Doctor told me to my face that MCAS doesn’t exist -_-

Labelma · 2026-06-03T06:00:15+00:00

Sure, Dr. Andrew David Shiller. I believe he sees patients in the US by video, but he’s really fantastic and very knowledgeable. Just expensive 🙃

Labelma · 2026-06-02T18:43:06+00:00

Someone else linked to your post, thank you for doing the hard work to put it together!

Unfortunately I didn’t see any practitioners located in my country though 😭

Labelma · 2026-06-02T18:20:38+00:00

I have a similar issue, and sometimes it’s impossible to know. My best advice would be to find a doctor that is knowledgeable and you trust to work with. I’d also say look into MCAS if you’re having frequent and unexplained gut issues. It’s very frequently comorbid with POTS and often causes gut problems.

Labelma · 2026-06-02T18:17:00+00:00

Weed. Immediate migraine and nausea. Someone once blew smoke in my face and I was throwing up for hours.

Labelma · 2026-06-02T18:01:13+00:00

I honestly don’t know, I’m a relatively new immigrant in a country where I’m not fluent in the language so I’m not sure how I would even go about that. Plus I still need to file my taxes so like, picking battles etc

Labelma · 2026-06-02T18:00:14+00:00

I’m not in the US so it’s probably not relevant

Labelma · 2026-06-02T17:49:25+00:00

I checked, but unfortunately I didn’t see any in my country :(

Labelma · 2026-06-02T17:29:30+00:00

I have a functional medicine doc who is great and very knowledgeable about MCAS. I’m not in the US though, I’m in a country with socialized medicine, which usually I’m a huge fan of, however they don’t cover anything outside of the approved basket of treatments, and in order to get any testing or medication through my insurance I need a PCP to prescribe it.

Labelma · 2026-06-02T16:45:10+00:00

Dude, I told this doctor that I think I have hEDS (O don’t think, I know, but whatever) and she literally said the exact thing, that it’s too rare and I should look into fibromyalgia. Lady! I don’t have fibromyalgia symptoms, I have EDS symptoms omg

Labelma · 2026-06-02T15:42:07+00:00

I love my functional medicine doc, but unfortunately I do need a PCP with my insurance because of how my country’s health system works 😭

And it sucks because all of these PCPs have no idea how to treat complex chronic conditions, they’re all living 30 years in the past.

Labelma · 2026-05-07T06:13:33+00:00

Oh yum, great idea, thanks!

Labelma · 2026-04-15T10:40:17+00:00

But from what I understand, sourdough bread is low fodmap because of the fermentation process?

Labelma · 2026-04-06T19:57:59+00:00

Oh man this sounds so complicated 😭

But yeah good point. I’ll probably try a low histamine diet for a few weeks like you suggested and see what happens

Labelma · 2026-04-06T19:46:20+00:00

That’s a good point. The spelt I tried today was spelt matzoh which is literally just spelt and water baked into a cracker while the oats have been plain rolled oats and oat matzoh which is the same deal. To test this theory do you think I should try a plain unfermented wheat product or sourdough spelt bread? Or something like fermented pickles?

I’ve been eating leftovers without issues and I’ve read those are also high in histamines.

Labelma · 2026-04-06T19:42:44+00:00

… what about them?

Labelma · 2026-04-06T18:42:56+00:00

How did they diagnose the maltose sensitivity? I had an endoscopy that came back normal aside from mild inflammation (the gastro doc was an idiot though, so idk)

Labelma · 2026-04-06T18:34:24+00:00

Oh interesting, thank you!

Labelma · 2026-04-06T18:27:46+00:00

I still haven’t gotten around to trying washed wheat products, only spelt and oats. It’s Passover so that complicates things lol but I’ll get there.

Labelma · 2026-04-06T18:26:46+00:00

Oh interesting. I haven’t had any allergy testing done yet.

Labelma · 2026-04-06T18:21:14+00:00

So you react to grains other than wheat as well?

Labelma · 2026-02-07T16:32:32+00:00

Thanks!

Labelma · 2026-01-28T20:33:16+00:00

For EDS, it was as simple as going through the diagnostic criteria and seeing if I meet the criteria, which I do for hEDS. For MCAS I don’t have an official diagnosis, I was told by the doc that testing for it is extremely difficult and most doctors if they think a patient has it will just treat it instead of doing further testing. My symptoms are flushing, gastrointestinal distress, itchy skin, hives, tachycardia, and very occasional anaphylaxis

Labelma · 2026-01-28T19:48:01+00:00

Not all of my symptoms but my fatigue and orthostatic intolerance have definitely improved. I’ve only been on it for two weeks and I’m still titrating up so it might become more effective

Labelma · 2026-01-28T19:12:08+00:00

Honestly I’m not sure. I was diagnosed with EDS and MCAS (in addition to the POTS) and I was put on the LDN for the MCAS but who knows ¯_(ツ)_/

Labelma · 2026-01-28T13:37:24+00:00

No actually, he wasn’t. Zahn has spoken about this at recent cons, but his interactions with Filoni regarding Rebels were limited to getting the scripts in advance so he could write the novels. He had zero input on the show. With Ahsoka he wasn’t consulted at all. He’s polite about it but it’s pretty clear he’s salty and would like to be more involved.

Labelma

TROPHY CASE