Hi,

I'm confused about whether I have a true mast cell problem because I don't think I flush.  Or if I do, I've never seen it. Also, I  can eat spicey foods. My digestion is ok as long as I take my digestive enzymes, don't eat my trigger foods or overeat.

I used to have severe hot flashes and the "flushing" feeling I get now feels just like one of those just not as severe and without the profuse sweating and massive adrenaline rush.  I'm so glad that's over. Whew ....

But .. I have angioedema, fm, pelvic pain, bladder pain and orthostatic intolerance /pots
that are all responding to taking allergy meds multiple times during the day.
These symptoms other than pots are mostly controllable by avoiding my known trigger foods too tho.  

So far, I seem to need the ones I'm taking repeatedly. Which is why I thought I had a mc disorder. But I'm new so maybe I'm
wrong about needing these and I just need a better allergy med. Like a "normal"
person with allergies.  

Could I just have "bad" allergies ?  My skin prick tests from 8 + years ago showed that I was actually allergic to most things on the planet.  I get shiners from dairy. Phlegm in my throat within 30 minutes of ingesting soy. I'm always getting rashes on my abdomen and scalp. Fm pain from bacon and tomatoes. Pelvic pain from nuts and chocolate. (sniff sniff)  ... etc etc etc

I'm concerned that the mc testing I'm hoping to get next month will come back negative if I don't have "normal" mast cell disorder symptoms.  If it does come back normal how far should I go to get a proper diagnosis ?

Sorry for the book. Maybe this info is here and I just missed it. If so, can you point me in the right direction.    .. Thanks .. Marcia

Thanks. I hope my allergist is up on mast cell disorders so I don't have to travel to see a specialist.  The closest is Dr. Afrin but he's still 6 - 8 hours away.  I have a few really good doctors now. I still have cfs fatigue and pem so travel would be hard on me.

I know I have IgE to some of the foods I'm avoiding but can't remember which ones. It's been a few years since I figured out most of my triggers.

Tc .. Marcia

Thanks lisa,

I did this right after reading your comment but forgot to thank you.

From what I saw genetic angioedema doesn't respond to allergy meds and I'm responding exceptionally well to meds, esp zyrtec.

I realized the other day that I do in fact flush. I saw my hands do this the other day while I was standing in line.  It just never  dawned on me to look at my body when I was feeling faint.

I can't imagine most people recognizing this as flushing / mast cell problem.  I was dx with cfs so even if my head had fallen off, I would've just heard it was "normal" for cfs. Geesh ...

I'm working with a local allergist / immunologist now so I'll wait to see what he wants me to do. He wasn't up on Dr. Afrin's info
or the pelvic and bladder pain connection, but seemed willing to learn.  

If Dr. Afrin were closer tho, I'd be there asap. I'd love to know what meds he'd prescribe for me.  Tc .. Marcia