houswoea Posted January 21, 2017 Report Share Posted January 21, 2017 Okie doke. I don't know if my testing is negative or positive and it is driving me up a wall. My Prostaglandin D2 level in 24 hr urine was 4389. The reference range says over 5205 is mastocytosis, but I don't know if I could still qualify as MCAS with something on the higher side, but under 5205. Other testing was negative or borderline. I was not flaring at the time. Quote Link to comment Share on other sites More sharing options...
angelloz Posted January 21, 2017 Report Share Posted January 21, 2017 I always thought tryptase was the gold standard for Mastocytosis...but even with high levels they would do a bone marrow biopsy. I think elevated prostaglandins and other criteria could point to MCAS. I have elevated tryptase and prostaglandins and other markers and was diagnosed with MCAS. I am still investigating this as the antihistamines didn't help me. I had a BMB which was negative..that was a few years back. Your doctor will have thoughts about this I imagine. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted January 22, 2017 Report Share Posted January 22, 2017 Hi there. I don't have MCAD or mastocytosis, but I think prostolandin's are affiliated with an activation of the inflammatory response, production of pain, and fever. I was told that when there is inflammation or infection that WBC's basically rush to the site where tissue is damaged in an attempt to prevent tissue damage and prostoglandin's are elevated in all acute inflammatory levels as well as vasodilating effects. Vasodialating effects from prostaglandin, I was told along with adrenaline spikes it's the reason for my flushing and redness, and play a role in increased blood flow. I had a previous high histamine level, but the last series checked was normal, my prostoglandin's were high and tryptase normal. As far as I know, the above blood work doesn't need to be high, once or consistently, but symptom's are vital. My local hematologist wasn't experienced in mcad, so I think he followed the guidelines for mastocytosis. http://www.brighamandwomens.org/Medical_Professionals/education/publications/ppd/2012/April2012/mastocytosis-center.aspx, http://mastcellaware.com/ . Do you have joint inflammation, or pain in your body, including in your GI tract? Prosotoglandin's protect your stomach by excreting necessary acid's from stomach lining members. They also play a role in asthma and flow to your kidneys. Quote Link to comment Share on other sites More sharing options...
houswoea Posted January 22, 2017 Author Report Share Posted January 22, 2017 Thank you for your help! I have lots of GI problems, EDS joint problems, chronic pain, fatigue, ECT. I'm hoping it qualifies me for MCAS so I can try a new course of treatment to help that. And maybe the POTS could be tamed too! Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 23, 2017 Report Share Posted January 23, 2017 This paper has a section on the variety of tests that Dr. Afrin looks at in diagnosing MCAS since tryptase is not reliable or easy to catch in an elevated state: http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm Quote Link to comment Share on other sites More sharing options...
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