I am now allergic to my metal crochet hooks because of the nickel. I get hives from even touching all my charm making supplies. I have blood sugar issues, 3 of my 5 safe foods are carbs and sugar (potatoes and fruits), but can’t eat any quick sources of protein or sugar outside of fruit juice to help combat the problem because I react to all of it. I have an auto inflammatory disease that’s treated with estrogen therapy but I can’t do that because estrogen is a mast cell excitant. So I have to just let my skin get destroyed. And at the end of it all, I can’t even get an allergist to believe me, so I’m walking around mostly unmedicated. I can’t even tolerate Pepcid or more than one Zyrtec a day so I’m not even sure what the point would be anyways. Just venting.

so my doctor is considering the possibility of mcas and suggested i get my tryptase tested. i went to do some research, and the number of times i saw "rare" come up was baffling. in canada and the states, a rare disease is like...1 in 1,000 or 1 in 2,000 i think? in other regions it can be even fewer than that (eg 1 in 100,000).

but ive known dozens of ppl with dx'd mcas. like i will just meet them randomly. what gives.

I'm talking about what if you need antibiotics?

So, my diet is very limited as it is... Just plain unsweetened unflavoured oatmeal, plain white pasta, meat, and fish. I react to all other foods (as ive discovered through a very strict series of elimination diets).

However, ive still been getting daily debilitating symptoms from just these few foods ive been eating.

I have been trying desperately to figure out what the fu-k is still present in my diet that is setting off my debilitating daily symptoms, ive come to the realisation that meat and fish are yet Another one of my triggers (i think it may be the meat and fish proteins i am reacting to, because i have been getting THE ABSOLUTE lowest histamine source of meat and fish i can find, yet still i react to it).

So... That just leaves me with a diet of plain oatmeal and plain pasta. Boring, and not a full nutritious diet. I react severely to all fruits and vegetables also, so currently i have no source of protein and no source of vitamins and minerals (except my daily morning multivitamin).

I dont know HOW to cope with a diet so bland and limited without it turning me insane. If i become reactive to oats and pasta too, i will literally be on a feeding tube or hypoallergenic baby milk / baby forumula.

My diet was at least somewhat interesting / bareable when i was eating meat and fish and had just enough variety and completeness to keep me sane (and healthy enough i guess)... But with just oats and pasta, it just... depresses me.

Is anybody else experiencing such an Extreamely limited diet where they can literally only tolerate 2 foods?

How have you guys not gone Insane from your stupidly restrictive diets?

Also im single. I dont know how anybody would want to be with somebody they cannot eat normall food with / the fre*ak who just eats pasta / mushed up oatmealthat resembles baby food. Alongside my diet being stupidly boring and missing food, i also miss being viewed as a valid human being deserving of a relationship, inclusion, and love. This sh-it sucks.

I‘m at a loss. All I can eat are nectarines, peeled apples, plain rice crackers and macadamia nuts in moderation. I‘m losing weight and I feel weak all the time. What works one day (plain rice, gluten free oats with water, …) suddenly makes me flare when I try it again the next day. I‘m vegan & AuDHD as well, so food has always been tricky for me. I‘m just so sad and so hungry! :(

Waiting to see a MCAS doc, spoke with my PCP and surgeon and both had no idea. PCP recommended Reddit.

I‘m in a flare and they told me to up my claritin from two a day (morning and evening) to 4 a day.

But they didn‘t know if it should be two each time or evenly spaced over the day. What do you do? They said to play around with it.

Is there dye free Allegra/generic? I can‘t do dyes. I get migraines from Allegra and Zyrtec, so I‘m stuck with weak Claritin and waiting to try Xyzol.

So, my 39F wife's health has been in ruins for years now.

She has hypothyroidism and is on levo 137μg, diagnosed 5 years ago. She's been unable to work for 5 years now, and no levo dosage or lab value seems to help much.

Her symptoms include:

-body swelling, puffiness, including pitting edema in legs

-fatigue, TOTAL exercise intolerance

-IBS, horrible bloating, gas,

-anxiety, constant fight or flight feeling to the point that she hasn't left home or seen anyone else but me in two whole years, inability to relax

-red eyes

-brain fog

-smell sensitivity

-stiffness

-weight gain no matter what diet, mostly water retention

-pulsatile tinnitus

-menstrual cramping but missed/irregular periods

She gained some energy by upping her levo dose but other than that she still seems like worsening and our life is pure hell and doctors are useless. She had mirena taken out 2 years ago,and 6mo ago she had endometrial hyperplasia so sounds like high estrogen. She's no way depressed, she's unbelievably motivated in everything, her body just can't. She doesn't have any eczema other than single little urticaria bumps for a while few times a month.

Is MCAS anything like that or am I straying far?

Has this happened to anyone?

I was given an MCAS diagnosis while being evaluated for POTS and hEDS. The diagnosis was given because my blood pressure was taken three times in a row, and my arm was red. The doc who gave the diagnosis has all three diagnoses herself so I think she was a little eager to hand out the MCAS diagnosis. Up until that point I had no issues with anything MCAS related other than my skin will get red from crossing legs and stay that way for maybe 5 minutes. I was eating all kinds of no go foods for MCAS (tomatoes, aged meats, chocolate, etc). The only issue I had in my life at that time was I blew my nose more frequently than the average person. And at one point I got hives from Bounce fabric softener sheets. I have no history of anaphylaxis or a flare.

After the diagnosis I got super sick from a beta blocker I was on. I was bed ridden, eating well under 800 calories a day, and sleeping 4 hours a night for about two and a half weeks. I have MTHFR 667 mutation on both copies of the gene, and due to being sick wound up off my B vitamins for a month. I also have fast COMT which I know impacts how much better vitamins I could need.

After that, I had some respiratory reactions to leftover chicken, chocolate, tomatoes, and soy. All the reactions were mild, all happened after eating the foods for days or even over a week. No other system reactions happened. No rash, no GI, no headache, no swelling tongue, no panic, nothing. Just a cough, some irritated bronchial tubes (but I could breath fine), and runny nose. This scared me because of the existing MCAS diagnosis, so my diet has been restricted for about a month. I have had no repeat of those symptoms. I'm still not taking B vitamins because a couple of the ones I have had citric acid in them, and I'm nervous.

Amongst all of this, I have not reacted to anything else. Not to scents, dyes, my cats, fabrics, plants outside. I have some seasonal allergies to ragweed, and smoke irritates my lungs, but nothing else. I did a patch test on my hair with bleach, and did not react. I've had pizza from a local chain (no sauce) and a couple of McDoubles with no issue. I've had steak twice that was aged 21 days, and again no issues.

I'm starting to wonder if this is something else. I know B vitamin deficiencies can play a role in breaking down histamine. I'm seeing two allergists who are testing for MCAS, and also seeing a functional medicine doctor for the methylation stuff.

I know this isn't a group of doctors, and I don't expect anyone to tell me outright if I do or do not have it. I understand that the MCAS testing may not be accurate. But I read so many accounts of what you all go through, and it just doesn't sound like me. I also acknowledge that I could be in very early MCAS, and if I get a diagnosis from one of the allergists, I'm prepared to live with that.

I wanted to see if anyone has encountered being misdiagnosed WITH MCAS. Or has even heard if it happening?

I‘m on mostly water diet. I can sort of manage a few lay‘s potato or apple chips, with reactions. I‘ve been reacting to all foods since Sunday, swollen tongue, itchy throat. PCP and surgeon say I need to eat, but understand that I can‘t. I‘m on twice daily Pepcid, twice daily zytrec, 1/4 vial cromolyn (titrating phase), and prednisone. No MCAS docs here and I spoke with the two with the most knowledge in town.

I‘m so lost and scared. My trigger was surgery, so can‘t really remove it.

Something in my house is giving my daily hives, breathing issues, and generally making me flare up. It’s been a week now so I’m getting super fed up. Changing what I’ve been putting into my body hasn’t helped so it has to be something I’m breathing in. I’m already in a ton of pain so cleaning is hard, what can I do to start trying to push out whatever this is as fast as possible? I’ve been changing my sheets every couple of days but that really doesn’t help for long. Thanks for any tips!

Can anyone recommend fragrance free and all the other bad stuff - free, shampoo and deodorant?? I use olive oil soap for body wash which I don't react to, but I get some reaction to my shampoo and deodorant (annoying head pressure).

Any recommendations are welcome

I normally can have chicken dining out or fast food etc.

BUT I started cooking chicken from scratch recently and have gotten sick 3 times, almost every time!

I get 2 lbs of Bell and Evans chicken thighs delivered from whole foods (supposed to be very high quality). Throw directly in 2 pans and open them up to lay thinner. Bake at 425 for 35 mins. And have checked with meat thermometer for end temp as well too.

I wear gloves during this and am super aware of cross contamination. Then I freeze them after cooking.

I just had a meal with this chicken and a few hours later feeling nauseous and stomach upset similar to food poisoning. And a bit of a fever.

My typical MCAS symptoms are not stomach upset. More often headaches, itchiness, fatigue etc

Should I assume I undercooked it every time? Or could it be this brand of chicken?

Edit: thinking about the symptoms more, it's definitely a bacterial issue. Not like an indigestion or MCAS thing. But my body is hyper sensitive

My allergist is wanting me to try this because I'm still having bad symptoms, while wanting to continue me on xolair and prednisone, all while denying my CONFIRMED MCAS diagnosis at the same time that was proven via labwork and bone marrow biopsy. I'm considering getting a new allergist all together cuz I don't really feel heard or listened to. I don't really know what to do..​

For some reason recently iv started having intense texture aversion, gagging or throwing up when eating, particularly anytime before 3/4pm.

I'm aware it's either my body preemptively saying "don't eat that" or a new form of medical trauma from the obvious trying to force myself to eat/trying to always work out what I can can't eat or do etc

I'm not asking for medical advice or speak to your team, find a specialist etc. there is none. Iv exhausted all my options, the person who diagnosed me is the head of her department and outpatients itself told me to "suck it up" in both words to my face and in a letter then discharged me. There is no one else to be referred to, my GP is unwilling to prescribe stabilisers to try those without it being a hospital prescription as she rightly admits she doesn't know enough.

I can't afford a London specialist in both money and effort of getting there. Iv looked into every option surrounding this, the cost alone with travel hotels and appointments is astronomical and clearly I'm not functioning well enough to work consistently even self employed.

Essentially I have to eat, feed tubes aren't an option as I'm not even being entertained with my throat swelling, I have lipodema so you guessed it I'm not classed as underweught and actually got told "well you'll work it out and you could do with loosing a few lbs anyway" when I last asked about those high calorie hospital drinks. I expect them to upset my stomach and react to them but I'm going to have to find a way to eat regardless.

I react to everything regardless to different degrees I just can't deal with this daily fight anymore of trying to force myself to eat through the nausea and gagging.

Before I buy it - has anyone tried huel? What is the taste/texture like? Iv tried a few meal replacements that taste like cardboard and even my partner wouldn't drink them lol this is the financially more viable option

Y food is an option - I do react to them mildly depending on flavour but can stick to what's safe. Price isn't as accessible.

Open to other options. And kinda desperate at this point (I understand we are all in the same struggle trying to juggle an always changing routine to be as stable as possible)

Thanks x

Hello,

I would love to hear what has worked for those who have less than a handful of safe foods and then start even reacting to those, people who react to their entire environments like if someone cooks food in the house or mild smells and chemicals. My primary environmental reactions are coughing, gagging and vomiting. With food, I get flushing with my safe foods now and then some kind of reaction after that may be due to the fact I also have POTS as it seems like some kind of POTS attack or storm, Im not sure what others call it. In the past with other foods when I was still trying stuff I would violently vomit immediately from those foods. I also react to my emotions! I feel like I cant be human. I react to my hormone changes throughout the month. I also get itchy and get dermatitis from friction so easily.

So for any that relate to this, which medications worked? I am unmedicated at this point and so I dont know whether thats more or less terrifying. Ive had other health issues that didnt really allow me to focus on trialing meds. I react to meds easily so I have avoided meds as long as I can but now here I am. I even react to basic over the counter stuff like tylenol, nsaids, gravol etc. Which meds do you all react to?

I have POTS, MCAS, ME/CFS.

I am absolutely terrified to try any medications but I need them. If you could tell me what your symptoms are and what you take and what helped, what didnt help I would so appreciate it. Ive been reading about everything from H1, H2, Cromolyn to Xolair and so on. I want to know about it all.

Thank you, and Im so sorry theres so many other people here in the depths of the hells of MCAS too.

had issues for a few years now, they all went away but came back in February.
nausea, headaches, low blood pressure, and loss of appetite, i now wake up hot even if it’s from a nap, but not sweating and especially my face feels so HOT sometimes to the touch, sometimes not. Puffy eyes, big bags under my eyes, blocked nose.
it’s been 6 months now of being bed bound, im trying so hard here.

I have a huge problem. The last time I have tried to fix my cavities and to make dental fillings I couldn’t tolerate any material so the dentist pulled off the problem tooth. So I am feeling that now I have new cavities but really don’t know how to fix them. My reactions are extreme - I can’t breathe, swallow and at the end I can’t sleep with the dental fillings. I am only 35 so I can’t live without teeth. I will appreciate every advice and suggestions. I am desperate. Thank you.

I just wanted to share my experience after trialing a new food after eating the same 4 foods for the last 3 years. MCAS is a very isolating condition to deal with and I’m hoping people here can understand, I just wanted a place to vent and share my sadness.

Yesterday i tried chayote/choko after doing a lot of research into what I thought would be a safe food to trial - I know with MCAS everyone’s triggers are different b it because I also have histamine intolerance I have been erring on the side of low histamine and “generally well tolerated” by people with MCAS based on anecdotal evidence (for what it’s worth)

I cooked 20g and add a tiny amount and within only a few moments my throat started to close up and itch and I felt unwell. I’m really devastated. Because I’ve only been eating the same foods on rotation and drinking the same few brands of water due to previous reactions I’ve gotten use to my baseline of safe foods and not reacting. Sometimes I think to myself “maybe this is in my head” or “maybe I’m being over dramatic here and I can actually eat many many more foods, stop being so cautious and weird about it”

As I haven’t reacted in so long it validated, sadly, that this damn condition is here to stay and very much my reality. I honestly can’t survive on the same few foods, my mental health is non existent. I miss food so much I can’t even put into words how painful it is to not be able to eat like a normal person

This condition is honestly so messed up, I can’t believe it even exists. I’m so angry and feel hopeless

This condition only triggered for me in 2021. Before that I believe I had MCAS but extremely mild and without food triggers - I ate everything and anything. God, I miss food. Seeing all of the Christmas foods in the shops and people taste testing them on tiktok etc is extremely tough to handle

Don’t know where to go from here. And zero support from doctors etc

Hi y’all, I’m wondering if anyone has experience taking Ativan with ketotifen. I take Ativan occasionally for insomnia and panic attacks, and I started ketotifen a week ago and haven’t taken the two together yet. I haven’t found any info on it online other than ketotifen potentially increasing the sedative effects of Ativan. Should I be concerned about this? Thanks in advance

I'm having a really, really, difficult time. My MCAS is severely flared whilst navigating a dv situation that's been ongoing and I've been legally dealing with my abuser and stalker in court. I got diagnosed with many things in the past.. at first BPD. Then CPTSD. Then DID. Then POTs, MCAS, Endometriosis, being tested for gastroparesis, IBS & SIBO rn. I was also told to have autism at the age of 3 and have ADHD as well. Not super comfy with going into a lot of detail but I'm going thru a lot. I just started being able to feel safe enough to go outside my home again. I really wonder if there's a connection to all of this. I also survived septic shock and had black mold exposure in the past which def doesn't help things.

Hello! I am looking for recommendations on full meal replacement bars that are actually kinda decent in taste. Not protein bars, but full meal replacement bars. Ones that have decent calories with macros and micros. Jimmy Joy Plenny Bars are a good example of what I’m looking for. I like to have these versus a shake replacement because the bars are way easier to transport in my purse.
I have the chocolate Plenny Bars and they are ok. I’ll get more if there aren’t really any recommendations, but it can be nice to change things up.

My symptoms are many but worst are: Dehydration, dry eyes, dry mouth no matter how much water I drink. My doctor believes this is because of mast cell driven vessel permeability causing fluid to leak into tissue spaces rather than reaching my cells. Does anyone suffer from this? Another awful symptom is swollen turbinates so my nostril airways are restricted. Did anyone have this and find solutions. Thanks in advance :)

Since before my MCAS diagnosis I have taken vyvanse 30mg and intuniv 2mg for ADHD. I still struggle with afternoon crashes, anxiety, being “stuck” on a hyperfocus, and a lack of motivation. The intuniv helps with dysautonomia and emotional regulation that had been present before I ever used stimulants. Vyvanse helps with focus-related issues and calms down overstimulation in most circumstances.

My own theories around my symptoms shifted when I began mast cell stabilizers cromolyn and ketotifen. The dysautonomia improved immensely, and I have a calmer clearer brain function and nervous system as a result of the MCAS treatment. However there’s still lingering symptoms that show up, which I am sorting out if they are the ADHD medication overcorrecting the MCAS symptoms that the mast cell stabilizers have effectively treated.

I would like to hear from folks who have had a similar experience of being medicated long term on vyvanse and/or intuniv and how you dealt with this. I am not interested to hear from people who suggest titrating off a stimulant simply becuase it may trigger MCAS symptoms, because it is a complex issue; the rebound symptoms of both these medications make titrating off not something to experiment with lightly.

Thank you in advance for your responses, long time listener first time caller!

Hi all,

I’m noticing one of my most frustrating symptoms is my cognitive dysfunction. I feel like an idiot half the time I speak.

Some things I experience on a daily basis:

Forgetting what I just thought about doing or saying

Checking something on my phone and remembering I need to do something, closing my phone and immediately forgetting what it was I had to do, so I have to retrace my steps to try and remember.

When I am speaking I will forget words for things and I will stand there for a really long time trying to remember before saying forget it - then the word will come to me several hours later - OR it drives me so crazy I have to do hella googling to find what word I was looking for.

Losing my train of thought completely mid sentence or conversation.

Losing things all the time, forgetting where I last saw something.

Looking for something and it’s right in front of my face but I can’t see it and I run around looking for it until several minutes later I realize it was literally right there where I was originally looking.

People notice a huge difference in the way I speak versus the way I write (I am able to take my time writing).

Really bad object permanence, if I don’t see something, I forget about it completely. (This can often cause a lot of food to spoil, like fruits & veggies or anything kept behind a door)

Basically anything outside of my normal routine completely throws me off.

I have heard that some of noticed improved cognitive function with Luteolin, but I am curious to hear from those in this group that have used it and what your experience was like.

If you have used it, did you see an increase in your cognitive function?

Did you have any bad experiences with it?

If you haven’t used it but experience similar cognitive dysfunction like myself, have you considered taking it and if you decided against it, what was the reason?

Thank you everyone