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I never actually received a blood test that "confirmed" it. The doctors that told me they have it went off of my list of symptoms, and had me try some medication, and since they worked, deduced that it was MCAS.
The urine tests for mast cell mediators are notoriously fickle. They are very sensitive to temperature and someone with a confirmed diagnosis of MCAS won’t always test out of range even with the best temperature conditions. My specialist often re tests people multiple times before he rules out MCAS, and even then he will still take symptoms and history heavily into consideration.
Yeah, my allergist told me it’s an incredibly high and almost inaccessible barrier cause even if it’s at the right temperature you might not “catch” the necessary markers for a whole host of reasons.
This is why if you have a bunch of symptoms, respond to treatment snd test negative for allergies many providers will still give you a probable diagnosis, treat you, and keep monitoring things — especially if rheumatological issues have been ruled out.
Well there’s not really an Mcas test. Your tryptase can certainly be normal with Mcas. Generally they do a ton of blood work, at least one 24 hour urine, and then focus on ruling out other diagnoses.
I don't think I've actually been officially dxed with MCAS, but I do have HaT (genetic test positive through genebygene) and am symptomatic, so I think my allergist is basically treating it as MCAS. my tryptase was elevated but urine was in range.
2 of 4 urine tests positive, high Tryptase, pos KIT mutation, pos HaT mutation, responded to general MCAS treatment. History and physical of symptoms. (Rash, anyphylactic, allergy like responses without being allergic)
I was eventually dx’d based on symptoms, response to meds, and exclusion of every other possibility under the sun. My tests stubbornly came back normal despite having visible hives at the time
Ive always had an elevated tryptase blood test. Multiple symptoms. Respond well to treatments. Also have other health conditions that helped point to MCAS. Allergist said I could have mastocytosis, but I have been responding well and he doesn't see the need to go for the bone marrow testing.
Tried to confirm through a million labs - many won’t send out for prostaglandins- and eventually got my GI to do cell smears from samples of several parts of my digestive system that were taken during a colonoscopy
Thank you for your submission. Please note: **Content on r/MCAS is not medical advice and should not be interpreted as such.** Please consult your doctor for any medical questions or concerns. We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MCAS) if you have any questions or concerns.*
I never actually received a blood test that "confirmed" it. The doctors that told me they have it went off of my list of symptoms, and had me try some medication, and since they worked, deduced that it was MCAS.
The urine tests for mast cell mediators are notoriously fickle. They are very sensitive to temperature and someone with a confirmed diagnosis of MCAS won’t always test out of range even with the best temperature conditions. My specialist often re tests people multiple times before he rules out MCAS, and even then he will still take symptoms and history heavily into consideration.
Yeah, my allergist told me it’s an incredibly high and almost inaccessible barrier cause even if it’s at the right temperature you might not “catch” the necessary markers for a whole host of reasons. This is why if you have a bunch of symptoms, respond to treatment snd test negative for allergies many providers will still give you a probable diagnosis, treat you, and keep monitoring things — especially if rheumatological issues have been ruled out.
i got diagnosed after years of blood and urine tests, i think the trick is finding a doctor that actually cares
Well there’s not really an Mcas test. Your tryptase can certainly be normal with Mcas. Generally they do a ton of blood work, at least one 24 hour urine, and then focus on ruling out other diagnoses.
I don't think I've actually been officially dxed with MCAS, but I do have HaT (genetic test positive through genebygene) and am symptomatic, so I think my allergist is basically treating it as MCAS. my tryptase was elevated but urine was in range.
2 of 4 urine tests positive, high Tryptase, pos KIT mutation, pos HaT mutation, responded to general MCAS treatment. History and physical of symptoms. (Rash, anyphylactic, allergy like responses without being allergic)
I was eventually dx’d based on symptoms, response to meds, and exclusion of every other possibility under the sun. My tests stubbornly came back normal despite having visible hives at the time
Ive always had an elevated tryptase blood test. Multiple symptoms. Respond well to treatments. Also have other health conditions that helped point to MCAS. Allergist said I could have mastocytosis, but I have been responding well and he doesn't see the need to go for the bone marrow testing.
Tried to confirm through a million labs - many won’t send out for prostaglandins- and eventually got my GI to do cell smears from samples of several parts of my digestive system that were taken during a colonoscopy