My tryptase level came back normal but the 24 hour urine leukotriene test showed high levels of mast cells. My doctor then ordered a biopsy on an EGD done a few months earlier and also found elevated mast cells. Bingo - 2 areas of significant mast cells - MCAS diagnosis.
Another issue that fuels this lack of useful MCAS and mastocytosis lab testing is the attitude of pathology labs at major hospitals. I've personally had several of my physicians including my reknown MCAS specialist allergist and complex care provider (also a mcas/heds/pots specialist) order staining from major university hospitals in the Los Angeles area and their lab Pathologists refused to do the stains. They claimed there is no medical proof that MCAS staining is diagnostic or provides any useful insight into mast cell disorder which is flat out wrong. My Drs pushed back, saying that the staining was for their own disease monitoring purposes, not for diagnosis as she had already diagnosed me clinically. Pathology still flatly refused. Even when the issue was brought up with ada compliance and patient experience, the answer was still no. Later I realized that CMS lab rules have a hand in this: Medicare auditors actively penalizes pathology labs across the country that perform an abnormal amount of non-standard stains. There's no medical reasoning behind CMS's behavior, it is simply a cost limiting policy. Understandable to an extent because not every patient needs a bunch of rando expensive stains, but if a patient has a documented history of MCAS and allergic symptoms and/or a pre-existing diagnosis, no lab staff should not be able to deny a doctors legitimate order. It's just another frustrating example of how hard it can be to get accurate and relevant labs for this condition.
Graphics and checklist are excellent and helpful for focusing on key points. Thank you. If I were tech savvy and could figure out a way of printing a set of cards displaying your many cool graphics, I would do it. Perhaps one of your many Bendy Bodies Boutique contributors could do it?
Hello. What do you think about empirically treating a patient without doing any testing if you believe they have enough clinical signs to suggest MCAS. If the testing is expensive, potentially unreliable and isn’t helping the patient feel better the most important thing?
Do you happen to have any recommendations on primary care providers in Colorado Springs? I’ll even consider a drive to Denver. I have official HEDS, POTS and MCAS diagnoses but would love a PCP who is even a little knowledgeable on these issues.
My tryptase level came back normal but the 24 hour urine leukotriene test showed high levels of mast cells. My doctor then ordered a biopsy on an EGD done a few months earlier and also found elevated mast cells. Bingo - 2 areas of significant mast cells - MCAS diagnosis.
Superb advice
Long-term conditions often require a long-term mindset. I appreciate that this article focuses on sustainable progress instead of quick wins!
I wish this kind of guidance came with the lab order. People are told which tests to get, but rarely what can affect how the result is interpreted.
Another issue that fuels this lack of useful MCAS and mastocytosis lab testing is the attitude of pathology labs at major hospitals. I've personally had several of my physicians including my reknown MCAS specialist allergist and complex care provider (also a mcas/heds/pots specialist) order staining from major university hospitals in the Los Angeles area and their lab Pathologists refused to do the stains. They claimed there is no medical proof that MCAS staining is diagnostic or provides any useful insight into mast cell disorder which is flat out wrong. My Drs pushed back, saying that the staining was for their own disease monitoring purposes, not for diagnosis as she had already diagnosed me clinically. Pathology still flatly refused. Even when the issue was brought up with ada compliance and patient experience, the answer was still no. Later I realized that CMS lab rules have a hand in this: Medicare auditors actively penalizes pathology labs across the country that perform an abnormal amount of non-standard stains. There's no medical reasoning behind CMS's behavior, it is simply a cost limiting policy. Understandable to an extent because not every patient needs a bunch of rando expensive stains, but if a patient has a documented history of MCAS and allergic symptoms and/or a pre-existing diagnosis, no lab staff should not be able to deny a doctors legitimate order. It's just another frustrating example of how hard it can be to get accurate and relevant labs for this condition.
Ugh!! That is so frustrating and such an example of regulations that hurt patients💔💔💔💔💔💔
Graphics and checklist are excellent and helpful for focusing on key points. Thank you. If I were tech savvy and could figure out a way of printing a set of cards displaying your many cool graphics, I would do it. Perhaps one of your many Bendy Bodies Boutique contributors could do it?
i’m waiting 2 weeks to get lab work from the allergist because i know i feel worse around my cycle!
Hello. What do you think about empirically treating a patient without doing any testing if you believe they have enough clinical signs to suggest MCAS. If the testing is expensive, potentially unreliable and isn’t helping the patient feel better the most important thing?
Hi Dr. Bluestein,
Do you happen to have any recommendations on primary care providers in Colorado Springs? I’ll even consider a drive to Denver. I have official HEDS, POTS and MCAS diagnoses but would love a PCP who is even a little knowledgeable on these issues.
Thank you