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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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For testing histamine is it better to get the 24hr urine histamine test or the serum histamine test?
Histamine is incredibly short lived in the body. What you want to test is N-methylhistamine, which is a metabolite of histamine. This is better done with a 24-hour collection of urine. Note, however, that all collected urine needs to be kept chilled at all times, even when transporting it to the lab. Here is one such test by Quest Diagnostics: N-METHYLHISTAMINE,URINE.
I don't think ME/CFS is due to a methylation block. I am fairly convinced that ME/CFS is just undiagnosed Mast Cell Activation Disorder. If you are having problem with histamine, have a look at this thread: ME/CFS is a mast cell disorder (hypothesis).
Good luck and let me know if you have any question!
But I'm confused now, because when I read about masto, the stuff I read seemed to say that the way it was tested for was to first do a tryptase and/or urine histamine (just straight histamine, not the methylhistamine), and then if positive they then do a bone marrow biopsy.
Another thing I saw on the masto forums was that it was very difficult to find a doctor who knows about this stuff.
So what would the single most accurate (and non invasive) test be for masto? Urine methylhistamine, PGD2 (urine or serum?), or heparin?
Are these tests and ordinary GP could order. Say, if I went to my GP and asked for this, and collected urine for 24 hours and turned it in to the local hospital for testing, then it should be fine?All the reading I have done suggests the following three tests as the necessary ones: serum tryptase, 24-hour urinary N-methylhistamine and 24-hour uninary Prostaglandin D2. And, if you have gastrointestinal symptoms or flushing, a 24-hour urinary 5-HIAA is also probably a good idea to rule out carcinoid syndrome. Heparin appears to be less used but I guess it can't hurt to do it.
Good luck!