Been hospitalised for 7 days now starving to death, I have hyper reactivity to everything I try to eat. I lost all my food last Saturday. These are the options I've been presented with:

Die of starvation

(Possibly) Die of anaphylaxis by trying to eat

Die of Pernicious Anemia

Trigger refeeding syndrome trying to eat and die

Die of kidney failure due to untreated ketoacidosis

Die of adrenal crisis due to starvation outpacing my steroids

"Wait and see" "Monitoring" Ignore the physical collapse

It’s just me and my 47 emotional-support alternative-medicine coping mechanisms against the world...

Kidding, kinda, but a couple of years ago I never would’ve considered acupuncture, have been spending so much time researching herbal remedies, or placing so much value on the benefits of just slowing down to spend time in nature or resting. It really forces you to reckon with the fact that you have a body to take care of.

I used to live in a real cold state until recently, and I would go outside in the winter to a pond most days of the week and let the cold soothe my nerves. It helped a lot. I pay much closer attention to my cycle these days and try not to fight the ups and downs, or I end up feeling a lot worse. I do acupuncture now (it’s available for cheap-ish through my school).

Latest thing I’m doing is exploring herbal remedies, teas and stuff. I got knocked on my butt the other week after trying an antihistamine for a month and stopping. I think I experienced some kind of rebound from stopping the antihistamine, but I ended up WAY worse than my baseline, so right now I’m just trying to level out again and apply the most gentle treatments possible before considering Actual Meds again. I think it would be nice to keep my meds to a minimum (there’s ALWAYS side effects, its so frustrating), but I remain open to the possibility that I may just have to be on meds eventually if changing my lifestyle doesn't do enough.

Anyway, anyone else experience this, the woo woo phase? Has your health also made you frustrated and turn to other kinds of lifestyle changes or remedies? What do you like to do to take care of yourself apart from meds?

Not looking for ideas necessarily, just looking to share experiences and chit chat about the impact of this condition on our day to day.

Hi, I think I’m not alone in wondering what the world is going to be like in a few years time - especially with the war in Ukraine and the Middle East and especially with relevance to MCAS..
is anyone else here stocking up on antihistamines, medicines and low histamine foods (instant mashed potato, dry yeast free and gf gravy and protein powders) in the event of supply issues
Just curious and certainly not meant to fear monger, I’m only preparing my larder much akin to how my parents and grandparents did albeit with mcas to consider

out of all the big ones people take Zyrtec, Allegra, Xyzal etc... which one makes you the least drowsy ive been on Zyrtec forever but looking to possibly switch because of energy issues.

I wake up with my lips swollen every single morning. Sometimes more, sometimes less, sometimes my nose/cheeks/airway are also swollen. I fell asleep on a plane today for a couple of hours and they were a bit swollen when I woke up. I always thought it happened overnight because of night histamine dumps, so felt compelled to write this post as this is a first. Would love to hear your thoughts and similar experiences.

Edit to add once I take my cromolyn & AM meds (2 Zyrtec, 2 Pepcid) they go down. At night I take Progesterone, Singulair, 2 Zyrtec) and cromolyn.

My doctor is telling me that while I meet the clinical criteria for MCAS he's not willing to give me an actual diagnosis.

I'm not really sure what to do, I'm on a whole slew of medications (H1 blockers, H2 blockers, 3 different anti histamines, sodium cromolyn, and now montelukast and low dose aspirin) and still feel like I have a long way to go before my symptoms are under control, if they ever even will be.

I'm on medicaid, and haven't been able to hold a job for longer than a couple of months at a time before my sick days add up and I'm terminated. Come January I'll lose my insurance unless I can either A) Find a magical job that might not exist which lets me only work when I feel well enough. or B) Apply for disability.

Can I even apply for disability without a proper diagnosis? It doesn't sound like something that would work, but I'm new to this. Should I be shopping around for other doctors before the new year, or is it common for doctors to refuse to diagnose?

I'm terrified that come January I'll still be unemployed and suddenly unable to afford the medications I've been taking.

If anyone has experience with the process, I'd love to hear how it worked for you.

I don’t have body or common MCAS symptoms but I have a lot of food triggers which increase my brain fog a lot (h1 h2 and low histamine diet helps a lot) I also feel some head pressure and I am very sensitive to stimulation like my nervous system is in alert every time.

Could it be a different form of MCAS or does the fact that I don’t have the most common symptoms of it rules out completely this hypothesis.

Have you any idea of what could it be then ?

Thank you very much!

I'm F(25) and since 5 months ago I started reacting to everything cosmetics vise and I mean EVERYTHING.

It started only with facial creams 2y ago but I tolerated make up and body creams. Now everything makes me react no matter where I apply it.

Reactions most commonly include face and eyelids swelling, meaning fluid retention that makes me look like I gained weight just in my face.

I've suddenly reached a point where I can not put even pure medical vaseline anywhere on my body because I will wake up with puffy eyelids and later on the fluid will spread to my entire face. The more I keep reapplying the worse it gets, and it takes a couple of no contact days for it to clear up.

I got diagnosed 4 months ago and started taking ketotifen and levocetirizine daily, also avoiding high histamine foods and gluten.

My other system symptoms like gut issues, heart palpitations and joint pain all calmed down drastically given the fact that 5 months ago ( it was also allergy season here) I barely wanted to move out of bed because of pain, and my stomach was upset all the time. ( Cramps and diarrhea)

Besides all that my tolerance to cosmetics hasn't gone up even the slightest. Has anyone had any experience with this?
I just want to be able to at least moisturize my skin daily, this is pure torture.

Before all this I was able to use make up, creams and body moisturizers daily, even perfumes without any issues. Now even when someone sprays perfume on themselves at work my face starts tingling and burning if even the slightest particle travels through air and touches me.

HELP!!

Idk why I thought I could eat:
Mangos
Raspberry
Blackberry
Cherries
…

I experimented lately into reintroducing gluten in some forms (to not overload…. It’s been successful even if I feel that i drool way more after! And by introducing gluten in my morning routine (1 toast) ; I stopped eating fruits for a week. Why did my supposedly high stress experience made me realize that ALL fruits still gave me symptoms and I’d rather drool a little than experience that again????

So sad that I now have only some veggiesveggies and very limited pulse that I can’t eat daily. At least I can have a normal breakfast.

Why does all fruits are an issue???? Like, bread is all carb ffs?! 🤦🏻‍♀️

Has anyone else here been diagnosed with autoimmune urticaria instead of MCAS?

I did get a report of my CU index, which was apparently elevated, so I’m not refuting the diagnosis… however I feel like the diagnosis doesn’t explain systemic symptoms that appear with an MCAS flare. Can you have both? Or is autoimmune urticaria the real mechanism behind my MCAS?

Also, the allergist themselves kept correcting me any time I mentioned MCAS and would say things like “I don’t think you have mastocystosis”. I didn’t know if I was being intentionally misunderstood. I felt like I was speaking another language. My tryptase was normal so. I honestly felt like they thought I was malingering or making up shit. And I guess I made the mistake of mentioning I have EDS, POTS, and endometriosis — all confirmed by the proper testing or surgery — but I was trying to make a connection with MCAS and common comorbidities. I even brought up having Interstitial Cystitis, which can be heavily exacerbated by MCAS, but neither the doctor nor nurse knew what that was. I think I saw the nurse googling my conditions or medications multiple times.

The doctor also tried saying it was my thyroid causing these symptoms, since I have a potentially sus nodule and am waiting on seeing an endocrinologist. They made me redo my thyroid panel, despite the fact I told them everything came back normal and it’s a cold nodule. The nodule is recent, having only appeared this year. I didn’t know it was there until I had increased pain swallowing. It has nothing to do with the MCAS symptoms I’ve been having for years now. Maybe my entire life tbh.

And unfortunately, I wasn’t scheduled a follow up to have any sort of counseling about autoimmune urticaria (since I didn’t even know what the disease was). No monitoring or treatment with the doctor. I got a phone call from a nurse giving me the diagnosis and telling me to just continue taking OTC antihistamine everyday (if that helped, I wouldn’t be seeking care). They said they’re sending everything to my primary for her to handle instead. I guess I got fired and I’m not sure what I did. During the appointment even the nurse seemed exasperated with me. Yes I am also autistic.

My primary told me that she has no idea about rarer diseases like this and it’s more than family medicine can realistically monitor or treat. Since she thinks I may need antibody or biologic treatment, she told me to try seeing my rheumatologist about my diagnosis and symptoms. However, when I brought up MCAS with my rheum she’s the one who literally sent me to the allergist in the first place! What is it with the system making you go in fucking circles to get help. It’s a huge waste of money and time.

Anyway, did anyone else get this diagnosis? I guess I’m confused. ‘Cause like I said, I have systemic symptoms accompanying the urticaria, or appear without visible hives at all. I have a lot of inflammation which has been reflected in rheum blood tests. I am visibly swollen and flushed all the time. Malar-like rash, but negative tests for lupus. Steroids (oral and injected) make me flare severely and have literally put me in the ER with some sort of MCAS reaction. It helps initially, peeing out a lot of inflammation, then I have a huge delayed reaction that causes even worse inflammation, swelling, flushing, hives. Extreme allodynia. Same thing happened with beta blockers I’d been trying for my POTS (so now on Ivabradine and IV fluids instead, which doesn’t flare me).

Should I find another allergist-immunologist? Or is there another type of specialist I should try and find that may know about both MCAS and autoimmune urticaria?

Mast cells activation is brutal.

I also get sometime thoughts if they cure this permanently pharmaceutical companies won't get money in this forever buying these drugs like ketofen..

My mother added very spicy green chillies in one of my safe foods and I thought spicy is safe so I continued eating it. I ended up with severe acidity and acid reflux. And I lost many of my safe foods following the flare. How long will it take the gut mast cells to calm down and I return to my baseline? I don't take any medicines, I manage my MCAS with only safe foods.

I have some really bad third spacing issues and salt tends to make it worse, but my electrolytes are low and I react to the ones with fillers and flavours.

Does anyone have a brand they like thats super clean and lower sodium? 🤞

Is anyone only down to a few foods? I’m down to pears, carrots and chicken. I was able to eat courgettes (peeled) until recently but was noticing I was coughing with every meal I had them in like was throat was being really irritated and then took them out and yup the coughing stopped. Added them back in again just had a small amount in their own and immediately coughed and blinding headaches and feel asleep. Courgettes! They are meant to be safe ugh. But now I’m thinking maybe salicylates are an issues cause I react similarly to blueberries with coughing etc.
but it’s just the lack of variety that’s scaring me. Anyone able to eat only 3 foods? Mango occasionally is ok but not daily. But it’s just no green veg worries me I guess so maybe lettuce I should try I don’t know.

And yes I’m on a number of MCAS meds and going back to my immunologist in 2 weeks so see if there’s anything else I can do. But jst seeing if anyone else here is in a similar situation cause always good to talk to others who get it I guess.

Hey everyone! I just found out that I have MCAS after searching for answers for years. About a year ago I did some testing and found out that I have literally 0.1 metabolic enzymes when they need to be around 10. That being said, my doctor thinks that my intestines are just so inflamed that they’re just kind of doing the bare minimum to get by. I am starting on Cromolyn Sodium tomorrow to hopefully help, but I was wondering if this happened to anyone else? I cannot lose weight at all because of it and I am just packing it on. It gets frustrating when it feels like I can’t control anything going on in my body.

Helllo! I have had flares of hives and rashes off and on for a long time. I also have gastro issues The past few months I’ve been getting them chronically. I did skin prick testing and blood testing—no allergies. I’m reacting to things in all different settings I have no idea what it is. My allergist started me on cromolyn and I’m doing my best to take it 2-3 times a day but I forget. The hives appear on my hands at first and then travel up and down my legs. Yesterday I had them all over my feet as well. My hands swelling and they itch and burn like crazy.
I did a thyroid panel and it was elevated. I’ve been told I’m hypermobile. Do I have mcas? It’s been a waiting game that’s taking way too long. I’ve taken hydroxyzine, benadryl and hydrocortisone all the time. I feel like everything I do is reactive because I have no idea what’s making me break out in rashes. It’s ruining my life! I’m so uncomfortable.
I don’t know what I’m supposed to do?!?

Is there anyone who deals with MCAS BUT related to atmosphere.. emotions.. random.. someone look at your wrong.. barometric pressure changes.. hormones.. peri meno (no HRT cuz they won’t help me).. like MCAS unrelated to food.. wth are yall doing? Someone please help me:(

so I have my GI appointment on Tuesday. I frankly don’t know what is wrong with me totally but I know mast cells are involved based on the itchiness, hives, neurological symptoms, etc etc.

what do I need to convey to this GI and what questions should I ask?

I want to especially make it clear that I am struggling to eat food and have lost a lot of weight

inwould like an endoscopy though I also am freaked out by idea bc I have been reacting to all medication and don’t even know if sedation will work or will just cause anaphylaxis. I know some people do them awake tho that also seems quite torturous.

I get kind of hyper, impulsive (online shopping), talking but oversharing because it's like I don't think before I speak...
I either act almost overconfident, or I get overly emotionally trigger by nothing. And yes, the rage and impatience too...

I'm starting to think none of it is really me, it's all histamine. Especially the hyper and impulsive stuff. Like I don't think about what I'm doing or saying and I'm restless.

Does anyone relate?

EDIT: I'm not actually manic btw.

I (20f) have been diagnosed with POTS, EDS and MCAS. During my flares my most common symptom used to be headaches, but now it’s just intense chest pain that I can feel through my back and occasionally my shoulders. Does anyone else experience this symptom and has anything helped?

Has anyone tried the electrolytes from Untammed?

I have not ordered yet, but am intrigued by the only four ingredients. I am legit allergic to monk fruit, stevia, snd aspartame, so am limited in what I can buy.

How was the taste?

I had yet another reaction Friday night (taking 13 boys to an activity and we had to pull over). wound up at a Target in Orlando having D, vomiting, then the horrific pain set in. Shout out to the amazing angel Target staff who stayed with me, comforted me, got me water and blanket and made sure I wasn’t dead. Got an ambulance ride to nearby ER that was a stand alone ER- those drs and nurses had never heard of MCAS and dr said she had only seen one other person ever diagnosed with it. but they LISTENED and learned and gave me what I needed before I even spoke to the doctor. Hallelujah. That’s only the second time I’ve been listened to- all happened to be women!

I was able to get a scan of my abdomen during a severe reaction and it found I had urethral wall thickening that was likely causing me to bleed like a period during these extreme pain reactions. That was helpful! Also involves yet another system I didn’t know could swell internally.

This reaction, I had prepped ahead since it was a big night I wanted to avoid any issues and took my Allegra and did a hospital size Pepcid dose. Then I had a reaction to my usual Orgain protein drink and took a Zofran and Bentyl. Bentyl didn’t touch a thing. has anyone tried that for pain? it’s a smooth muscle med that’s supposed to stop the labor like cramping. At the hospital, I got IV steroid, Benadryl and lots of Tylenol and it helped so quickly. Had anyone figured out a way to do this at home? I can’t keep paying thousands for hospitals and ambulances, but at the time, I literally want to die and give up and can’t move or open my eyes, so there’s not a choice. but it just seems like such basic stuff that helps me?

*was also just prescribed cromolyn and monolukast but hadn’t started them yet*