Question re: serum tryptase levels

[dimenter]

Hi, has anyone possibly looked at serum tryptase levels? Can 13-14 ng/mL indicate the presence of MCAS in your opinion? I'm asking, because anything over 11.5ng/mL warrants further evaluation based on the recommendations of the mastocytosis society.

 

[Jyoti]

Bump

 

[dimenter]

maybe ideas? or I'm on a bad track?

 

[MCASMike]

Do you have a lot of MCAS symptoms? Have you tried the "easy" things to see if the symptoms respond? I'm talking about a second gen H1 antihistamine and possibly an H2 like fomitidine (if you have stomach issues), along with a baby aspirin with each meal.

 

[wigglethemouse]

Generally in order to understand tryptase doctors use two tests of tryptase. First is a baseline on a good day. Second is a bad day where you are having a mast cell type reaction - that's if you are well enough to make it to the lab within 2 hours of a reaction. Doctors then look for a rise in tryptase.

If tryptase is positive doctors may then order a test to check for a possible mutation in the KIT gene D816V such as this one. A positive in both would be an indication for Systemic Mastocytosis
https://ltd.aruplab.com/Tests/Pub/3002956

However in MCAS tryptase is most often normal and it is other mediators that test positive. Here is a post listing some of the other tests for MCAS. However the half life of ones such as Prostaglandin D2 is very short so the lab must centrifuge and freeze immediately.
https://forums.phoenixrising.me/thr...think-mcas-eds-3-gerd-sibo.62187/post-1011907

 

[dimenter]

Do you have a lot of MCAS symptoms? Have you tried the "easy" things to see if the symptoms respond? I'm talking about a second gen H1 antihistamine and possibly an H2 like fomitidine (if you have stomach issues)rE, along with a baby aspirin with each meal. If you don't have issues with those, I'd say try that protocol for a few days and see what happens (for my H1, I take 10 mg of loratidine in the morning and another 10 mg before going to bed). Also I'd take at least 1000 iu of vitamin D3 throughout the day (I bit off small amounts of a 2000 iu D3 tablet).

Thank you! Yes, i have a lot of symptoms (abdominal pain, heart palpitations/tachycardia, migraine headaches and the list goes on). I can’t figure it out whether it MCAS related or small fiber neuropathy. My total IgE is always elevated and the tryptase too, but under 20 ng/ml. I will try what you recommended, will see what happens, thank’s!

 

[dimenter]

Generally in order to understand tryptase doctors use two tests of tryptase. First is a baseline on a good day. Second is a bad day where you are having a mast cell type reaction - that's if you are well enough to make it to the lab within 2 hours of a reaction. Doctors then look for a rise in tryptase.

If tryptase is positive doctors may then order a test to check for a possible mutation in the KIT gene D816V such as this one. A positive in both would be an indication for Systemic Mastocytosis
https://ltd.aruplab.com/Tests/Pub/3002956

However in MCAS tryptase is most often normal and it is other mediators that test positive. Here is a post listing some of the other tests for MCAS. However the half life of ones such as Prostaglandin D2 is very short so the lab must centrifuge and freeze immediately.
https://forums.phoenixrising.me/thr...think-mcas-eds-3-gerd-sibo.62187/post-1011907

The problem is that there is no doctor who can help at least make the diagnosis. When I mention MCAS, they look at me with big eyes, so I have to figure everything out based on the internet literature.

 

[MCASMike]

Thank you! Yes, i have a lot of symptoms (abdominal pain, heart palpitations/tachycardia, migraine headaches and the list goes on). I can’t figure it out whether it MCAS related or small fiber neuropathy. My total IgE is always elevated and the tryptase too, but under 20 ng/ml. I will try what you recommended, will see what happens, thank’s!

I forgot to mention Luteolin, which you can get with Mexican oregano and celery seed, or as a supplement. Currently, I'm doing both (but there is apparently at least one supplement company, located in the Ukraine, that is selling fake Luteolin, so read the reviews first; I am using Horbaach's now). Good luck, and let us know how thins turn out.

 

[MCASMike]

Here's what one doctor says on this topic:

"Many doctors are used to looking for high levels of a mast cell mediator called tryptase when suspecting Mastocytosis but are unaware that in MCAS, tryptase usually stays at levels within the normal range, even when symptoms are flaring."

https://www.drtaniadempsey.com/post/mast-cell-activation-syndrome-mcas-a-hidden-epidemic