I just wrote on your other post.  Yes this is what I have and have not been able to get a single doctor to believe me that I have mast cell activation syndrome.  They just think I have itchy skin.

I feel sick everyday.  I take 150 mg. zantac, 150 mg. zyrted, 10 mg. singulair, use nasalcrom and ketotofin eye drops.  

It' so hard to find foods that you can eat.

Guiding Light what are your symptoms like? I get burning and itching in my face, hands and feet and then I get hives all over my body and then my lungs, tongue, throat swell. I faint several times a day, get flush and intestinal pain when I do any physical activity, I get heart palpitations, severe intestinal pain for 4 hours at a time where I just live in the bathroom, joint pain, muscle pain, etc. They told me in the beginning that I had Chronic Idiopathic Urtcaria and Angioedema, and now they are saying Autoimmune mast cell disease where my thyroid antibodies are eating my thyroid, adrenal glands, possibly my ovaries, and definitely my mast cells. Are yours doing the same thing?

Heather I am thinking they must be related. If the auto-antibodies are attacking the mast cells so they constantly activate,this should be some type of mast cell activation syndrome because they are not activating properly. Im glad you found a doctor who believes this. I am finding so many doctors with their ego's so big who tell me im just a patient with no medical background.

When I first started going into anaphylaxis, the only medication I was taking on a daily basis was Synthroid (for Hashimoto's).  As I started adding other medications... H1 antihistamines... H2 antihistamines... Gastrocrom... Singulair... my attacks became a lot less scary.  The last time I used an EpiPen was in 2009.  I've also worked hard to figure out (and avoid!) my triggers and I'm now a lot more aware of the early warning signs of an attack such as dizziness, a gnawing feeling in my stomach, or tightness in my throat/lungs.  My mast cell disorder hasn't gone away, but I'm a lot quicker to treat the symptoms.  

I can tell you're in a bad cycle right now.  It takes time for your body to recover from anaphylaxis.  Triggering leads to more triggering  Have you started taking any mast cell medications on a daily basis?  You don't need a doctor to try antihistamines.  They didn't get rid of my symptoms, but they did stop my trips to the ER.

Heather

I haven't tried Xolair.  If I get desperate, my hematologist recommended trying Rituxan to get rid of the auto-antibodies that are triggering my mast cells and hopefully "reset" my immune system.  Dr. Molderings has a few other recommendations for people who are suffering from severe symptoms without sufficient relief from the standard medications:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/

I've also heard of people with autoimmune CU using cyclosporine or Cellcept as an alternative to steroids.  The ICUS list-serv is a great source of information.

Unfortunately, there's no short-cut to figuring out triggers  My most recent one... latex and foods related to latex... took me more than a year to figure out!  The first bad reaction was at a children's birthday party.  Was the problem a chemical?  Mold?  I had no idea... just that I started feeling better as soon as I got outside.  

Sun is a problem for me too, although I'm doing better with it now that I'm more stable.  I wear long clothes at all times, so only my face, hands, and sometimes my feet are exposed.  I used to wash my clothes with SunGuard (made by RIT) to make them UV resistant, but now I'm fine without it.  I also use a strong, natural sunscreen (made by Aveeno) when I'm going to be outside for more than five minutes.

What time of the day was it when you had the attack while lying in bed?  Our bodies' natural histamine peaks around 2-4am.  I've had attacks where that was the only trigger.

Heather