I am a 27 year old female and have been struggling and suffering for the past year with something that has been termed so many things. It started out as being diagnosed as "IBS," then it was idiopathic urticaria and angioedema, then it was idiopathic anaphylaxis, then it was systemic mastocytosis, and now it's a "very severe" autoimmune mast cell disease. My journey started a year ago when I found myself in the ER with excruciating intestinal pain, bloody stool, nausea, etc. I was told it was maybe salmonella and sent home. The following 4 months I had anaphylaxis once a month and finally I had another severe intestinal episode where I was hospitalized and the CT showed colitis. I had a GI follow up and was told I had IBS. That same month I was in the ER every week with random analhylaxis, fainting, etc. For 4 months after that I continued to go to the ER each week with random anaphylaxis and/or severe intestinal episodes. I have seen 12 different doctors and am currently on 21 different medications including: Clarinex, Advair, Singulair, Zyrtec, Veramyst, gastrocom, prednisone, xolair injections, ranitidine, Benadryl, etc.  Since starting the prednisone and gastrocom every day about 6 weeks ago I have only had 3 "attacks." I have run into a road block with my doctors at the Lahey clinic in MA. My immunologist there (i've been to several) states that i have an autoimmune mast cell disease that is very severe and that my intestinal episodes are not related to my random anaphylaxis so he cant help me with my intestinal pain. when I ask my GI Doc there how it can't be related, he has no idea what's wrong with my intestines or if it's related. In the meantime I continue to suffer from excruciating intestinal pain, hives daily, fainting several times a day, joint pain, muscle pain, fatigue, etc. I have been told by several people that I need to go to Dr. Castells at Brigham and Woman's, but my immunologist at Lahey Clinic said in order to get into Brigham and Woman's I need a pos bone marrow biopsy and mine was negative. If anyone has any ideas or anything that would be of help, I would very much appreciate it. I can't work, can't be outside at all during the day because the sun sends me into an attack, I can't live my life at all.

Hi Crystal and welcome to the forum!  Sorry you've been suffering, but there is reason to be hopeful!

I agree with Ana.  Call Dr. Castells' office at Brigham & Womens on Monday and explain your situation.  It may take a while to get in, but with the severity of your symptoms (be sure to tell them what's happening), they may be able to get you in sooner.  You may want to start with Dr. Greenberger, if you can get in to see him sooner, as he's a GI doctor who works with mast cell patients.  You probably should try to see both doctors.

When you call there, be sure to have handy your medicine list, symptoms list, a brief medical history including tests and results.

There is a type of auto-immune mast cell disorder, but your symptoms should still be able to be controlled better than what it sounds right now.  The experts are excellent at prescribing a medicine regime that will address all your symptoms.

Besides stress and sun, there are probably many things that trigger your symptoms.  Debbie has posted information on a low histamine diet, and you should consider starting it very strictly at first.  Foods are big triggers for most people, especially leftover meats, certain fish and seafood, and many more.  But, it's all individual, so you can start to keep a food and symptom diary to see if you can pin down what foods you can tolerate.  

Some people find that gluten is a problem, even if they aren't technically allergic to it.  Others find that a low salicylate diet in combination with low histamine is helpful.  Finding safe foods to eat is trial and error.  If you haven't already done it, the best way is an elimination diet in which you cut back to just a few foods you know don't cause problems or that are less likely to and stick with just those for 10 days to a month.  Then you add back foods, one every few days and see if you get symptoms.

Were you outside the country any time before you started having these symptoms?  Have you been throughly tested for parasites?

Last thing... do read about pre-medication and pre-procedure protocols that will help to keep you safe if you need to have any surgeries or procedures done.

If you want to post your exact timing and dosages of meds, people here will jump in and tell you if they're in line with what most of us take.  Let us know how you're doing and if you get an appointment with Dr. C or Dr. G.

Going to Boston is good advice!  Good luck!  With the right meds you will be better!  After you look into a low hisamine diet, you need to look up salicylates! Salicylates degranulate our mast cells!  They are in everything we use everyday!  I was having anaphilaxis on a daily bases because of them.  Starting with toothpaste, mouthwash, laundry detergent, fabic softner and lots of the fruits and veggies I was eating.  If you read my threads I am constantly harping about salicylates, because it took me soo long to figure out that I am extremly sensitive to them.  They are also in cut plants. My husband gave me roses for valentines and I was puting them in a vace and my throat started swelling!  I was kind of afraid of them after that.  I was miserable for so long and if I would have known about salicylates I could have saved myself so much trouble!

There is a list of products and foods on the salicylate forum.

http://salicylatesensitivity.com/forum/
under product and food guide.
It sounds like you are on some of the right meds, however I have found the meds are not going to heal you rather control your symptoms.  If you are constantly eating or breathing in your triggers the meds will not be able to control your symptoms!
Also the gastcrom will take several months to get the full affect...so hang in there with it.  Took me 5-6 monts to feel "normal".  To be normal though I have to be on a low histamine, low salicylate and a low dairy diet.  So you really need to figure out what your triggers are.  For me allergy testing was no help!  
I still have a huge problem with mold and mold spores, so it could be something you are breathing in.
Good luck and keep us updated!!
Pam

Crystal,

  If you look at the Emergency Room information, you'll find a specific list of meds that are generally well-tolerated by MC disorder patients and those that should be avoided.  The list includes local anesthetics.  Personally, I avoid any with epinephrine in them, as it causes me to flush and get tachycardia.

  So glad you're going to try to get in to see Dr. Greenberger and Dr. Castells.  No point wasting any more time, considering how miserable you've been feeling!