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Crohn's Disease Forum » General IBD Discussion » Microscopic Colitis » Mastocytic Enterocolitis and maybe mastocytosis



07-12-2014, 04:19 AM   #1
jdofaz
 
Join Date: Jul 2014
Location: phoenix, Arizona
Mastocytic Enterocolitis and maybe mastocytosis

I found my way to this forum through google searches and thought I would say hi.

I was diagnosed recently with Mastocytic Enterocolitis. I've been having on and off skin rashes for two years now and for much of that time I've been thinking it was a food allergy. For a year or so I had normal bowl movements alternating with diarrhea. The only thing that I ever found that seemed to help was avoiding wheat.

A few months ago I started having none stop diarrhea so I gave up on trying to figure it out myself and went to an allergist and other than some pollen allergies the only positive test was for bakers yeast and the value was just barely above the positive line the allergist thought it was probably a false positive. (these were blood tests, I reacted to every single skin prick test)

He sent me to a GI doctor and he performed a Colonoscopy, endoscopy and CT scan. Long story short it ruled out the usual suspect but he did take biopsies and the lab found abnormally high count of mast cells. I'm 34 and they found two polyps that tested precancerous. He said if I hadn't had the colonoscopy I would have had colon cancer by 40.

After the ME diagnosis they ran more blood tests and a urine test for histamine. The tests came back normal so while I have ME I don't have Mastocytosis (systemic?). The GI Dr is sending me back to the allergist, he suspects I'm in the early stages of mastocytosis but he said its outside of his expertise.

So at the moment I'm taking Zyrtec, Allegra,Zantac and today starting Cromolyn Sodium sold as gastrocrom. The gastrocrom is supposed to prevent the mast cells from degranulating.

The antihistamines are keeping the rashes away but haven't helped with digestion. I'm hoping to get some relief from the gastrocrom.
07-12-2014, 06:55 PM   #2
happy
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Welcome to the forum. There is a thread on the forum about Microscopic colitis where some people discuss having mastocytic enterocolitis. Try here: http://www.crohnsforum.com/forumdisplay.php?f=258

I believe that this is what my son had when he was a young boy. He was on the Cromolyn for over a year, but it took care of the problem. Now he is a healthy 21 year-old with no digestive issues.

Good luck with your treatment.
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07-25-2014, 06:19 PM   #3
jdofaz
 
Join Date: Jul 2014
Location: phoenix, Arizona
So far the gastrocrom hasn't helped at all I've read it takes a while to start working but I was hoping to some some improvement. I think I'm at the 2 week mark today.
07-25-2014, 06:25 PM   #4
steve55
 
Join Date: Jul 2012
Location: New York
Try adding Quercetin, its sold over the counter.
07-25-2014, 07:04 PM   #5
happy
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I am pretty sure it took a couple of months before we noticed improvement for our son. Sorry to hear you are not feeling better yet.
07-25-2014, 10:11 PM   #6
Essieluv
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I'm glad you got your Masto diagnoses; I've heard that can be quite confusing and baffling to diagnose. I don't know much about Mastocytosis or ME but am very interested in it as it shares some similar symptoms with IBD. I know of a few people who have systemic Mast cell disease, but not Mastocytic Enterocolitis. What exactly do they use to treat this? Is it antihistamines and epinephrine? Or do they try to concentrate more on the GI tract rather than the whole body?

Anyways, welcome to the forum! I hope you have luck with your allergist and everything goes smoothly.
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08-03-2014, 12:16 AM   #7
jdofaz
 
Join Date: Jul 2014
Location: phoenix, Arizona
The allergist sent me to an oncologist to check for systemic mastocytosis. The oncologist has me scheduled for a bone marrow biopsy I'm sure it will be ok but I'm not looking forward to it

I asked if the treatment was different for systemic mastocytosis and if not why do the biopsy and he said they needed to rule out a form of leukemia. He said if they diagnose systemic mastocytosis they will refer me to a Dr at mayo clinic. He said this Dr was there best there is for that disease and if that is what I have they will refer me to him. If that is the way it goes I'm lucky to have an expert in town.

I'm glad you got your Masto diagnoses; I've heard that can be quite confusing and baffling to diagnose. I don't know much about Mastocytosis or ME but am very interested in it as it shares some similar symptoms with IBD. I know of a few people who have systemic Mast cell disease, but not Mastocytic Enterocolitis. What exactly do they use to treat this? Is it antihistamines and epinephrine? Or do they try to concentrate more on the GI tract rather than the whole body?

Anyways, welcome to the forum! I hope you have luck with your allergist and everything goes smoothly.
My understanding is they treat it with gastrocrom and antihistamines. It's been another week and no changes for me yet.

Yesterday I left a message at my GI dr office asking if I can increase my dosage. I've read posts from other people on gastrocrom saying it made them feel sick. I haven't really noticed an ill effects so far.

The GI doctor said there there isn't a lot of research on this and treating it is more art than science.

Try adding Quercetin, its sold over the counter.
I'm seeing my GI doctor next week I'll ask him about it
09-11-2014, 04:21 PM   #8
jdofaz
 
Join Date: Jul 2014
Location: phoenix, Arizona
The biopsy came back with a low number of abnormal mast cells , the oncologist though combined with the other symptoms and mastocytic entercolitis that it was enough to diagnose systemic and he referred me to a specialist at mayo clinic.

The gastrocom and quercetine complex don't seem to be helping at all, there does seem to be a dietary component but I have yet to nail down a diet that works
09-11-2014, 08:54 PM   #9
Essieluv
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I hope that you are able to get some treatment options at Mayo. Please keep us updated.
04-05-2015, 05:32 PM   #10
jdofaz
 
Join Date: Jul 2014
Location: phoenix, Arizona
After seeing the specialist at Mayo I'm taking Singulair tablets, one aspirin and an Allegra twice a day, (dropping the zyrtec because it didn't seem to do anything).

The skin issues seem to be under control now. The antihistamines don't seem to help with GI at all.

The only thing that helps with GI so far is avoiding carbs as much as possible but I still feel like I don't know the true culprit.
04-06-2015, 01:35 PM   #11
happy
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Thanks for the update. So sorry to hear that haven't found more improvement with the GI issues.
04-08-2015, 06:09 AM   #12
nnmfam
 
Join Date: Apr 2015
Location: Rochester, New York
I have mastocytosis nobody told me and could develop into a colitis. At this point I am frustrated beyond dr telling me lower GI showed Crohn's and ulcerative colotis. Pain and told no steroids until colonoscopy in May. GI does not get steroids have been key to keeping my reactions under control. Right knowing have sever pain diarrhea several times a day and night so swollen it feels like a portion of my sigmoid is going to burst at night.
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