Question For

[Notgivinup]

Is it an endocrinologist that I would see for MCAD? I've been feeling a bit better.

I started zyrtec TWICE a day again and zantac, which I haven't taken for many, many, months. It's not that I have any stomach issues, it's just that I read about histamine in the stomach, so I started it.

As you may or may not remember, Bev at Dr. Grubb's office said it sounded like I might have it. Then I went to a dermatologist for him to look at the spots on my back and he blew me off completely. Wouldn't even do a scraping.

I don't get hives or reactions to anything. No flushing either. But the treatment seems to help. Just wish I could get a yes or no answer.

Thanks

[juliegee]

So happy you are not giving up !!! Like everything else you've been through, getting a DX for MCAD won't be easy . The World Health Organization is currently meeting to hammer out uniform diagnostic criteria. Hopefully, once that's done, more allergists will be knowledgeable about this.

I would recommend that you see an allergist. Go prepared with (or send it ahead of time) some of the studies linking POTS and MCAD. Tell him/her that Dr. Grubb's nurse, who only deals with autonomic patients, suggested you investigate this. Tell the allergist that you've seen a great decrease in your symptoms when you are on H-1's and H-2's. Ask WHY? Tell them how you feel without the meds, and on the meds. See what testing they propose. At the very least, they can easily order a serum tryptase blood test to rule out mastocytosis.

Where do you live, which state? You may have a masto researcher nearby. I live in GA, but travelled to Boston to ask those same questions. I was also getting anaphylaxis after they had ruled out any allergies. Scary....

Go to The Mastocytosis Society's website to learn more www.tmsforacure.org

Big Hugs-

Julie