*I'm in the diagnostic process (just started)
*I just got my tryptase results back: 1.0! - yay???
*Can I still have mastocytosis, or am I tripping (ha ha) down the wrong path?
*I am symptomatic
Help! I'm at a loss.
Thanks

Hi Heather,
I get/have:
* recurrent non-allergic sinitus (and other upper respiratory infections)
* GI tract issues (pain, diahrea, gas, ... sometimes due to foods, othertimes for no forseen reason)
* uterine fibroids (had a grapefruit sized one taken off 6 years ago)
* ovarian cycst (recurrent)
* liver cycst
* pancrease polyp
* off & on dermatragraphism
* sensetive skin (to just about everything & sometime break out in rashes, bumps, redness, tenderness, hives, I get hyper itchy, tingly, ...)
* POTS (postural orthostatic tachychardia syndrome - which may/or may not relate to MCAD)
* I have numerous other issues that I don't think are necessarily related to MCAD (migraines, eye problems, ...)

I do have Ehlers-Danlos syndrome, and some of these issues overlap due to the poor collagen I have.

My allergist/immunologists have determined that I'm not allergic to anything (even tree nuts which I get a sever allergic type reaction from - mouth hives and throat swelling, along with tingling/mild burning sensation in my face, torso and arms).

I'm currently on:
* cimetidine for acid reflux
* rhinocort aqua, patanaise, generic zyrtex & singulair for the sinus inflammation (I haven't decided whether the singulair has finally beat it into submission or not)
* gabapentin for pain/neuropathy
* meloxicam for inflammation (for the joints, though I'd assume it would help with other kinds of inflammation - maybe?)
* time release Vit C (as I heard that it could help)
* 5,000+ units of Vit D daily (with Omega 3, as I heard that that might help)

Thats's about it; though I know I'll think of something else after I'm done writing this.

Welcome!

It is very unlikely to have systemic mastocytosis with such a low tryptase. That's what the mast cell experts told me. Not impossible but highly unlikely. Mast cell activation is still a definite possibility.

I also have POTS and EDS III/JHS. I have found a great deal of help in this forum and the DINET dysautonomia forum.

I agree with Joan you really need a FULL assesment by GI, neuro and allergy and preferably a mast cell disease expert for the allergy part. They are hard to find but will often work with your doctor remotely if necessary.

How did your symptoms start?  Having allergic symptoms to foods like you mentioned but  having negative allergy testings is one of the conundrums of this mast cell world, so it is all still a possibility.

I don't know if you find the same, but when my reactivity flares, my POTS flares too so they are often related. There's some research into this but t's not all understood yet!

Have you tried any H1 blocker  antihistamines like Zyrtec or allegra?