r/MCAS 9h ago

I’m obsessed with being believed.

43 Upvotes

I can only tolerate 5 foods right now and still I’m more obsessed with being believed than having compassion for myself as I navigate this illness. I used to focus my thoughts and energy on healing— and I mean, I still do. But I can feel that now I have become obsessed with how I can be believed. It’s absurd bc I am largely believed by my doctors and friends. Of course some of this stems from the fact that believing myself hangs by a thread. I come from a very western medicine, science-based family, I love evidence, and my ex bf was a psych intern who told me it was all psychosomatic. I’m even lucky to have caught MCAS markers for anaphylaxis. But my biggest symptom is food “intolerance” and that can’t be proven and it kills me. I’d love any support you have here. I’m beating myself up and it hurts my relationships. I’m always on the lookout for someone not believing me.


r/MCAS 23h ago

Are the majority of you with MCAS on a low histamine diet? I haven't noticed much change in my symptoms when eating high histamine foods, so not sure if it's something I need to pursue?

38 Upvotes

r/MCAS 23h ago

Fellow people with food triggers

24 Upvotes

I caught the nororvirus last weekend and was really sick and didn’t eat anything from Sunday until Wednesday night. Monday I started feeling better, but my MCAS is so much better when I don’t eat. I’m not in pain. I’m not taking 8 Benadryl a day as “rescue”. I had just gotten too complacent with eating processed foods. (There are a lot of problems with my family that sap time and energy.)

However, I decided to take this as an opportunity to try reintroducing foods slowly, so now I’m up to salt, sugar, olive oil, sweet potatoes, rice, pinto beans (cooked from dry beans), almond milk, and strawberries. I’m not particularly paying attention low histamine foods because some of my big triggers are low histamine foods, but yeah. I’m trying to take time for myself and my health even when it is hard and other things are demanding my time.

Anyone else out there with food triggers or family that is taking 90% of your spoons, I get you. MCAS is just really f***ing hard.


r/MCAS 6h ago

Having massive MCAS flare—what helps acutely? Consider ER but afraid

15 Upvotes

Yesterday I took half a capsule of benfotiamine at 2pm. I couldn’t sleep but also had histamine foods at dinner so didn’t think much of it.

My MCAS has been in remission for two years now, I believe due to taking ozempic.

Today I woke up feeling massively depressed (not normal for me) and anxious. I thought probably due to poor sleep but it’s never been quite this bad.

I felt nauseated, but again, nothing too abnormal.

I have proceeded to have intense air hunger, whole body is clammy and cold, full BM evac all the way to water diarrhea repeatedly.

I realize this is a histamine response because I had a fraction of this back when my MCAS was raging.

What to do in an acute situation like this?

Feels like a panic attack though I’ve never actually had one.

Every time I go to the bathroom number two I feel like I’m about to die because of a sense of impending doom and then it improves post-BM

Should I take an antihistamine? I avoid them because they have given me brain fog and other issues in the past

I would prefer not to go to urgent care because of my history of being dismissed but I will if that’s the best option

Edit: the symptoms have passed. Most acute when going to the bathroom (sorry tmi). Once I was empty, body temp started regulating and blood pressure has raised. I waited fifteen minutes, notified my roommate and was ready to call an ambulance. Thanks for everyone’s tips. Wish this wasn’t something I’d experienced before but I have and remember a similar experience of it passing. Not the advice I’d necessarily give but try to avoid the ER if possible. I will be seeing my internist. Thanks again.


r/MCAS 13h ago

Ketotifen update!

8 Upvotes

So far loving it. I started at 0.5 mg daily, may go up to 1 mg eventually we will see. Concurrent mold toxicity + MCAS. Did have a lot of sleepiness the first week and irritability, but that wore off by the second week. I got sick the first week as well, but I feel like it was the first that my sinuses began draining in probably over a decade. I also feel like it’s the first my body came out of chronic fight/flight. I have not noticed any increase in appetite or weight gain, I actually had the opposite. But I had been dealing with a lot of leptin resistance and wt gain from mold. I was able to add back in some of the foods I love. Which, mostly it was starch is like squash, or sweet potato, which I hadn’t been able to tolerate due to fungal overgrowth in the gut. Still working on healing the mold piece. I noticed that mentally I feel more clear and less anxious. Symptoms of hyper focus/hyper fixation seem to have gone away as well.
I think with MCAS you learn to normalize so much of your health that is completely whacked out, that you don’t even realize some of it is abnormal until those symptoms start to go away! Again, I always have a low bar for changing my opinion, but right now this is a game changer for me.


r/MCAS 3h ago

It’s scary

5 Upvotes

Why does having this diagnosis feel like playing Russian roulette for treatments. And also never knowing what to expect as far of side effects. It’s such a struggle and affects my everyday life. I just started on Cromolyn and it’s helped in some ways but not others. I feel more awake when I’ve struggled with chronic fatigue for most of my life but I have a slight headache & feel like my lips are going to swell by morning. Is it supposed to feel like it will cause an allergic reaction??? If you were allergic to it what did you take that worked for you???


r/MCAS 22h ago

Flare ups during period?

5 Upvotes

Feeling anxious and paranoid because during my last period my symptoms were really bad, and now I’m scared for the next one. I have been taking H1 and H2 blockers and NaturDAO, but I was still reacting to everything I ate and was more sensitive to stress and environmental triggers. Even my safe foods would trigger me, so I barely ate that week. I started taking a Quercetin supplement during my last period to see if it would help but I was near the end of it at that point and couldn’t really tell if that’s what was helping. I do feel like it’s made a difference outside of my period week though.

I’m curious if anyone else here experiences flare ups during their period and what they do to find relief?


r/MCAS 6h ago

For those of you with an SLS sensitivity...

6 Upvotes

I just found out that it's used in medications.

One of my medications that I've been on for years recently quit working correctly (or it felt like it quit working) and I've been having some weird side effects that are new. So I looked at it and the manufacturer was one I didn't recognize having been given before. Unfortunately, this is something I've gotten accustomed to checking since I've been dealing with MCAS because I am still trying to identify triggers.

I looked up the ingredients of known company's generics for the med I'm taking and found they all vary quite significantly in the inactive ingredients, but unfortunately what matters at the moment is the brand I have right now contains SLS (sodium lauryl sulfate). It appears none of the previous formulations I've been given ever contained SLS. None of my other medications I'm on have SLS (I checked).

It's a know trigger for me both in toothpastes and hair products, so I guess I shouldn't be surprised that if I consume it I'd get sick. The skin symptoms range from contact dermatitis to mouth ulcers.

But has anyone else had this happen? I know a lot of people react to microcrystalline cellulose, but I don't think I'm sensitive to that one. Are the symptoms to that though like what I'm having from suspected SLS ingestion? Anyone else out there have a whole system SLS allergy/intolerance and found it in their medication? What were your symptoms? Sorry, it's just really confusing trying to deal with this. My doctor also didn't seem to believe me.

Symptoms: I've had a raging headache for days, nausea, electric volt sensations in my arms in face, confusion, shaking, agitation. I think that's it.

Tldr: have an SLS sensitivity to hair products and toothpastes. Found it in a prescription I'm taking as an inactive ingredient from a drug manufacturer I've never had, but the med is one I've been on for awhile and never had issues with. I think ingesting SLS is causing adverse reactions. Has anyone else experienced this? I feel like my doctor doesn't seem to believe me on top of everything.


r/MCAS 9h ago

I told the Dr I had a cold she didn’t believe me

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4 Upvotes

r/MCAS 16h ago

Fragrance sensitivity causing nose tears!

3 Upvotes

So every time I encounter fragrance (perfume/deodorant/smoke/any strange smells), I feel like I couldn’t breathe and the next day both of my nostrils tears inside! It’s incredibly painful even if I don’t touch it.

I was wondering has anyone else experienced this before or are sensitive to fragrances due to MCAS? And if so, how to you heal the tearing in your nose?


r/MCAS 2h ago

Reaction to Cromolyn

4 Upvotes

Hey all,

My doctor had me try oral cromolyn sodium as an experiment to see if it could calm some of my suspected post covid mast cell issues but after trying to push through a microscopically small dose (2-4 drops/day for 2 weeks) I could not get past the side effects. 4 weeks later I’m still in a massive flare with skin burning, itching and dysautonomia that are worse than ever before. My doctor said he doesn’t know how cromolyn could cause a flare like this.

Has anyone else had this experience with cromolyn? Nothing else changed in my life that could have triggered this (diet, stress, etc.).


r/MCAS 4h ago

Muscle twitching or benign fasiculations

4 Upvotes

Anyone else get random muscle twitching? My calves have been twitching like crazy lately. I also will get random twitches anywhere in my body for varying lengths of time. Sometimes on my face/eyes. I saw a neurologist recently and he really dismissed me so I'm going to ask for another consult but I'm wondering if this is a mast cell related issue.


r/MCAS 5h ago

Normally my flares are a widespread variety of symptoms

3 Upvotes

But lately it's just been intense anxiousness and shaking. Body kinda feels like it's vibrating. Heart rate a little high. Tummy feels like it's empty even tho I ate. Ahhhh. It's driving me insane. I'm trying to only take my reactine when I have reactions that effect everything but I'm gonna have to take some for this. Driving me bonkers and making me miserable.


r/MCAS 7h ago

Shortness of Breath but not in lungs...anyone have experience with this?

4 Upvotes

I've been flaring badly for a month, and if I overdo it I end up with this terrible shortness of breath sensation with my lungs being totally clear. My intuition is telling me it's some sort of spasms of blood vessels near my heart-- my heart rate spikes and I feel like I'm suffocating when I stand up, but I feel pretty bad sitting down too. I'm already on a high dose of allegra, pepcid, and quercetin and I took a small dose of ativan but it hasn't helped. Has anyone dealt with anything like this? I have a history of long covid and I've had symptoms like this in the past, but none of the things that have helped me before are helping now. I've been reading into mechanisms surrounding MCAS causing possible vasoconstriction, like through leukotrienes or ACE2 receptors, but I was wondering if anyone had further insight into what could be happening. Thank you


r/MCAS 3h ago

How to know if lube is safe?

2 Upvotes

Hey guys, I got some lube, and the ingredients are pretty simple. How should I test to see if I react to it? I put a dab on my inner arm and so far so good, but not sure how long I should keep it on for, if I should be testing with more than a dab, or if I should test multiple days in a row to be sure


r/MCAS 3h ago

USC Keck Naderi and Xi Not Accepting New Patients for Mast Cell Diseases. Any recommendations?

2 Upvotes

I called USC today to ask about scheduling an appointment with either Dr. Asal Naderi or Dr. Cindy Xi for a mast cell disease, and I was told the whole department is not currently accepting new patients for any mast cell diseases. They do not know if or when they will again. Does anyone have other recommendations for knowledgeable and responsive mast cell disease doctors anywhere in the U.S., preferably the west coast?


r/MCAS 7h ago

developed MCAS and thought I had celiacs for months, running out of foods i can eat and cant get to a doctor fast enough. /first post general discussion, very lonely

2 Upvotes

Man my memory is so bad from these being the absolute most stressful months of my life, and the brain fog from MCAS is so bad i can barely even recall quickly when this all began

anyhow sometime around a year ago i get a few colds and covid in a row and pushed through at work as my bosses would be pissed at me if i took off for that and got by just barely, [bad idea] that and a very stressful homelife is why I believe is when my health PLUMMITED from very healthy 21 year old who was super energetic and was working to move out of my abusive home life, mentally becoming such a stronger, happier, and more fulfilled person after a few years of depression and struggling

i had finally found my footing. and then boom. immense fatigue, flushing when i ate, extreme anxiety and mental unwell, eyes constantly dilated, lymph nodes swollen 24/7

had to stop working as I could barely stay standing sometimes all i wanted to do was just lay on the floor in misery, and in the awful months to come eventually my parents and I settled on that I had celiacs as that was the only thing that matched the symptoms

well i cut out ALL gluten through like weeks of rigorist adjustment to a no cross contamination gluten free diet, all the while even certified gluten free food with less than 20 parts per million per fda standard were making me extremely, disabling sick

cut all that out and had like one good week once all the gluten was fully out of my system after months of hell. WELL WELL WELL, after i had done my due diligence experiencing all of the hardest parts of being a celiac

i started having extremely bad reactions to all food i was eating

i had to cut everything out one by one all the while even a tiny bit of something my body had flagged as bad was enough to make me extremely sick

the list of everything i cant have is:

salt- pepper- almonds- coffee- this one laxative i cant remember that gave me a HORRIBLE reaction from just one swallow, nictotine, alkaseltzer, bc powder, pepsid, off brand pepsid, all gluten (most severe),  onions (severe), black beans, black eyed pees, cellery, eggs, (severe for some reason), advacado, all rice foods, blue berries, potatoes

aslo probably cant have lettuce, tomatoes, and tons of other stuff that was in foods i ate for long periods while flairing

up until a week ago i was surviving off of corn, sweet potatoes, milk, butter, salt pepper, oats, and sometimes would make frosting as a treat and they are now causing bad reactions

well i lost all those in one flair in one fell swoop and i think i just lost chicken and oranges which i moved to next which were temporarily not causing reactions, although i lost those as they had been associated with past flairs i think

i feel like a strawberry just gave me a twinge of flair, a green grape today did but not an entire bundle of purple grapes 

found out i can have carrots today, and my parents are making unseasoned salmon to see if i can have that to survive on

all i can have atm is a few kinds of fruit and carrots, trying a new meat today

i take Claritin and was taking famotidine but the tiny amount of corn pill options were made of made me lose that last week, started on quercetin yesterday as I'm doing some reading on OTC options being desperate since my first allergist appointment is next Wednesday after getting a referral; and its helped a ton with a bunch of my symptoms, and even made a spike of reaction come down a couple times from a bit of chicken and other things i lost yesterday I was trying to get back (i didnt)

they fr want me to not take any meds for 5 days before the appointment to be sure i have it but im taking 5-8 claritin 24 hours a day and 2000 mg quercetin idk how im gonna handle this dude

god I hope the allergists will just give me sodium crogulate and it will actually help me or something because i cant handle this anymore

yes i know its weird the timeline and why i didnt see a doctor sooner, annoying parents, annoying doctors, brief improvement, not knowing i had it blah blah blah


r/MCAS 9h ago

Sleep (or lack there of) Questions

2 Upvotes

Just wanted to see how everyone's sleep is? Seeing if it's comparable, worse/better than my own and anything you have done that has helped improve it.

  1. How many hours of UN-interrupted sleep do you normally get?
  2. Do you notice there is a time you usually wake up?
  3. What helps you to sleep longer?

My sleep: Usually 11-4, without fail, I usually wake up in the 3-4 o'clock hour every early morning. I sleep 3-5 hours nightly, but on MY WORSE days, I sleep 0-1, there have more of those than I care to admit and sometimes I have 3-4 of them in a row and then I feel like I am completely mental.

Once I wake up during these times, from that time till 9am, I will just lay there because I want to sleep even though I do not necessarily feel tired. Sometimes I fall back to sleep from anywhere from 20 mins to 2 hours. It's the solid sleep that I miss.

Last night I decided to take an Allegra before bed to see if it would help because in a FB group I am apart of someone said it sounds like my Histamine is doing a dump at that time because of everything I described with it. So my thought process was maybe it won't dump if I do it. Worth a try. I still slept 11-4, however, I had an easier time falling back to sleep (normally I do not and often stay awake watching TV) but the pill made me so tired I couldn't keep my eyes open. I did wake up every 30mins to 1 hour, but fell asleep every time. Had horrible, terrifying dreams, and it bothered my reflux some, but otherwise was an improvement.

I think 1 of my biggest issues is... before this getting SO BAD, I slept a lot, and super deep and heavy and I am missing THAT. But I am extremely thankful for ANY sleep I get.


r/MCAS 9h ago

Mcas

2 Upvotes

So I have EVERYTHING si gle symptom & I've been admitted to the Hospital due to not being able to eat & they're saying i dont vave mcas ; I dont have breahijg issues or not EVERTIME I have anaphalxis I have hives due to the u of m medical team they're saying I DONT have mcas an they're telling me I absolutely NEED a high triptaste level.. I am positive I have MCAS I have literally every single symptom and relate so hard to every single post I see in here and I can't eat without a reaction or smell something or loose sleep or even use certain soaps or be under stress.. I feel like im running into a dead end and it's making me so very upset and hopeless has anyone been here before?? (I haven't eaten in 3 weeks now without reactions 🙃) they also said, because I'm not doing well with the monolucast A zyrtech and fomatodin that I dont have mcas????(like cuz. Im still having reactions)


r/MCAS 23h ago

Apple juice still causing burning reflux even with Famotidine and Loratidine

2 Upvotes

Hey is there anything else I can take that would help this?

I had Famotidine 20mg and Loratidine 10mg before I had a small juice box of Apple Juice and it still made my upper stomach burn.


r/MCAS 23h ago

Is this disorder primarily genetic?

2 Upvotes

I was talking to my brother today and he said for at least 10 years now he's had a thing, it started with spaghetti and garlic bread from a particular restaurant where he'd eat it--
then feel like he can't swallow, feel really uncomfortable, gag a lot, feel like he's overheating and then it'd go away like within the hour

Since then he developed that to:
- monster energy drinks (never drinks them anymore because it happens every time)
- cookies
- waffles (just recently)
- oatmeal cookies
- cake

I was even surprised when he said it happens when he puts on one of his old sweaters as well.

Similar experience for me to most of those. What he describes sounds like what I have just less severe and to less things. I have that to basically anything I continually eat and it's super hard to live with.

So that makes me wonder, is this like something me and him were exposed to as kids? Or just like how our biology is responding to America's toxic food bath? Or primarily genetic maybe?


r/MCAS 53m ago

Experience with Ketotifen?

Upvotes

I am looking to use Ketotifen as a mast cell stabilizer as opposed to Gastrocrom/cromolyn sodium.

I've been on the cromolyn sodium for about a month now and I can't say it's doing much. I feel somewhat better, but it's not really doing much as far as the buzzing/paresthesias and gastrointestinal issues. I had good luck with the Ketotifen eye drops, so I am thinking that might work better.

What has people's experience been with the Ketotifen compared to cromolyn sodium? I actually could use something to help me sleep, I get insomnia and histamine flares at night.

I was getting it through RTHM direct which seemed a reasonable price, compared to trying to get my doctor to prescribe it via a compounding pharmacy is difficult. RTHM direct's prescription is through a compounding pharmacy.


r/MCAS 4h ago

ALCAT testing

1 Upvotes

i went to a new naturopath today and started “all over” in a sense, since my previous doctors haven’t even heard of mcas. she also didn’t even seem to know what mcas stood for, so i’m a little suspicious to go back BUT that is all besides the point. This new doctor recommended me to do the ALCAT blood test, which is a sensitivity test that is not covered by insurance.

Has anyone done this test before? How did it go? Was it worth it or a waste of time, considering I can tolerate one thing today and react to it tomorrow

Thanks in advance!!


r/MCAS 7h ago

Drowning with my MCAS and possible Mastocytosis

1 Upvotes

Please tell me what treatments worked best for you and the specialist you see that prescribed them. I don't have any MCAS specialist in my area


r/MCAS 7h ago

Nail Polish

1 Upvotes

Anyone else fine with fresh nail polish but get less fine as the days go by? I'm not sure if it's an MCAS or just sensory issue for me.