Catch up: My new GI doc wanted to "lay eyes" on my 2013 colonoscopy slides. He indicated that he would have to request them because they would not let me pick them up due to special handling.
I went to the next visit and was told that they were unable to locate the slides. I did some calling when I got home and located my slides. They said they could mail them to the doctor's office or I could hand deliver. I hand delivered them.
Now to yesterday: At my visit, I asked my GI doc about the slides and he said "The person he took them to (pathologist) said he couldn't read slides prepared by another lab. My doc said my original report was fine.
He told me to stop the Uceris since I had been on it for 3 months (I am tapering with what I have left). It was helping with frequency and urgency, but not consistency.
He says that he feels we are missing something and that he wants me to have an Endoscopy. He wants to look at the small bowel.....said it would only take a couple of minutes and something about "small intestinal biopsy". I reminded him that I was not eating gluten.....he said to start eating it and he would have the office schedule the endoscopy in 4 weeks. Tex, told me in a previous post that it would take longer than a month for the damage to show up. Doc has wanted to do the endoscopy since my first visit.....part of me feels that maybe I should because I would check off another box of "done that" and part of me thinks I've been on GF since January and don't want to start again.....but then I waiver back to "but I can go back on GF after I have the test.....then I waiver back to "I don't think I'm celiac and if I were, I'm doing what they would suggest by being GF. I feel like I'm on a roller coaster.
My question: What are some reasons that doctors order an endoscopy? What could he find that he thinks we are missing?
I think he is trying to help me, so I feel bad second-guessing. I've learned enough from this site to know that the test will probably be negative. If there were something other than celiac that they could find, then I might be more open to doing the test.
Thanks for listening,
Terre
Grrrrr - GI doc appt.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Terre,
Am so sorry for all these challenges. This is a very complex condition, and many (or most) of us have multiple issues too. I don't know whether this is helpful or not, but my GI doctor did do an endoscopy for me, in order to rule out other complications. The type of endoscopy that he did was non-invasive, required no prep or anesthesia, and didn't impact my diet at all. The test involved me swallowing a small pill which was actually a camera, and wearing a body harness (which held the computer) plus mostly not eating or drinking for about 8 hours.
After the 8 hours, I returned to my GI doctor's office and they removed the harness, etc., and said the camera had finished its work, which was to take pictures every 8 seconds or so all the way down the digestive tract. About 24 hours later, the little camera "came out the other end" as it was supposed to!
A week later, I went back to the office and was treated to a computer slide show of the photos taken by the camera. No biopsies were done, so obviously this type of endoscopy would not detect anything requiring that. However, it did provide a very good look at the other parts of my digestive system not seen on the colonoscopy. Everything appeared normal, and I did get some peace of mind from ruling out such possibilities as ulcers, and other damage that would have shown up on visual exam.
Wishing you all the best, and please keep us posted.
~ Holly
Am so sorry for all these challenges. This is a very complex condition, and many (or most) of us have multiple issues too. I don't know whether this is helpful or not, but my GI doctor did do an endoscopy for me, in order to rule out other complications. The type of endoscopy that he did was non-invasive, required no prep or anesthesia, and didn't impact my diet at all. The test involved me swallowing a small pill which was actually a camera, and wearing a body harness (which held the computer) plus mostly not eating or drinking for about 8 hours.
After the 8 hours, I returned to my GI doctor's office and they removed the harness, etc., and said the camera had finished its work, which was to take pictures every 8 seconds or so all the way down the digestive tract. About 24 hours later, the little camera "came out the other end" as it was supposed to!
A week later, I went back to the office and was treated to a computer slide show of the photos taken by the camera. No biopsies were done, so obviously this type of endoscopy would not detect anything requiring that. However, it did provide a very good look at the other parts of my digestive system not seen on the colonoscopy. Everything appeared normal, and I did get some peace of mind from ruling out such possibilities as ulcers, and other damage that would have shown up on visual exam.
Wishing you all the best, and please keep us posted.
~ Holly
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
This is total b.s. GI doc #2 at the most prestigious hospital in the state of Florida--Shands/UF teaching hospital had no problem sending out original slide to pathologist #2 from GI doc #1 who was NOT IN THE SHANDS/UF system. Pathologist #2 had no problem reinterpreting original slide from Pathologist #1. Pathologist #2 was in a different lab from Pathologist #1.At my visit, I asked my GI doc about the slides and he said "The person he took them to (pathologist) said he couldn't read slides prepared by another lab. My doc said my original report was fine.
GI doc #2 said they routinely will take another look at the original slides as she does not like to subject patients to additional colonoscopies or additional endoscopies if there is no reason to. Anesthesia is risky. Think of Joan Rivers who died while having I think an endoscopy.
GI doc #2 routinely sees patients from all over Florida. i.e. the most prestigious lab system associated with UF/Shands has no problem taking a look at slides from other pathologists around the state.
The vibe I got was it was not that unusual to have a second pathologist take a look at a slide.....kind of like a second opinion.
I am sorry you are going through this. I am unable to comment on the rest.
Hi Terre,
I couldn't remember if you've tried the bile acid sequestrants? cholestyramine? or welchol or colestipol?
I'm on day 3 of cholestyramine and I'm having good results. I decided to try after seeing Polly's post about cholestyramine. I went to PCP and told him I'd been on a 3 month flare after 5 year remission and I could not kick out of it. I used the following phrase--"What are your thoughts on the bile acid sequestrants?" I had been on Entocort in the past and it worked but I had a lot of side effects.
He had no problem prescribing it. Best of all it was cheap. Only $4.00.
Per Polly's instructions I started with a very small dose. First two days I took 1/2 packet (2 gram per day or 1-1/2 teaspoon per day)
Day three I cut back to 1 teaspoon dose.
Polly said it could take 4 weeks or so to work but I'm having decent results already. No WD.
Brandy
I couldn't remember if you've tried the bile acid sequestrants? cholestyramine? or welchol or colestipol?
I'm on day 3 of cholestyramine and I'm having good results. I decided to try after seeing Polly's post about cholestyramine. I went to PCP and told him I'd been on a 3 month flare after 5 year remission and I could not kick out of it. I used the following phrase--"What are your thoughts on the bile acid sequestrants?" I had been on Entocort in the past and it worked but I had a lot of side effects.
He had no problem prescribing it. Best of all it was cheap. Only $4.00.
Per Polly's instructions I started with a very small dose. First two days I took 1/2 packet (2 gram per day or 1-1/2 teaspoon per day)
Day three I cut back to 1 teaspoon dose.
Polly said it could take 4 weeks or so to work but I'm having decent results already. No WD.
Brandy
Holly, Brandy thanks for responding and offering your experience.
I'm at a total loss as to why the pathologist couldn't read my slides. The reason my local doctor sent me to this group was because they are associated and are linked to the same computer system. Now mind you, my slides were read by a pathologist at an off site location that the hospital uses and it sounds like they do the same. I just know I'm not getting a second opinion on my slides and "No, my report does not list mast cell count."
I have tried Welchol and could not take due to side effects. Took Cholestyramine for 5 weeks and stopped due to side effects. Took Budesonide for approx. 6 weeks and new GI switched me to Uceris (time release Budesonide) for 3 months (I am tapering with what I have left). Tried Xifaxan, but after three days started bleeding, so I was told to stop.
Brandy, GI doc said I could have nothing to eat after midnight, the drill about stopping things affecting blood clotting and to stop supplements. He mentioned small intestinal biopsy and said it would take about 2 minutes.....so doesn't sound like I would be under heavy sedation. I like your camera idea better, but alas he couldn't do the biopsy that way. I would hope he would as least have a look around while he's there! HA!!!
Thanks again,
Terre
PS: I'm trying ReMag along with Doctor's Best....still taking Vit D and B12 (that also has B6) and Calcium. I've just come to the conclusion that this is my cross to bear. Oh yeah, tried Allegra and think I will try Zrytec or Claritin next (I think those are the other two recommended).
I'm at a total loss as to why the pathologist couldn't read my slides. The reason my local doctor sent me to this group was because they are associated and are linked to the same computer system. Now mind you, my slides were read by a pathologist at an off site location that the hospital uses and it sounds like they do the same. I just know I'm not getting a second opinion on my slides and "No, my report does not list mast cell count."
I have tried Welchol and could not take due to side effects. Took Cholestyramine for 5 weeks and stopped due to side effects. Took Budesonide for approx. 6 weeks and new GI switched me to Uceris (time release Budesonide) for 3 months (I am tapering with what I have left). Tried Xifaxan, but after three days started bleeding, so I was told to stop.
Brandy, GI doc said I could have nothing to eat after midnight, the drill about stopping things affecting blood clotting and to stop supplements. He mentioned small intestinal biopsy and said it would take about 2 minutes.....so doesn't sound like I would be under heavy sedation. I like your camera idea better, but alas he couldn't do the biopsy that way. I would hope he would as least have a look around while he's there! HA!!!
Thanks again,
Terre
PS: I'm trying ReMag along with Doctor's Best....still taking Vit D and B12 (that also has B6) and Calcium. I've just come to the conclusion that this is my cross to bear. Oh yeah, tried Allegra and think I will try Zrytec or Claritin next (I think those are the other two recommended).
Hi Terry,
Brandy is right on target. A pathologist who cannot analyze biopsy slides prepared at another lab is either unqualified for her or his job, an elitist who resents people who seek second opinions, or a liar. Or maybe your GI doc was simply telling another "little white lie" on top of the first one (that you couldn't hand-deliver the slides).
Re-examining biopsy slides is a very common practice — that's one reason why all hospitals/labs in the U. S. keep biopsy slides for many years.
And yes, Joan Rivers died while undergoing an endoscopy exam. An (upper) endoscopy exam requires full anesthesia (or close enough for all practical purposes). The services of a licensed anesthesiologist is required by law for that procedure, I believe.
Regarding doing a gluten challenge — there will certainly be some small intestinal damage after 4 weeks, but in most cases the damage will not be significant enough to rate a Marsh 3 level, and nothing below a Marsh 3 level of damage will qualify for a celiac diagnosis because of the antiquated diagnostic criteria for an official diagnosis of celiac disease. Most GI docs don't even understand celiac disease well enough to do a gluten challenge right, so it's no wonder that they don't understand MC.
If I were in that situation I believe I would try cholestyramine again before considering any further tests (that will almost certainly provide no additional useful information). Did you use the Sandoz brand? The "lite" version contains dairy as I recall, and many people cannot tolerate it. Dosing is very important.
Tex
Brandy is right on target. A pathologist who cannot analyze biopsy slides prepared at another lab is either unqualified for her or his job, an elitist who resents people who seek second opinions, or a liar. Or maybe your GI doc was simply telling another "little white lie" on top of the first one (that you couldn't hand-deliver the slides).
Re-examining biopsy slides is a very common practice — that's one reason why all hospitals/labs in the U. S. keep biopsy slides for many years.And yes, Joan Rivers died while undergoing an endoscopy exam. An (upper) endoscopy exam requires full anesthesia (or close enough for all practical purposes). The services of a licensed anesthesiologist is required by law for that procedure, I believe.
That's a brilliant use of psychology to get what you want. Doctors (and most everyone else for that matter) are much more open to "suggestions" if they feel that the idea to recommend a treatment was theirs. It sidesteps the possibility of creating a sense of resentment. Doctors don't appreciate patients trying to tell them how to do their jobs, but they are certainly open to questions from a patient.Brandy wrote:I used the following phrase--"What are your thoughts on the bile acid sequestrants?"
Regarding doing a gluten challenge — there will certainly be some small intestinal damage after 4 weeks, but in most cases the damage will not be significant enough to rate a Marsh 3 level, and nothing below a Marsh 3 level of damage will qualify for a celiac diagnosis because of the antiquated diagnostic criteria for an official diagnosis of celiac disease. Most GI docs don't even understand celiac disease well enough to do a gluten challenge right, so it's no wonder that they don't understand MC.
If I were in that situation I believe I would try cholestyramine again before considering any further tests (that will almost certainly provide no additional useful information). Did you use the Sandoz brand? The "lite" version contains dairy as I recall, and many people cannot tolerate it. Dosing is very important.
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 Tex!
I did use Sandoz brand 2 x day for 5 weeks (not the light). I tried the Par brand for a few days (a friend of a friend gave me samples), but did not see improvement. Par helped this lady reach remission.
The reason I discontinued was 1) I saw no improvement and 2) my laser tech couldn't get my Rosacea veins to blanche (in another post) and she started questioning me about what I was doing different. She suspected the med was depleting my vitamin K. Instead of blanching, they bled under the skin and I bruised, which had never happened before.
I have an appt. with my regular internal medicine doctor on 9/20 and I've decided I'm not going to make any decisions until I visit with him. I've seen him for years and I trust him.....just want to see what he has to say.
Until then, I'm continuing with my diet, supplement program and trying the other antihistamines. Hoping that my taper on Uceris "holds" me at the point I'm at now.....I would hate to go "2 steps back". I'll finish the taper around 10/8.
Thanks for your help!
Terre
I did use Sandoz brand 2 x day for 5 weeks (not the light). I tried the Par brand for a few days (a friend of a friend gave me samples), but did not see improvement. Par helped this lady reach remission.
The reason I discontinued was 1) I saw no improvement and 2) my laser tech couldn't get my Rosacea veins to blanche (in another post) and she started questioning me about what I was doing different. She suspected the med was depleting my vitamin K. Instead of blanching, they bled under the skin and I bruised, which had never happened before.
I have an appt. with my regular internal medicine doctor on 9/20 and I've decided I'm not going to make any decisions until I visit with him. I've seen him for years and I trust him.....just want to see what he has to say.
Until then, I'm continuing with my diet, supplement program and trying the other antihistamines. Hoping that my taper on Uceris "holds" me at the point I'm at now.....I would hate to go "2 steps back". I'll finish the taper around 10/8.
Thanks for your help!
Terre
That's a heck of a note. Did you try any different dosing?
Cholestyramine depletes many vitamins and minerals, so supplementing at strategic times is necessary.
That sounds like a good plan. A good internist may come up with some insight on something that we might be overlooking.
You're most welcome,
Tex
Cholestyramine depletes many vitamins and minerals, so supplementing at strategic times is necessary.
That sounds like a good plan. A good internist may come up with some insight on something that we might be overlooking.
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.
Terre,
You're certainly not a pest. Most people on this board seem to have to try different doses or timing of doses of cholestyramine before they find one that works properly for them. Of course it doesn't work for everyone, but sometimes taking more or less can help. Taking less can reduce side effects and taking more can increase effectiveness. It can be taken 1 to 4 times per day. Taking it once a day can have different results than taking it 4 times a day.
Any other medications or supplements should be taken at least 2 hours before taking cholestyramine or 4–6 hours after taking cholestyramine. But even doing that, it will probably slowly deplete certain vitamins and minerals, so they may need to be supplemented (or supplemented in larger doses).
I've never taken it so I have no personal experience with it. Some of the members here who attribute their remission to using it need to be helping you out here because they may know tricks that you won't find on the label. Hopefully they will see your post and respond.
Tex
You're certainly not a pest. Most people on this board seem to have to try different doses or timing of doses of cholestyramine before they find one that works properly for them. Of course it doesn't work for everyone, but sometimes taking more or less can help. Taking less can reduce side effects and taking more can increase effectiveness. It can be taken 1 to 4 times per day. Taking it once a day can have different results than taking it 4 times a day.
Any other medications or supplements should be taken at least 2 hours before taking cholestyramine or 4–6 hours after taking cholestyramine. But even doing that, it will probably slowly deplete certain vitamins and minerals, so they may need to be supplemented (or supplemented in larger doses).
I've never taken it so I have no personal experience with it. Some of the members here who attribute their remission to using it need to be helping you out here because they may know tricks that you won't find on the label. Hopefully they will see your post and respond.
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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Gabes-Apg
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Further to Tex's reply above
Cholestryamine is also used to clear parasites and biotoxins. Some of the symptoms you mention could be the body clearing these.
and it is very likely that you may need to increase Vit D, Vit K intake before you try it again.
Cholestryamine is also known for depleting Magnesium.
(and ensure that you supplement with Vit D and Vit K well away from taking the cholestryamine)
Cholestryamine is also used to clear parasites and biotoxins. Some of the symptoms you mention could be the body clearing these.
and it is very likely that you may need to increase Vit D, Vit K intake before you try it again.
Cholestryamine is also known for depleting Magnesium.
(and ensure that you supplement with Vit D and Vit K well away from taking the cholestryamine)
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama