Hi. I have two great GI doctors (same practice). I was first told maybe about a year ago or more that I had IBS by my first doctor (who did a colonoscopy). I have been living with constipation (C) pretty much all my life, for as long as I can remember. After having my appendix taken out about 10 years ago I started alternating between chronic C and chronic diarrhea (D).
After having my 2nd colonoscopy in as many years, I was told my that I have mastocytic enterocolitis - my second doctor said he did NOT think I have IBS at all.
Since then my second doctor has treated me with with ranitidine and pepcid together, pepto bismol, probiotics, fiber therapy...
Went for another visit and my 2nd doctor has left the practice and first doctor again says I have IBS (and mastocytic enterocolitis).
Now I am back on histamine blocker (claritin) and fiber.
Unfortunately for me, this hasn't helped. My doctor's theory is that if he can get the C under control then the D should pretty much go away then, also. So he is concentrating on that. Well, for me it seems, anything that helps with the C inevitably will go back to D. I seem to be incapable of regular bowel movements, even with fiber, etc...
I'm not sure what he will try next. When I asked if this is something many people have, my doctor said that they are seeing about 1 new patient with it a week. That doesn't sound too "rare" to me... I just think that, because it is relatively new, that the doctors don't necessarily actually know what will help everyone, or if EVERYONE actually CAN be helped.
For me, the chronically stressed, stress might be my worst enemy (on so many levels). I also have fibro and chronic fatigue. Had iron infusions for low ferretin (5), am still on B12 shots etc., etc...
From everything (not much out there) I have read, stress can be very bad for it.
There may not be much out there with info because:
1. Considered a "new" disease (also "rare" on some sites like on the "Office of Rare Disease Research" - Genetic and Rare Diseases Information Center (GARD)) where it is defined as:
Mastocytic enterocolitis is a newly discovered disorder characterized by chronic intractable diarrhea due to the presence of increased mast cells in the intestine.[1] Mast cells play an important role in helping your immune system defend the body from disease by releasing chemicals (e.g., histamine and cytokines). Too many mast cells can cause irritation in the intestine resulting in symptoms including abdominal discomfort and chronic diarrhea.[2]
2. Is not routinely tested for in people with symptoms (chronic D) during a colonoscopy biopsy unless specifically asked for by the Doctor, or the person doing the biopsy does it anyway (which I think is actually what happened in my case - I don't think my dr. actually asked to have it stained. But itMUST BE STAINED to get a diagnosis because they CANNOT see the mast cells without staining.)
It does seem to be widely acknowledged that many, many more people would be diagnosed if their biopsy would be stained in people with D and "normal" colonoscopies.
(I guess it was a good thing for me that I had a polyp that they removed to have checked, or else I would still have no diagnosis...)
Generally speaking, the use of histamine blockers (type I like claritin and type II like pepcid) are supposed to work most of the time to reduce the histamine that the too mast cells are releasing, thus "curing" the problem. But I am not sure how that actually REDUCES the number of mast cells that you already have. Maybe this reduces the histamine, which alleviates the symptoms, but the number of cells stays the same, and when it "flares up" it starts again because the cells are still there.?...?
I'm definitely not crazy about not knowing when I will need a bathroom - URGENTLY!!!!!
Well, that is my story. Not sure how it is going to end...
After having my 2nd colonoscopy in as many years, I was told my that I have mastocytic enterocolitis - my second doctor said he did NOT think I have IBS at all.
Since then my second doctor has treated me with with ranitidine and pepcid together, pepto bismol, probiotics, fiber therapy...
Went for another visit and my 2nd doctor has left the practice and first doctor again says I have IBS (and mastocytic enterocolitis).
Now I am back on histamine blocker (claritin) and fiber.
Unfortunately for me, this hasn't helped. My doctor's theory is that if he can get the C under control then the D should pretty much go away then, also. So he is concentrating on that. Well, for me it seems, anything that helps with the C inevitably will go back to D. I seem to be incapable of regular bowel movements, even with fiber, etc...
I'm not sure what he will try next. When I asked if this is something many people have, my doctor said that they are seeing about 1 new patient with it a week. That doesn't sound too "rare" to me... I just think that, because it is relatively new, that the doctors don't necessarily actually know what will help everyone, or if EVERYONE actually CAN be helped.
For me, the chronically stressed, stress might be my worst enemy (on so many levels). I also have fibro and chronic fatigue. Had iron infusions for low ferretin (5), am still on B12 shots etc., etc...
From everything (not much out there) I have read, stress can be very bad for it.
There may not be much out there with info because:
1. Considered a "new" disease (also "rare" on some sites like on the "Office of Rare Disease Research" - Genetic and Rare Diseases Information Center (GARD)) where it is defined as:
Mastocytic enterocolitis is a newly discovered disorder characterized by chronic intractable diarrhea due to the presence of increased mast cells in the intestine.[1] Mast cells play an important role in helping your immune system defend the body from disease by releasing chemicals (e.g., histamine and cytokines). Too many mast cells can cause irritation in the intestine resulting in symptoms including abdominal discomfort and chronic diarrhea.[2]
2. Is not routinely tested for in people with symptoms (chronic D) during a colonoscopy biopsy unless specifically asked for by the Doctor, or the person doing the biopsy does it anyway (which I think is actually what happened in my case - I don't think my dr. actually asked to have it stained. But itMUST BE STAINED to get a diagnosis because they CANNOT see the mast cells without staining.)
It does seem to be widely acknowledged that many, many more people would be diagnosed if their biopsy would be stained in people with D and "normal" colonoscopies.
(I guess it was a good thing for me that I had a polyp that they removed to have checked, or else I would still have no diagnosis...)
Generally speaking, the use of histamine blockers (type I like claritin and type II like pepcid) are supposed to work most of the time to reduce the histamine that the too mast cells are releasing, thus "curing" the problem. But I am not sure how that actually REDUCES the number of mast cells that you already have. Maybe this reduces the histamine, which alleviates the symptoms, but the number of cells stays the same, and when it "flares up" it starts again because the cells are still there.?...?
I'm definitely not crazy about not knowing when I will need a bathroom - URGENTLY!!!!!
Well, that is my story. Not sure how it is going to end...