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My nose is finally under control and the nurse called to say all three polyps came back as the pre-cancerous type (same as last time) but no cancer. Great news. Another colonoscopy in three years. Yuk, but better than letting them develop into something more. Biopsies were taken throughout the colon and everything came back "normal". Haha. Sorry can't tolerate the word. I still have the CC dx. Yup, knew that. BUT, the tryptase stain I requested was not completed because the pathologist felt it was not necessary due to the CC dx or something to that point. My next step is to request a copy of the report since I don't like the summarizing the nurses do. She just wanted to say- no cancer, have CC, will follow up again later, goodbye.
I carefully chose my words as not to offend and given I am not medically versed in the explanations I simply said it is possible to have both CC and mast cell issues at the same time and wanted some peace of mind that mast cells are not an issue. Plus, the results will tie into my diet and I will know if certain foods should be avoided. Hopefully, everything I said was on track but I was simply annoyed that my GI agreed to humor me and the pathologist decided to omit it. Maybe it is their discretion but it doesn't seem right. The nurse will now ask my GI again if he wants to contact the lab and have them test for it. Grrrr.
I decided since I was cleaned out I would go down to less variety in foods. Since my colonoscopy last week I have only had ground turkey, rice, rice chex, banana, and chocolate almond milk. Nothing more. I haven't taken any entocort in 6 days. I still have D but it's
2-3x in the morning when I get up and that's it. No grumbles either. I know the chex and almond milk may be risky choices but it's what I had on hand.
I'm unsure if I should give it more time or add something because I worry about poor nutrition. Maybe I am best to wait until I get my thyroid meds straightened out which will hopefully go smoothly in a couple weeks. This detective work is exhausting.
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
Hmmph. I would have thought that if the Dr ordered it then the lab would do it. Period. I hope they 'hear you' and follow through.
As far as a restricted diet, it's kinda surprising how well our bodies do on limited diet. I think you would be safe to give it more time.
I had a flex-sigmoidoscopy today (to look for a source of bleeding that showed up on a screening) and asked the GI doc (in writing) if he would consider asking the lab to check for mast cells. He asked how I heard of mast cells and I said "in reading research on autoimmune disease" then tied it into what the ARNP and I were working on (my messed up motility and the theory that it's tied to inflammation which improved on Lialda, until I developed severe side effects). After my procedure he said he would ask for the mast cell stain plus look for eosinophiles (and I assume other white cells). Okay I was still a little 'hammered' when he was talking to me, but my husband confirmed I heard that correctly.
If the same thing happens to me and the lab doesn't come through, I'll be very upset. Because other than rule out that I (again) have no cancer, polyps or ulcers, or internal bleeding, I'm not sure what else we will have accomplished today. Except to lighten my checkbook.
Good luck, Deb. Go get 'em.
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
Thanks Carol. Hopefully I will have a better understanding once I can see what is actually in the report or get help here to interpret it. I thought the same of lab people as other technicians who don't interpret your results (CT scan, MRI, etc) but simply perform the test that's on the order. Not in this case from what I'm told.
So far, most looked at me like I was speaking a foreign language when I brought up mast cells. Sigh.
I was reading that a diet high in red meat is a factor in colonic neoplasia and am wondering if I should limit my use of hamburger. It is a staple in my diet. I really don't want to but if I'm ignoring something pretty important I may be foolish not to consider it. Now that I haven't had any beef in a while I have noticed there are no greasy floating spots in the toilet.
I hope you have no issues with getting your tests done and finding some answers! It continues to surprise me that I have to monitor every test and procedure that I have done because there is always some sort of issue.
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
Oh my gosh, it seems like it is one thing after another.
I don't know what the typical protocol is with a lab not following the Doctor's orders but this seems extremely unusual to me. i.e. Does a lab presume to know more than the Doctor? You have really really suffered for 4 long years (and more) and even your GI Doc acknowledges that you have non responsive D over a long period.
Before the slides get lost or something I'd tell the GI doc to get the slides sent to another Pathologist and you want the slides read with the tryptease stain (not sure if this is spelled right.) Also make sure to mention you tell them you want an actual mast cell count.
I've only had one colonoscopy in my life. (And only one set of biopsy slides.) Pathologist #1 did the tryptease (for GI Doc #1) but pathologist report came through with only vague wording of no significant mast cell activity. (I was a newbie and did not request this...GI doc #1 requested the tryptease stain on his own.) GI doc #2 was up in arms over the vagueness of the first pathology report, called it unacceptable for someone suffering from MC and had same slides sent to Pathologist #2 at University Medical center. Pathologist #2 restained and got an actual mast cell count from the original slides and I got a new report and more accurate results.
It is not unusual for a GI doc to request the tryptease stain and mast cell count for someone with suspected MC, i.e. it is an appropriate request. The lab that your GI doc is using seems like doofuses. (not sure of spelling on that either.) We even get newbies that come on our forum that have pathologist reports with mast cell counts on them that their GI docs ordered.
If you get the runaround from the local lab I'd request the GI doc send your slides to another lab or to one of the Pathologists at the Medical School/Center in your state. You don't have to go---they simply send your slides and they are reinterpreted.
Since you have suffered for years it would be really really helpful if you could get in writing an actual mast cell count and a determination of whether or not you have mast cell issues.
I'm really sorry you are going through this.
Brandy
PS. I saw your other post about your son going to college. Hope he is transitioning well. I wanted to mention that I live in a college town with 70,000 students. We have 50,000 students at the University and about 20,000 students at our community college. I run into college students that have to be gluten free all the time or their roommates are gluten free etc.
Like everyone else who responded, I'm sorry too, for the problems you seem to repeatedly encounter with various health care professionals in Wisconsin. Maybe the cold winters up there affect their brains.
I'm guessing that the tryptase stain was not completed because the pathologist was/is lazy, and the pay is the same, regardless of the amount of work involved (but I could certainly be wrong). I totally agree with Brandy. I would point out to my doctor that if that particular pathologist feels obligated to overrule a doctor's lab orders, maybe it's time to look around for another pathologist who's willing to follow orders. As Brandy correctly pointed out, if that pathologist is too lazy to do the work, your doctor can request that the slides be sent to another pathology lab for a mast cell analysis.
Regarding the chex and almond milk — are you sure that the chocolate in the almond milk is not a problem?
Regarding red meat and alleged colonic neoplasia — I don't know what you think of Chris Kressor, but I have the utmost respect for the knowledge that he conveys in his articles. You might find this article on red meat interesting.
That said, some of us (including me) seem to have problems digesting beef. It doesn't cause me to have D, it mostly just causes a little gas, bloating, and a dull bellyache. I thought I got past that after my gut healed, but I notice those symptoms still (or again) show up these days, after I eat beef.
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.
Hopefully Everything will get back in motion and I won't have to do any further requests. I do seem to be a magnet for those unusual type situations. I figure Murphy's Law was written for me. Tex, it was a pretty rough winter this year, maybe they got a touch of frostbite to the brain. :)
I eliminated coffee a while back for about six weeks and was sad every morning. It didn't change anything but I continued with the chocolate almond milk. Will have to give it a try. I think Leah said she uses coconut milk as a creamer so that may make it less painful. I do have it everyday since it's the only other drink I have aside from coffee and water.
I subscribe to Chris Kressor's email articles and find them intriguing. I never felt there were any issues with beef aside from greasiness but if that was contributing to the D, I would think there would have been a slight improvement by now. I was disappointed that the number of polyps found this time around increased. My mother-in-law is being treated for colon cancer so it's been on my mind.
Brandy, I was thinking my request wasn't that off the wall. It seems odd that given the fact I have CC made the pathologist feel the testing wasn't warranted. It should have been the other way around.
My son is starting his sophomore year and is packed and ready to go! I'm happy he is so independent but will miss him at home. I'm hoping he takes advantage of the GF opportunities on campus because he has the meal plan since he lives in the dorm. Wow, that's a huge campus by you!
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
Chris Kressor's article was interesting...I subscribed.
I have noticed for years that red meat seems to weigh me down, digest slowly and cause foul smelling gas. I still eat it a couple of times per week for the iron and b vitamins.
I didn't know lab techs could just decide not to do one of the ordered tests, how frustrating
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Deb wrote:I was disappointed that the number of polyps found this time around increased.
What's your vitamin D test level? Are you aware that Polly believes that her increased vitamin D level may be the reason why her last colonoscopy exam showed no polyps, while all her previous colonoscipies found polyps?
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.
63 ng/mL would be a good number for total 25OHvitaminD
Normally Total 25-OH-vitaminD is given as the numeric sum of (25-OH-vitaminD2) + (25-OH-vitaminD3)
358 ng/mL would be way up in the toxic range
25 ng/mL would be insufficient
My last result for 25-OH-vitaminD3 was 95, and since my 25-OH-vitaminD2 was less than 4 (apparently the minimum test limit), it was ignored, and so my Total 25-OH-vitaminD2 was reported as 95 ng/mL.
I take about 6,500 IU in the late fall/winter/early spring, and 3500 IU the rest of the year, but I live in sunny Central Texas, and I get a fair amount of sun exposure, including some noonday sun, year-round.
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.
Just got a call from the nurse- the are doing the stain anyway was on my answering machine. It take it they all feel it isn't necessary. That's ok. At least I will know now.
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
As Brandy correctly pointed out, if that pathologist is too lazy to do the work, your doctor can request that the slides be sent to another pathology lab for a mast cell analysis.
