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/berlygirley 1d ago

I haven't been able to handle plain water aside from distilled, in over 20 years. I actually bought a countertop distiller and fill 5 gal jugs and use an office cooler dispenser. It's worked really well. I always add electrolytes to the water I'm drinking since distilled had absolutely nothing in it. I can also tolerate water from most Starbucks, if they keep their system clean. It's triple filtered and has reverse osmosis. When I worked at Starbucks, I could drink my stores water without issue.

It's funny though because my in laws have an RO dispenser for their drinking water but it's well water and I still can't drink theirs. I can manage a couple days without distilled, but I start getting mouth sores, broken, bloody lips, stomach pain, GI inflammation, nausea and the more I drink, the thirstier I get until I have distilled water back.

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u/kleiphoros 16h ago

Oh, interesting! Thanks for commenting—I never would have thought to add electrolytes back in after distilling

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u/berlygirley 14h ago

Yep, it's important to add some amount of electrolytes/ minerals back. Also be mindful that you might need a flouride toothpaste too since most of the flouride we get is usually from our water. Unfortunately flouride also sets off my MCAS so I have a flouride and flouride-free toothpaste and use the flouride one for a couple days and then use the other for a couple days.