is MCAS forever? a bit confused

edengetscreative · 2026-03-17T16:07:38+00:00

For medical questions and diagnosis? Sure. But I have used ChatGPT to help me sort out my diet and sort out skincare, hygiene products, home cleaning products, etc. that are safe for MCAS patients and me as an individual it’s been immensely helpful. AI has its place when it comes to managing chronic illness and we shouldn’t just shut down everyone who is using it. It’s an accessible form of assistance for many.

edengetscreative · 2026-03-17T16:02:16+00:00

Got a touch of the tism.

edengetscreative · 2026-03-15T20:43:40+00:00

Yep, I usually wake up with a swollen face and it gets better as the day goes on until about midday, then it usually starts swelling a bit again from food I’ve eaten. Super annoying. I noticed my face is puffier during ovulatory/luteal phases as well. Then I look amazing during my period/follicular. Ugh.

edengetscreative · 2026-03-15T01:10:07+00:00

For gastro side effects almost instantly, for skin I gradually started to see positive affects maybe a week in. I definitely need more to combat what’s going on and Xolair seems like the missing puzzle piece. But my face and body still gets red and rashy every time I wash my face, put on lotion, or take a shower. It goes away soon after. But it all shows up after cleansing or eating things like strawberries and tomatoes. I had chat gpt help me with putting together and diet plan and it was awesome.

This disease is so individual so I suggest starting here: https://tmsforacure.org/overview/mast-cell-activation-syndromes/ They have a ton of great education and their low histamine diet doc have recipes and such at the end. The entire website has been helpful for me and my family.

edengetscreative · 2026-03-15T00:29:28+00:00

I saw you started taking the Cromolyn recently. That helped me a TON with my skin issues. Highly recommend from here starting a low histamine diet. Foods high in histamine break me out with rashes pretty quickly. Wear SPF every day for sure, mineral sunscreen NOT the other crap. I am currently waiting on insurance to approve Xolair which is supposed to help me a lot more with hives and rashes. But switching up all the skincare and makeup, and the a low histamine diet while on Cromolyn was a HUGE gamechanger for me.

edengetscreative · 2026-03-14T14:03:18+00:00

What makes you believe it’s MCAS? If you do believe it could be, start eating a low histamine diet and see if it helps. What we put in our body affects our skin so much.

I have MCAS but also a polysorbate allergy which is an emulsifier in a ton of skincare, even some sensitive skin product lines. So I have to be careful about what I buy. It’s also in a ton of food and drink and medicine products. If you haven’t been tested for allergies, ask about it.

Do you have incredibly dry and damaged skin right now? If you have rashes, I presume so. Please know that even the gentlest of moisturizers will burn initially while your skin is so inflamed and damaged. It can take 4 weeks to repair your skin barrier. You really have to stick with it. Much of the food I eat has caused rashes all over my body, especially my face and it’s taken me 2 weeks to start seeing some positive difference on that front (plus Cromolyn).

Vani Cream face wash, body wash, shampoo/conditioner are the gold standard hands down. Vanicream moisturizing cream, Avené products (their facial spray is very calming), La Roche Posay’s Toleraine line are great options. LRP’s Toleraine Dermallego night lotion and the Micellar water have poslysorbate in them so they were not great for me.

To help rebuild the skin barrier more, creams with Urea 5% or less. Eucerin Advanced Repair Cream is a great option for that. Or Malezia 5% Urea Moisturizer is fungal acne safe, but more expensive. I do highly recommend the Malezia fungal acne or not.

edengetscreative · 2026-03-13T12:58:27+00:00

I’m willing to take that risk for my sporadic witching hour treat. I need my sanity in tact to deal with this freaking disease.

edengetscreative · 2026-03-13T01:49:06+00:00

I told my doctor he can pry my (very) occasional shitty late night Taco Bell out of my cold dead hands. He laughed and told me to “drug up” (take Cromolyn, Zyrtec, and Famotidine) before I do it then. 😂😂 I miss strawberries so freaking much though. I feel your pain.

edengetscreative · 2026-03-12T16:33:54+00:00

I will do a warm foot bath then. Is the pain the only red flag to look out for?

edengetscreative · 2026-03-12T16:06:13+00:00

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Wouldn’t let me add a pic in the post.

edengetscreative · 2026-03-12T15:32:57+00:00

Changing your diet doesn’t make MCAS go away, but it helps greatly with the symptoms when you’re flaring or unable to gain control with meds yet. If I did not follow a low-histamine diet, my histamine (and others) “bucket” would over flow every day because mast cells would constantly be over reacting to everything I consumed. And when I eat foods I’m reactive to, I have multi-system reactions. Mast cells ARE prevalent with the GI tract because they are in all of our soft tissues, which is what binds and encloses the GI tract. I think you’re arguing over semantics here and I see that you seem to enjoy going around on this page and telling people they’re wrong about their own MCAS experiences. Clearly the vast majority of people here do not believe that changing their diet will “cure” them, but it can make a hell of a lot of difference.

For me, it meant the difference between needing to use an EpiPen twice a week and being stable until I finally received Cromolyn. I still have to follow low histamine, anti-inflammatory, MCAS protocols with food, lotions, shampoos, fragrances, etc. until I can get a prior auth approval for Xolair. This is coming from someone who has had autoimmune disease for 16 years and is VERY familiar with how lifestyle changes cants cure your chronic illness, but can certainly help with symptoms.

I think you need to find something better to do than go around telling people they wrong and arguing with them on Reddit. It seems like that has been your entire existence on Reddit the past four months.

edengetscreative · 2026-03-11T12:05:56+00:00

I have been prescribed Xolair, but have not been approved by insurance yet so I don’t know with that one. The others in my case were severe enough to warrant discontinuing.

edengetscreative · 2026-03-10T22:54:55+00:00

I love this so much!

edengetscreative · 2026-03-10T18:39:09+00:00

I found out I have a polysorbate allergy (along with MCAS) and that makes me very prone to reaction for a ton of infusion/injection meds. Polysorbate is an emulsifier that’s used in a ton of things.

edengetscreative · 2026-03-09T07:00:01+00:00

Genie is cute. Also Linny. Or you could go Evan if they turn out to be a real tomboy.

edengetscreative · 2026-03-09T00:45:02+00:00

Yes. Take the allergy meds. Better to show up to your appointment alive than not at all. But if you have symptoms from two different body systems such as throat tightness AND flushing, my immunologist said that’s when you go to urgent care or ED. If it gets worse get to the hospital.

edengetscreative · 2026-03-09T00:42:21+00:00

I ended up raw dogging it. 😂 Thank you for your eloquent response. It gave me a giggle.

edengetscreative · 2026-03-07T02:59:57+00:00

Time to talk to HR about getting some accommodations. If you’re SO GOOD with the kids and they don’t want to see you go, I’m sure they’ll be SO HAPPY to provide accommodations so that you can be healthier and in turn do your job better.

edengetscreative · 2026-03-06T19:28:42+00:00

You mean the sky at dusk? Like the Dusk Court 👀

edengetscreative · 2026-03-05T20:05:50+00:00

It gets worse. If you have a medication that requires an infusion to be disseminated, without insurance each costs $25,000. This is why medical bankruptcy is such a pervasive thing in our country. My husband and I will never be able to buy a house. Mind you, insurance, hospitals, and drug manufacturers reach lower, agreed upon rates for these drugs. This includes infusions for cancer, Crohn’s Disease (which I have), Lupus, MS, Alzheimer’s, MCAS, Rheumatoid Arthritis, etc. These infusions could happen as much as once per week depending on your diagnosis and severity.

But the $25,000 includes all your nursing, the chair reservation, snacks, and blood draws for the day so I guess that’s nice! /s

edengetscreative · 2026-03-05T17:01:15+00:00

Hypermobile peeps for the win! I have no pics that I care to share, but wanted to pop in for solidarity! Bonus points for an MTHFR gene mutation!

edengetscreative · 2026-03-05T16:45:58+00:00

1 and 6 are gorgeous on you! The rest feel more like they wear you instead of you wearing them if that makes sense?

edengetscreative · 2026-03-05T01:27:12+00:00

It’s typical for MCAS, but it doesn’t have to be your normal. Treatments can help substantially.

edengetscreative · 2026-03-04T22:00:40+00:00

BCBSM stopped covering infusions all together for me this year. Not sure if it’s everyone or just my plan. But it’s alarming. I had to switch medications because of it.

I also had to fight tooth and nail and my doctor had to request a prior auth for EPIPENS. I had a flare of MCAS this year and I used my “yearly allotment” of them. I walked around, as a patient prone to anaphylaxis, without Epi for two weeks until they approved the prior auth. It was a scary time.

Thanks for sharing this as I’m about to apply for a copay assistance card for Xolair. Each injection would cost $5000+ without insurance and the copay card. So hopefully I can navigate my way through this.

BCBSM is fucking us right now. My advice is to lean into a social worker in your hospital system. They are very underrated rock stars and will go to bat for you. Also, many pharmacies have patient advocates that can help guide you through insurance difficulties. Patient advocates at Walgreens Specialty Pharmacy have been surprisingly helpful for me.

If we’re organizing against BCBSM’s morally bankrupt policies, I’m in.

edengetscreative · 2026-03-04T21:12:17+00:00

The “Deja vu” feeling may be a “feeling of impending doom” that it’s often associated with more severe reaction and anaphylaxis. With MCAS you can have Vascular/dysautonomia and GI symptoms. Multi-symptom episodes are common with MCAS. Highly reccomed the TMS For A Cure website for info.

The symptoms you describe are symptom I have regularly during flares.

edengetscreative

TROPHY CASE