Riverwn
|
Hello to you both, Borci and Sherry! Borci, Im sorry you feel so miserable, have you ever tried any antihistamines and did they help you? Which country are you in, we might be able to suggest an expert in your area?? Those tryptase levels DO sound like possible Mastocytosis--but you still need other tests to confrim it and exclude other things it might be.
Sherry, I know its heartbreaking to have a sick child and not know what to do to make it better. We have parents of other children with mast cell problems and Im sure they can help you too, get through this jungle of Doctors, meds and tests.
I answered a post from someone new recently and I think some of that advice would help both you Borci and Sherrys son too, so Im reposting that part for you;
You need to find a good GI DR and fast.
Mastocytosis is a disorder of exclusion--which means they need to test for some other diseases first, exclude those while tesing for things that ARE positive in Mastocytosis. While you find the right doctor and are having these tests done, I would give you some suggestions-, just in case it is masto--to help you find your way and make you more comfortable. Seeing an expert is VERY important.
Look up LOW HISTAMINE DIET, and for now, stick to it closely. Foods have natural histamine in them, some higher and some lower--you need to avoid those higher. Next read our thread here about TRIGGERS. Most of us are about 90% the same but we all have our differences too. Knowing what WE react to might just help you figure out what YOU are reacting to.
I want you to start a diary--list all foods you eat, all activities you do (even small ones),and how you feel, day to day. It will give you a way to see patterns in how you are reacting, what is causing it with you.
There are a few OTC (over the counter) meds you can try, that we use all the time--just to see IF they help you. Meds like Zantac twice a day, and Allegra, Zyrtec, and Chlortrimeton. You dont need all those, they are just a few of what we take. I would try the Zantac and maybe the Allegra... and see if you feel better--Now make SURE to tell your DR whats going on, how you feel and what meds help.
For the time being, stay OUT of the heat, NO exercise, NO spicy foods (NO peppers, vinegars or spices). NO aged cheeses, NO alcohol. NO leftovers (they make histamine in the fridge). Yes it is strict (at first) but you have to stop these reactions, feel better and get some answers before you can add foods back (later when you are stable).
Do everything you can to eliminate stress from your life.
You both need to READ a lot of the info that is here on the board and feel free to ask any questions, we would be glad t help:)
Hugs to you Ramona
|