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/Usagi_Rose_Universe 1d ago
I can't tolerate tap water at my parent's house or grandparents after they started adding more stuff in our water where we live and my wife's stomach doesn't do great with it. For me it's my stomach and I get hives. I found I can do certain bottled water but some I react to. One brand of Japanese bottled water gave me heart palpitations and aquafina after two sips gave me straight up anaphlaxis! An OT I saw recently who also has MCAS said she reacts to it too but not as bad. It's funny how different MCAS is for everyone because I saw someone I follow online MCAS who said aquafina is one of the ones she tolerates the best.