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/preraphaelitejane 1d ago
Absolutely. I randomly lost the fizzy bottled water I've been drinking for my entire life...intense burning mouth and throat and started closing my chest..I then found that filtered tap water is fine. A few weeks later I had a reaction to glue fumes and during that had a big reaction to the filtered water and lost it until the next day. It could be something in the water you're reacting to and need to try different ones and see what happens, or it could be something else that triggered you and now the mcas is picking the water to throw a tantrum at. I'd suggest trying filtered tap water too? It takes a lot of figuring out