r/MastCellDiseases

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.

Hi. I am 98% of the way to a indolent systemic mastocytosis diagnosis. Apparently I also have psoriasis. I am very dubious about the psoriasis diagnosis because it appeared shortly after I started having the ism flares and the plaques go darker red and itch more when the flares happen. The psoriasis was diagnosed by a dermatologist who knew I was being investigated for ism, but he didn't do a skin biopsy. Does anyone else here have both conditions or mastocytosis lesions that look like psoriasis?

Friday and Saturday I was in bed all day with a huge amount of Femer pain and hand stiffness also a drunk like feeling. I get non epileptic seizures and have felt on the verge all weekend. Today is more of the same, so dizzy when I stand, the pain in my legs is intense. But I know if I go to hospital I am going to sit in a waiting room for 10hrs just to be told there is nothing they can do and to wait until I get an apt with Rheumatology or Immunology. Thoughts? I think it was set off by Sprite Zero.

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

Hey Everyone,

I hope you are all having a wonderful day!

I wanted to bring attention to something that has worked for me with some information behind it, as I really want to help.

Growing up, I couldn't really smell things well, which eventually lead me to an ENT back in 2018-2019, where they found that I have a deviated septum but it was noted to be caused by inflammation.

They didn't say from where, but if I had to guess it would be from a combination of pets and regular allergens. I then started looking into things that would help, and I found Quercetin and Bromelain, of which I started taking very regularly.

My sense of smell came back, as long as I was consistent.
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Arguably more interesting:

About 5 months ago, I got a new dog, a shorthair PitMix named Pixie, who started off as rambunctious as possible, but has finally started to calm down.

I ended up reacting to her poorly, eyes started itching, anytime she'd accidentally scratched me, I would get welts. But I noticed when I made a consistent effort to help keep Bromelain/Quercetin in my system, I reacted less.

So I started taking Neural Scoops Daytime Allergy Support regularly, and the reactions have seemed to go down. They not only have the inflammation support, but they help with the HMNT Histamine pathway(s).

And it's a drinkable format, so it keeps it fun and I don't have to wait for capsules to dissolve.

Anyway, I hope the above helps anyone, I know its not 100% related of what true MCAS is but I know there has to be some crossover. Might be something worth looking into is all.

Thanks for listening and hope you have a wonderful day!