How to Diagnose Mast Cell Activation Syndrome (MCAS)

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Many patients at my practice that I see come because they are concerned that they have mast cell activation syndrome. And it can be diagnosed easier than you think!

Mast cell activation syndrome has only been discovered in the last several years but probably has been around forever. A lot of patients who have allergic reactions whether its to foods, environmental exposures to even vaccines may have mast cell activation syndrome.

Now there are some sophisticated tests that we can do in the blood to check for mast cell activation but they're not always that accurate.

Believe it or not, one of the easiest ways to have an idea if you should be further evaluated for mast cell activation actually involves a simple stroking of the skin.

// F O L L O W

// P O D C A S T
Check out our podcast - The Smartest Doctor in the Room

// A B O U T
For over 25 years, Dr. Dean Mitchell, Board Certified Allergist and Immunologist, has specialized in treating leaky gut, candida, chronic fatigue, fibromyalgia, and immunology in NYC. Unlike most doctors, he believes in treating the cause of the illness - not the symptoms. He has been featured on ABC, Fox, BYUradio, The Huffington Post, LI News Radio, and The New York Times for his knowledge on allergy treatments and holistic health.
Location: NYC & Long Island

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Been suffering over 4 years and no doctor in my area believes me, because my tryptase comes back normal. I have Dermatographism, gut issues, neurological issues, etc.

MrCrimsen
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I am a textbook Mast Cell Activation Disorder candidate with 90% of the symptoms and conditions associated with it. I've never been that person who's skin goes super red when you scratch it. Yet my husband, who does not have MCAS, is that person who you can write on their skin with your fingernail and it will stay red and inflamed for hours. So this video didn't really help. I'm frustrated that primary care docs aren't trained in MCAS yet the allergists in my area don't want to work with MCAS candidates to get an official diagnosis. I was given a tryptase test by an allergist who did not tell me that you are supposed to get the test when you are having a major flare up. I waited two months until I was well enough to go get a blood test... then the allergist gad the audacity to say "there's nothing I can do for you. Your bloodw9rk came back great.. your tryptase level was normal." by the time I saw him for this follow up I knew the tryptase protocol -- that you are supposed to perform it milyiple times and the oatiejt is supposed to try to get the blood test while in a major flare up. I asked him how he could possible be satisfied with sending me away after one test, that I took when I felt my absolute best in two months. he got really uncomfortable and said since I don't have allergies he can't help me. I asked him what kind of specialist I should ask ly doc to refer me to then if it is out of his scope to help mcas candidates... he got really uncomfortable and said "OK, I'll run another teyptase test." he also told me he can get audited if he runs too many tests since I don't have life threatening allergies. I'm getting close to reporting him. it's like he just wants me to go away so he doesn't have to deal with this diagnosis.

coachmindy
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You're one of the few who can see it. Even laughing or crying even coughing can bring on an an attack for me!

justachick
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Thank you for this. I wish I had known about this years ago. Dematographism runs in my family. I had this my whole life and recently was diagnosed with MCAS.

dddrummond
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MCAS can come from hidden mold in your house or also from vaccines

clemensh
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I have had so many of the symptoms for my entire life- shortness of breath, flushing, random skin rashes for no reason, GERD, IBS-C, eyes watering 24/7, raised welts on my skin if I scratch it at all. Thankfully Zyrtec, Singulair, prescribed acid reflux med (really an antihistamine), and MANY gastrointestinal meds have made my life livable.

elizabethneel
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Wow, I have suspected MCAS And I’ve had weird allergic symptoms my whole life with migraines and joint pain my worst symptoms. I just used the tip of a soap dispenser pump and lightly wrote a red V in my chest. Ty for sharing this

sunnynights
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Man, MCAS is sounding more and more like what I'm experiencing. Two specialists are already convinced I've got Ehlers Danlos and currently being assessed for POTs because I've always had these weird symptoms, dizziness, fast heartrate, near fainting. And weird allergy problems that sometimes don't show up as allergies with skin testing.

thegracklepeck
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Just fyi, Doctor, not all of us have dermatographism. I have the worst case my specialist has seen in the history of his practice (38+years), and it's rare for me to have that as a symptom. My specialist says this test is roughly 20% accurate at best and even less so in women, as the dermatographism can disappear totally during ovulation and the progesterone half of a woman's cycle. It also can only occur during an active mast cell flare in some people.

maryamjoha
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I wish you were my doc! Even after getting diagnosed half of doctors I meet have no idea how to treat me or even claim I am just crazy and not sick. lol Dude... I prayed for crazy. There are pills for that! NOPE I just HAD to have MCAS with corn allergy. The worst possible combo.

dddrummond
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My skin didn’t react and a functional md said that means I can’t have mcas. My tryptase is 12.7 and I have extreme flushing, rashes, gi issues, reactions to foods, I’ve lost 30 lbs.
Don’t solely rely on rubbing the skin please.

ninap
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This is amazing, thank you. I can play tic-tac-toe on my skin, but I failed the tryptase test. Getting on loratadine, famotidine, montelukast, and hydroxyzine took my life from excruciating to manageable.

howtomeetwomen-
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I have not found immunologists in oc calif. My case is extreme . I just need. Doctors that actually know more then me. Happy I found you.

tigerdigs
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Wow I have severe dermatagraphia. Always have. I can't take even the fastest of showers because I put up like the Pillsbury dough boy. I do have MCAS. It was my 5th diagnosed autoimmune disorder after a bad gastric surgery that sent me reeling.

Are you finding that most MCAS also have POTS? There was a year between the 2 diagnosis. I've thought about allergy testing but am afraid of what that could do.

Syndilouwho
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I have an extensive lifelong history of allergic reactions/ intolerances to many foods, medication, iodine contrast dye, etc to the point of hospitalization. Now, it is to the point where I can barely eat anything without some sort of gastrointestinal consequence. I had allergy testing, both igg and ige for all of the things that I know affect me, but all of that testing came back negative. I have EDS, SFN, and dysautonomia. I suspect I have MCAS as well. It is very discouraging. I just tried this test and all I get is a red line, no welt or raised bumps so I don't think I have dematographism.

kerrilandry
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I have exactly that skin reaction and gastro-intestinal symptoms, however my GP advises the serum tryptase test is normal results so MCAS can't be considered, he dismissed the symptoms as being due to cEDS.

TeamRockHit
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I’m wondering how many people are living in mold, or have had mold exposures & belongings are contaminated. It can be a part of ongoing mast cell illness.

gilliani.
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Just had an evaluation yesterday and one of the first things she asked was if I ran this pen over your skin, would it puff up and turn red. Which was a yes. Still going for some bloodwork and then they are switching me to the immunologist in the practice. I Have pots and hypermobile ehlers danlos, and MCAS is a very common comorbidity. We’re hoping doubling up Zyrtec can help control symptoms but if not I may need something stronger.

heatherjackson
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That's how my GI doctor started thinking I had it. After, she did an endoscopy with the appropriate tincture (if that's how it's called) and bingo.

carmencalderondv
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Is there any relation to methylation? i’m homozygous for MTHFR and have histamine issues. I easily flush and turn red

elggames