Adytum
Region: US
Friday 29 May 2026 02:01:38 GMT
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Adytum :
Curious how many people here have asked their doctor about this and actually gotten the test ordered.
2026-05-29 02:03:28
59
Kelly Jeanne :
I have Hereditary Alpha Tryptasemia! My doc saw my super high tryptase, hematologist tested for KIT gene (neg) for mastocytosis, then allergist tested for HaT. He suggested the test not me. Bad part is there's no "treatment" for symptomatic people and technically not enough research to suggest shared symptomology besides a slightly higher risk of anaphylaxis.
2026-05-30 02:04:30
9
DearMissAlly :
I did one of those Ancestry DNA tests and downloaded my entire genetic code... is there anywhere I can send it to for diagnosis??
2026-05-29 15:51:01
0
Rebecca Blevins :
What would be the way to treat this, though? My allergist said that MCAS doesn’t always show up but if you treat it and it helps and that basically proves you have it. So would it be worth it to ask for this other test if they are already treating the symptoms with antihistamines? I see her on Tuesday so this was good timing.
2026-05-29 03:56:50
18
Hannah Chapman :
I've got it. I wasn't symptomatic until after I got a Covid infection in 2024.
2026-07-25 23:44:48
7
appleuser278996 :
Having the genetic variant does not guarantee that someone will have symptomatic “HaT syndrome.”
2026-05-29 13:51:08
32
Julia :
I decided I thought that's what my daughter had years ago (she has hEDS and various MCAS symptoms). Her doctor tested her blood tryptase and then later did a 24-hr histamine test of her systems. I wonder if we could really get anyone to order the test or insurance to cover it. There are multiple genetic tests I would like to get done, but it doesn't seem like doctors ever order them.
2026-05-29 06:10:45
6
MamaMarcy :
So i keep having MCAS attacks and they keep just testing the tryptaste. I keep saying there is better test because I keep seeing people with MCAS getting diagnosed with that normal test. I’ll look into this test! Thanks
2026-05-30 06:56:26
19
chipch124 :
I just got diagnosed today after having breathing trouble, hives, and anaphylaxis!
2026-09-16 14:34:14
0
justwatchingsarah :
I was recently diagnosed with HaT after having the genetic testing done. I have always been sensitive to different medications, but it became worse after having covid in 2020. I’ve gotten much better at figuring out my triggers over the past 2 years. Currently my biggest one is sugar and lactose. Unfortunately they happen to be a non active ingredient in many medications. So my journey to finding out what works best for me is tricky for my dr.
2026-05-30 02:48:31
5
Madi-Jane 🌺 :
My allergist was so locked in. After having all the symptoms but not MCAS she immediately sent me for the HaT genetic testing and is now treating me with injections! Gold star for her
2026-08-24 07:18:15
2
genxgem :
The key word is “hereditary”. Besides myself, my twin sister, older sister, and 2 nieces have this. I was originally diagnosed with MCAD about 12 years ago and then later diagnosed with haTs after my twin was diagnosed with it. Our doctors don’t treat it differently than MCAS. We all take the standard H1/H2 histamine blockers, cromolyn sodium, and hydroxyzine as needed. I’ve never really understood the difference. I thought haTs was just mast cell disease that was genetic/hereditary. Seems like there’s a difference. I should research this some more. We all have mast cell activation and have gone into anaphylaxis, although it’s more rare for me than my sisters, but I have mast cell degranulation symptoms every day.
2026-05-30 02:25:39
1
4B_Bear :
Is it available in Canada? 🇨🇦
2026-05-29 15:42:43
1
Sky and jozi :
My allergist ordered this before I even knew what it was. Based off of symptoms he ordered a bunch of test, found my tryptase was high and immediately ordered the test for hats and mastocytosis. Found out it was hats. I’ve been to an allergist before who refused to do any test and just told me I had runners itch and that was all. This new doctor is literally the best!
2026-07-10 01:24:16
0
user4676781173456 :
I have HaT, I ordered the genetic test by myself and had my allergist sign off on it. My tryptase level sits at 20 all the time. My allergist said I likely had it. Which I did. I also have EDS and was told they can be linked.
2026-07-12 23:33:29
3
Nicole ☀️ :
Pretty sure one of my kids has this. What is the protocol after diagnosis?
2026-05-30 02:35:19
1
sartorial_siren :
Ive never had positive tryptase testing even in the middle of my worst flare. All of my drs still agree I have MCAS. That test has high specificity but a low sensitivity. So if you test positive its pretty likely you have mcas but if you have a negative test it doesnt rule it out.
2026-05-31 03:18:59
0
🌻 DESS | CHRONICALLY ME :
Asking my allergist and my childrens. We have genetic tests on file so I would think they can go back and look
2026-05-30 01:32:11
1
4B_Bear :
You mean PCR?
2026-05-29 16:02:03
1
🔥Goingdowninflames2 :
My allergist order this test, came back negative, so we are back to the drawing board.
2026-06-01 14:18:59
3
MM :
My allergist tested me for mastocytosis and for HaT. I did not have mastocytosis but do have HaT. He told me on my last visit that HaT can turn into mastocytosis. Is this true ?
2026-05-30 03:00:45
2
GothGeisha :
My son has this. They accidentally found it when he was 9. He also has EoE.
2026-05-30 19:50:25
0
sharon :
How do you know? What do you test?
2026-05-29 18:44:27
2
catlady3003 :
HOWWWW are all these videos coming mast cell videos appearing on my fyp now of all times I swear my phone listens in on my doctors appointments
2026-05-30 11:03:56
2
infusedwithjosie :
I got tested a few months ago and have it! But I’m not super symptomatic BUT also meet the criteria for MCAS and my MCAS is pretty severe. So interesting!!!
2026-05-31 00:16:53
2
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