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05-19-2012, 03:45 PM   #1
courtsmum
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Mastocytic Enterocolitis

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...
05-19-2012, 05:36 PM   #2
billyjoel
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Welcome aboard courtsmum glad to have you here with us
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05-19-2012, 06:31 PM   #3
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I live in Deltona fl too!! How crazy - it's such a small town!

I think stress is a huge trigger for me too. I hope you start feeling better soon and welcome to the forum!
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05-22-2012, 09:11 AM   #4
David
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Hi there and welcome to the forum, I'm really glad you joined

I'm quite familiar with Mastocytic Enterocolitis but would love a little more information from you as the hairs on the back of my neck are standing on end a little bit.

1. Other than the colonoscopy, have you had any tests such as a small bowel follow through, pill cam (capsule endoscopy), CT scan of the abdominal region, or like procedures?

2. You mention you're on vitamin B12. What was your B12 level last time you were checked and when were you checked?

3. Have you had any tests such as fecal calprotectin or fecal lactoferrin?

4. Have they given you any reasons why you might have low ferritin?

5. Have they evaluated you for Celiac Disease?

The problem with mastocytic enterocolitis as a diagnosis is there are plenty of diseases that increase the number of mast cells. I want to make sure they checked you out properly for those others, first.
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09-03-2012, 02:31 PM   #5
courtsmum
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Hi, again. To try and answer some of the questions...

I had HORRIBLE periods - huge clots, lots of bleeding, so they did a novasure procedure. I believe they think that the low ferritin is from the blood loss. Had months of iron infustions and b12 shots (still taking monthly b12 shots). Also have fibroids which may also cause bleeding.

Haven't had any of the tests mentioned. My doctor says they don't have the ability to do the pill camera. Negative on celiac.

I have had to have my esophogas opened two times already in the last 10 years, and things are getting stuck again, so I will be off for another one next month.

I have also been diagnosed with fibro, lots of thinks like bulging disks, stenosis, etc. in back and neck, 30 + yrs with horrible migraines ( ), carpal tunnel, tendonitis...

Very frustrated not being able to get any relief. My GI dr. is very sympathetic and is truly trying to find something that will help, although nothing yet has. I wish that there was more information about mastocytic enterocolitis on the net. They would never even have found it if they hadn't stained after the colonoscopy.

David - I can't remember the # for my last b12, but it has finally come back up (at least for the time being.) But I would LOVE to know what else you know about mastocytic enterocolitis. There is really SOOO little out there (other than to take antihistamines - which for me don't work.)

I think my GI dr is finally understanding that for me, what I do to help the C pretty much always put me into D. It's horrible.

I had (for absolutely no reason - the one time in my life I WASN'T TRYING) lost about 40 lbs. in about 5 months. In about 5 months from then, I had gained it back. VERY WEIRD. I always tried to lose weight, but never could.

Any info would be greatly appreciated...
09-03-2012, 02:44 PM   #6
courtsmum
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Oh, btw - my Dr. says they see people every week now with ME (I asked!) So, it probably is not nearly as "rare" as people would think - just not routinely stained for when a colonoscopy would otherwise be "normal".

And David - I just read another post and you asked about poison ivy/oak - yes, pretty off the wall, but I have had it many, MANY times. When I get it, I have to actually get a shot to get rid of it... Why had you asked?
09-23-2012, 10:29 AM   #7
alaudicina
 
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Oh, btw - my Dr. says they see people every week now with ME (I asked!) So, it probably is not nearly as "rare" as people would think - just not routinely stained for when a colonoscopy would otherwise be "normal".

And David - I just read another post and you asked about poison ivy/oak - yes, pretty off the wall, but I have had it many, MANY times. When I get it, I have to actually get a shot to get rid of it... Why had you asked?
OMG CourtsMom I am so with you. I have horrible periods and back pain from accident I was in, and BTW my doctor says that STRESS is a MAJOR MAJOR factor in this disease. I actually notice that I have more attacks when I am stressed then when not. I have only had one colonoscopy and the doctor was very sure I had ME and NOT crohn's or celiac. He thinks I have IBS on top of it just because of the stress. Crohn's runs in my family. I think everything is so tainted with me though bec I am on other medications as well for other issues. I was diagnosed with a brain tumor and was on radiation for 7 months before it was figured out I didnt have a brain tumor. I think that really messed my stomach up, along with all of those OPIODS which I dont take anymore for my pain. I do take Xanax and Ambien for stress and sleeping, although I feel those irritate my condition as well. I live in Florida too...OMG call me LOL
01-14-2013, 10:50 PM   #8
Melody74
 
Join Date: Jan 2013
Location: Deltona, Florida
Hi, I just found this forum. I also live in Deltona, FL and was diagnosed with ME a year ago. My reason for going to the doctor was upper left side pain that started when pregnant with my now 3yr old. The pain starts mild and quickly increases till I can't stand it and I have to lay down on that side, it will go away in about 10mins, but once I get back up its starts all over again.
I found it hard to get a doctor to take it seriously because I'm in my 30s and they said it couldn't be anything serious, even though it was keeping me from having a normal life. Finally was sent to a GI doctor who gave me a colonoscopy (only because my Dad died of colon cancer 2yrs prior) and he was so sure they would find nothing. Surprise, they found a large precancerous polyp (said I had less than 2yrs before I had full blown colon cancer) and that I had Mastocytic Enterocolitis. He told me to take Clariton. After a few weeks my side pain completely disappeared. I eventually stopped taking Clariton because I worried how safe it was to take regularly. Just recently, after a year, my side pain has come back full force. I don't know if the pain is from ME or if I have another polyp. Was supposed to have another colonoscopy in December but no longer have insurance.
Here I am researching online looking for help and answers, including looking into a low histamine diet. My doctor really didn't give me any information and from what I've been reading I wish he had. I did not realize that ME increases my chances of colon cancer...which could explain why I was on my way to colon cancer at such a young age before. I would have definitely kept taking my antihistamines. However, taking an antihistamine seems to have no effect on the side pain, neither does pain medicine.
01-14-2013, 10:53 PM   #9
Melody74
 
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Courtsmom, I'm curious if we have the same GI doctor? Mine is located in Orange City off Enterprise Road.
01-14-2013, 11:11 PM   #10
alaudicina
 
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Melody u should empty ur pm so I could send u my number. U can call me tomorrow I would like to talk to u more. Ive been with th is for 5 years. Or if u feel comfortable pm ur cell and a good tims to call or text u
01-14-2013, 11:18 PM   #11
Melody74
 
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Still figuring this forum out. Silly you can't store pm, only allowed 2. Can you make signatures on here? I can't figure it out. :-/
01-14-2013, 11:39 PM   #12
Melody74
 
Join Date: Jan 2013
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Do you have certain triggers for ME. I'm still not sure if it's the ME that causes my side pain and not sure what triggers it. It seems it may be a combo of things. Like I notice my side pain about a week before my period is due. Sometimes I notice the pain when I need to "go".
But Christmas Eve and Christmas day I over ate lots of bad for me food. The day after Christmas I woke up with severe, non stop D, that lasted 2 days. I was so sick I wasn't sure if it was the ME, from eating badly, or the stomach flu, or a combo. So sick I lost 10lbs!
A couple weeks ago I decided to start working on my health and lean more towards a Raw Food Diet. I was eating scrambled eggs, 1 green smoothie(banana, spinach, frozen mix fruit), snacking on fruits and veggies, especially clementines, switched from soda to tea and eating like brown rice with chicken and a veggie for dinner. It was during this time that my side pain came back.
Not sure if my stomach is still upset from Christmas or if the foods I started eating were causing it. I've recently learned that some foods are high histamine, such as the spinach,tea, clementines and strawberries that I was eating, because I thought they were healthy for me. To find out all these high histamine foods are foods I love!! I love broccoli and green pepper, don't know how I could ever give those up.(and chocolate!!) I've also noticed wheat seems to bother my stomach as well. (once again, I thought switching to wheat I was doing something good)
Curious to know what others with ME have found to trigger symptoms and if they have had to limit foods or go on a low histamine diet.
01-15-2013, 08:32 AM   #13
David
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Hi Melody,

1. You can now have more than 2 PMs. We make it so new members can only have 2 for their first hour because we had trouble with spammers PMing people.

2. You can edit your signature here. This is found via the, "Settings" button at the top of the forum, then "Edit signature".

Welcome to the community by the way
01-16-2013, 10:32 PM   #14
alaudicina
 
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I emailed u melody
02-01-2013, 02:02 PM   #15
rollingrfarm
 
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I have had ME for at least 5 years and for most of that time is was controlled by chloestryamine -until my body started reacting (allergic?) to it. So I tried cromolyn sodium, antihistamines, antacids and bentyl. That really didn't help all that much. This past fall, I had a riding accident and was given Tramadol for pain. Guess what - Tramadol is my miracle ME drug! If I take one the night before and one when I get up and have a very light or no breakfast and also take Bentyl before meals, I am "normal". If I go more than 3 or 4 days without a Tramadol, my ME comes back. This works great for me as my symptoms are worse in the morning. I have to do a lot of traveling and field work for my job, and Tramadol has allowed me to work, comfortably. I told my family doctor about this (my gastro doc retired and I can't find a decent one or one that knows about ME) and he said there's no problem in taking Tramadol like this for the rest of my life! I eat and drink pretty much whatever I want but not coffee which is a huge trigger. I'm still working out the time frame as to the frequency of taking Tramadol and its effects on ME. If anyone else tries Tramadol, please post.
04-24-2013, 05:50 PM   #16
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I also may have mastocytic enterocolitis. I was diagnosed( biopsy) with a colonoscopy 2 years ago. I have collagenous colitis. However the conventional colitis meds: Asacol, Pentasa, Oral Budesonide, immodium pepto-, cholestyramine, all didn't help much. Plus I have a million intolerances and allergies, Raynauds, am atopic, have asthma, sleep apnea, rosacea, horrible pruritis all the time, joint pain, terrible facial flushing, 5-12 bms everyday, gerd, etc etc. I just had surgery for uterine cancer 2 weeks ago.
I live in Montreal, Quebec and am looking for an allergist who won't think I'm insane. By the wat I asked my gastroenterologist to prescribe sodium chromoglycate (off-label in Quebec) and he finally did. It helps with the colitis cramping but not the diarrhea. The Mastocytic society Canada has doctors in Ontario on their site but they won't deal with Quebec. I don't know which tests are recommended for diagnosis. Any help would be appreciated.
01-13-2015, 10:37 AM   #17
Kammy
 
Join Date: Jan 2015
Location: Palm Bay, Florida
Hello,

My 17-year old daughter was recently diagnosed with Mastocytic Enterocolitis when a biopsy of her colon revealed too many mast cells. Prior to the diagnosis, she had taken a number of tests and they all came back normal. We were relieved to finally know what was wrong. For several months, she has been taking Cromlyn Sodium. This hasn't helped her one bit and has actually made her symptoms worse. I have been giving her Claritin which helped somewhat but not enough to make a real difference. The other day, she had just a few sips of an energy drink (which always hurts her stomach) and she has been in extreme pain since then. She is also very bloated and gassy and her burps smell like rotten eggs. A few weeks back, she had severe pain and her GI switched her from Gastrocrom to Cromlyn but this is the same med. Other symptoms: Bruises easy, fatigue, diarrhea and constipation, jaundice eyes (although her blood work is normal), lactose intolerant, and brain fog - difficulty concentrating.

We are looking for a long term treatment plan that works AND a short term plan to help her manage her level 9.5 pain. This disease is draining her psychologically and I will travel to the ends of the earth to help her find the relief she so desperately needs.
03-02-2015, 07:33 PM   #18
k318808
 
Join Date: Mar 2015
I was just diagnosed today with Mastocytic Enterocolitis. I had a colonoscopy 3 weeks ago because I started having diarrhea about a year ago for no reason and it never returned to normal. My colonoscopy was good but my Dr. took a random biopsy that came back with this diagnosis. He called me today with the news and said he has never had a patient with this before that he had to look it up for himself. He is ordering a CT of my pelvis and abdomen and I went back for blood labs today. He is also referring me to a hematologist and said they may want to do a bone marrow biopsy. My mom had colon cancer at 42. I'm curious if this makes me even more at risk for colon cancer than I already was. And did anyone else have a bone marrow biopsy with this diagnosis?? It seems most of the posts I have read you all have severe stomach pain and multiple issues. I am young and healthy except for the diarrhea and after a 4 day round of antibiotics the prescribed that too has gotten better.
03-03-2015, 05:45 AM   #19
my little penguin
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The bone marrow biopsy may be to see if it's aslo systemic mastocystosis .
You need bone marrow to confirm
I would ask your hemotologist.
http://emedicine.medscape.com/article/203948-overview
http://www.mayoclinic.org/diseases-c...n/con-20036761

Good luck
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