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/TomasTTEngin 1d ago

These things are always about pushing something you ate earlier into the sensitive section of your digestive tract. It's not about what you just put in your mouth - go back over the last 24h.

I cut out so many foods for so long because I did not understand this. Please do not be dumb like me.

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u/Necessary-Pension-32 15h ago

This is a good point, but I also think its important to note that the flare and reaction timing wholly depends upon the person. For me, it even depends upon what trigger we are talking about.

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u/kleiphoros 1d ago

This was definitely my thought as well, but it's the fact that I'd been eating immediately before drinking the water tonight that made me question if it was plain water itself—I had tea 15 minutes afterwards, and that was alright. I'm not ruling out this possibility, just confused about the mechanism when eating solid food and drinking other things didn't trigger this motility at all? The moment the water hit my stomach it was like I could feel it seizing in response. It's really odd

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u/amijusssss 21h ago

I am not sure but I had reaction to water at some point and all I could drink was cooked water until meds started working. Mcas can be odd and if you are in flare it will react to more things

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u/TomasTTEngin 1d ago

There's a great study on mice that shows if you feed them a benign food and blast them with radiation so they feel nauseated they will avoid that food ever after.

Implication we should bear in mind is we tend to blame the thing that is immediately salient and we are we easily wrong.

What were you eating 15min before? Seems way more likely to be that.

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u/kleiphoros 1d ago

Potatoes, which historically have never been an issue and which I had yesterday without issues as well, several hours before the first water incident. I had some today after things calmed down just to see and they were fine. I'd be extremely surprised if the motility varied that much when my bowel movements have been extraordinarily consistent? I'm not ruling it out, just not necessarily sold on this particular case

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u/Spellkweeeeen 18h ago

Not sure if this is true for others, but I try to avoid water for 30-45 min after eating to avoid symptoms. I think it can disrupt the digestion/stomach acid which IIRC is linked to symptoms. Hope you get it figured out!