mast cell disorder testing

[Weyland]

Has anyone had testing for a mast cell disorder ? What kinds of tests are involved ? What type of physician did the testing ? I'm fairly confident I have more than just pots going on in my body ,and I'm interested in getting tested for this....thanks

[DizzyGirls]

My daughter had her tryptase levels checked as well as plasma histamine levels.  Also, a 24 hours urine collection checking for histamine levels.  Her hematologist was the one who prescribed these tests and keeps track of her mast cell issues.

[Weyland]

12 minutes ago, DizzyGirls said:

My daughter had her tryptase levels checked as well as plasma histamine levels.  Also, a 24 hours urine collection checking for histamine levels.  Her hematologist was the one who prescribed these tests and keeps track of her mast cell issues.

What sort of symptoms was your daughter having that led her to testing by the hematologist ?

[DizzyGirls]

A few years before, her PCP had checked her tryptase levels on a whim trying to find out what was going on.  I don't remember what symptoms she was having, but there must have been something going on at the time to cause him to look.  Her level was 17 at that time.  Her recent level came out to 11 and that is on h1 and h2 blockers.  But, that being said, I think her Mast Cell issues are the least of her worries at the moment. 

About 10 months ago, she started having bad erythromelalgia flares and we thought it could be from MCAD, but it is looking like now it is most likely due to a severe case of cervical instability.  She will be having an MRI as soon as possible to check the integrity of her spinal cord.  The neurosurgeon is most sure that all her strange neuro symptoms are being caused by the fact that her spinal cord is being impinged.