Not to worry, stuff happens. Thanks for the corrected vitamin D info. That looks good. 63 is a good number.
And that's good news that your doctor finally decided to see to it that the mast cell count is made.
Thanks for the update.
Tex
Pathology Report Back- lab decided NOT to do the stain
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Deb,
Not to worry, stuff happens. Thanks for the corrected vitamin D info. That looks good. 63 is a good number.
And that's good news that your doctor finally decided to see to it that the mast cell count is made.
Thanks for the update.
Tex
Not to worry, stuff happens. Thanks for the corrected vitamin D info. That looks good. 63 is a good number.
And that's good news that your doctor finally decided to see to it that the mast cell count is made.
Thanks for the update.
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.
Good deal, Deb. I'm glad they are proceeding and I hope you'll have your results soon.
Good news for me today. My colon biopsies taken Tuesday show no mast cells and no increase in eosinophils. So I'm glad that I don't have to figure out if mast cells are the cause of my crazy motility issues. And I think the diet changes are keeping my immune system from overreacting and embedding more white cells. But that's about all I can conclude. Waiting for the lab report to arrive next week.
My motility was better when I was taking Lialda a couple of weeks ago until I had severe side effects and had to stop. So I believe inflammation is still an issue. I'm just not sure where it's from.
Carol
Good news for me today. My colon biopsies taken Tuesday show no mast cells and no increase in eosinophils. So I'm glad that I don't have to figure out if mast cells are the cause of my crazy motility issues. And I think the diet changes are keeping my immune system from overreacting and embedding more white cells. But that's about all I can conclude. Waiting for the lab report to arrive next week.
My motility was better when I was taking Lialda a couple of weeks ago until I had severe side effects and had to stop. So I believe inflammation is still an issue. I'm just not sure where it's from.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Thats great news Carol- about the mast cells not the unknown cause of the inflammation. That's why I wanted the test too. I'd like to rule out mast cell issues and modify my diet if need be. I've been trying to avoid high histamine foods but it would be nice to know if it's necessary or not.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Carol and Deb,
Remember that an elevated mast cell count is only diagnostic of mastocytic enterocolitis. MCAD (mast cell activation disorder) does not require an elevated mast cell count in order to cause histamine problems. The histamine problems associated with MCAD occur because of inappropriate mast cell degranulation (even when mast cell numbers are normal).
Tex
Remember that an elevated mast cell count is only diagnostic of mastocytic enterocolitis. MCAD (mast cell activation disorder) does not require an elevated mast cell count in order to cause histamine problems. The histamine problems associated with MCAD occur because of inappropriate mast cell degranulation (even when mast cell numbers are normal).
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.
Hi Deb,
I can't believe the pathologist refused to do the test. With your rocky MC history, the mast cells should certainly be checked. Bummer!
Just 3 comments, since you already have received some good advice:
1. Don't worry too much about a limited diet/nutrition at this point. Remember, if you are eating any "problem" foods, they are causing damage on some level and leading to malabsorption, so it is best to stick to very few, known SAFE foods that will allow your malabsorption (and thus nutrition) to improve.
If you are still worried, you can take a safe daily multivitamin (like from Freeda online). I know how hard it is to tease out unsafe foods and eat healthfully, but my advice would be to try to avoid processed foods (rice chex, choc. almond milk) as much as possible. Unfortunately, it takes much more time to plan and prepare meals using whole foods only. Also, I don't remember......did you have the Enterolab tests?
2. As Tex said, I believe vitamin D has prevented me from having more polyps. Your level seems adequate - my last 25 OH level was 63 ng/ml.
How long have you been taking it? I do think it takes time to show results. Polyps are slow-growing and may take up to 10 years to become cancerous. So, perhaps you already had some growing before you started the vitamin D. On my first 2 colonoscopies I had polyps, but none on the last 2.
3. I eat a lot of hamburger too. Beef is one of my safe foods - can't do lamb or pork. I know about the relationship to colonic neoplasia, but I think that CURED meat (lunch meats, bacon, etc.) may be even more dangerous. However, if you noticed less "greasy floating spots" when you stopped the beef, then that is a good sign that it might be affecting you adversely. Greasy/floating is a sign of malabsorption.
Good luck figuring out your safe foods. You are so right - it is not an easy process.
Love,
Polly
I can't believe the pathologist refused to do the test. With your rocky MC history, the mast cells should certainly be checked. Bummer!
Just 3 comments, since you already have received some good advice:
1. Don't worry too much about a limited diet/nutrition at this point. Remember, if you are eating any "problem" foods, they are causing damage on some level and leading to malabsorption, so it is best to stick to very few, known SAFE foods that will allow your malabsorption (and thus nutrition) to improve.
If you are still worried, you can take a safe daily multivitamin (like from Freeda online). I know how hard it is to tease out unsafe foods and eat healthfully, but my advice would be to try to avoid processed foods (rice chex, choc. almond milk) as much as possible. Unfortunately, it takes much more time to plan and prepare meals using whole foods only. Also, I don't remember......did you have the Enterolab tests?
2. As Tex said, I believe vitamin D has prevented me from having more polyps. Your level seems adequate - my last 25 OH level was 63 ng/ml.
How long have you been taking it? I do think it takes time to show results. Polyps are slow-growing and may take up to 10 years to become cancerous. So, perhaps you already had some growing before you started the vitamin D. On my first 2 colonoscopies I had polyps, but none on the last 2.
3. I eat a lot of hamburger too. Beef is one of my safe foods - can't do lamb or pork. I know about the relationship to colonic neoplasia, but I think that CURED meat (lunch meats, bacon, etc.) may be even more dangerous. However, if you noticed less "greasy floating spots" when you stopped the beef, then that is a good sign that it might be affecting you adversely. Greasy/floating is a sign of malabsorption.
Good luck figuring out your safe foods. You are so right - it is not an easy process.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Thanks Tex,
I believe I do have some mast cell involvement but I don't think it's extreme. I'm looking forward to reading the actual lab report. I felt the nurses report over the phone was not as detailed as I wanted. When she said "no increase in eosinophils" I asked "relative to what? My tests 3 years ago?" which I believe were done by a different lab. Her response was to say "it just says 'no increase in eosinophils". So I'll wait until I see my Dr in a couple of weeks to get clarification.
Carol
I believe I do have some mast cell involvement but I don't think it's extreme. I'm looking forward to reading the actual lab report. I felt the nurses report over the phone was not as detailed as I wanted. When she said "no increase in eosinophils" I asked "relative to what? My tests 3 years ago?" which I believe were done by a different lab. Her response was to say "it just says 'no increase in eosinophils". So I'll wait until I see my Dr in a couple of weeks to get clarification.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
The report probably just listed the eosinophil level as falling within the normal range, but a lot of medical professions seem to have a problem with using simple language. They like to at least nudge it slightly in the direction of doctorspeak. 
Tex
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.