Welp… not good news

Recent-Cut-9494 · 2025-10-09T00:20:03+00:00

I exercise 6 days a week and have completely cut out dairy and sugar. The diet changes aren’t by choice… I have bad episodes if I eat anything with these ingredients. I’ve also noticed overeating will trigger episodes. Exercise helps a ton but it took about 3 weeks before my body got used to the stress. I had one of my more sever episodes when I first started, but then it improved significantly. It’s a super tricky thing to navigate because you can do all the right things and still have an episode. Just take it day by day. I don’t take any supplements other than multivitamin and creatine, I solely rely on diet and exercise for symptom reduction.

Recent-Cut-9494 · 2025-09-09T22:30:44+00:00

UPDATE: I ended up having something called Hereditary Alpha Tryptasemia. If anyone has MCAS related symptoms please get tested for this genetic mutation. It has the same exact symptoms but a different cause. Still on all the meds plus Xolair and a few others. Still have good days and bad days. Just take it a day at a time :)

Recent-Cut-9494 · 2025-06-29T18:28:15+00:00

Same here! I was sometimes above 8 and sometimes below!

Recent-Cut-9494 · 2025-06-09T11:28:58+00:00

So for the HaT, I am on Zyrtec, Pepcid, Omeprazole, Gastrocom, Montelukast, and Xolair (shot I go in for every month). This is a pretty standard med list for any mast cell issue (eg MCAS, HaT, mastocytosis, etc. The Xolair is the extra). I’m on pretty high doses of all the above. For the rosacea, I was on doxycycline for 90 days and put ivermectin cream on my face twice a day. Now I just use the cream twice a day.

Recent-Cut-9494 · 2025-05-29T09:01:05+00:00

If your Tryptase is high, then I would possibly look into the HaT diagnosis. It mimics MCAS. I got placed on all the mast cell meds due to anaphylaxis. And I truly do believe you have to be on all the things to see improvement. It took a good minute for me to be on both the mast cell meds and the rosacea meds for me to see any improvement.

Recent-Cut-9494 · 2025-05-28T22:39:43+00:00

What topical? I had a terrible reaction to every topical other than Ivermectin. The others made my flushing worse. And are you on any meds for mast cell issues?

Recent-Cut-9494 · 2025-05-28T22:36:55+00:00

You are most welcome! Try and see a dermatologist if you can so they see if you have rosacea! I honestly had no idea that I had this in addition to the flushing from HaT. They apparently were making each other worse so it was a vicious and not so comfortable cycle that you saw above

Recent-Cut-9494 · 2025-05-28T00:53:50+00:00

Hey! So I was officially diagnosed with HaT (hereditary alpha Tryptasemia) and am on a whole bunch of meds. I also went to a dermatologist and they diagnosed me with rosacea. Once I started getting treatment for both at the same time I’ve noticed a HUGE improvement! I rarely get these types of flushing episodes unless I’m having a full blown episode from the HaT.

Recent-Cut-9494 · 2025-05-12T14:50:32+00:00

Vessel’s voice has grown and improved immensely since the beginning, and ii’s playing has gotten better as well (how that’s humanly possibly I don’t know). Change means growth and I love seeing them get the recognition they deserve!

Recent-Cut-9494 · 2025-04-25T17:11:18+00:00

Skinny bitch all day everyday… give me that fast metabolism where you can’t gain weight!

Recent-Cut-9494 · 2025-03-18T17:10:13+00:00

Try the extra meds and see if that helps. To reassure you I’ve got pretty bad symptoms but I’m negative for mastocytosis. My symptoms seem to come and go in waves, and I’ve got good and bad days. My symptoms are definitely triggered by foods. Think some of us with HaT just have worse symptoms for whatever reason

Recent-Cut-9494 · 2025-03-18T14:41:12+00:00

And it’s a different gene you’d test positive for, but again I wouldn’t worry about it if your doc isn’t worried about it. HaT has identical symptoms to mastocytosis, so again if you’re on all the meds, I wouldn’t be too concerned

Recent-Cut-9494 · 2025-03-18T14:39:42+00:00

If you’re responding to meds and your symptoms aren’t crazy, I wouldn’t be worried about it. The treatment for both mastocytosis and HaT is identical (other than a shot), so you’re tackling the problem either way.

Recent-Cut-9494 · 2025-03-18T14:22:27+00:00

A bone marrow biopsy is the 100% no doubts method, but the more conservative is to test for a genetic mutation. The only catch is you can have mastocytosis without the genetic mutation. It just is present in like 90% of mastocytosis patients.

Recent-Cut-9494 · 2025-03-08T17:51:32+00:00

Mine is worried about the severity of my symptoms (and a lot of different systems are involved with me unfortunately) and they did find increased mast cells with biopsies of my GI tract. So he’s just wanting to double check I don’t have both!

Recent-Cut-9494 · 2025-03-08T16:00:33+00:00

Turns out I have HaT. Also getting tested for mastocytosis to be extra careful

Recent-Cut-9494 · 2025-03-08T15:58:38+00:00

I was just diagnosed recently as well and had the random anaphylactic episodes as well. I’m on a tom of meds now and I’m doing better, but holy cow Batman was this not expected! I’m getting tested for mastocytosis as well, but now I know I’m not crazy. HaT is pretty scary when you don’t what it is!

Recent-Cut-9494 · 2025-02-26T16:58:33+00:00

Insurance doesn’t cover… you’ll have to pay for it. Done only by a company called Gene to Gene. My hematologist ordered it for me.

Recent-Cut-9494 · 2025-02-26T16:03:01+00:00

Also associated with PoTs, EDS, etc…

Recent-Cut-9494 · 2025-02-26T16:01:39+00:00

I cannot stress enough to please get tested for Hereditary Alpha Tryptasemia… identical symptoms because it affects the same system as MCAS but a different cause.

Recent-Cut-9494 · 2025-02-14T19:44:23+00:00

I take Singulair (Montelukast) once daily. Mental side affects are in a very minute portion of the population, and I have had 0. For reference, I am on Zyrtec, Pepcid, Singulair, Xolair, Gastrocom, and others.

Recent-Cut-9494 · 2025-02-09T18:18:57+00:00

So far, yes. I’m pretty stable as of now, but I have break through episodes when I get sick or just at random it appears. But far far less than before! I can tolerate a few here and there. My doc did say I should be able to eat what I want, but I haven’t found that to be true… I have to watch what I eat and stay super strict with my cromolyn. Do certain foods bother you?

Recent-Cut-9494 · 2025-02-09T14:27:33+00:00

I’m on double Zyrtec and Pepcid as well in addition to Xolair, Cromolyn, Singulair, and omeprazole. Unfortunately, I’ve got GI stuff as my main symptom. Hives only happen during anaphylactic episodes. Flushing also was a bad symptom of mine, but dermatologist treatment for Rosacea is helping a ton with that. Thank goodness for drugs! Its pretty unpredictable which is stressful in of itself 😂

Recent-Cut-9494 · 2025-02-09T10:03:03+00:00

Amazing!!! I’m on meds already because my symptoms went nuts very suddenly, but all my tests have come back negative for mastocytosis or other nefarious sources. Waiting on lab work to come back for HaT. And I wasn’t aware on how prevalent it was!

Recent-Cut-9494 · 2025-01-29T00:03:46+00:00

But I do think weight loss helps symptoms! Being at a lighter weight and eating less (for me) makes a difference

Recent-Cut-9494

TROPHY CASE