After a second blood test, 3 months after the first, my tryptase plasma levels were slightly higher 20 v 18 but still not very high. I was referred from the allergist (who said I might have mastocytosis) to a dermatologist to check the brown spots on my back. No sign of any spots today but he tells me they come and go! but that I am dermographic but not to worry its fairly common but could raise histamine levels. I don't think he was too clued up on mast cell disorders as he had to pop out and talk to another doctor.  

I am getting good relief of symptoms (stomach aches and heart burn with zantac, itching with an antihistamine) but still ache in my joints.
Feel like I am going round in circles, like many others here, haven't got a specific diagnosis, starting to feel like a hypochondriac as I am becoming so focused on my health, the up sides are my symptoms are mild (especially compared to many here)  and I seem to feel better by restricting foods high in histamine, plus I am so glad of the UK free health service even if it is a bit cranky.

As i started by saying, what next? The thing I am most concerned about is having another anaphylaxis.

Sorry if this sounds like a whine but 9 mths after my trip to ER I am still not clear whats happening to me. My Allergist did talk about getting a bone marrow test, but not sure if that is necessary where I am now!

Thank for listening.  jim

       

Hi Jim!!
Welcome to the group. You are definitely on the right track. Im so glad Josie can help you with doctors etc there in England.  Yes, here in the US a BMB is the next step--or one of them lol...

You carry epi pens, and benadryl with you in case of shock right?? Youre doing well being so careful in your diet... You make it easy for our doctor (IF he understood masto).

Glad to meet you, welcome to the group!
Hugs,
Ramona

Hi Jim:)
I know how you feel, so very much!  We all do! Thats why we are here to try to make it easier on you. I would always press for the tests, you need the answers. Lets take your other issues  (they were biggies for me too).

I think chocolate (just a tiny bit) is much safer for you than alcohol--it makes the circulation react so quickly. I dont drink any alcohol anymore. I DO have a chocolate bar in my freezer and now and then I have one small piece of it

I never was a big tomato eater BUT I adore Italian food.. I had to cut out tomato sauce..Now I just use more garlic and butter and other spices that we can have and I find I like it better!

Cheese?? Check to see which ones are fresh and which are aged--you can probably have a small bit of fresh cheese...I do.. but the aged ones will make you react. Just know which ones are which.

Being afraid of going into shock..wow I can relate... I have one small trick I use and it is a security blanket for me. I keep about 60 mg of prednisone on me--for emergencies only. IF I am starting to break out in hives (that is my alert I will go into shock).. I will take the prednisone at the same time I am calling 911. It helps the episode be much less severe and I get over it quicker. Talk to your Dr about it.

That bone and muscle pain?? OUCH.. I have it too.. and I do have pain pills for it.. but be careful, you know they can trigger us. I have one tip here...If your meds are tweaked right for you (enough H1 and H2 antihistamines), my pain level is much easier to control.. If my meds arent right, I have a problem controlling the pain, see? I hope you can tweak your meds exactly right for you and your pain will lessen and be more controllable.

Hope this helps
Hugs,
Ramona