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Crohn's Disease Forum » General IBD Discussion » Microscopic Colitis » Finding a Doctor Familiar with Mastocytic Enterocolitis



09-30-2013, 07:00 PM   #1
Chickadee
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Finding a Doctor Familiar with Mastocytic Enterocolitis

Any suggestions? Does anyone know of a list of doctors who are familiar with Mastocytic Enterocolitis? Thanks!
09-30-2013, 08:11 PM   #2
lizbeth
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I can't help but hope you get some good answers soon, good luck .
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09-30-2013, 09:11 PM   #3
Chickadee
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Thanks, lizbeth.
09-30-2013, 09:18 PM   #4
David
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Is it something you want tested for, have been diagnosed with, or suspect you have? If you want to be tested for it, that's not too tough. A doctor who knows how to properly treat it? Good luck.
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09-30-2013, 10:22 PM   #5
Chickadee
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David-- I was tested (after I requested the test), and my results came back borderline positive ("approx. 20 mast cells per hpf" but I am also on hydrocortisone). Because of my symptoms and results from other testing, I think that Mastocytic Enterocolitis may be the most accurate diagnosis for me so yes....now I'm looking for a doctor who knows how to properly treat it.
09-30-2013, 10:24 PM   #6
David
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I don't know that any doctor knows how to properly treat it at this point.

May I ask what your symptoms are?
09-30-2013, 10:50 PM   #7
Chickadee
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I would settle for a doctor who has an interest in learning how to treat it.

In 2008, I became ill with what seemed to be a stomach bug (nausea, vomiting, diarrhea, severe cramping), but it didn't go away. I lost 35 lbs., had a bunch of scopes and other tests which were normal, diarrhea increased to up to 10x per day. I developed debilitating fatigue. At this point, the diarrhea is mostly controlled with cholestyramine, but I still deal with abdominal pain, nausea, stomach cramps and intolerance to many, many foods. And unrelenting fatigue. I had my most recent colonoscopy this spring after I ended up in the ER with severe cramps, diarrhea, bleeding and dehydration. The scope (one month post-ER incident) was normal, with the increased mast cells the only abnormality (well, and a hyperplastic polyp and hemorrhoids).
10-01-2013, 08:14 AM   #8
David
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If it was me, I wouldn't let them chock those symptoms up to mastocytic enterocolitis and send me on my way. If they want to try treating it as ME, that's fine, but I'd also want them to keep trying other things. Anyway, treatment for ME is going to be a combination of antihistamines to start. Did anyone do that for you?
10-01-2013, 10:42 AM   #9
Chickadee
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Actually, they're trying to tell me it's IBS and send me on my way. I'm talking to the doctor about trying Gastrocrom.
10-01-2013, 10:51 AM   #10
David
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IBS with bleeding and 35lbs of weight loss? Heh.
10-01-2013, 11:38 AM   #11
Chickadee
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Yep. I think it's the GIs' favorite diagnosis. And I've seen five gastroenterologists over the past several years. My only abnormal test result has been the increased mast cells so I figure I'd at least like to follow up with that.

Last edited by Chickadee; 10-01-2013 at 12:05 PM.
10-04-2013, 01:45 PM   #12
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Does anyone have any recommendations? Is anyone here diagnosed with Mastocytic Enterocolitis?
10-04-2013, 02:19 PM   #13
David
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I've moved your thread here to the microscopic colitis subforum. There's a few people diagnosed with it here. They may see your thread or you can contact them via theirs. Good luck to you
10-13-2013, 04:06 PM   #14
Chickadee
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No one?
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