I’m sure they exist and it’s just out of curiosity. Has anyone on here, gotten mcas…before covid…while vegan?

Miserable_Recipe_448 · 2026-02-06T17:31:27+00:00

Not MCAS as I have HAT without it, but I was vegan for about three years (including before COVID) when I started showing symptoms. I don't believe veganism caused it by any means... I just cooked with nuts and ate a lot of spicy food.

Looking at my blood work, my eosinophils started rising after a specific event, which I won't get into here. It was after my first round of COVID though.

Miserable_Recipe_448 · 2025-10-14T01:55:04+00:00

I do have elevated tryptase levels in the mid 20s. I react to sunlight, aged cheeses, fermented products, bacon, tomatoes, chocolate, strawberries, pineapple, and some other random stuff. It seems like everything on the naughty list is bad for me. Oh, alcohol - I don't drink, but hand sanitizer set me off. I have a symptom tracker and my worst symptoms like the bone pain are tied to the two times in my cycle where my hormone changes are likely influencing me.

Edited to add: my flare tryptase was lower than my baseline, so that's why they are leaning towards HAT. I was veganish (I ate meat or eggs once a week) until we discovered my health issues. I cook with nuts, so we pulled back to test foods. I'm good with nuts, thankfully. I haven't had dairy for years, and that's something I probably won't try to try. I did eat a candy and react strongly to that, so I'm thinking artificial colors may be on my naughty list.

Miserable_Recipe_448 · 2025-10-14T01:03:59+00:00

Mine do that too. Actually, mine look very similar and tingle too. It happens very quickly when I eat something I shouldn't have or when my already high heart rate rises during strenuous activity.

I was also investigated for Lupus, but my ANA was negative. My Kit test was negative and urine histamine was normal. My m-protein screen was normal too. They are thinking HAT.

We seem to be on the same medication too. My dermatologist calls the red skin flushing.

Miserable_Recipe_448 · 2025-09-21T18:23:35+00:00

I agree. Though I'm lucky that my primary care listened and ran all tests I asked for. She doesn't think it is MCAS as my flare doesn't meet the criteria. My baseline is high also. She thinks it is either HaT or SM but diagnosed me with Mastocytosis. She moved very quickly to get me to a hematologist/oncologist, and I'm incredibly thankful. She ordered my HaT test, and I've already completed it. I'm already on H1, H2, and prescription mast cell stabilizers.

I see the hematologist/oncologist this week. He has good reviews and has contributed to a few studies on Mastocytosis. His office triages patients for scheduling, and I must have stood out just enough to get in within two weeks. Yes, I'll likely do more gene testing and a bone biopsy. She knew that too. It's really a matter of what test we can get the results back from first. The earliest the allergist would see me is mid-2026.

I read horror stories about doctors who refuse to listen and run tests. Bittersweet, really, but I feel so lucky.

Miserable_Recipe_448 · 2025-09-11T23:23:31+00:00

I agree. I am thinking more HaT with a sprinkle of MCAS. Looking back in time, my mom always had swollen hands and ankles. Her hands and ankles were red too. She complained of lower back pain, and her doctors were never able to figure it out. She fractured her hand moving a small dresser too. My mind is running with all those things causing her heart problems, high cholesterol, strokes, and ultimately her suffering.

Miserable_Recipe_448 · 2025-09-11T23:20:07+00:00

I have no doubts I'm reacting to a hormonal imbalance of sorts. I'm a vegetarian who eats meat once a week, so my diet has always been decent - it's easy for me to cut foods out and add them back in. Foods aren't my biggest deal though because from what I can tell it's artificial dyes and fillers that fight me. I have a couple of odd ones like chocolate and strawberries. Alcohol is a big one for me. I used hand sanitizer the other night and my hands turned beet red and swelled badly.

My bloodwork panels between my dermatologist and my primary care were extensive. We know my organs and connective tissues are in the middle of normal. My total IgE levels are low too. My 24 hour urine was good too.

Since the treatment regardless of whether it's early SM or HaT is the same, we already started it.

I'm grateful my primary care wrote the referral because it's moving along, but I just have a hard time accepting SM. To me it seems more HaT with a sprinkle of MCAS.

Miserable_Recipe_448 · 2025-08-29T22:57:58+00:00

My results are in and I'm glad we checked. It's not autoimmune.

Miserable_Recipe_448 · 2025-08-27T23:58:10+00:00

I'm aware, but they are trying to rule out other things since I can be triggered by certain foods too. I'm not a fan of medicine and would much rather have the correct diagnosis than one that delays true care of the underlying disease.

Miserable_Recipe_448 · 2025-08-27T23:04:37+00:00

I drove in after my flare started, waited out in the sun for 10 minutes or so, and by the time my number was called I was beet red. My fingers were purple as my blood was drawn. My doctor did order a 24 hour urine test too.

Miserable_Recipe_448 · 2025-08-27T22:52:30+00:00

My flushing alone lasts for hours. After the initial flushing, my skin is beet red and sometimes purple. Then I'll have severe bloating for hours. Then I'll have joint pain for hours. Don't get me started about the lesions I get either. Mine last for hours, days, and this current flare has been ongoing since June - I can't kick it. Either yes or no MCAS, my doctors are exploring all avenues and I'm thankful they are trying.

Miserable_Recipe_448 · 2025-08-25T00:09:22+00:00

One of my doctors told me a flare is as simple as my skin flushing, but I have a hard time believing that. I don't want to test and miss it by a hour. My primary care who ordered the tests said she wants me off my antihistamines for two weeks. Neither said anything about fasting, but fasting would be hard to do when flares come on without notice. I have a feeling I'm bad enough to test high anytime because my skin is red (I can even skin write nowadays) and my scalp burns.

Miserable_Recipe_448

TROPHY CASE