It's exciting to see this forum and to find others finding solutions to their mast cell issues!

My mast cell "stuff" started after being stung by a wasp in Sept 2006 and having a terrible reaction. I didn't take the wasp sting as seriously as I should have since I had merely localized hives/swelling. I didn't see my allergist, and just treated it topically. By December 2006, I had terrible stomach pains and diarrhea and got diagnosed with H Pylori.

Through the last several years, I've been diagnosed as having Bile Reflux (no gallbladder - but still put on 2-250mg Ursodiol daily for this) and some type of Mast Cell disorder.

I don't have systemic mastocytosis (per triptase test), but more likely a mast cell enterocolitis according to one GI doc I saw. I've taken Gastrocrom on an off for the last few years, but I don't seem to tolerate it well.

I have intestinal manifestations from the mast cell disorder (urgent bowel movements) and also skin manifestations - pimply hives on my neck and face. The Gastrocrom resolves the intestinal issues, but makes the pimply hives worse! And I'm not taking near the recommended dose of 2-100ml vials 4x per day. I take a little less than 1-100ml vial broken up into 3 doses per day. If I take more, I have horrible nausea and diarrhea.

I'm also taking 1/2 a Zyrtec once per day - can't take a whole one because of dry climate in Colorado during the winter. In the spring and summer, I can take a whole one.

I don't tolerate Zantac but for short term uses of maybe a week. Then my stomach starts to hurt and I get diarrhea again.  

I'm seeing Dr Miner in OK City now (travel down there every 6 months or so) who is trying to get to the bottom of all these reactions and that I don't tolerate medicines well and ALSO that I'm only able to eat a very limited diet of 4 foods (chicken, turkey, potato, broccoli).

Anyone have any ideas?

Nicole

Dr. Philip Miner is in Oklahoma City, OK at the Oklahoma Foundation for Digestive Research. He is the President and Medical Director. His office telephone number is 405-271-4644.

Hope this helps!

There is at least one GI specialist at Brigham & Women's... Dr. Greenberger.  Brita (nycpots) is going to see him next month.

Heather

Nicole! You are seeing the Doc that I hope to get to somehow someday. I really think you are seeing the top doc as far as your symptoms go. I just saw him speak at the most recent TMS convention. In fact I've recommended others with seriously limited food/ and massive gastrointestinal issues go see. Many aren't  familiar with him but he's at least if not more familiar with limited food/ eosinophillic/mast cell related gastrointestinal issues. He was having tissue biopsies stained for mast cells way back and submitting papers, the field would reject then he'd re submit it related under IBS and theyd publish it. He's truly investigative and thats what you need. The Boston group is thetop of the field,the treatment and diagnosis criteria and most of the populations diagnosis would not exist without them, that is where I believed I should go,  but they are still in the "allergic" field primarily,  when it comes to my specific severe gastrointestinal issues, along with allergy/intolerance I'm no longer confident. Dr Miner said it best, with a true food allergy you see an allergist, are told to avoid it and carry and epi and thats it, problem solved, with food  sensitivity /intolerances your symptoms send you to the gastroenterologist  and are plaguing, inconsistent, and take detective work. Dr Miner is on the TMS physician board, and is very competent to treat a mast cell patient with a slew of other involvement.  I'd keep going to him, continually with more information you've worked on. And Yes the limited foods are so frustrating!!! It seems all I've done is limit another and another. Re-incorporating something I took out never has been successful. I prove myself right every so often then will "try" again and my DH will say didn't you tell me to never let you test eggs again? Brita is right there are days our "safe foods" are not safe. Our systems are just overburdened, on certain days, I think it's called the penultimate meal, ( Lisa calls it the bucket theory and it makes total sense) Dr Miner gets all of this. If any of you are curious get the TMS conference DVD for 2010 and watch his 1 hr presentation. He understands Mastocytosis. Just be aware some of the other speakers really made me want to go and bang my head on a wall. Dr Castells, Theo were marvelous as always, I wish we could have heard more from them and Dr Miner. If I did not properly credit the Bucket theory which I swear is Lisa's let me know! Don't want to give the wrong person credit I know she's explained it to many of us patiently!

Do any of you know if Dr Miner does phone consults?

Thank you Sandi for explaining how he works. I wish he came to England!

Sandi - you put very eloquently the problems I have with food. I could cope so much better if I didn't have the food thing. It is a constant battle to eat enough calories every day and most days i fail.