Hi
@Allyb510,
I think the tests are considered unreliable mostly due to the time and handling constraints of the sample. You're not likely to see elevated values unless in the midst of a reaction, and also reliant on the samples being immediately frozen and handled properly later on.
That makes sense Ryan. I've read that patients sometimes do things to bring on a reaction, if they know their levels are being tested.
I vaguely recall various Prostaglandin tests being discussed in Dr Afrin's book "Never Bet Against Occam" - can't remember his views but the book is well worth reading if you haven't already
Interesting. I have Dr. Afrin's book on Justy's recommendation and I see he says about Prostaglandin D2 "...an inflammatory mediator produced by mast cells...if a specimen has been carefully chilled...and an elevated level is found...it is a pretty reliable sign that a heightened state of mast cell activation is present..."
Yes, I think I fit that description.
https://www.aaaai.org/Aaaai/media/MediaLibrary/PDF Documents/Immunotherapy Forms/7b-World-Allergy-Organization-Systemic-Reaction-Grading-systemx.pdf
I would be grade 2 here. Normal reactions include cutaneous, upper respiratory & gastrointestinal. Its possible that at my worst I was edging higher as I had some isolated episodes of breathlessness & severe hypertension, but I have POTS and other stuff going on so perhaps they were to blame (if not already directly involved triggering the damned mast cells!)
Thanks for that Ryan. I hadn't seen that excellent document before and I've saved it on my laptop. Do you think the UK docs use this scale in their evaluations? I would say I'm a Grade 2 also, although I have oral allergy, which makes the throat swell and so confuses the issue. Do you take your blood pressure at home during reactions? I find I get very agitated and can't think straight during reactions so ideally someone else is needed to take over.
Hi
@justy,
Yes, I noticed that too. I think the good reports outweigh the bad ones. He was polite and respectful but also, how shall I say, 'very experienced'...I wonder if that equates to being a bit old school and perhaps he didn't take kindly to someone walking in and demanding a diagnosis of MCAS because they read about it on the internet. Pure conjecture though...
You know, I sometimes think most doctors would prefer you to sit home suffering in silence rather than approach them with an hypothesis of your own. Possibly they see it as challenging their authority. In my experience, you have to spell things out in the plainest possible terms! I told Dr. Croom that I thought I had MCAS and she was ok with it. But all the GPs in my surgery give you the frosty stare.
Much like
@justy I can eat some foods considered high histamine. Things like aubergine, avocado and nuts. But without fail I will react to fermented foods, slow cooked foods, left overs. Seafood is complete russian roulette so also better off without.
Isn't it interesting how we're all the same but also different? I've had a terrible reaction to avocado and would never eat again. Fermented is tricky. Are probiotics a no go area for you? Or certain ones only? I notice the same with leftovers in a big way...it made a difference when I quartered a portion of raw lamb mince and froze the separate sections. I just bring a section out, cook and eat, rather than having leftover cooked lamb which was making me itch like crazy.
Edit: Forgot to say, I can also reliably trigger reactions through orthostasis/exertion. HyperPOTS suspected, so apparently not that unusual...
