Hi all. I have my first colonoscopy in October, but after months of trying to figure out what I've had for the past several years I really feel that I have one of the conditions in the Microscopic Colitis groups and will ask my doctor to test for that. I'm just curious to know if you feel that it sounds like that from your experiences too.
I've had "Irritable Bowel Syndrome" my whole life, diarrhea type. About 5 years ago I started having periods of very urgent, watery diarrhea which started about the same time I had West Nile Virus. The WNV was severe and I had menigitis with it. The diarrhea will come on suddenly, there is no blood and no pain except for an unsettling rumbling right before. Getting to the bathroom is always urgent, there is no such thing as holding it for awhile. Sometimes its explosive and sometimes it sounds as if I'm urinating. No nausea or vomiting. Lomotil helps. Eating will bring it on, but I'm not sure what food triggers it exactly. Can yogurt trigger attacks? I don't use artificial sweeteners, rarely have caffeine, don't smoke and rarely drink.
Sometimes I eat pasta, cheese and yogurt (can not drink milk though) without any obvious problems, unless the attacks can be delayed, then I don't know. I don't have the symptoms of parasites, foodborn illness, etc because this has done on so long with some periods of "remission" thrown in there. Right now its been months since I've had a normal stool.
I know you can't tell me for sure and I am getting tested, I would just like someone to tell me what they think. You know what its like to be afraid to go anywhere, afraid to eat, etc. I still do things but I do it with anxiety (and with lomotil). Thank you!
My first post here. Do you think I belong?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Radar, we're glad you found us.Yes, sounds like you may have MC. Do make certain that your doc takes biopsies during your colonoscopy.
Please read the info section for newbies and read at www.enterolab.com as well.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Ah moment!
Thank you. When I came across MC I had a real "Aha!" moment. I will definitely tell him I want biopsies and why, and I'm also going to look in to food sensitivities.
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Joefnh
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Radar it really sounds like MC to me. Most of us here are sensitive to wheat gluten (breads pastas... flour etc) and a fair number also react to anything with soy and like in your case dairy.
I would certainly have the doctor take a significant number of biopsies as this can be spotty in presentation meaning that one area may look normal but just a couple of inches away the biopsy would show MC.
The biopsies are important in diagnosing the disease but also I would look into food sensitivity testing. A company called Enterolab in Texas offers testing that will help identify which foods that can cause you problems. Some have been able to get insurance coverage for these tests if their doctor orders the test but if not you will have to pay for them yourself.
They can be found at https://www.enterolab.com/
Welcome to the group Radar.
--Joe
I would certainly have the doctor take a significant number of biopsies as this can be spotty in presentation meaning that one area may look normal but just a couple of inches away the biopsy would show MC.
The biopsies are important in diagnosing the disease but also I would look into food sensitivity testing. A company called Enterolab in Texas offers testing that will help identify which foods that can cause you problems. Some have been able to get insurance coverage for these tests if their doctor orders the test but if not you will have to pay for them yourself.
They can be found at https://www.enterolab.com/
Welcome to the group Radar.
--Joe
Joe
Hi Radar,
Welcome aboard. Yes, you definitely seem to be a candidate for MC. Be aware, though, if the disease is confirmed, unless your GI doc is on the cutting edge of research developments, he or she will almost surely argue that diet has nothing to do with MC, and he or she will insist that the diet changes that most of us make to achieve remission, are not recommended for treatment, (because it hasn't been proven by medical research). Since most of us here aren't doctors, we just ignore that foolishness, and go right ahead and do what we have to do, to get our lives back.
Please feel free to ask anything, and again, welcome aboard.
Tex
Welcome aboard. Yes, you definitely seem to be a candidate for MC. Be aware, though, if the disease is confirmed, unless your GI doc is on the cutting edge of research developments, he or she will almost surely argue that diet has nothing to do with MC, and he or she will insist that the diet changes that most of us make to achieve remission, are not recommended for treatment, (because it hasn't been proven by medical research). Since most of us here aren't doctors, we just ignore that foolishness, and go right ahead and do what we have to do, to get our lives back.
Please feel free to ask anything, and again, welcome aboard.
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.
The story you relate is really quite typical. “Very urgent, watery diarrhea, no blood and no pain, sometimes explosive, no nausea or vomiting, afraid to go anywhere, afraid to eat, etc., etc. all with occasional remission of symptoms.” From your short history here it would seem, fairly likely that you do have one of the types of Microscopic Colitis.
It is believed that a fair percentage of folks who have been handed a diagnosis of IBS (Irritable Bowel Syndrome) in the past -- really do have an IBD (Inflammatory Bowel Disease). After all this time, it would certainly worth your while to pursue further diagnosis.
A diagnosis of MC can ONLY be made by an exam with a scope and biopsies. Until/unless confirmed by biopsy, your symptoms will continue to be labeled as IBS. If this is MC, there will be no abnormality evident in the mucosal lining of the colon ---- as the active pathology of MC is located in the tissues beneath the mucousal lining of the colon.
It is likely that the Physician who scheduled the colonoscopy suspects MC. --- But maybe not. Can’t hurt to ask. Ask -- What different things will they be looking for? (What are they are trying to rule out? And possibly more importantly, what they are trying to rule in?)
What must be understood is that the origin(s) of the IBD’s is not known. Hence, it then becomes easier to understand why management is not always so totally clear cut. There are medications commonly used. There is also some dietary management that may help.
You will read volumes regarding responses to both diet and medications here on this web-site. Good to remember that people are all different, and tend to respond to medications and diet in their own way. It can be something of trial and error. But you will get there.
First ------ Get a Diagnosis! Then read here --- and ask away.
Good luck, I bet you are about to get on track to solve this vexing issue. Yup, everyone here has 'been there'.
Gayle
It is believed that a fair percentage of folks who have been handed a diagnosis of IBS (Irritable Bowel Syndrome) in the past -- really do have an IBD (Inflammatory Bowel Disease). After all this time, it would certainly worth your while to pursue further diagnosis.
A diagnosis of MC can ONLY be made by an exam with a scope and biopsies. Until/unless confirmed by biopsy, your symptoms will continue to be labeled as IBS. If this is MC, there will be no abnormality evident in the mucosal lining of the colon ---- as the active pathology of MC is located in the tissues beneath the mucousal lining of the colon.
It is likely that the Physician who scheduled the colonoscopy suspects MC. --- But maybe not. Can’t hurt to ask. Ask -- What different things will they be looking for? (What are they are trying to rule out? And possibly more importantly, what they are trying to rule in?)
What must be understood is that the origin(s) of the IBD’s is not known. Hence, it then becomes easier to understand why management is not always so totally clear cut. There are medications commonly used. There is also some dietary management that may help.
You will read volumes regarding responses to both diet and medications here on this web-site. Good to remember that people are all different, and tend to respond to medications and diet in their own way. It can be something of trial and error. But you will get there.
First ------ Get a Diagnosis! Then read here --- and ask away.
Good luck, I bet you are about to get on track to solve this vexing issue. Yup, everyone here has 'been there'.
Gayle
Thanks you all.
I haven't even talked to the Doc yet. I set up the appt myself for a baseline since I'm 50, but when i go I'm bringing this info with me as when as info on enterolab testing. Dairy, soy and wheat...yikes. For YEARs I have started each day with a smoothy I make using yogurt, fruit, juice and soy protein. I recently switched to hemp protein and that seemed to help me feel a little better. Also, I've alway been a carb craver, especially pasta. The idea of switching to gluten free scares me, it seems so overwhelming. Soy free doesn't seem bad and dairy is still pretty scary. I'm really looking forward to knowing anyway and then doing what I have to do. There is a wonderful Naturapath a few hours from me I may go to. There nearest GI is 2 hours away. A general surgeon is doing my colonoscopy (he's a good one though). I live in Wyoming in the boondocks! Fortunately I'm pretty good at being my own advocate though.
I find soy to be the worst intolerance for me because it's in everything. 
There are substitutes for gluten.
Your doc may have problems with EnteroLab. He also may not think diet plays any role in your D problem. We, the suffers of MC, know otherwise.
There are a few of us that don't react to gluten but the rest do.
There are substitutes for gluten.
Your doc may have problems with EnteroLab. He also may not think diet plays any role in your D problem. We, the suffers of MC, know otherwise.
There are a few of us that don't react to gluten but the rest do.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Welcome from Hong Kong, Radar
Good luck with your colonoscopy when you have it. As you can read here, the prep is the worst part.
All best, Ant
It does not have to be the end of good Italian food. As I read your post I am in an Italian restaurant eating a clam risotto (no cheese or butter in it - olive oil instead). Also you can get rice pasta. I have come to appreciate pure simple food much more since dealing with my food intolerances.I've alway been a carb craver, especially pasta.
Good luck with your colonoscopy when you have it. As you can read here, the prep is the worst part.
All best, Ant
Sounds like you "fit" quite well. Sorry, but it's always good to know what you are dealing with rather than just some vague diagnosis.
I have no abdominal pain either but the nausea/vomiting was horrible.
Welcome to the board.
Shirley
I have no abdominal pain either but the nausea/vomiting was horrible.
Welcome to the board.
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Thanks again.
If my doctor doesn't want to talk to me about diet effects or testing I'll go to one who will. I'm ready for some "solid" information (pun intended!) 
That might be a really difficult task as most docs refuse to believe diet has anything to do with MC. They just 
their eyes and say diet has nothing to do with it.
Most of us just go on the diet ourselves in spite of what our GI docs believe. I also had to do the EnteroLab testing in spite of my GI's protestations.
Luckily, she is listening to me now. I go to my appointments armed with the great posts from this forum. At my appointment last week, she said I was educating her and I said you are listening. It was a far cry from my first experience with her.
their eyes and say diet has nothing to do with it.Most of us just go on the diet ourselves in spite of what our GI docs believe. I also had to do the EnteroLab testing in spite of my GI's protestations.
Luckily, she is listening to me now. I go to my appointments armed with the great posts from this forum. At my appointment last week, she said I was educating her and I said you are listening. It was a far cry from my first experience with her.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Welcome Radar,
In addition to testing for MC, you should ask your doctor about celiac disease. 30% of celiac disease patients also have MC, and your lactose intolerance may be a sign that parts of your small intestine are also affected. I made the mistake of going gluten free after I got my Enterolab results, but before I had definitive testing for celiac disease and now I may never know. The first test is a simple blood test that you could have done before your colonoscopy. They can check for several antibodies and do a gene test. Enterolab also does a gene test, but you'd be better off with a blood test covered by your insurance. If genes or antibodies are positive, they would probably schedule an upper endoscopy with biopsy to know for sure. Do you or members of your family have any other autoimmune diseases (Type 1 diabetes, autoimmune thyroid disease, etc). The genes that predispose to celiac disease also predispose to a number of other autoimmune conditions.
I never suspected gluten was my primary intolerance. I blamed everything else (fats, spicy food, alcohol, dairy, MSG, etc.) Gluten is the last thing you suspect, but eliminating it is the first thing that makes you feel noticeably better. But do not go gluten free until you've had the testing done.
In addition to testing for MC, you should ask your doctor about celiac disease. 30% of celiac disease patients also have MC, and your lactose intolerance may be a sign that parts of your small intestine are also affected. I made the mistake of going gluten free after I got my Enterolab results, but before I had definitive testing for celiac disease and now I may never know. The first test is a simple blood test that you could have done before your colonoscopy. They can check for several antibodies and do a gene test. Enterolab also does a gene test, but you'd be better off with a blood test covered by your insurance. If genes or antibodies are positive, they would probably schedule an upper endoscopy with biopsy to know for sure. Do you or members of your family have any other autoimmune diseases (Type 1 diabetes, autoimmune thyroid disease, etc). The genes that predispose to celiac disease also predispose to a number of other autoimmune conditions.
I never suspected gluten was my primary intolerance. I blamed everything else (fats, spicy food, alcohol, dairy, MSG, etc.) Gluten is the last thing you suspect, but eliminating it is the first thing that makes you feel noticeably better. But do not go gluten free until you've had the testing done.
Why? The treatment will be the same, regardless of how those tests turn out. The main difference will be that your doctor will be happier, (and he or she will pocket a bunch of additional cash for doing the tests), and you will have to prolong the suffering until your doctor can get around to scheduling the tests, and a followup meeting. If you actually do have celiac disease, it will be a moot point, because the MC is far more difficult to treat than celiac disease, and if you control your MC by diet, the CD will automatically be controlled. So why worry about celiac disease?Zizzle wrote:But do not go gluten free until you've had the testing done.
The downside of having those tests done, is that if they turn out to be negative, (which they will, unless you have fully-developed celiac disease), then your doctor will view you as a fool, for following a restrictive diet, and he or she will try to convince you to eat a "normal" diet, (which, of course, will guarantee that you will continue to perpetuate the inflammation in your gut, if you follow that advice).
Until the medical industry gets it's act together, and begins to recognize the existence of non-celiac gluten sensitivity, better than 90% of those who are gluten-sensitive, continue to fall through the cracks in the system, (IOW, the celiac docs accurately diagnose about 1 in 10 cases, the other 9 remain "officially" undiagnosed). I simply can't endorse a diagnostic system that's so ineffective and so incompetent. They definitely do not have our best interests at heart, because much better testing methods are available, (stool testing), and yet they refuse to utilize them. That's incompetence, by definition.
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.