# Anyone Heard of Mastocytic Enterocolitis?



## ManualShift (Feb 17, 2007)

Well, went back to the doctor today. The endoscopy came out fine and no problems there. They want me to take pepcid for six weeks. They suspect reflux since I had a lower esophageal ring that was dilated. I asked if they could not see the damage from reflux with the scope but they still want me to take the pepcid.Then we got the colonoscopy results. They said everything looked fine but the biopsy came back as mastocytic enterocolitis. It was explained to me to be like an allergy which causes a runny gut that eventually causes my D. So they put me on clarinex for that. I got the impression it can be cured and won't kill me. I asked about my missing gall bladder and bile salts. They didn't seem to think that was the cause.Anyone ever heard of mastocytic enterocolitis? I've looked on the web extensively and have not found anything. There's plenty on enterocolitis but that is pretty general.So now I'm scheduled for a small bowel series of x-rays. Thankfully, the prep is just not eating after midnight.So, technically, my self diagnosis of IBS hasn't stuck yet. Kinda makes me hopeful that this might be cured as opposed to the trials and tribulations of an IBS diagnosis.I just hope my lips don't crack and bleed from all this antihistamine!edit: Corrected title and spelling of diagnosis


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## 16229 (Jan 28, 2006)

someone can correct me if I'm wrong, but mastocytes are pieces of tissue that are involved with immune function. They release histamine during allergic reactions and also release chemicals during an injury.I'm assuming that means you have inflammation in them. I believe that could screw up seratonin regulation a little and give someone symptoms that are similar to IBS. Don't really know anything about treatment, though.


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## ManualShift (Feb 17, 2007)

OK, that's kind of what I was seeing in my searches as well. Treatment is with allergy medication, clarinex (claritin?) in my case. Kind of funny since I never have allergy problems in general. We'll see what happens next.Short of gall bladder removal, I've been uber healthy. The often-D and seldom-C have only been annoyances I've lived with until the lower esophageal ring thing got to be a problem. I only mentioned it because I was already at the doctor's office and they asked if I had any other questions. I would have never gone for just the D alone. I guess I shouldn't be so stubborn next time.


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## Kathleen M. (Nov 16, 1999)

Mastocytes are cells, not tissues, but basically you have the idea.Mastocytosis is when you have that generally in they body, but it could be specific to the gut.The response of the intestines to histamine is to dump water and mucus into the center space and move everything along quickly, which leads to diarrhea.They play a role in allergy, but have other roles in the body as well so I think you can have problems with them that aren't tied to an inappropriate response to a substance. After all we don't have them just to cause allergies, like anything in the body they have several roles.K.


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## ManualShift (Feb 17, 2007)

I just had an upper GI as well, to be thorough, as they say. Too early for results. She also had some more blood tests ran to be sure there was no inflammation showing in my blood.The nurse practitioner said she'd call if they found something and to follow up in six weeks. I'm going to give her 7 business days and call to see what they found and schedule my next appointment. If for no other reason than to finalize the fact that I'm going to live despite the fact that I don't like taking medicine.







I doubt I continue the drugs if it shows no improvement. I even think the pepcid makes me cramp worse. I tolerate it just fine without meds but since I started them, it feels more intense and annoying.Frankly, I really can't tell much of a difference with the meds (clarinex and pepcid) but I'll give them 30 days to make/break the symptoms. I've found absolutely nothing on mastocytic enterocolitis other than the feedback I've gotten from you fine folks. She said it was a recent discovery. Lucky me!I know it is spelled correctly because I wrote it down from the report she had up on her screen. Go figure.On the plus side, it hit 70F and I put the top down for the first time this year!edit: corrected spelling of diagnosis


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## Kathleen M. (Nov 16, 1999)

http://www.ncbi.nlm.nih.gov/entrez/query.f...5&dopt=CitationMaybe it was wrong on the report as I found this "Mastocytic enterocolitis"


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## ManualShift (Feb 17, 2007)

That could very well be the case. I will ask at the next opportunity. It does sound like what was relayed to me about it. The antihistamine, clarinex, was prescribed to slow/stop the production of mucous. Using that spelling I get a lot of hits. Google didn't even suggest the alternate spelling. Thanks and great catch. I just hope that is what I'm looking for.


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## gilly (Feb 5, 2001)

Hi manualshift Well this is interesting.Sounds like you have a good doctor to find something so new.Let us know if the meds work please.What dose of clarinex are you on?Just interested whether you have a lot of pain too.Thanks gilly


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## ManualShift (Feb 17, 2007)

I take 5mg of clarinex per day, usually around 8-9pm and 20mg of pepcid twice a day, usually 7am and 8-9pm with the clarinex. Both are antihistamines. I swear my nose runs more now than when I didn't take them.As for pain, I get some cramps and gas. Sometimes the cramps are just an irritant and now and again it will double me over. It has even jolted me from sleep.As for effective, the first few days didn't seem to help. Then I had a barium follow through and it D for the morning before the test. Then with all the barium in my system, it took 24 hours for things to flush out. That was the most normal my gut has been since my last barium ingestion.Today doesn't seem so bad, just a mild cramp and better but not normal and only one before work. But a day doesn't make a trend so I'll see what happens after a good solid week of it.


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## ManualShift (Feb 17, 2007)

I have a follow up on Wednesday, 3/21 so I'll find out what's going on. I backed off the fiber because it was only increasing the quantity not the quality. I still go several times a day but it is not so much D any more. Maybe I'm close to a cure!I'll post a follow up when I know more.


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## ManualShift (Feb 17, 2007)

Well, had my follow up. I was told to keep taking pepcid twice a day and clarinex in the evening. So far I've pretty much dropped the benefiber back to once or twice a week.To date, things are different. 30 days worth of medication under my belt (tongue?) and my next appointment is the end of May.I still get D about 2 twice a week but it usually a single episode and no immodium is needed. If you call that better, I'm better. Has anyone had a diagnosis of Mastocytic Enterocolitis? Anyone notice that your IBS-D is better when you are taking antihistamines? If so, you should think of asking your Dr about this.


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## 14000 (Apr 30, 2007)

Wow. I just found this site. I was diagnosed with the exact same thing a few weeks ago (after colonoscopy)and have been taking zantac (acid reducer) and zyrtec (allergy). It does seem like there is some relief from the pain and bathroom visits.Seems like the doctors are not very familiar with this condition, as it has only recently been classified. Although I hate that anyone else has this condition--at least I don't feel like this is all in my head.I guess my only question is: so, are we stuck on these meds forever?


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## ManualShift (Feb 17, 2007)

Buceo said:


> Wow. I just found this site. I was diagnosed with the exact same thing a few weeks ago (after colonoscopy)and have been taking zantac (acid reducer) and zyrtec (allergy). It does seem like there is some relief from the pain and bathroom visits.
> 
> Seems like the doctors are not very familiar with this condition, as it has only recently been classified. Although I hate that anyone else has this condition--at least I don't feel like this is all in my head.
> 
> I guess my only question is: so, are we stuck on these meds forever?


Welcome to the club, sorry it had to be you!Actually, I am on my third month of meds and have a follow up at the end of May. To be honest, I've pretty much quit taking fiber on a daily basis and have only had 2 doses of immodium in the last 60 days. That's improvement but I'm really just trying to get a baseline. I know what I was like without any drugs, no fiber, no immodium and no histamine blockers. Right now, I've reduced the average number of BM's a day by one despite not taking fiber or much immodium.


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## The Food Doc (Dec 31, 2007)

Mastocytic enterocolitis is a newly recognized condition. Many people with IBS, diarrhea predominant, are probably undiagnosed. Food allergies and food sensitivities probably are very important but also previous GI infection, stress, genetics and resident bacteria and yeast in the gut likely contribute. I have found a high incidence of the Celiac disease genes DQ2 and/or DQ8 in my large series of mastocytic enterocolitis. Not only are biopsies of apparently normal appearing colon or small bowel are required to make the diagnosis but the biopsies have to be stained with special stains, usually a tryptase stain, not routinely ordered/requested by gastroenterologists or done voluntarily by most most pathologists. You are fortunate that your doctor did biopsies and that the special stains were done.Sodium cromalyn (Gastrocrom) is very effective in treatment. Pepcid, an antihistamine for the gut (H2 blocker like tagamet, zantac) plus a traditional antihistamine (clarinex, claritin, alavert etc) are also helpful. Sometimes steroids like prednisone or non-absorbable steroid budesonide/entocort are required. Food elimination can be very helpful if you can identify the problem food(s) by a combination of food allergy and food sensitivity testing (MRT, Signet Diagnostic Corporation www.nowleap.com or Alcat tests www.alcat.com). I have several on-line articles and blogs you may find helpful that you can find at www.thefooddoc.com.Sincerely,Dr. Scot M. Leweythe food docwww.thefooddoc.com


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## 19506 (Oct 7, 2006)

This is fascinating. I have visited thefooddoc's website, and browsed thorugh some articles, although not all of it is understandable to me. I have tried so many other methods (prescriptions, palliatives and witchcraft) for controlling my D, is it possible that I could see some improvement by taking an OTC dose of antihistamine? I've been on Pepcid for years and years, and can't take other antacids due to chronic anemia. If I run out and get some Claritin or other OTC, how long can I safely take it and look for improvement?Also - is this condition curable or chronic?


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## ManualShift (Feb 17, 2007)

EmpressOnTheThrone said:


> This is fascinating. I have visited thefooddoc's website, and browsed thorugh some articles, although not all of it is understandable to me. I have tried so many other methods (prescriptions, palliatives and witchcraft) for controlling my D, is it possible that I could see some improvement by taking an OTC dose of antihistamine? I've been on Pepcid for years and years, and can't take other antacids due to chronic anemia. If I run out and get some Claritin or other OTC, how long can I safely take it and look for improvement?Also - is this condition curable or chronic?


Wow, I haven't been back here in quite some time. If you are still around and still looking for an answer, I'd have to say it is chronic but manageable. As far as I believe, OTC Claritin can be taken as directed for a very long time but talk to your doctor about it at your next checkup. My wife and daughter take them or something like it for years on end.Five years now and I've gotten down to managing things with diet and one 20mg omeprazole (Prilosec) dose a day. I haven't had to take any immodium in weeks, maybe months and it is rare to have and D. I spend much less time in the bathroom now but I still feel my sinuses are more trouble now than before.


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