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Hi all,
Just back from my appointment with the GI/mast cell specialist in Boston this morning. He wants to do another sigmoidoscopy since the initial diagnosis of lymphocytic colitis was ten years ago. He says my symptoms - bloating, cramping, no D as long as I just eat meat and potatoes - aren't super typical of LC and that it seems like more a problem with bacterial overgrowth in the small intestines than a problem with the colon. He started talking about IBS, which made me concerned since I know that means, "We don't know what you have or how to treat it." But at least he wants to get more information. And he was very personable and willing to have a dialogue. He's going to wait to do the sig until the end of my first trimester. That's only two weeks away, so not too long now. I'm so desperate to eat different foods that I was ready to ask for meds, but he said it would interfere with a diagnosis in two weeks, which makes sense to me.
He also said he wasn't sure I was a candidate for having mast cell issues since I only have the digestive symptoms, and usually people with mast cell problems have multiple symptoms. Does that sound correct based on what we know here?
Also, has anyone here been diagnosed with LC and then had it turn into something else? Or is it very likely that I'll come back with the same diagnosis I had ten years ago?
Thanks!
Elizabeth
Initial discussion with GI today
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Whoa! That's a depressing appointment outcome. When he says that your symptoms "aren't super typical of LC", that sounds as though he doesn't believe that MC can be triggered by food sensitivities.
LC can, (and often does), turn into CC, and CC can turn into LC, but that's irrelevant, because they are interchangeable. Rarely, a few cases segue into UC, but the odds are no greater than the odds of someone in the general population developing UC.
If the pathologist goes by the classic definition of LC, and you are in remission, (or close to remission), he will probably try to convince you that you no longer have LC, (because they don't consider a lymphocyte count below 20 per 100 enterocytes to be a marker of LC, even though it should be). Normal lymphocyte counts run below 7 per 100 enterocytes, and most MCers who are in remission, have lymphocyte counts between 10 and 20 lymphocytes per 100 enterocytes, (but the guys in the white coats don't have a classification category for that range, so that's no man's land, unfortunately, and many, many cases of LC are misdiagnosed, because of it).
I don't know about you, but I'm disappointed. Hopefully, he will redeem himself at the next appointment. Any GI doc who brings up IBS, cancels his credibility, IMO.
Tex
Yes, most people have other symptoms, but certainly not all people with intestinal mast cell issues.He also said he wasn't sure I was a candidate for having mast cell issues since I only have the digestive symptoms, and usually people with mast cell problems have multiple symptoms. Does that sound correct based on what we know here?
LC can, (and often does), turn into CC, and CC can turn into LC, but that's irrelevant, because they are interchangeable. Rarely, a few cases segue into UC, but the odds are no greater than the odds of someone in the general population developing UC.
If the pathologist goes by the classic definition of LC, and you are in remission, (or close to remission), he will probably try to convince you that you no longer have LC, (because they don't consider a lymphocyte count below 20 per 100 enterocytes to be a marker of LC, even though it should be). Normal lymphocyte counts run below 7 per 100 enterocytes, and most MCers who are in remission, have lymphocyte counts between 10 and 20 lymphocytes per 100 enterocytes, (but the guys in the white coats don't have a classification category for that range, so that's no man's land, unfortunately, and many, many cases of LC are misdiagnosed, because of it).
I don't know about you, but I'm disappointed. Hopefully, he will redeem himself at the next appointment. Any GI doc who brings up IBS, cancels his credibility, IMO.
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.
Well, yeah, I was pretty disheartened to hear him say IBS. He wasn't saying I had it, but he was mentioning it as a possible diagnosis. But I want to do the sig and see what comes back before I rule him out. I mean, he's a nice guy and wasn't super hard-headed (well, except when I told him that I get all of my info here, and he shook his head, and said, "Be careful of those forums. Sometimes people confuse their diagnoses.")
I was also doing some more reading about small intestinal bacterial overgrowth, though, and all of my symptoms seem classic for this syndrome. The problem is that the testing for it is quite unreliable. And I'm concerned about the treatment of it - antibiotics. What I was reading today said that sometimes antibiotics have to be continued regularly - as in 3 weeks of, 1 week on. That seems like a recipe for HUGE problems down the road. i.e. a recurrence of MC, anyone??? Geez.
Oh, and Nancy, I saw Dr. Matthew Hamilton at the Brigham. I would have loved to have gotten in to see his senior colleague, Dr. Greenberger, but I just needed to get in as quickly as possible, and Dr. Hamilton had an opening three days after I called.
I was also doing some more reading about small intestinal bacterial overgrowth, though, and all of my symptoms seem classic for this syndrome. The problem is that the testing for it is quite unreliable. And I'm concerned about the treatment of it - antibiotics. What I was reading today said that sometimes antibiotics have to be continued regularly - as in 3 weeks of, 1 week on. That seems like a recipe for HUGE problems down the road. i.e. a recurrence of MC, anyone??? Geez.
Oh, and Nancy, I saw Dr. Matthew Hamilton at the Brigham. I would have loved to have gotten in to see his senior colleague, Dr. Greenberger, but I just needed to get in as quickly as possible, and Dr. Hamilton had an opening three days after I called.
He mentions IBS, and in the next breath or so he says that? Apparently forums aren't the only places where "people" are confused about diagnoses."Be careful of those forums. Sometimes people confuse their diagnoses."
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.
I suppose I'll wait until after the next appointment before I remove his name from our list of "recommended" mast cell experts who are gastroenterologists.
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.
Well, this is disappointing news. I had told myself that I would travel to Boston after DH's retirement so I could finally talk to someone who knew something.
My take is that mast cell specialists are just that - specialists in treating mast cells. We've been thinking that they are better at diagnosing MC and its connection to mast cells, but it sounds like they've compartmentalized the two conditions. A similar result happened to a friend of mine when he went to see a GI practice in Chicago. Some of the doctors in that practice wrote the paper on Mastocytic Enterocolitis. The friend's colonoscopy didn't reveal a mast cell problem or MC, so they sent him away with very general instructions. He's no closer to having a solution. It seems that mast cell specialists aren't any better at treating MC than any other GI.
I don't think that mast cell specialists recognize any food insensitivies other than the high-histamine foods.
Beth, are you concerned about getting anesthesia for the sigmoidoscopy? Or are they giving it to you without sedation? I went under for mine five years ago, which is why I ask.
It's beginning to like we're all on our own once we're diagnosed. Thank Heaven for this forum.
Gloria
My take is that mast cell specialists are just that - specialists in treating mast cells. We've been thinking that they are better at diagnosing MC and its connection to mast cells, but it sounds like they've compartmentalized the two conditions. A similar result happened to a friend of mine when he went to see a GI practice in Chicago. Some of the doctors in that practice wrote the paper on Mastocytic Enterocolitis. The friend's colonoscopy didn't reveal a mast cell problem or MC, so they sent him away with very general instructions. He's no closer to having a solution. It seems that mast cell specialists aren't any better at treating MC than any other GI.
I don't think that mast cell specialists recognize any food insensitivies other than the high-histamine foods.
Beth, are you concerned about getting anesthesia for the sigmoidoscopy? Or are they giving it to you without sedation? I went under for mine five years ago, which is why I ask.
It's beginning to like we're all on our own once we're diagnosed. Thank Heaven for this forum.
Gloria
You never know what you can do until you have to do it.
I have another comment about the sigmoidoscopy recommendation. I don't understand what the GI expects to find during the examination. He can take a biopsy to determine if you have MC, but you already know you have it. He can stain it for evidence of histamine, but he's already decided that you don't have a histamine problem. At the very least, he should stain the biopsy.
My GI also wants to do a sigmoidoscopy. Actually he wants to do a colonoscopy, but I declined. When I asked him why he wants to do one, he couldn't give me a specific reason. It was clear that he was, as Tex wrote, "going fishing." If a doctor wants to perform an invasive procedure, I think we have a right to know why. We also should ask them how they will treat us based on their findings. If they hem and haw, like my GI did, then they're just using us as a exploratory specimen. We're the ones who have to deal with an inflammed gut as a result of the caustic substance we used to prepare for the procedure.
Sorry, but I'm pretty fed up with GIs right now. In a way I pity them, because when it comes to MC, they clearly don't know how to treat their patients. They're clueless, and they know it.
Gloria
My GI also wants to do a sigmoidoscopy. Actually he wants to do a colonoscopy, but I declined. When I asked him why he wants to do one, he couldn't give me a specific reason. It was clear that he was, as Tex wrote, "going fishing." If a doctor wants to perform an invasive procedure, I think we have a right to know why. We also should ask them how they will treat us based on their findings. If they hem and haw, like my GI did, then they're just using us as a exploratory specimen. We're the ones who have to deal with an inflammed gut as a result of the caustic substance we used to prepare for the procedure.
Sorry, but I'm pretty fed up with GIs right now. In a way I pity them, because when it comes to MC, they clearly don't know how to treat their patients. They're clueless, and they know it.
Gloria
You never know what you can do until you have to do it.
I am going to see him in about a month...I am strictly going to discuss mast cells and if I may have some sort of issue with them. I had a colonoscopy/endos last January, there is no way I'm going thru any sort of tests like that again! (well for a while anyways :)
I have LC, celiac, endometriosis
food sensitivities
random 'heat rashes'
itchy
red face when drinking alcohol (haven't had any for months)
positive ana, high titer homogeneous/speckled
high bilirubin
low wbc
I'm sure other things that aren't coming to mind but, I want some answers!
I wonder if he think gastrocrom would work? I guess I would need a dx first...
I have LC, celiac, endometriosis
food sensitivities
random 'heat rashes'
itchy
red face when drinking alcohol (haven't had any for months)
positive ana, high titer homogeneous/speckled
high bilirubin
low wbc
I'm sure other things that aren't coming to mind but, I want some answers!
I wonder if he think gastrocrom would work? I guess I would need a dx first...
Yes, a gastrocrom prescription is the only reason to see a mast cell specialist, IMO. I agree that they won't prescribe it without a dx. How they Dx it is the issue. It seems that they want specific results, such as evidence of mast cells on a biopsy, elevated tryptase levels, bone marrow testing, etc. Not all of these are necessary, but apparently some postive testing results are.Jenny wrote:I wonder if he think gastrocrom would work? I guess I would need a dx first...
These specialists are used to seeing patients with extreme reactions to mast cells. Some patients have to be hospitalized due to anaphylactic shock. Others have hives all over; some have "flushing". Diarrhea seems to be a troubling, but minor symptom.
Gloria
You never know what you can do until you have to do it.
with Gloria's assessment. Mast cell issues are in a situation very similar to celiac disease, IMO. If you have such a serious case that you have to be hospitalized, then it's easy to get a diagnosis, (just as having positive serology and total villus flattening in your small intestine will get you a diagnosis of celliac disease).If your case is not that serious, though, (or if it just hasn't developed to a severe stage yet, such as non celiac gluten sensitivity), then obtaining a diagnosis can be a mighty tough row to hoe, (as we say on the farm).
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.
Sorry, just seeing these follow-up posts now.
Gloria, the GI is going to do the sig w/o anesthesia because he doesn't want to mess with things during pregnancy. It'll be be good practice dealing with pain since I'm planning on doing natural childbirth!
Can you tell me more about this staining business? I don't know anything about it, and it would be good to understand it before I schedule the sig.
Thanks!
Gloria, the GI is going to do the sig w/o anesthesia because he doesn't want to mess with things during pregnancy. It'll be be good practice dealing with pain since I'm planning on doing natural childbirth!
Can you tell me more about this staining business? I don't know anything about it, and it would be good to understand it before I schedule the sig.
Thanks!