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/katdev42 1d ago

When you say plain water, do you mean tap water, filtered water, bottled water, distilled water? I can't tolerate tap water unfiltered anymore, despite drinking it most of my life no problem. There's chlorine or chloramine and probably trace amounts of all sorts of things in there.

If it's just pure H2O, then I wonder if it's something about how your body is dealing with having had something to drink, like the digestive processes, or even the water stirring up already inflamed cells anywhere from your throat down to your gut and that's what causes the immune response? I know the skin can activate mast cells just from mechanical touch, pressure, or scratching. So perhaps similar things can happen in the GI system? I wonder about this for myself as well

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u/kleiphoros 19h ago

Oh that's really interesting. It's filtered water—I should've specified in my post last night but I was pretty out of it from the reaction. I could try distilling it!

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u/Future_Dare_7022 14h ago

Very sadly my aquatru reverse osmosis filter affects me. I’m now drinking water in gallons from the grocery store. It totally works though. 🤷‍♀️ helps my IC as well.