u/editedstress

How often do you get the debilitating kind where you absolutely cannot eat? I see people on here talking about “flaring daily,” but it’s hard to know what that means.

Does that mean you’re experiencing the minor symptoms of MCAS daily, like; runny/congested nose, headaches, flushing, itching, diarrhea, gas, etc.

Or, does that mean you’re experiencing the debilitating kind where you’re super nauseous, vomiting and/or can’t eat anything? And if so, how do you cope? Or how long until the inflammation goes down to where you can eat again?

I am completely unclear on what my triggers are because this type of flare has only ever happened to me twice before, but the trigger for both was very clear.

So when I’m feeling up to eating, I’m eating what I consider to be safer, mild and bland options. While I’m not getting reactions while I’m eating, or even hours after I’m eating.. I still just feel like it goes in waves of being super inflamed and hurting to going down to going up and idk how to get this to stop? It will be two weeks tomorrow, and while I am at least eating more this week than last, I’m still only getting like 900 calories, if that.

I’ve been posting too much these last two weeks, for obvious reason. New, confused, miserable.. this will be my last for hopefully a while!! I’m just trying to crowdsource information for my own edification.

I feel like I have my flare under control and I’m starting to come out of it… my severe ones are mostly GI related, but I of course like most, get those adrenaline surges (fake panic attacks, I call them) that usually result in more nausea, although it’s tolerable and short lived. How long after you feel you’ve gotten your episode or flare under control, do these stop? Quite literally the most unpleasant feeling ever 🥴 (taking hydroxyzine as needed).

Sorry for posting so much lately — newly diagnosed, first big flare/episode after diagnosis + with treatment.. just trying to understand it all (I do understand it’s different for everyone, but community helps).

I have an apt Wednesday with my GP because my apt with my GI isn’t for another week (yes my GI is who diagnosed me and is currently treating because he actually knows what this is and how to treat it). Asking for hydroxyzine and Montelukast, currently taking Pepcid and Zyrtec.

Curious what helps pull others out of an intense GI flare?

I was only just dx in January after my GI doctor ran the gamut on me. He was determined to figure out what was going on, and he did. After my follow up EGD in January, he was able to see the mast cell activity on my biopsies, even though I wasn’t in an active GI flare. (I’ve been unknowingly dealing with MCAS symptoms since 2017)

As I sit in this flare, I am just now putting all of my other seemingly random symptoms together, realizing my body was actually warning me the entire time before these insane GI flares occurred. I have only been taking a Zyrtec, which normally fully takes away my GI symptoms. But I honestly forgot about the dx because I’ve felt fine since being on Zyrtec, I wasn’t treating my body correctly. (Coffee on an empty stomach every day, I eat lots of vinegar and spice.. so many fermented foods lol)

What do you do to intervene in a flare so it doesn’t progress? What treatment is working for you? (Not looking for medical advice.. I have a great care team, but always looking for other options to present to my doctors that they/I might not already be aware of).

This is the first flare I actually know what’s going on, so I started Pepcid 2x a day and increased my Zyrtec to twice a day as well. It’s absolutely helping, but I’m still kinda having waves of improvement and then the physical anxiety comes out of no where for no reason, bringing the symptoms back temporarily.

I’d just like to know if anyone has this pretty well managed to where they’re not bed ridden when GI flare hits? I know this is the place where we all come to complain, but I know there has to be some positivity out there somewhere.

🤍🤍🤍

EDIT: length