Basically the doctor said they couldn't do anything for me and explained that since my reactions are all internal(adrenaline dumps, fast heart rate, insomnia, bloating, gas, headaches, aching pain in arms & legs), and NOT external(rashes for example), that I have intolerances and not allergies. I did get a blood test done and it showed that I have a low level allergy to wheat(I'm also experiencing mild symptoms from various foods I've never had issues with before, but only wheat showed up on my test results). This doctor also told me that mold exposure doesn't trigger MCAS, which confused me since I've read quite a few articles that mention mold exposure as a possible trigger for MCAS. And right before I started getting explosive symptoms, I was exposed to mold. She pretty much told me to go see a gastroenterologist, which I currently have an appointment scheduled for.

So me being not the expert here, I didn't really question this doctor on the spot, but I'm a bit skeptical on if she was giving me correct info. Anyone have any advice?

I’m two/three months into 2mg daily, and I don’t feel like I’m getting sedated anymore but the drowsiness it’s causing is intense and it comes in waves. When I take the first dose I feel fine but once I take the second I tend to go down for a full 10 hours. I can’t tolerate taking 2mg together yet it’s too much

Symptom-wise it’s amazing though, my joint inflammation is completely gone along with a lot of my pots symptoms (I have no idea how), I was even able to drink a glass of wine a few nights ago with no flaring. But the drowsiness is a real problem. Did anyone else still have it after several months? Did anything help? Titrating up or down etc?

I tried my first dose on Friday before dinner dumped the whole ampule into a glass of water, drank about 3/4 felt really weird and then woke up with flushing on my chest.

I knew that many folks had to titrate on but I thought I was by only taking one dose a day and adding another dose each week slowly was titrating. I really didn't expect to have such a reaction. But also I'm a slow learner 🤣

I did 10 drops today before dinner. About to do another 10 before bed and then do that again 4x tomorrow. I mean this is 10 drops is equivalent to .5mg and there 5ml in an ampule. So basically 1/10 the dose

If I don't react what is the amount of time I should wait to increase? I'm on h1 and h2 2x a day and hydroxyzine at night. Like a couple of days? I just am not sure and it seems like it's going to take a while to get anywhere near an effective dose.

Thanks in advance

I’m finding it frustrating figuring out ways to build up my “good” gut bacteria after antibiotics when literally everything online says to eat things like kimchi and fermented things that I can’t eat because of MCAS :/

Not that it matters, but this is my first ever Reddit post.

1st dose on Monday. I have zero appetite. I skipped breakfast, ate 1 cup of baked oatmeal I'd prepped for lunch and only picked a few veggies for dinner that I forced myself to eat. Maybe at most a cup. That was more than the first day.

Is this a normal side effect? Day 3 and any other symptom resolved already.

1st dose 75 mg.

i started taking it almost a month ago now, stared with a lower dose and worked my way up to 1mg twice a day. my symptoms don’t really feel any different and i’m not noticing any side effects at all? i still get my small normal reactions sometimes to my safe foods. is this normal? i’ve been reluctant to try new foods because of this (im very severe, down to 5 foods). has anyone else had this experience?

if you had a bad mental health reaction to singulair how quick was the onset? i’m taking my first dose today and want to know what to look out for

I have always experienced that crawly feeling your skin gets when you have the flu, but I always thought it was random. And it never was accompanied by fever, so a complete mystery.

Nowwww I'm wondering if all those times were during histamine flares/MCAS triggers. (I only found out I have MCAS like six months ago.)

So I thought I'd post here and see if this is a symptom others have experienced?

second baby screwed up my whole system. went on birth control and it helped a lot! now I’m wondering if it was MCAS based on reading. everything fits. PMDD would also fit but it seems like they can go hand in hand. I guess my question is, is trying for baby 3 a bad idea? i may just be working myself up!

I react to everything and I’m scared. I have a couple of options to try like an estradiol spray called lenzetto and a estradiol gel. I’m going to titrate slowly with small doses. I didn’t do very well with the patches, I reacted to the adhesive. I tried mirena and that had m reacting too. I get hives and mast cell dumping for anything whether it’s disinfectant on my skin, smoke in the air or something I’ve eaten. It doesn’t matter what the cause is, my body just does what it wants. I’m not on any stabilisers or anti histamines right now. I also had a reaction to my antihistamines recently too. That was rough.

I’m always so scared of trying new things including creams, sprays, food, drinks and medications. The fear is kinda taking over my life.

Anyone successfully managed to use HRT with mcas? Did you titrate/micro dose?

I've recently developed intolerances to many foods and water I've tried to get in with my family doctor and my specialist but with no luck any advice I don't want to just go to the ER as I'm not actively swelling or flaring. But I'm not sure what to do at this point

I fainted last year when on a standing only bus (extremely warm) with a broken AC. It was delayed when I went from the gate to the plane for my connecting flight. We were waiting on it for 20 minutes. I have POTS too but histamine can trigger the dizziness.

How are Consider This protein bars? Any others? What food do people take with them?

I'm fine once I get to my destination. Getting there can be tough though.

I have MCAS, histamine intolerance and leaky gut.

I took igg ( serum derived immunoglobulin) 1/4 th dose for a few weeks and then titrated up to full dose in a week. As soon as I reached the full dose, I got loose stool. It was like jugs of water.

I had weakness for 2 days and gut is still a bit loose.

I stopped igg right after. Does igg cause such reactions or I could be reacting to something else?

pretty much what the title says. i started montelukast at 5mg for three weeks and have been taking 10mg for a week. it has helped me so much, but the only problem is that it gives me really intense/vivid dreams and nightmares. i take it in the morning/early afternoon but that doesn’t seem to help

is it likely that this side effect will fade away? should i switch to a different leukotriene inhibitor, would that help with the side effect?

I have slow cont and mthfr.

I could not tolerate quercetin as it gave me jitteriness.

Do people with these gene mutations tolerate luteolin better?

I'm trying to educate myself, it's been 1 year of living with MCAS (many trips to the ER). I've finally been able to see an endocrinologist (it takes 6 months here in New Mexico) and after describing my symptoms she asked me if I'd been evaluated for fibromyalgia (so frustrating). As I understand it, tachycardia increases estrogen, which has a negative feedback loop with histamine. I prepare 90% of my food at home (except for rice crackers and sunbutter) following a strict diet with little relief.

I'm looking to learn more about the relationship between MC and Hormones in general as well as for advice when talking to less than interested docs. After labs tomorrow (which will likely appear within normal ranges), what else should I ask for / look into?

I'm already taking h1h2 2x daily, quercetin, sodium butytrate, Vit C, Magnesium, and have just started Cromolyn.

For context- I have MCAS, POTS, hEDS, and a few others. I was prescribed fludro and am worried about reacting to fillers. I compound my LDN, but not my hydroxyzine and do alright with it. My question is- does anyone here on fludro get it compounded? What is your experience like and why did you choose to do it that way? Thanks!

Any of yall have reactions that last this long?
So yesterdayyyy around five I accidentally drank some juice with a fruit I react to (I know I need to start reading ingredients every time😭)

Only took a few sips but like a little while after my throat was super aggravated, bad sinuse drainage starting up. And literally SINCE yesterday then I’ve felt like crapppp, my sinuses are so aggravated and I feel fatigued

Idk if I just coincidentally was getting sick at the same time or if it’s just a longgg lasting reaction 😔

So I’m curioussss on if others have had stuff like this happen

Hi all - after years of terrible dermatographia and a very low threshold for physical stress that caused flare ups, I finally tried Ketotifen.

Took my first 0.5mg dose last night before bed, and was prepared for some drowsiness today, but I can barely function. Brain fog is INTENSE and I feel a bit nauseous too.

Also the pharmacy gave me a 3 month supply right off the bat for $225, and I’m worried I’m gonna be stuck with this large amount and be struggling on it.

I hate the idea of depending on a medication with severe side effects, but wondering how normal it is to be so out of it after just one dose. It worries me that I’m taking something that can impact my brain so hard.

Any input/ experiences/ tips would be greatly appreciated!

Has anyone in here struggled with treating Rosacea? I started getting rosacea on my face with small pustules on my face that look like pimples but aren’t. My derm prescribed a cream with ivermectin, metronidazole USP, and niacinamide USP (inactives are BHT, glycerin, Krisgell 1000 (?), potassium azeloyl diglycinate, and suspendisse silicone gel) that almost seems to be making it worse instead of better. Beginning to wonder if this is a MCAS thing?

TLDR: Ostracized from girls nights due to perfume. Forced to leave hotel on a vacation due to said perfumes.

One of the biggest challenges for me with having my life is the isolation.

Warning:
Long venting post ahead.

This last weekend, I was supposed to go on a girls trip, staying the night in a hotel a few hours away from home.
I spent the night prior prepping food so I could eat the night I’d be away from home, and due to my sensitivities to scents, everyone agreed to not wear perfumes or other scents on the trip, a request made by the person who planned the event.

I spent hours driving to the destination, and the person I was supposed to share a bed with was absolutely coated in perfume.
Being in the room for 10 minutes made me react, leaving me no choice but to leave and drive back home. I spent 8 hours straight driving, and was absolutely exhausted.

If I was unable to climb stairs, and was asked to drive so many hours to a hotel without an accessible entrance, would they feel bad then? Would they try to ensure I could attend? Or would they force me to return home, with a quick “sorry” before going along with the fun activities of the night?

I saw a crafting meetup event on IG in my region, which I’d love to attend, but it was held at a pizza restaurant, and being that nightshades are my biggest trigger, I couldn’t even dream of stepping foot in a restaurant like that.

I can’t go get drinks for happy hour with my coworkers or friends.
When my office mates at work don’t wash their perfume off from the night before well enough, I have no choice but to find some random location in the building to work or risk a flare up from sitting at my own desk. (I’ve talked to management but the enforcement is non existent by HR)

It’s bad enough I can’t go out to restaurants, or eat anything beyond the five foods I’m stuck eating day in and day out.

I still try to remain positive in life, find the best in people, enjoy those couple foods I can eat, but the reality of me being an “other” in nearly every aspect of life is absolutely crushing and truly devastating, especially when it’s clear others simply don’t care since it doesn’t impact them.
Thank you to those that have made it this far in my venting rant; I feel like those in this subreddit would understand me better than most,

Thank you in advance!

I am not diagnosed yet, but suspect I may have it. Was this something that developed over time or did you just have MCAS one day but didn't the day before?

So… last night I dared to try Montelukast after almost a week of looking at the pills. I decided to use a smaller dose to at least see if my body could handle the ingredients in the pill because that is one of my biggest concerns. I don’t take any pills other than Allegra, Vit D (because I’m super deficient), Iron because my hemoglobin is screaming, and quercetin (all with 2-3 bare ingredients).

At least I was ok last night, but I know the micro-dose is not showing the full effects. I will try this dose for a few days and move up little by little until I reach my full dose if my body can take it.

My breathing problems have exacerbated in the last few months, and it’s scary, so I feel like I have to risk it and pray that I don’t get any of the serious side effects. 🙏🏽

Just sharing because you guys understand this. 🙂

For context, cooking, hosting friends for dinner, and trying new restaurants used to be some of my favorite hobbies. I have been dealing with MCAS now for quite a few years and have only been able to eat max 5 foods for 3.5 years now. I am still obsessed with food, follow food-related content on social media, watch food travel shows, look at my cookbooks longingly... It sucks so much having a passion you are unable to engage with properly.

I do not know if this is healthy or if I should just cut all of this out of my life. It was such a part of my identity.

Anyone else experience this?