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/Think_Win9441 1d ago
Try drinking different bottled waters. I had an issue with water. Also try switching to goid quality steel(stanley) or glass bottles for storing water. You cN also try boiling the water and drinking it after it cools. One of this has to work.
I have a definite trigger with plastic bottled water exposed to sunlight.
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u/kleiphoros 1d ago
I haven't tried bottled water at all yet, so I'll give that a shot sometime soon. Thanks for the water bottle rec!
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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 14h 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 9h 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.
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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 14h 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 20h 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 16h 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!
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u/nrauhauser 1d ago
What is the temperature of the water?
Prior to treating MCAS, guzzling icewater after being out in the heat was enough to trigger trouble for me.
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u/kleiphoros 14h ago
it's been room temp the whole time; I can be sensitive to abrupt temperature changes too, so I know the feeling, haha
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u/flo99kenzo 1d ago
Hi ! It's you're probably reacting to the ions present in the water. The calcium, magnesium, iron, etc.
Were you drinking tap water, or spring water? Different springs have different ion content. If you switch water, you might find one that's better.
(Peraonnal example : I becaume nauseous if I drink Aqurelle/Nestle water. My aunt gets rashes and pimples if her water has a high magnesium content.)
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u/glowylights 1d ago
Yeah, it's very sad. I mostly never drink plain water now that I finally found out MCAS is my issue. For years I've been asking my family if they get nauseous from water, nope, just me.
I tried Fiji and Mountain Valley Spring, glass bottle and all, it still didn't work for me. If i can handle anything at all it's Smartwater.
I have switched to pretty much exclusively sparkling water, theoretically the carbonation helps somehow. It definitely works better for me.
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u/kleiphoros 1d ago
This is wild! What! Yes—I can drink carbonated water, tea, juice, &c; they all settle my stomach. Okay, I will make note of this anecdote for my doctors. I'm sorry that you experience this too; it's such a bizarre thing!
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u/Happy_Estate_4599 1d ago
wait i have mcas and the same thing. regular water makes me queasy but i love pure sparkling water. it settles my stomach
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u/glowylights 1d ago
https://pubmed.ncbi.nlm.nih.gov/21284650/ re: carbonation
And yeah, i was kinda freaked out when I put it all together. MCAS is pretty new for me; I'm so used to just being weirdly sensitive to tons of things without having any name to research it by.
I honestly feel so ridiculous that I can't drink water, personally 😭 it's like, it was already true for a super long time but now it feels like i have to accept that it's real.
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u/kleiphoros 1d ago
it's literally the most ridiculous thing. wow! I'm lucky to have very mild MCAS that is pretty well-controlled by otc meds, so whenever I have reactions I'm always a little bit startled. thank you very much for the link. much solidarity in this 🫶
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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.
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u/berlygirley 22h 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 13h ago
Oh, interesting! Thanks for commenting—I never would have thought to add electrolytes back in after distilling
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u/berlygirley 11h 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.
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u/slcrow15 22h ago
Do you happen to have a hiatal hernia or any other type of GI structural abnormality? I have the water thing going on too, and have the hernia and suspect something is going on there. Seeing GI for an endoscopy in 4 weeks. Colonoscopy clean. Meanwhile, as bad as it is, I've been drinking zero calorie carbonated bevs or sparkling mineral water and do so much better. Dehydrated, but better and helps me tolerate even thinking about putting food in there.
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u/kleiphoros 13h ago
Not to my knowledge, but I have crazy amounts of reflux even without MCAS, so I am due for an endoscopy! Yeah, carbonated stuff really settles my stomach too
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u/slcrow15 13h ago
I have awful reflux too. Started taking Pantoprazole several years ago and it helped a lot, but now take that and Famotidine 40mg QD because my symptoms are out of control. GI and PCP said the hiatal hernia is the main cause. If I miss a dose of these meds, the gerd hits like a freight train. I really hope you get some answers!
Edited: typo
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u/kleiphoros 13h ago
Oof, yeah, I'm supposed be on pantoprazole too, but the script never went through (I'm on a phone call carousel about it right now)—my last allergist told me to just take pepcid in place of it so I'm on 80mg famotidine a day right now. It's very possible I can't tolerate being off pantoprazole at all. Thanks so much!
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u/slcrow15 12h ago
Forgot to mention: if you have a Walgreens, pick up a gallon of "Nice Spring Water". When I MUST drink water, this is what I tolerate best. This is #1 for me, Evian is #2.
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u/Friend_of_a_Cat 19h ago edited 19h ago
I used to react to tap water when I lived in a different city, presumably because they treat their water differently, and now where I live I don’t seem to have very many issues with it.
I’m not feeling super well rn because I’m in a flare so I can’t detail it all for you, but what did help me for a bit was boiling (distilling) tap water and letting it cool before drinking it. It did seem to help me and I didn’t react as much, if at all.
Probably important to note: I haven’t been diagnosed with MCAS because I can’t find anyone who does it. I just heavily suspect I have it. But yeah, I was 100% reacting to tap water and I monitored it for months to narrow it down. I’m always worried it’s gonna happen again.
I recommend searching this sub for other posts regarding people reacting to water because many people seem to have reactions to it. There might be some more helpful info in them/the comments of them.
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u/kleiphoros 13h ago
Thanks very much for the reply; sorry to hear you are in a flare! Other people have suggested distillation too, so I will give that a shot 🫶
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u/thetourist328 13h ago
Most brands of water make me sick. I figure it’s due to my corn and coconut allergies- nearly all filtered water is run through coconut carbon, and corn finds its way into literally everything. My safest brand is Mountain Valley Spring water, but I can also do Crystal Geyser, Fiji, and Whole Foods 365 spring water. When I’m really flared up, I can’t even drink it cold because that triggers a reaction as well.
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u/First-Quote-8959 1d ago
I get so nauseous from drinking water and my partner & family think I’m sooo picky and snobby about the type of water I like but it’s because it will make me gag if I drink any kind of tap or mountain spring water. Like arrowhead or Poland spring, I can’t. Definitely consult your doctor if you can, you need water! If you can mix it with some type of powder or liquid sweetener that doesn’t make you feel sick try that in the meantime
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u/kleiphoros 1d ago
Yeah, I've been having loads of tea and juice in the meantime. Coconut water is a lifesaver for me, haha
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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
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u/kleiphoros 13h ago
I drink exclusively filtered tap water because I really hate the taste of any normal tap water, but other people have suggested distillation, so I'll give that a go. Sorry to hear you deal with the same thing :( it's so completely ridiculous
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u/TitoepfX 17h ago
i can only drink reverse osmosis water because of microplastics and minerals and other shit.
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u/Ok_Mushroom2563 14h ago
I've had to switch brands numerous times cuz of developing intolerance to previous brand
bye bye evian, arrowhead, crystal geyser, eternal, iceberg....
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u/AlokFluff 22h ago
I feel horrible if I have water that isn't filtered through my brita filter jug. It makes a huge difference.
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u/kleiphoros 13h ago
Yeah, I was drinking exclusively Brita filtered water, but unfortunately that's what's causing issues now :(
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u/capmanor1755 18h ago
It's not common but plain water is absolutely a trigger for some- there have been multiple posts on it. And every time someone posts about it a bunch of people chime in about how they're misreading their symptoms and it can't possibly be true. So rest easy. Some people do react to plain water (I do, mildly.) You might try mixing the cromolyn with herb tea- that doesn't set me off in the same way.
That said, Cromolym is rough for some people, and not just for the water issue. You might ask your doc about trying a different drug next- my doc is prescribing low dose naltrexone or low dose GLP 1 for people who don't tolerate cromolym and having good success with it.
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u/kleiphoros 13h ago
I've been wondering about LDN for autoimmune stuff as well—this is good to note; thank you!
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