Hi all!

I'm 41 year old male from Europa and suffer for a while of systemic Mastocytosis. The symptoms are now regularly present every day. The most bothersome are the gastro-intestinal  disturbances which after every meal strike directly, producing abdominal discomfort, lots of gases and poor digestion. Generally I'm tiered all the time with low energy and struggle with depression to. In my country there is no specialist for this disease, but I manage to get some investigations. My tryptase level was 31 in 2008, 29 in 2010 and 33 in 2011. There is a cutaneous component to. If this progression is continuing this way I don't think that my integrity is any more sustainable .
The news of the new drug under testing called PKC412 Midostaurin waked grate hopes and I would like to have it even if I have to walk til America . I have a great confidence that this is what I need to get well, more than that to be cured!
That's my believe!, if some one could help me this way, would be fine!, but for shore I couldn't express my gratitude in words.

Thank you all!

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

Hi Sherry,
Im sorry that your son has been going through this rough time. Im near Gainesville and i go to Dr Lottenberg at Shands of UF. Hes wonderful. I know that Jared goes to Dr Afrin in south florida and another new member here goes to the Mayo Clinic in Jax. I know there is a Mayo clinic there in Tampa, have you tried to get him into see their Drs? That would be my first choice and if you dont like those Drs, come to Gainesville, its only a 2 hour drive from Tampa.

That Dr was wrong about there having to be a skin breakout or lesion of some kind for your son to have masto. Some of us do, but i beleive its only 20% of masto patients that show skin changes.

Please let us know when you get the results of those biopsies, we truly do care. In the meantime, I am very worried about that large a weight loss. Can you try your son on some can drinks? Ensure would be a good choice if he can tolerate it. You can buy different flavors and chill them for him. It isnt a perfect solution but it might help until you get some answers and a medication plan to help him. For now I would keep him to rice, chicken--foods that are bland, not spicy or raw.  

How often is he on Zantac?? Most of us take 300 mg twice a day and it helps tremendously. I dont know what his body weight is, but if he is adult size, try that and see if it helps him. If he is younger/smaller try 150 mg twice a day. TELL HIS DOCTOR whatever you do ok??

Good luck Hon, we are here for you!
Ramona