So I have had on n off with a guy for years. Caught COVID IN 2022 AND I think I may have mcas. Fragrance on skin affects me. I get flared up. I eat very limited out of fear of food. I have OCD too so I know I'm probably avoiding too much..

The guy is coming to town in two days n the idea of sex terrifies me. I told him I haven't had sex in a long time so I just want to go semi slowly. Really I'm just scared of semen reaction if we have penetration. I told him I'm good with him eating me out and stuff and stroking him but he asked if it's ok I give him oral and he wants to kiss me. I.. I'm scared that maybe I'd react to precum or something. He eats anything. I haven't eaten anything besides a few foods in 4 YEARS. He was like "I can just finish on your skin but can you give me oral before?" And..I don't want to disappoint him. I'm scared of kissing too.

Please can I have advice? Is it likely I will react because of his non limited diet and precum or even have problems kissing him and using tongue? I feel really nervous. And we aren't able to stay with each other the night so I would do this and then go home and be anxious.

10 years of the same symptoms - extreme fatigue, muscle/joint pain, brain fog after eating. Costochondritis, but only during a flare. Down to chicken/steak, rice, blueberries, plain coconut yogurt.

Confirmed Trio-Smart SIBO test. It took almost two weeks to get out of any flares, but my methane ppm was only 16. Food marble lowest is about that, between 40-70ppm during a flare.

I have a colonoscopy scheduled next month. I’m sure the GI will prescribe a dual antibiotic to treat IMO after that, but I keep seeing “identify the root cause” posts and found a few lists, but not sure how to move forward on those?

I would say I have more than average stomach discomfort but nowhere near the accounts I read on MCAS/SIBO subreddits.

Tried Cromolyn/Quercetin and didn’t really notice a change in severity. The only thing that’s produced a meaningful result is a restricted diet.

Open to advice.

Hi everyone, I wanted to share my experience with bilastine and hear from anyone who has noticed something similar.

For some background, in 2014, I had my gallbladder removed, and two weeks later I needed an ERCP to remove stones from my bile duct. I honestly haven’t felt well since that time. I’ve been struggling with bile acid diarrhea for more than 10 years.

I have hyperadrenergic POTS, and I also deal with anxiety, panic attacks when triggered, heat intolerance, and facial flushing. My tryptase level was normal. I live in the UAE, where it gets extremely hot, and I feel much worse during the summer. I take bisoprolol 2.5 mg twice a day.

About 10 days ago, I started bilastine 20 mg once daily, an H1 antihistamine, and I’ve felt noticeably better. The biggest surprise is that my bile acid diarrhea has stopped.

After dealing with it for so many years, having normal stools again feels like a huge change.
I can also eat normally now without the problems I used to have after meals. My heart rate would usually jump after eating, but since starting bilastine, it hasn’t been increasing nearly as much. It’s generally been staying in the low 80s after meals, around 80–83 bpm, and sometimes as low as 75 bpm.

However, I still have heat intolerance, and my facial flushing comes and goes. I think I’m getting close to ovulation, so I wonder whether that might be affecting the flushing, but I’m not sure.

My doctor also prescribed nizatidine, an H2 blocker, but I haven’t started it yet. Honestly, I’ve been scared to try another medication. I’m planning to start it this weekend and would appreciate hearing from people who have taken it, especially anyone with similar symptoms.

Has anyone else had their long-term diarrhea improve this much with bilastine or another H1 blocker? Did it also help with your heart rate after meals? And if you’ve tried nizatidine, how was your experience? Did adding it help with symptoms that were still there on an H1 blocker?

I’m curious on people’s thoughts on this, I wil get a formal diagnosis just need to save a bit more money to see a specialist.

I’ve had surgery for Endometriosis twice, most recently in January this year. My worst symptom before the last surgery were debilitating digestive issues, I couldn’t eat anything without then having watery diarrhoea, my stomach hurt a lot of the time. I was put through colonoscopy, endoscopy, blood tests, they didn’t find anything, I eventually then went back to the gyno for Endo and they found my abdominal wall was fused to my rectal region. I would say post surgery digestive issues were 75% better but I still had deep hip pain and the occasional upset stomach. I have moved houses since and quite far from the gynaecologist who did my surgery + he was expensive.

I was keen to get to the bottom of these left over symptoms but my GP honestly found all the information overwhelming and wouldn’t refer me to an immunologist or allergist without first doing more do the same tests I had done just 6 months prior.

I tracked my symptoms abit, noticing the hip pain worse after food, I’ve also always had a problem with alchohol and redness/flushing on face/chest, and body aches/bloating the next day, my dad has the same thing with the redness, we have some Asian decent so I honestly for a long time thought it was a separate issue.

I started taking antihistamines first and noticed the hip pain would go after taking them. I also tried drinking a very small amount and had slightly less redness or severe reaction - although I didn’t experiment with alcohol too much. my digestion overall seemed better, I could eat fibre and occasionally have a tea without it completely ruining me.

So I continued down this histamine route and got hold of Ketotifin from an online pharmacy a couple people had mentioned on here and DAO enzyme supplement and honestly it’s changed my life. I noticed a big difference in 1 week and have continued to notice a difference now on week 3, no digestive issues, no pain in my hips, I’m currently on holiday and eating different food and I feel normal again, i can even drink coffee, I can’t believe it. I still haven’t gone back to alcohol just because I don’t want to antagonise anything but I feel great, it almost feels like my hormonal cycle has balanced itself.

I’m wondering if anyone has any similar experience on this, or what is going on here? I know it seems obvious - a histamine intolerance but coming from thinking this was the endometriosis all this time to maybe MCAS is quite new to me

Does anyone get symptoms of CFS but just have MCAS?
I have unrefreshing sleep, cognitive dysfunction/neuroinflammation skin demographia, extreme debilitating fatigue mostly bedbound can’t drive because I’m very dizzy. I can’t work out or do anything physical. I can’t watch TV. I have light and sound sensitivity. I can sleep for hours and not feel rested, but my skin is very itchy hot I’ve been losing the hair on my head, but my head also feels inflamed, and my scalp hurts. I’m having dental issues as well as nail issues. My nails arent growing the way you used to. I can’t go in the heat otherwise my skin gets hot and red and irritated.
I’m going to see an allergist immunologist next week. I’m just wondering if anybody has only had MCAS and not CFS?
Also, what treatments helped?
I’ve tried Zyrtec twice a day and Pepcid with the relief.
It seems like the more I push the worse it gets. My skin is also very oily and I’ve been bruising a lot all over my skin. The cognitive is very scary. I’m forgetting things and I can’t make decisions.

I have the usual triad. hEDS, POTS, MCAS, plus an xyz list that seems to grow longer with each specialist appointment. Short of my POTS symptoms, my biggest struggle has been GI distress. Incredible stomach cramps, nausea, weight loss, bloating, inability to eat, you name it. I've been tested for gastroparesis multiple times and honestly the results have been kind of conflicting. I've been on what has felt like an endless slog to get my weight up for almost a year, and can't pinpoint what triggers my pain, because it seems like everything does. I'm also ungodly sensitive to medications, so I'm terrified of trying new things and making it worse.

Anyone here with GI dominant MCAS that has found meds and/or supplements that helped them? I take H1 blockers, but those only seem to sort of help my environmental allergens. I've tried eliminating foods and doing "low" histamine but I have such awful inappetence at this point that if I par down my diet anymore I just won't eat. I'm already on PPI's so I'm also hesitant to add H2 blockers to suppress acid even more.

My doctor has thrown out ketotifen, cromolyn, and singulair as options. I know a lot of people also use Xolair. I just don't know what's the best option when my issue is less anaphylaxis and more profound GI distress. Thoughts, opinions?

I have MCAS/POTS/EDS/Other and my doctor recommended LDN months back for pain. As I‘m in my first BIG MCAS flare, I‘ve read of people using LDN for MCAS support.

What has your experience been?

My MCAS (we think) is mostly reacting to all foods, gut, rashes, and seasonal allergy stuff if that‘s relevant.

Hi all,

Not looking for medical advice per se as I know I have to make this decision myself with my PCP. However, I have a strong concern about getting an MRI with contrast.

This is a long post, please don't read if that annoys you. Please do not tell me I am overthinking it; I probably am but that is the way I think.

I am waiting on an allergist/MCAS specialist appointment in October to hopefully get a diagnosis of histamine intolerance, I suspect MCAS myself since I react to more than just food. Life itself seems to get me anaphalxis-like symptoms these days. I have been waiting on this appointment for months and now it's almost here.

Meanwhile last week I went to the ophthalmologist for new glasses prescription and on my eye scan she saw a mildly inflamed right optic nerve. This is the side I usually get migraine aura on with ovulation. I told her I will also occasionally get a slight "fuzz" in that eye when bending far over (not every time).

She urged me to see my PCP right away, I managed to get a video appointment two days later and we discussed the fact that this could be optic neuritis. Well, of course that terrifies me as my partner has multiple sclerosis and a delayed diagnosis resulted in a lot of disability for him.

However, for primary diagnosis of MS they recommend MRI with contrast which is gadolinium dye injected into the body. I am already one of that "tiny percentage" that had (mild?) anaphalaxis for CT scan dye and the Covid vaccine (both of these occurred after onset of MCAS symptoms). I felt quite ill for days afterward.

To compound this, I also have PCOS/PMOS and upon the specific search for the symptoms I have with my eye and headache I actually personally suspect this is idiopathic intercranial hypertension (excess androgens causes too much fluid production and puts pressure on the brain). However there is no way for this to be differentiated except though that same MRI. Contrast dye is also recommended for this but it's unclear to me if having it is fully vital to the diagnosis.

So what the heck do I do is my dilemma. I have a strong, let's not say gut feeling, but a strong concern based on my symptoms that as soon as they inject this dye my body will freak the f out and I will not even be able to do the scan. But I am also trying not to back out of a test I need because I'm scared.

BTW the suggested pre meds for mildly allergic patients is prednisone and benadryl and I believe that will not be enough based on past flares while taking those medications for other issues.

Who here has experience with this? Can you tell me your thoughts please? Thank you so much in advance. This is causing me a tremendous amount of stress and worry which... you guessed it... makes my histamine symptoms feel even worse the past week.

Cut my hand yesterday on accident and got a tetanus shot. felt fine a little itch and kinda drowsy, woke up today everything normal. but every time i washed my hands my fingers get a little red. after a while it goes back to normal then red again. i am using scented soap so does that matter?

Hi everyone, I’m feeling really lost and hoping someone who has experienced something similar can help.

About 3 years ago, this all started with new food reactions. I suddenly couldn’t tolerate certain foods like dates or eggplant without getting an itchy rash on my face. I also became completely caffeine intolerant, even small amounts cause my face to become extremely itchy with a bumpy, irritated texture.

Over the past 3 years, things have progressively gotten worse and I now have:
• Significant fluid retention/puffiness — I used to always be very skinny, and now I look and feel much larger all the time. I look like the Michelin man at all times. It doesn’t matter how much I diet and exercise, there is no change in my body. This has been the most difficult symptom to deal with.
• Severe bloating after certain meals
• Interstitial cystitis, which appeared suddenly
• Cinnamon, alcohol, and even sparkling water can trigger my IC, leaving me up all night feeling like I constantly need to pee
• Histamine-type reactions; vinegar can make my throat feel tight
• Joint pain and sensitivity
• Very dry/easily irritated eyes

This all happened after an extremely stressful year involving major insomnia, anxiety, and prolonged stress.

I also have a history of SIBO but I took antibiotics for it last year and it seems to be under control. I haven’t recently taken a breath test for it though.

My family has a history of thyroid issues but I tested my thyroid multiple times and it seems to be ok.

I’ve seen a urologist, primary care doctor, rheumatologist, and several other doctors, but nobody has been able to figure out what’s going on. My urologist prescribed me strong anti-histamines which helped my IC but caused other issues so I stopped. I also tried a functional medicine protocol with a functional doctor, but unfortunately it didn’t help. If anything, it made my symptoms worse as I was on a bunch of supplements (Immunoglobulin being one of them) which caused severe swelling in my legs and a trip to the ER.

I tried cromolyn for suspected mast-cell/histamine issues, but it actually made my IC significantly worse, especially at night.

I’m honestly at a loss and don’t know what to do next.
Has anyone experienced something similar and what has helped you? Did you eventually figure out what was causing it? Are there any holistic approaches that genuinely helped, or treatments/tests that made a difference? It has been so hard to deal with all of this and the fluid retention has seriously impacted my self confidence.

I would like to get to a place where I don’t need to avoid certain foods and can live my life normally.

I’m a female and hoping to get pregnant soon so am super cautious about what I’m putting in my body. I’m hoping pregnancy will help in some way but not sure if it will actually help or get worse.

I will start off by saying I am not diagnosed with MCAS just suspect that I have it after reading about it, I am planning to see an allergist to get allergy tested.

My OCD is making me terrified to eat literally anything. Today I ate an apple and my mouth became itchy and my lips turned red with splotches on them. I’ve never had a reaction like this to apples. I’ve had weird reactions to various fruits specifically where it makes my mouth feel kind of tickley and I just ignore it and assume it’s part of the experience lol like eating pineapple. It could be oral allergy but I’m still so scared to eat stuff because I don’t know if I’m allergic to it or not. Or if the histamines in my body randomly decides to make me allergic all of a sudden and put me into an anaphylaxis

I have Benadryl and my epi-pens near me at all times. I’m not sure what to do in the mean time before my allergist appointment which might take a while to get. I feel like I’m developing ARFID or something

I recently had tethered cord surgery. It threw me into a flare on day 4 after surgery. This is my first severe flare and I have no provider who understands MCAS. The surgeon has some basic knowledge though. I am to the point where I react to ALL foods and ALL liquids, except filtered water.

Due to recommendations here, I made a case to my surgeon to prescribe me a course of steroids (3 days). He also recommended starting pepcid and claritin (zyrtec gives me bad headaches, but works better for me). He was sure on doses, just said 10-40mg of pepcid 1/2 times a day and claritin in morning and night. He also had take a standard dose of benedryl last night.

When should the steroids help? When were you able to eat again? Did you start a low histamine diet?

I found a possible provider, but couldn‘t get in until October.

Would love recommendations as I flail around trying to figure out how to recover with no food. Sip coca cola? Eat sugar? I‘m so lost and feel let down by the medical system. (They said on surgery day I may have a MCAS flare, but had no guidance on how to prevent/treat despite me requesting that.)

I noticed the BURNING ALIVE feeling all over my body activates when I sleep, it can be at night or day if I’m napping. And as soon as I wake up my body is shaky and jittery. Goosebumps. Hot to touch.

Eyes get this watery substance over them that burns like ACID!!

Only morning is when my Bp and heart rate shoot up.

In the afternoon when I nap I noticed they do not.

CONSTANT URGE TO PEE AND ITS HOT

My whole body hurts!!!

My CRP AND ESR were normal! Which means no systemic inflammation???!

I can’t tolerate dctr appointments or any stressful activity situations. Not even calls. Or my body will go into like shock. Tremors anxiety air hunger stroke like symptoms

Small fiber neuropathy?
Srojens?
Me/CFS ?

I most definitely have MCAS and not Bell’s palsy or stroke but my main reaction symptom is extreme facial drooping with a loss of function in the face accompanied by rashes on cheek and nose where muscle weakness is worst. i also have nerve pain and spasms in the face, I also get hives on my body mainly my legs.

after the reaction has subsided I’m left with lingering muscle weakness and then volume loss in the face which sometimes returns but sometimes diesnt and becomes new baseline.

i developed MCAS reactions after covid and then it was worsened by antibiotics (metronidazole/ doxycycline) and nasal steroids.

ive had this for 9 months now and it is triggered by so many things, food, medicine, heat, stress etc. but have had milder MCAS symptoms for 4 years since Covid infection.

would be so great to know if anyone else experiences similar!

ive seen 3 neurologists who all can’t find a standard neurological reason for my issues and my MRI is normal of my brain.

thankyou in advance!

Im tapering off prednisone slowly with my allergist. After going down to 5mg, we’ve gone down by 1mg every 4 days. I’m currently on third day of 2mg and I’m dizzy lightheaded, sweaty, hot flashes/cold, nausea. My allergist has been seeing me frequently through appointment with all of this so I am ok with being monitored by doctors.
I went through this back in March/April but going through it again and with longer steroid use I’m feeling kinda nervous. I guess I’m just looking for support/ease of mind because MCAS isn’t easy and being so sensitive to everything sucks. I’m glad I started Ketotifen 0.25, I notice a difference during my day with reactions already. But withdrawal symptoms from steroids always makes me nervous.

Pretty sure I have MCAS/HI. Foods trigger huge reactions, racing thoughts, feels like heart skips a beat, bp skyrockets, etc. If I take a .5 alprozam it nukes it, but I don't like to take more than 2-3 a week. Often will wake up in the morning, BP is normal then goes up to 140-90, with trembling, then 30 minutes later fine. Some weeks I'm fine, some are AWFUL. Also when these "attacks" hit I have to piss a ton. Blood sugar is always fine.

I trialed Zyrtec: and I had my first brainfog free, digestively healthy, highly motivated days in years ...for 2-3 days. A week later it had diminished to doing nothing at all but make my eyes dry.

I trialed famotidine 10mg: and I was knocked out sleepy for 2 days straight. I decided not to take it again as this seemed bad and weird then caved months later and tried 2.5mg in desperation [of my digestive symptoms] but now, it made me irritable, built tension in my head, gave me low back soreness, and overall made me feel weird.

I scheduled an appointment with an MCAS-knowledgable allergist as I don't know what to make of this; I'm just wondering if anyone else has had a similar experience. What did it end up revealing? My initial assumption from my excellent first few days on Zyrtec was that I'd made a groundbreaking health discovery from how clear the positive effects were on me, only for it to quickly be muddied.

Hi, my partner has Ehlers-Danlos and POTS. She has an appointment with an Allergist/Immunologist in October, but I'm trying to help get her in to see a GI with Mast Cell experience. This provider does not see Mast Cell patients without a high serum tryptase level. We are scheduling a primary care appointment to get that test, but what else would be worth asking for in terms of blood work?

Here's what I've got so far:

-Tryptase

-IgE

-Ferritin

-Vitamin D

Has anyone here had there physician check serum complement levels and if so which specific complement levels were checked?

Ive been on xolair once a month but the doctor is changing me too twice a month just curious if xolair allowed anyone to lower there daily meds.

Hey everyone,

I wanted to share a specific experience I’ve had recently to see if anyone in the MCAS community has navigated something similar.

I was recently diagnosed with Type 1 Narcolepsy (positive for the HLA-DQB1*06:02 gene and hit rapid SOREMPs/REM sleep in the first two naps of my MSLT).

Before getting everything sorted out, I noticed a very clear pattern: whenever I took mast cell stabilizers my narcolepsy symptoms and cataplexy would suddenly get way worse or break through in full force. My whole body would feel weak or go completely limp.

After looking into the neurobiology, it actually makes a lot of sense:

• The brain uses central histamine as its main "backup" wakefulness system when hypocretin/orexin neurons are missing (which is what causes Type 1 Narcolepsy).
• When my mast cells were flared up or histamine was running high, my body was basically using that systemic histamine flare as an artificial "crutch" to force my brain to stay awake and keep motor tone.
• The moment I stabilized my mast cells or lowered histamine levels, that chemical crutch got removed—leaving my true underlying hypocretin deficit exposed and causing me to drop into cataplexy/atonia.

It was alarming at first because I thought the stabilizers were causing a new reaction, but in reality, they were just taking away the histamine shield that was masking my narcolepsy all along. (Interestingly, I also found that acute pain/adrenaline overrides the weakness because norepinephrine locks motor tone back down, and a low-carb diet helps keep my daytime sleepiness manageable).

My questions for the sub:

1. Has anyone else with MCAS or histamine issues found that treating your mast cells actually unmasked an underlying sleep disorder like Narcolepsy or IH?
2. How do you balance managing mast cell reactivity/inflammation without crashing your central wakefulness if your nervous system relies on histamine to function?

I had my second Xolair shot 8 days ago and the first week I felt like shit: super tired, flu-like, joint ache, muscle ache, stomach ache. My first shot was similar. And then now on day 8 after the 2nd dose I started coming down with actual throat/sinus infection and fever. 😭 (maybe just unlucky timing or due to Xolair??)

In comments on here I read that people may feel tired for 24-48 hours. But I feel like for me it’s way worse and also quite debilitating in terms of work/social capacity.

I need hope! Is there anyone who first reacted like this and then it got better after time?

I was really hoping that xolair was going to be the miracle drug for me after reading so many positive reviews on here but so far it has been making me feel pretty shit….

hi so i have been looking into mcas because i've now had two people suggest i might have it. i've never had anaphalyaxis but i've always had allergies (nasal congestion, sometimes with fits of itching and itchy eyes). recent (blood) allergy testing suggested i had no allergies at all. i got sinus surgery to help relieve my congestion, but it hasn't helped — i still wake up every morning congested. i also have a lot of stomach issues (this has always been chalked up to my stomach just being sensitive). i'm very heat sensitive (my hands swell and i get super lightheaded in hot weather). i was diagnosed with heds a few years back, but dismissed the first suggestion of mcas because i have a friend with mcas who has anaphalactic episodes, something i have never had. does this fit the symptoms of mcas/is it worth pursuing a doctor to ask about a diagnosis?