New here with Mastocytic Enterocolitis

I'm glad to have found this forum. I've been diagnosed for about 2 years now, however I had a GI doc in Colorado Springs (Dr Scot Lewey) suspect mastocytic enterocolitis about 3 years before that. It took getting the right mast cell stains to confirm the diagnosis.

I now see Dr. Philip Miner, a GI doc in OK City, OK who deals with various GI patients, and is an expert in mast cell diseases. I'm on a host of meds - Entocort, Ketotifen, Ursodiol, Zantac, Zyrtec - and I'm going to be adding Gastrocrom again. My stomach couldn't handle taking it, even very small doses, and I finally gave up. Dr. Miner has convinced me that Gastrocrom is the only medicine he knows to help cure gut permeability.

I have flares around high pollen season. I'm very sensitive to all medications. I'm on a very limited low-histamine diet which helps tremendously. However I'd like to begin to increase my food intake. Overall, I'm much better than I was 5 years ago.

I've had allergy issues and a sensitive gut my whole life. I got stung by a wasp in September 2006 which pushed my body over the edge.

I find it interesting the number of ME patients who have gallbladder trouble and/or gallbladders removed. (Mine was removed over 20 years ago after my first child was born).

Great to be here!

Nicole

Hi Nicole and welcome

Out of curiosity, what does your low-histamine diet entail?

We don't have a ton of members here diagnosed with Mastocytic Enterocolitis, but more seem to be coming in all the time. I personally suspect that a lot of the IBS out there is in fact undiagnosed ME and now that GIs are slowly starting to stain for it, it's being diagnosed.

We talk about ME in our microscopic colitis forum found here (under the General IBD Discussion forum).

I'm glad you're here

I got the diet suggestion from Dr Miner who found that his patients had less reaction to these foods - in order of lowest histamine:

Bottled water
Rice
Lamb
Chicken breast without skin
Turkey breast without skin
Potato without peel (russet only)
peas
broccoli
green beans
squash - all kinds without peel
P fruits with no skin - peaches, pears, plums and blueberries (not a P though!)
Sea salt

I can't tolerate all of these foods, but eating this way has really helped my stomach feel better.

Thanks for the welcome!

Hi Friends,

Is there a spot or forum for M.E? I was just diagnosed after four years of searching for the magic words, but do not have my symptoms under control and have been in and out of the hospital the last two months more frequently than ever before.

Like Nicole, I just started taking ENtocort, Zantac, Gastrocrom (3 weeks in on this one), plus regalan, zofran/phenergen as needed, and a slew of other meds for some other conditions I have. I have not "met" anyone with M.E. and would love to be connected - happy to share my email address if anyone is interested in chatting.

Best,
Amanda