Hi Jane,

The experts above have given you excellent advice.  I am new to all of this.  I was diagnosed with MCAD in Oct.  I have lost 40 pounds in the last year and a half...(most of it in the last few months because I couldn't eat anything! without having a reaction).  Even my five or six "safe" foods all of a sudden were no longer safe!

I saw my local doc, (who is my regular oncologist) last week.  HE works with my mast cell doc.  He put me on gastrocom.  I mixed the vial with water and  took one sip. I got severely dizzy and my heart started racing, etc.  I wrote for help on this site (thanks Joan) and she suggested I back off and start with a teaspoon or so every hour.  I hung in there for two days and now I am up to ONE vial a day.   I have heard the ketotifin is a great drug but my doc wasn't as familiar with it.  He was willing to try the gastrocom (which is a mast cell stabilizer). Although the Pepcid controls the stomach pain, the gastrocom seems to be the first medicine that has really made a difference as far as being able to put ANYTHING in my mouth and not have a reaction to it!!  Another idea as far as food being your biggest possible trigger right now, is to try pedialyte (it does have a lot of sugar in it and also citrus if that is a trigger for you) and/or baby food.  I started with a teaspoon every 15-30 minutes.  That way your system doesn't have to work so hard to digest anything! And that keeps those mast cells a bit calmer!!  (And you get a few vitamins in the process too!)

After a trip to the ER a few weeks ago, I was put on prednizone.  I started with 40 mg a day and after 5 days went to 20 and now am on 10 with the option of adding a second one if needed.  Other than those two meds, I only take Pepcid (because I haven't found an H1 blocker I can tolerate).  I actually am starting to feel like a real person again after almost  2 years!!!  

Good luck to you, as far as calling the doctors you need to care for you, so they understand what you need!!   Be sure to get lots of rest and keep us posted!!      Hugs to you, Lynda