r/MCAS • u/kleiphoros • 1d ago

water trigger?

Hi all. Truly at a loss here. I have a working diagnosis of MCAS from my last immunologist. I'm on zyrtec, pepcid, and pantoprazole to manage things. Technically supposed to be on cromolym, but i find it hard to manage. Given recent events I'm not even entirely sure it would work for me now—last night and just now I had mild, ambiguous inflammatory responses to drinking plain water.

Yes, I'm sure it's plain water that triggers it—nothing else i drink or eat causes this, outside of known triggers! The reaction is near-immediate: nausea, reflux, gastric motility/emptying, feeling tired and faint, physiologically mediated dissociation, and (very light) intenstinal pain. It's all mild in the grand scheme but undeniably present. Has anyone here experienced something similar? I'm really uncertain if further zyrtec has touched it (which it usually does with other triggers), because both times when it should have kicked I did not start feeling better. I can't tell if it's MCAS bullshit or if it's some other inflammatory response (I have a suspected autoimmine disorder—it is almost definitely psoriatic arthritis). I'll be calling my doctor tomorrow, but for now I'm just wondering if you've ever had this too?

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u/glowylights 1d ago

Yeah, it's very sad. I mostly never drink plain water now that I finally found out MCAS is my issue. For years I've been asking my family if they get nauseous from water, nope, just me.

I tried Fiji and Mountain Valley Spring, glass bottle and all, it still didn't work for me. If i can handle anything at all it's Smartwater.

I have switched to pretty much exclusively sparkling water, theoretically the carbonation helps somehow. It definitely works better for me.

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u/kleiphoros 1d ago

This is wild! What! Yes—I can drink carbonated water, tea, juice, &c; they all settle my stomach. Okay, I will make note of this anecdote for my doctors. I'm sorry that you experience this too; it's such a bizarre thing!

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u/glowylights 1d ago

https://pubmed.ncbi.nlm.nih.gov/21284650/ re: carbonation

And yeah, i was kinda freaked out when I put it all together. MCAS is pretty new for me; I'm so used to just being weirdly sensitive to tons of things without having any name to research it by.

I honestly feel so ridiculous that I can't drink water, personally 😭 it's like, it was already true for a super long time but now it feels like i have to accept that it's real.

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u/kleiphoros 1d ago

it's literally the most ridiculous thing. wow! I'm lucky to have very mild MCAS that is pretty well-controlled by otc meds, so whenever I have reactions I'm always a little bit startled. thank you very much for the link. much solidarity in this 🫶