Colonoscopy and Mast Cell Testing Results
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- Joefnh
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Colonoscopy and Mast Cell Testing Results
Hello all... I had a few weeks ago promised that I would put together an update after my latest double dip colonoscopy. In talking with my GI doctor he agreed to do the colonoscopy and EGD both with a set of biopsies for mast cell testing.
As I deal with Crohns, they like to do a colonoscopy every year given the greatly increased chance of cancer. So in March I had my yearly colonoscopy with the EGD this time and here is a summary of the results.
(I had to ask a couple of times to get a hard copy of the pathology report with notes, but I do prefer to see the data like this.)
There were a total of 35 biopsies taken with 20 repeat biopsies from the same site sent out for mast cell testing. The reason there were repeated samples taken is that he wanted to send a set out to the Mayo clinic lab for the mast cell counts and to act as a cross check for the local lab, the local lab was not setup for mast cell testing.
Here are the locations - the number of biopsies and the (mast cell counts)
Cecum - 3 (7,12)
Ascending colon - 4 (16,16,15)
Hepatic Flexure - 1 (12)
Descending Colon - 4 (17,14,12)
Transverse Colon - 5
Splenic Flexure - 2
Duodenum - 2 (15)
Gastric - 3 (15,14,14)
Esophageal - 3 (7,9)
Sigmoid Colon - 4 (9,9,12)
Rectum Biopsy - 2
Terminal Illium - 2, (15, 14)
Overall the mast cell counts average about 14 (range 7 - 17) which while considered "normal" it is elevated they seem to be more or less the same through the GI tract. So it is above the accepted normal range, but not high enough for a Dx
The pathologist did not individually list all of the collagen membrane thicknesses but made a note in the report that the higher numbers were noted in the ascending and transverse colon and that the average is at 7um, which shows improvement over the last set which was closer to 12 microns. There was no signs of polyps and the crypt disturbances were limited to the terminal illium.
Overall it is a good report in that there is no signs of cancer, the collagen band thicknesses have reduced and there is little signs of active Crohns in the terminal ilium or colon. The one interesting note is the somewhat increased mast cell counts and a good question is does this increase mean anything? It's higher than the baseline, but not high enough for a Dx.
Besides the colonsocpy results, I did struggle these past weeks with a pretty good flare up, I'm sure it's due to a mix of physical stresses from the colonoscopy and simple emotional stress. One thing that has occurred is a flare up of lower back, hip and knee joint pain combined with uveitis.
Due to these symptoms, my GI doc did run a blood test to see how the levels of the active component of Imuran were in my blood and they were found to be well below the therapeutic range. Typically my levels of Thioprine (the active component of Imuran) are at about 430ng/ul and they had fallen to 216ng/ul. The low end that's considered effective is 330ng/ul. To remedy this I have increased my Imuran daily dosage 25% and will have the levels checked again in July.
As part of these symptoms, especially the lower back pain in the sacrum, hip pain coupled with the eye pain, my doctor had a genetic test done for the gene HLA-B27 which is a possible indicator of Ankylosing Spondylitis (AS) and it did come back positive. Although you should note that having this gene does not mean you have AS, but those with AS have this gene 90% of the time. To look into this further I have an appt with a rheumatologist on the 21st of June.
I did find out though that it is somewhat common to have AS with various IBDs and it has been postulated that AS in and of itself may be a cause of chronic D.
So thats the health summary in a nutshell...overall I'm doing fairly well and this most recent flare has more or less settled down, now it's time to figure out what up if anything with AS
Well it's time to get ready and do my favorite kind of cooking ...BBQ....
Edit...and added data...my vitamin D levels are at 31 while taking 5000 units a day for the last year.
As I deal with Crohns, they like to do a colonoscopy every year given the greatly increased chance of cancer. So in March I had my yearly colonoscopy with the EGD this time and here is a summary of the results.
(I had to ask a couple of times to get a hard copy of the pathology report with notes, but I do prefer to see the data like this.)
There were a total of 35 biopsies taken with 20 repeat biopsies from the same site sent out for mast cell testing. The reason there were repeated samples taken is that he wanted to send a set out to the Mayo clinic lab for the mast cell counts and to act as a cross check for the local lab, the local lab was not setup for mast cell testing.
Here are the locations - the number of biopsies and the (mast cell counts)
Cecum - 3 (7,12)
Ascending colon - 4 (16,16,15)
Hepatic Flexure - 1 (12)
Descending Colon - 4 (17,14,12)
Transverse Colon - 5
Splenic Flexure - 2
Duodenum - 2 (15)
Gastric - 3 (15,14,14)
Esophageal - 3 (7,9)
Sigmoid Colon - 4 (9,9,12)
Rectum Biopsy - 2
Terminal Illium - 2, (15, 14)
Overall the mast cell counts average about 14 (range 7 - 17) which while considered "normal" it is elevated they seem to be more or less the same through the GI tract. So it is above the accepted normal range, but not high enough for a Dx
The pathologist did not individually list all of the collagen membrane thicknesses but made a note in the report that the higher numbers were noted in the ascending and transverse colon and that the average is at 7um, which shows improvement over the last set which was closer to 12 microns. There was no signs of polyps and the crypt disturbances were limited to the terminal illium.
Overall it is a good report in that there is no signs of cancer, the collagen band thicknesses have reduced and there is little signs of active Crohns in the terminal ilium or colon. The one interesting note is the somewhat increased mast cell counts and a good question is does this increase mean anything? It's higher than the baseline, but not high enough for a Dx.
Besides the colonsocpy results, I did struggle these past weeks with a pretty good flare up, I'm sure it's due to a mix of physical stresses from the colonoscopy and simple emotional stress. One thing that has occurred is a flare up of lower back, hip and knee joint pain combined with uveitis.
Due to these symptoms, my GI doc did run a blood test to see how the levels of the active component of Imuran were in my blood and they were found to be well below the therapeutic range. Typically my levels of Thioprine (the active component of Imuran) are at about 430ng/ul and they had fallen to 216ng/ul. The low end that's considered effective is 330ng/ul. To remedy this I have increased my Imuran daily dosage 25% and will have the levels checked again in July.
As part of these symptoms, especially the lower back pain in the sacrum, hip pain coupled with the eye pain, my doctor had a genetic test done for the gene HLA-B27 which is a possible indicator of Ankylosing Spondylitis (AS) and it did come back positive. Although you should note that having this gene does not mean you have AS, but those with AS have this gene 90% of the time. To look into this further I have an appt with a rheumatologist on the 21st of June.
I did find out though that it is somewhat common to have AS with various IBDs and it has been postulated that AS in and of itself may be a cause of chronic D.
So thats the health summary in a nutshell...overall I'm doing fairly well and this most recent flare has more or less settled down, now it's time to figure out what up if anything with AS
Well it's time to get ready and do my favorite kind of cooking ...BBQ....
Edit...and added data...my vitamin D levels are at 31 while taking 5000 units a day for the last year.
Joe
- Joefnh
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Jenny, Brigham and Woman's hospital has a very very good reputation, it will be interesting to see what the results are. Be sure to ask before and at the time of the procedure for the mast cell samples, it would be a shame to lose the opportunity if it was forgotten.
BBQ This time will be ribs and grass fed beef steaks, I'm going to stick with just a bit of chicken though as I'm still a bit sensitive from this flare up. Nestlé has already volunteered for any cleanup duties
PS: Nestle says hello...well actually woof, but it translates the same.
I hope you have a great weekend.
BBQ This time will be ribs and grass fed beef steaks, I'm going to stick with just a bit of chicken though as I'm still a bit sensitive from this flare up. Nestlé has already volunteered for any cleanup duties
PS: Nestle says hello...well actually woof, but it translates the same.
I hope you have a great weekend.
Joe
Joe,
Good news on your results! Just a reminder that mast cell numbers could be normal but behave badly. You could still feel effects of mast cell degranulation/histamine with those numbers.
Enjoy the BBQ and grass fed beef - sounds delish. We are grilling steak and salmon (since I stopped eating beef per last MRT) on my husband's new grill tonight.
Mary Beth
Good news on your results! Just a reminder that mast cell numbers could be normal but behave badly. You could still feel effects of mast cell degranulation/histamine with those numbers.
Enjoy the BBQ and grass fed beef - sounds delish. We are grilling steak and salmon (since I stopped eating beef per last MRT) on my husband's new grill tonight.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
- draperygoddess
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Joe,
Sounds like you're making some definite progress as far as healing goes! Sorry about the flare, though...hope you're able to enjoy the holiday!
It's interesting what you said about the mast cell count being elevated, but not enough for a diagnosis--I believe that's what happened to me with my non-diagnosis of MC, but my GI wouldn't ever give me the counts (probably because the lab didn't record them). Will you have them test for mast cells again next year to see how it compares?
By the way, Nestle is a bee-yoo-tee-ful doggie!
Sounds like you're making some definite progress as far as healing goes! Sorry about the flare, though...hope you're able to enjoy the holiday!
It's interesting what you said about the mast cell count being elevated, but not enough for a diagnosis--I believe that's what happened to me with my non-diagnosis of MC, but my GI wouldn't ever give me the counts (probably because the lab didn't record them). Will you have them test for mast cells again next year to see how it compares?
By the way, Nestle is a bee-yoo-tee-ful doggie!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
I agree with Mary Beth. To me, your report suggests the possibility of elevated mast cell presence/activity even though the numbers are sub-diagnostic. Here's why -- corticosteroids suppress inflammation by suppressing mast cell numbers. Therefore, if you hadn't been taking a corticosteroid, the numbers would almost surely have been higher. IOW, the fact that the counts are still elevated suggests that they were previously higher. I'm not sure that we can draw any firm conclusions, though, since you don't have any previous baseline counts for comparison. IMO, the counts were probably higher at one point, and they are now declining, but all we can do is guess.Joe wrote:The one interesting note is the somewhat increased mast cell counts and a good question is does this increase mean anything? It's higher than the baseline, but not high enough for a Dx.
Azithioprine suppresses T cells and B cells, but not humoral antibodies. Therefore, since mast cells are activated by humoral antibodies, I would conclude that Imuran does not suppress mast cells, nor mast cell degranulation, but since there doesn't seem to be any specific documentation available concerning this possible aspect of azithioprine's pharmacokinetics, this is just an educated guess -- I could be all wet. For all I know, mast cells may be affected, but researchers have never bothered to pursue this aspect.
I was wondering if that might not be the reason behind your recent flare.Joe wrote:Due to these symptoms, my GI doc did run a blood test to see how the levels of the active component of Imuran were in my blood and they were found to be well below the therapeutic range.
FWIW, I have never pursued an AS diagnosis, but I've always wondered if I might have it, because if I get glutened, I seem to have AS symptoms.
I hope the weather cooperates with your grilling. I may fire up the grill, too, since there's no danger of any rain in the forecast for here.
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.
- Joefnh
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Mary Beth, I suspect at least mild mast cell issues as certain foods respond with a strong reaction within 20 minutes. I believe Gabes had reported a similar timeframe for a reaction and I do believe they are 'behaving badly'...how do you discipline your mast cells? LOl
Drapperygoddess I aggree that there is a "sub-clinical" diagnosis that is overlooked in these cases. While the numbers are 'close' the symptoms are quite real.
Overall I do feel I am making real progress with diet and meds, the collagen membrane thickness is coming down and overall besides this flare up I am doing better every month.
I'll have to agree Nestlé is a beautiful dog and a very very special friend....I simply do not know where I would be without her. I have had many dogs over the years, but Nestle is way beyond special and smart.
Tex it does seem interesting that many of us with MC do have a lot of the AS like symptoms. I am going to be seeing Dr Yost on the 21st who is a great rheumatologist and I did see him initially before the Dx of MC and Chrons and he did mention back then, don't be surprised if a few autoimmune (AI) diagnosis show up as these AI disease usally show up in groups.
Tex I was not taking any steroids at the time of these tests
BTW Tex I did forget to mention in my first post in this thread that my vitamin D is at 31 which is while taking 5000 IU a day for the past year. I'll edit my first post with that data.
Drapperygoddess I aggree that there is a "sub-clinical" diagnosis that is overlooked in these cases. While the numbers are 'close' the symptoms are quite real.
Overall I do feel I am making real progress with diet and meds, the collagen membrane thickness is coming down and overall besides this flare up I am doing better every month.
I'll have to agree Nestlé is a beautiful dog and a very very special friend....I simply do not know where I would be without her. I have had many dogs over the years, but Nestle is way beyond special and smart.
Tex it does seem interesting that many of us with MC do have a lot of the AS like symptoms. I am going to be seeing Dr Yost on the 21st who is a great rheumatologist and I did see him initially before the Dx of MC and Chrons and he did mention back then, don't be surprised if a few autoimmune (AI) diagnosis show up as these AI disease usally show up in groups.
Tex I was not taking any steroids at the time of these tests
BTW Tex I did forget to mention in my first post in this thread that my vitamin D is at 31 which is while taking 5000 IU a day for the past year. I'll edit my first post with that data.
Joe
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Joe, that's exactly my situation with the Vitamin D. And yes, I have the HLA-B27 gene and the constant lower back ache. My first appointment with the rheumatologist is June 4. I hope she's good; my last appt with one was in 2007 in another state. Time to get serious about the AS possibility.Joefnh wrote:Jenny I
BTW Tex I did forget to mention in my first post in this thread that my vitamin D is at 31 which is while taking 5000 IU a day for the past year. I'll edit my first post with that data.
Also have sleep apnea
- Joefnh
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Kitty, I gave Nestlé a bunch of pats and hugs for you...she never complains of those
Hi Marcia, certainly let us know what you find out on the 4th with your rheumatologist, I will be seeing mine on the 21st or June. I chose to wait for this particular doctor as he is full professor of medicine at Harvard and Dartmouth Medical and is considered one of the experts in the field of AS. Hopefully he can shed some light on this issue.
Hi Marcia, certainly let us know what you find out on the 4th with your rheumatologist, I will be seeing mine on the 21st or June. I chose to wait for this particular doctor as he is full professor of medicine at Harvard and Dartmouth Medical and is considered one of the experts in the field of AS. Hopefully he can shed some light on this issue.
Joe
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Joe,
I am glad that your flare seems to be calming down. I know you just celebrated the graduation of your two children and that in itself must have been very emotional. No dx of cancer is very good news. Hopefully, things will calm down now and you'll start feeling better. Just being outside and BBQing is wonderful. We also did that tonight.
I seem to be going alright with the lowered dose of Imuran.
Nancy
I am glad that your flare seems to be calming down. I know you just celebrated the graduation of your two children and that in itself must have been very emotional. No dx of cancer is very good news. Hopefully, things will calm down now and you'll start feeling better. Just being outside and BBQing is wonderful. We also did that tonight.
I seem to be going alright with the lowered dose of Imuran.
Nancy