I am so sorry you are going through this!! I can't tell you how badly I feel for you. I CAN TELL YOU I UNDERSTAND EXACTLY WHAT YOU ARE SAYING!! (I am a woman and I haven't had a piece of chocolate for almost 2 years!) One has to experience a life threatening reaction to something as delicious as chocolate in order to understand that you must NOT eat it again. And you are exactly right, it's a choice to feel safe in your own body vs. a choice to do whatever you want to.
I just finished eating about 1/2 cup of food and was feeling yucky...so I went to the masto site and saw your post. I am shaking all over, my pulse is jumping all over the place, PVC's escalate, and I feel like a panic attack is on the way. Last week and the week before when I ate, the reactions were all respiratory!! At one point, I had not eaten for 2 days. I got so hungry I felt like you, I was starving. So I ATE. (And I just ate my "safe" foods). My reaction was severe enough to have to call 911. I was "ashen...lips blue"....you know the drill. This time they dispatched a Life Spirit ambulance from the hospital... at the same time the ambulance I was in was leaving my house. Was it worth it?? NO WAY!!
I posted under "need some support"....I received some excellent recommendations and care and concern. Many of us DO understand. At Thanksgiving, I had my 2" piece of chicken, 1/4 potato and some carrots. I had to take .5mg of Xanax and 10 extra mg. of predisone just to eat that.
One of the members explained to me that it isn't always a specific food (although it is so important to stay on the histimine diet...I am on a no tyramine diet as well). Sometimes it is just that you are in a "flare" and your body can't take the load of digesting so much at once. You probably know this already, but I find if I eat (nibble) every so often it is MUCH easier on my system. I have also learned to freeze things immediately after preparing them and cut them into small portions so I can grab them and nibble (chicken tastes great grilled and frozen....it's meat....a man's snack, right?)
It becomes a process of learning what we NEED to do in order to be able to eat what we need to eat. Unfortunately that takes time and lots of: (as Joan once posted) "trial and error" AND "trial and success"! There are many on this site along with the good mast cell docs out there who are willing to share personal experiences and information. Thank goodness we are all different, so maybe what works for one person will also work for another.
YES, this hard to do!! But I see so many on this site that have made much progress. You have been through so much already....(I am glad to read that you are headed to Boston!). I found out from this site that there is nothing more important when you have this disease than to have a mast cell specialist in your corner. IT WILL GET BETTER!
Hang in there.....and please keep us posted on how you are doing!
(And just for the record, I miss my "old life" too)