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Old 02-29-2020, 10:16 PM
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janieg janieg is offline
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Join Date: Jan 2014
Location: Maryland
Posts: 792
10 yr Member
janieg janieg is offline
Member
janieg's Avatar
 
Join Date: Jan 2014
Location: Maryland
Posts: 792
10 yr Member
Default A diagnosis...finally

Hi everyone,

It's been six+ years in the making, but I finally know what is causing my neuro problems. I've been diagnosed by an immunologist with Histamine Intolerance (HIT)/Mast Cell Activation Syndrome(MCAS).

Neuro symptoms are not the usual symptoms seen by people who have this, but it's definitely not an unknown symptom. One thing that has been enlightening is that I've encountered people in the both the HIT and MCAS Facebook groups I'm now in who have my really bizarre neuro symptoms. I wouldn't wish them on anyone, but it's some consolation knowing I'm not crazy.

I've always known that food aggravated my symptoms, but I couldn't figure out what. With histamine problems, it depends on how full your histamine "bucket" is as to how much a high histamine food will affect you. Some food might hit you terribly one day because your bucket is full, and not affect you as badly the next time you eat it .Looking back now on my worst flares of all time, there's zero doubt what triggered them. And this also explains my long-standing problem with alcohol wreaking havoc on me.

The sad part is that Mrs D had started a Histamine thread years ago, and I engaged with her on it all the way back in 2015. There are two enzymes that metabolize histamine, DAO and HNMT. I actually bought DAO supplements back then to see if they helped, which they didn't, but it's HNMT I have the deficiency in. . At that point, I dropped pursuing it. I just didn't know enough about it at the time.

So anyway, if there's anyone out who feels strongly they have food triggers, please learn about high histamine foods, and see if you can see any trends with flares when consuming them. I don't see this as the complete answer to my problems because the MCAS is probably the root of the problem, but at least there are things I can do now to help my symptoms...finally.

Mrs D's Histamine Thread:

Histamine reactions and PN:


Last edited by janieg; 03-01-2020 at 06:33 PM.
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"Thanks for this!" says:
echoes long ago (03-01-2020), madisongrrl (02-29-2020)