleading. For an explanation of how this is possible, please read the following quote, which is taken from a post I made in response to another member a few days ago, who's doctor also told him that he "no longer has MC". I've listed a link to the original thread that contains the post, following the quote:
.Did you get an actual lymphocyte count? Here's what almost surely happened, I'm guessing:
Your lymphocyte count dropped, for the reason that I stated above, so that it is no longer sufficient to meet the diagnostic requirement for LC (20 lymphocytes or more per 100 enterocytes). But here's the problem — a "normal" colon has less than 10 lymphocytes per 100 enterocytes. The area between these two arbitrary limits is an undefined state. It's definitely not normal, and it's definitely not LC (by arbitrary definition). So what is it? shrug I find it incredible that no one ever bothered to try to define this area of elevated lymphocyte infiltration, and it's implications for MC and other GI issues.
It so happens that a form of MC has been described (years ago) that is marked by a lymphocyte count that falls within the range of 10–20 lymphocytes per 100 enterocytes. It's called paucicellular LC, but like Rodney Dangerfield used to always say, "it gets no respect", and doctors continue to just ignore it. Probably because they never bothered to learn about it.
But the problem with paucicellular LC is that the researchers who originally described it proclaimed it to be a unique form of MC, separate and distinct from LC. Really? Does that make sense? You and I both know that before the inflammation that causes LC can push the lymphocyte count up to where it meets the official medical definition of LC, the lymphocyte count has to pass through that range (10–20 lymphocytes per 100 enterocytes) in order to get to a diagnostic level. And when properly treated, as the lymphocyte count declines, it has to pass through that range again. Why is that so difficult/impossible for doctors and medical researchers to understand? Do they actually think that the jump occurs instantaneously? Most likely it takes months to make the complete transition. But who knows? It certainly doesn't occur overnight.
Anyway my point is, I'm guessing that your lymphocyte count now falls within this medical "no man's land". Therefore your doctor can claim that you do not have LC. But on the other hand, I'll bet a GF cookie that he cannot provide proof that your colonic histology is back to normal (with a normal lymphocyte count), either
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20390
The problem is that doctors (and nurses) don't seem to understand that just because a patient's lymphocyte infiltration count from their colon biopsy samples does not meet the diagnostic criteria for MC, does not mean that no inflammation exists. It merely means that the inflammation level is lower than what is required for an official diagnosis of MC. And that improvement exists because some healing has taken place, but again, that does not mean that healing is complete. It merely means that healing has begun.
Another reason why your symptoms may not seem to be improved is because you might have mast cell activation disorder, which can cause virtually the same symptoms as MC, by another mechanism, namely mast cell degranulation. Inappropriate mast cell activity can result in the dumping of too much histamine in your system, which can result in virtually the same digestive problems as MC. Mast cell activation disorder (MCAD) is very common with MC. Many of us have this problem. You can read more about it in the short articles at the following links:
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
Have you tried taking antihistamines? If they help your symptoms, then you almost surely have MCAD. I hope that some of this is helpful.
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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showstopa
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Thank you so very much for all of the information that you provided for me. I would like to state that though the nurse appeared to be reading from the more informative report, that I am not certain if that was in fact the case. I was originally calling the Doctor to confirm my appointment with my Gastroenterologist and that my results of the colonoscopy were in fact available. I took the opportunity to inquire about the results and that's when she informed me that things are "normal".
I will say one thing. My body feels the same and even the thought of gluten causes digestive issues. My actual appointment is next week so at least with the information you have provided I will have something to fight back with in the worst case scenario that my doctor tries to tell me that I am all good and to go along my merry way. A part of me wants to pack a pizza a piece of cake to consume in the doctors office if they tell me that I have no issues. I can promise you that I will be in pain, my bowel will be extreme and that I will be nauses and vomiting and most likely will need to be admitted to the hospital just like I was in May when i mistakenly consumed chocolate and gluten. I had to go through emergency and that was just 4 month ago. I have been dealing with this for 4 Years going on 5.
Thank you again for the response as I was feeling so torn! My mind wanted to celebrate but my body was telling me don't do it with gluten!!!! i will let you guys know what happens in my actual appointment next Tuesday. Talk to you then!
I will say one thing. My body feels the same and even the thought of gluten causes digestive issues. My actual appointment is next week so at least with the information you have provided I will have something to fight back with in the worst case scenario that my doctor tries to tell me that I am all good and to go along my merry way. A part of me wants to pack a pizza a piece of cake to consume in the doctors office if they tell me that I have no issues. I can promise you that I will be in pain, my bowel will be extreme and that I will be nauses and vomiting and most likely will need to be admitted to the hospital just like I was in May when i mistakenly consumed chocolate and gluten. I had to go through emergency and that was just 4 month ago. I have been dealing with this for 4 Years going on 5.
Thank you again for the response as I was feeling so torn! My mind wanted to celebrate but my body was telling me don't do it with gluten!!!! i will let you guys know what happens in my actual appointment next Tuesday. Talk to you then!
I assumed that you were talking with a nurse in your GI doc's office. I'm pretty sure that anyone in your PCP's office would be more likely to be reading from the gastroenterologist's colonoscopy report, than from a pathology report, because they would be less likely to understand the importance of the pathologist's microscopic examination of your biopsy slides (and a nurse in a PCP's office probably wouldn't be able to understand the language used in the pathology report, anyway).
So hopefully you'll get the real facts a week from today.
You're most welcome,
Tex
So hopefully you'll get the real facts a week from today.
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.
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UkuleleLady
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They will probably advise you to stay away from Internet discussion boards.showstopa wrote:I am going to take everything I learned from you guys to my visit next week. I want them to know i am dead serious and this helps tons.
Good luck!
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.