Mcas????

[jpjd59]

Has anyone had a normal tryptase test (my daughter's came back as a "3") and a normal 24 hour urine histamine test and still been diagnosed with MCAS?

My daughter has all the symptoms but the test results not confirming it.

[DoozlyGirl]

Yes. Most people with MCAS have a "normal" tryptase. Which tests have been run? Where were they performed? Was the urine and blood chilled immediately and kept on ice even during transport?

[Christy_D]

Yes, my son's serum tryptase and 24 hour histamine were fine. He was diagnosed based on a blood test that showed PGD2 and heparin levels too high. The doctors notes said:

"Based on symptoms and findings consistant with chronic repeated inappropriate elaborations of mast cell mediators , mulitple mast cell mediators(plasma heparin, plasma prostraglandin D2, spot urinary prostraglandin D2, 24 hour urinary prostraglandin D2, but normal serum tryptase) mast cell activation syndrome appears to be the underlying unifying diagnosis."

I chose to take my son to Dr Afrin because 2 prior doctors had said mast cell wasn't an issue, but they weren't specialists in mast cell. They checked his serum tryptase and one did a 24 hour urine test. But, the 24 hour urine test wasn't kept refrigerated and Dr Afrin says that is very important to get accurate results. He said the testing is very tricky and has to be done properly. Neither of the prior doctors checked the PGD2 or heparin.

Hope that helps.

Christy

[jpjd59]

Doozlygirl: Thanks for your input. Regarding the mast cell issue, she has had the tryptase test 24 hour urine test. She has had many other tests for POTS. The tests for mast cell were done through a local lab. I don't know if blood was chilled. Urine was chilled at home but not during the 10 minute drive to the lab. Also, I did notice that on a blood test that she had done at the Mayo that her ANA was high - don't know if this has anything to do with a mast cell issue.

ChristyD: Thanks! I have a call in to my daughter's doctor asking him to check the PGD2 and heparin.

Pam

[futurehope]

JPJD59,

I have normal tryptase and normal histamine and Dr. Afrin thinks I have MCAS due to my history, response to antihistamines, and elevated markers that he tested for. I'll learn more on my return visit July 9th.

[anaphylaxing]

I fit all the symptoms and am taking the same treatment but don't technically fit the criteria as I have no proven mediator elevation. The diagnosis is a bit irrelevant to me as it is still in its preliminary stages of research/understanding. What's important is ruling out mimickers and finding a treatment that helps.