Hi all! So Dr. Chin diagnosed me MCAS in late July by my symptoms and high chromogranin a. I tried both cromolyn and ketotefin (I gave them both a fair chance), but was unable to tolerate either. Cromolyn exasbutsted my gi symptoms and I was throwing up everyday for a month, and ketotefin caused me severe angioedema, so I had to stop it immediately.
So, back to square one. And I am questioning...do I have MCAS? I was tested positive for the antibody which causes autoimmune urticaria in 2010. It was all my other symptoms besides the hives (which I very rarely get these days) and the angioedema (which is usually localized on my cheeks, lips and gums these days. The antihistamines seem to keep the severe swelling under control) that had me thinking MCAS. The "panic attacks", intolerance to frangrances and salicylates, the fight or flight feeling, the gi issues, dizziness, irritability during an episode. All that. So I was wondering if all these symptoms can also be part of autoimmune urticaria. I cannot find any literature about this. When I google AU, all I can find as symptoms are hives and angioedema.
So.....I emailed Dr. Castells. What and amazing woman. She doesn't know one thing about me, but took the time to write me. I told her my story and took a picture of my labs confirming my AU diagnosis as well as several inflammation markers. She said that my symptoms were NOT constisant with MCAS, but with "autoimmunity" and highly suggested looking into xolair.
I trust what she says as a highly regarded doctor, but it just confuses me because at the end of the day, it's all mast cell degranulation right?
She didn't get into the insintricities of my symptoms, but did say that xolair could help either elivate many of them, or at least calm them down.
But my mind is still somewhat wrapped around the idea of MCAS since my symptoms match up so well. So I guess after all this rambling, my question is this....has anyone with masto or MCAS ever taken xolair? If so, did it help?
Has anyone with AU had all these symptoms too?

Thanks for your reply Heather yes, I have been tested for hereditary angioedema. That is actually how I found out I had autoimmune urticaria. Because of my swelling and hives, I qualified as part if a pharmaceutical study for HAE. To my benefit, they study checked for everything. That's how I found out I did not have HAE but that I did have AU.
So I'm now, especially after Dr. Castells recommendation, going to look into getting the xolair shot. At this point, it's my last option. Hopefully the best was saved for last!
I just hope that it will help with issues other than hives and swelling.

Thanks for the excellent explanation legd! I've never understood, but that makes perfect sense! I get it! It also makes me hopeful for xolair! If it helped, it would be an absolute miracle for me. I desperately need a break from constantly triggering:-/