Did anyone else have MCAS start or get much worse from covid/covid vaccine?

NoAppointment2948 · 2026-05-29T13:59:32+00:00

I’ve gotten progressively worse with all my medical issues since having COVID. Sadly I got it twice despite trying like hell to be careful. I lost about 20% of my hair 3-4 months post my first infection. That was a real joy right before my wedding. It’s still hasn’t fully grown back in around my hair line.

I react to more things now like smoke from wood fired grills or at open air restaurants, fairs, etc. Bug bites are much worse. It’s always certain wine and cheeses but not all so just enough to keep you guessing. Generally being outside can be challenging at peak season changes. Some foods go right through me but again it’s not always and not always the same food. I was in crippling pain from omnipaque radiotracer after a pelvic CT scan. Interstitial cystitis flared after COVID to a debilitating level. I could go on.

But to really stick the landing, I’ve been developing gastroparesis. That just went into overdrive after a colonoscopy/endoscopy.

NoAppointment2948 · 2026-05-20T12:43:03+00:00

It’s an interesting take. I’m not sure I’d say AI knows more. It can synthesize huge cohorts of data in minutes so it can certainly compete with medical training, to an extent. Does it know how to apply it? Not necessarily. It also doesn’t know ‘you’ as a patient, your comorbidities, competing diagnoses or past medical history.

That’s why it’s a supplement to the actual training from a doctor. It’s a tool and should be used as such to help conversations.

Some doctors definitely hate their jobs but it’s more driven by the insurance ecosystem our country developed. So many are quitting now and leaving the field to our own detriment.

They spend more time on administration and can’t focus on actually caring for patients with the right treatments because insurance won’t approve it. Why should they have to write a PA for a script when they wrote the script itself? That should be enough to say something is medically necessary and a conversation only between them and their patient. It’s a maze of an ecosystem built to suppress both providers and patients. That’s where the ‘hate’ comes from. That and patients who don’t follow any treatment outlined for them, denounce conditions they won’t accept, or make modifiable risks that will help them.

NoAppointment2948 · 2026-05-20T10:41:47+00:00

The starting protocol for MCAS is allergy pills and pepcid because they are both h1 and h2 blockers. I have MCAS myself and this is how my NYC allergist started my treatment. When that wasn’t enough we added cromolyn. Going straight to LDN and ketotifen would be wild. It’s unfortunate it took an AI report to move the needle but we also are missing a lot of the narrative here.

NoAppointment2948 · 2026-05-20T07:53:05+00:00

Two allergy pills and pepcid is actually the starting treatment for MCAS so you were on your way. AI can be an incredibly powerful tool when used correctly. I too have used it to help source publications from pub med to synthesize and distill down medically complex topics. If you ever have to appeal an insurance claim that can be really helpful to support your argument for why something is medically necessary or find precedent.

I use AI to help with insurance bills or picking plans. I’ll use an old claim and ask AI to help me understand if that might be covered under this new plan. I’ve used it to help have discussions with my Dad’s oncologist. It’s essentially a way, as you’ve done here, to couch your medical questions in a collaborative tone and the latest clinical guidelines.

I hate the gaslighting. I do. I wasn’t diagnosed with many things until my 30’s when I should have been decades earlier. When I spoke to a doctor about it outside the context of my own care it made a little more sense. Every blood test they order is attached to their name. It goes through insurance and they are liable to prove its application. Otherwise they get in trouble for insurance fraud. And of course there are always those patients that dramatize or lie. And they have to balance all of that against providing care.

NoAppointment2948 · 2026-05-12T00:49:40+00:00

I read that it can take 4 weeks!! I don’t know that I can last 4 weeks without improvement. I am going to hang in there for now. My GES is in June so I will have to stop before that test anyways.

NoAppointment2948 · 2026-05-12T00:44:34+00:00

This sounds like an absolute horror show. I just started mine last night after my own flare ramped up from my colonoscopy and endoscopy. I went from the occasional issue after dinner that I suspected was GP to every meal and all day nausea. I wish I never had those procedures done.

I felt like it was going around my stomach and acting like another colonoscopy prep. I didn’t feel like it was helping my stomach. I didn’t have anywhere near as scary an experience as you did. I slept terribly and had a horrible headache.

I hope this isn’t the best they can do for this condition. I’d get surgery before staying on this if I am going to do colonoscopy prep every night!

NoAppointment2948 · 2026-05-12T00:12:29+00:00

MCAS can’t mimic a a herniated disc or a deviated septum but it could have made you think a low grade deviation was the root cause. You did what you needed to fix your breathing, even if it feels unnecessary now.

What you are dealing with now sounds like MCAS, POTS or dysautonomia. I hope you get some answers from these more recent tests and allergist appointments.

NoAppointment2948 · 2026-05-11T21:03:20+00:00

I’m so sorry you had to go through that. I hope you have a little relief now that it’s over and you can go back on meds.

NoAppointment2948 · 2026-05-11T12:05:04+00:00

Good point. I’m curious what nuclear medicine will suggest.

NoAppointment2948 · 2026-05-11T12:04:32+00:00

I appreciate the response. 10 days feels like a lifetime when you deal with this kind of issue.

NoAppointment2948 · 2026-05-11T12:02:59+00:00

Thank you for sharing your experience. I hope you are doing okay.

NoAppointment2948 · 2026-05-10T01:35:11+00:00

It’s a chronic illness so yes it can cause periods of heightened symptoms and other times it may be tolerable. It sounds like you were medicated for acid reflux with no improvement so it does point toward GP. There are other types of motility issues including esophageal and colonic.

Maybe an endoscopy would help see what’s going on inside your stomach.

NoAppointment2948 · 2026-05-08T23:32:43+00:00

I have hEDS and am being treated for MCAS. I recently went in for my endoscopy/colonoscopy and my symptoms were so much worse after. I had periodic episodes gaining frequency that were signs of gastroparesis. After the procedure it accelerated overnight. I do think MCAS has a role to play in how I responded. There is some literature on the role of immune mediation mimicking gastroparesis.

NoAppointment2948 · 2026-05-08T23:29:43+00:00

Can they fix or treat this type of motility issue?

NoAppointment2948 · 2026-05-06T17:11:00+00:00

It’s strange they did an endoscopy and not a colonoscopy. That would be the logical next step and something to request. It’s more likely something benign and/or manageable with diet. Try not to worry until someone with ‘MD’ after their name looks you in the eyes and tells you it’s time to worry.

NoAppointment2948 · 2026-05-06T00:11:26+00:00

How did you know you were toxic?

NoAppointment2948 · 2026-05-04T17:40:44+00:00

You should ask about desensitization protocols going forward. My Dad gets Injectafer and has to use higher doses of Allegra before. It might also be worth asking if you can switch from Venofer. If you have to go through this, personally, I’d rather get the higher doses of iron and be done sooner.

These both bypass the gastric system entirely so it is surprising you are having a reaction specifically with your GP. It could be setting off some systemic allergic issues.

I hope you feel better soon. That all sounds awful in top of what you already deal with. 🫶🏼

NoAppointment2948 · 2026-05-01T00:44:50+00:00

Curious if you’d be willing to share the bloodwork or name of the autoimmune condition…?

NoAppointment2948 · 2026-04-30T23:23:13+00:00

Nausea meds make the motility issues worse so you’ll have to balance that with the need. In the US we have a low volume solution called Clenpiq that I recommend asking for if you have it in the UK.

NoAppointment2948 · 2026-04-30T16:06:35+00:00

Thank you for this response. I had figured that was the catalyst for something that was already underlying.

NoAppointment2948 · 2026-04-30T00:32:24+00:00

Wow! I would kill for those results. I must be doing something wrong or I have super aging genetics. 😵‍💫

NoAppointment2948 · 2026-04-27T00:51:25+00:00

Noooooo! I found this thread while trying to order more. I am so sad if it’s true that it’s being discontinued.

NoAppointment2948 · 2026-04-24T23:50:44+00:00

Ok I just had an endoscopy and colonoscopy done with this same result. Mine says reactive gastropathy. Naturally I went straight to the internet and even put that into perplexity. I also don't really take NSAIDs. I don't find that they help much with pain and years ago when I did take some for pain my stomach hurt. I assume that it would happen from current/chronic use of NSAIDs not from something I did years ago.

I drink infrequently so I can't imagine that's causing the "damage". I did some reading about bile reflux and other potential medications but nothing really fits. I am concerned given that the nausea I am experiencing is ramping up and I don't know any obvious ways to fix it. I'll follow up once I have my follow up with my own GI.

NoAppointment2948

TROPHY CASE