New here. I have been in the non-allergic rhinitis subs for years and only just heard of MCAS. I have done a full allergy panel testing and am not allergic to anything. I have a runny nose all day, worst after eating and for some reason around 4:00-5:00pm I get runny nose and post nasal drip whether I’m eating or not.

I use azelastine and iprtropium spray twice a day and I don’t feel a difference. I have tried no gluten for two weeks and I didn’t notice anything. My diet has always been pretty healthy so I don’t know what it is. I have had post nasal drip, and runny nose for 10 years now, it’s started when I was 18. I feel it’s getting worse the last 2 years. I don’t know what to do anymore. I have an appointment with an ENT in about a week. I also have rosacea for about 10 years too. My flares are pretty infrequent nowadays.

i was diagnosed officially with MCAS (POTS & hEDS as well) about 2 months ago now. i’ve been on a steadily increasing dose of cromlyn and it’s literally been a lifesaver. i can eat without getting sick and my stomach cramps and facial flushing is nearly gone.

here’s where i messed up: it was late and i was tired and didn’t want to wait 30mins to eat. so i had some buttered noodles and a few spoonfuls of ice cream and went about the rest of my night. within 30ish mins my stomach started BLOWING up, i am so insanely nauseous, oh my god, i have learned my lesson LOL.

so to spare you the pain / whatever your symptoms are, this is a reminder to take your medication even if you don’t feel like it lol. i’ve had to preemptively cancel an appt tomorrow and take a half day off work bahaha.

Has anybody else ended up on a low histamine diet because anything containing histamines does cause a reaction?

I’ve been whittling it down since I discovered I was allergic to mustard last week. Now I can’t even have tomato. The list of foods I can eat without feeling awfully sick or like I’m dying.

How do you make food tasty when you can’t use most of the sauces or dressings? I just had the most bland chicken and salad roll and it made me sad.

FYI I’m diagnosed, on H1 and H2 blockers and am waiting to see an allergist in February to hopefully get ketotifen from him.

I cannot use the bathroom without Miralax. Last time I tried I didnt go to the bathroom for an entire month. The problem is it drops my blood pressure and gives me a INTENSE MCAS reaction that never ends.

Does anybody know of a remedy to constipation this extreme that wont trigger my MCAS?

even lactulose does it and thats just a synthetic sugar.

Hi! I have been diagnosed with MCAS, POTS, and hEDS for nearly two years now. One thing that I have struggled with significantly has been identifying and implementing a system to help me stay on top of taking all my medications (and infusions for POTS) consistently without getting major burnout. I have tried setting alarms and reminders on my phone, keeping a pill container with me at all times, keeping my medication accessible at work and at home, etc. It seems like anytime I finally get a good routine going, something disrupts it and then I’m thrown off my medication schedule for such a long amount of time that it becomes overwhelming to think about trying to get back on track. This frequently leads to shame spiraling, and believing like I deserve the suffering when I inevitably flare up. Does anyone have any ideas or suggestions for a system or tool I can use to try to get back to being consistent with my medication? I should also probably mention that I have ADHD as well, so forgetfulness/time blindness/task paralysis are all very real for me. Sometimes the number of steps it takes to make sure I have all my pills gathered or all my infusion supplies set up is too overwhelming to even think about, let alone implement. Thanks in advance!

I’m here for opinions if anyone has any!

For context, I’ve been having these splotchy rashes almost daily for months now. It can happen at anytime, while sitting, after showering, doing work, exercising. Also, after exercising or stressful situations, my throat starts to go numb and close, my eyes and skin get itchy, my resting HR spikes to 130-150, and I get severe GI pain. Here is a fun fact though, none of this started until 2 years ago after I got Mono

I haven’t formally been diagnosed with MCAS yet as my first tryptase test came back inconclusive, resulting in an Idiopathic Anaphylaxis diagnosis. This was super disappointing as, I am a student-athlete, and my ability to compete and do work at the level expected of me is seriously impacted by whatever I have. I really just want to know what is wrong with me, if you have any speculations at all, I’m all ears

I’m currently on Zyrtec 20mg, Singulair 10mg, Flonase, and I carry an epipen with me at all times.

I can post more pictures if needed, I have a lot lol

I’m wondering if anyone takes Benadryl extra with an antihistamine or how long you wait between the two? I took Zyzal around 8.5 hours ago, it’s the first time in using this one and want to take Benadryl now because I’m getting itchy and inflammation from eating. I’m finding a lot of conflicting information online and see more accounts here of Claritin, Zyrtec, etc being taken together with no mention of Benadryl.

I’m just curious if anyone in the Seattle area has ever been able to see Dr. Jain? My rheumatologist referred me to him. I’ve been trying to get an appointment for well over a month and it’s impossible. At this point I’ve decided not to continue trying. There is no way to phone the office and speak to a person. The phone system simply replies to you with an automated text. I’ve followed the text instructions to text back or to use their portal multiple times only to receive no response whatsoever. I decided to look up reviews and they are not good at all. Never being able to reach an actual person, never receiving responses to messages, billing nightmares, patients showing up for appointments to find their appointment has been cancelled with no notice, patients showing up for testing and the clinic doesn’t have the testing materials in stock, and one patient making an appointment with Dr. Jain but never seeing him because the clinic has them repeatedly seeing a nurse. I see that he is recommended on this sub for this area, but I wondered if anyone has truly seen him.

Does anyone react to cedar shelves? We just bought a house and it was installed in every closet and I’m finding it extremely bothersome. I’m also worried about my son who has a reactive airway. Does anyone know how to get rid of the smell?

Is this a normal reaction for other people? I’ve never had a reaction to allergy shots like this.

(This is the 3rd time in my life I’ve received immunotherapy—meaning 3rd course, not shots.)

i currently have like 3 foods i can eat right now. corn chex (literally shocking, and i can literally feel this one is starting low grade reactions so that’ll soon be gone), quail eggs, and sweet potato are all that’s keeping me alive right now. plus water. and the taste of water right now makes me want to pull my own hair out.

i occasionally get periods where i can bring back a couple foods, but it always ends up a trigger again in a few weeks. I’m so exhausted from living like this, and feel for those of you who are going through the same thing. for those of you who aren’t, i’m so jealous.

my biggest regret: i should have ate more cheese more often when i was healthy lol

So I've recently been dealing with a bunch of nonspecific, multi-systemic symptoms that really don't make much sense.

Way back in 2020, I started getting heat hives, and was quickly diagnosed with cholinergic urticaria. Antihistamines didn't help at all.

Fast forward to 2023, I got a bad cold, and never fully got better. Since then, I've had chronic fatigue, brain fog, sinus congestion, etc (no sinus infection), and I was recently diagnosed with chronic gastritis via gastroscopy.

I started reading about MCAS, and some people's stories really resonated with me. The thing is though, my symptoms aren't episodic. They're constant. I'm constantly fatigued, the hives always come when I start sweating or exercising, the gastritis is constant (but gets worse with stress, obviously). Exercise seemed to help, but I stopped when my gastritis started because the nausea got so bad.

I'm thinking of looking into it, but from what I've read, MCAS is usually characterized by episodes of worsening of symptoms, followed by periods of regression. Other than that, I think my symptoms fit almost perfectly.

If anyone has input, I'd love to hear. Especially if you've been diagnosed with MCAS but have more "low-grade constant" symptoms.

Note: This isn't a comprehensive list of my symptoms, just the major ones. I have a lot more, the post was just long enough as it is.

I get these random burning red hot rashes on my face neck and shoulders sometimes they itch but mostly they just burn. I can’t link it to any food/drinks/environment things. Today it was bad and made my lips tingle, sneezing and throat feel tighter and needing to cough a lot. Anyone else have this?

I'm on mirtazapine 15mg and on trazodone. I stared last year because I was in bad shape after benzo withdrawal. After starting it out of desperation, I noticed I could not longer eat turkey. After adding trazodone, about a month later i could eat lamb, I lost sweet potatoes, coconut oil, mango, and reacted horrible to ginger. Slowly I've lost foods. Has anyone experienced this? I was 108 pounds and now I'm 120. I'm scared to get off and it make my histamine intolerance worse and lose my weight.

I’m pretty sure I have hyper mobile ehlers danlos. On those forums, lots of folks have MCAS. I don’t break out in hives, but I decided to take Pepcid and Claritin to see if I feel better. And I do. I’m less achey, less brain fog etc. I already don’t eat wheat. Is it possible it is a milder version of MCAS?

Is there something else that would respond to these drugs?

I have a pretty high histamine diet because I eat things like beef jerky for lunch because I need something shelf stable. I also tend to eat close to keto which helps a bunch of other symptoms.

Does anyone else’s cuts get super itchy for days? I cut myself a few times while shaving the other day and I’m getting hives all around the cuts! Let me know!

Last year I thought I had been cleared of Carcinoid, despite Octreotide working on my symptoms while I was in ICU. I had my urine tested twice. Many hospitalizations and allergist (4) later, I went to an endo last week who said she thinks this is carcinoid and there are more ways to work up. Epi does not work on me, in Oct I had to have 6 injections. I'm so confused, my symptoms mirror carcinoid, flushing breaks through antihistamines, steroids and benedryl, but also MCAS!

How many workups did you have before they ruled everything out? All the allergist have said they don't believe it's an 'allergy', and I'm reading about histamine in carcinoid, but it's not totally clear to me.

Hello I recently was told by my naturopath that I might have MCAS, but they did a blood test it came back negative but they say the blood test doesn’t always show it. I have severe histamine intolerance, constant sinus infections over and over repeating forever. For example, I’ve already been on 5 rounds of antibiotics since November, I am always on antibiotics basically constantly for years. My gut health is in the trash. If I clean my house, even with wearing an n95 mask, and then letting the dust settle for 2 hours while leaving the windows open and being out of the house, I will always get a sinus infection without fail. If I eat at a restaurant I will get a sinus infection without fail, every single time. Even if they say they don’t put any of my allergens in the food. I have leaky gut, IBS, type 1 diabetes, celiac, diabetic neuropathy, and reynauds diagnosed for sure. I can basically only eat like veggies that are non histamine, and meat but not red meat because I’ll get acid reflux. Every day, I feel horrible I have to do coffee enemas constantly because my bowels won’t move the stuff out or get out toxins or anything. I have constant bloating, many many food intolerances, and random feverish feelings sometimes like cheeks get super red and swollen and then will calm down. I don’t really know if this is anything mast cell related? But my sinuses are severely sensitive like even walking by a perfume department I’m going to have a severe headache the rest of the day. Any advice and thank you for listening 🙏

I've heard it can cause flare-ups in some people but haven't noticed it myself.

I'm on 40 mg of rupatadine and 40 mg of famotidine and i still have symptoms (rashes, joint pain, itchiness and etc) What else can I do?

Hello. I'm having to take half a Benadryl every night to sleep. I know it's bad for me. Has anyone tried sweating antidepressants that have antihistamine qualities like Elavil or other types? Did they work? Cromolyn gave me insomnia as did Singulair. I'm desperate for something that can help. I'm taking quercetin in the morning which helps then

Hey y'all -- so I have suspected MCAS that seems to be triggered by hormones -- specifically around ovulation when I'm more prone to break out into a rash. I also have PCOS, PMDD, POTS, EDS, ADHD, etc.

I'm struggling to find a provider who knows enough to help with these two different specialties. I don't tolerate most of the medications that would be used and i'm getting frustrated with trial and error from multiple drs who don't seem to understand the impact of my different meds.

Any suggestions of types of providers to look for and/or if there are any recommendations in the Denver, Colorado area?

Thanks!

What medications work best if your MCAS is all caused by food?

30f, newly diagnosed and looking for advice. i always flare up (gastro, rashes, etc.) when i get my period and am typically bedridden the first few days. im JUST starting to feel better from my MCAS meds and diet changes and i realized im due for my period tomorrow and now im terrified

what do yall do to help hormonal flares? any thoughts on raspberry leaf tea?

Im looking for any plant based supplements that help with Attention Deficit Hyperactivity Disorder and are MCAS safe. Unfortunately in addition to MCAS disease I also have severe allergies to animal products.

For 10 years been strugling with GI issues like heaviness, indigestion, diarhea daily. Doctors have no clue.

Ultimately I developed a lot of food allergies and I can eat barely anything. Just now started to look into MCAS and I'm trying to understand how it works - let's say I eat walnuts which are high in histmaines, is it possible that because of histamine release urge to empty the bowels can be almost immediate?

I'm on day one of Citerizine, putting high hopes on it.

What would be your suggestions to move forward?

Currently taking a lot of supps for MTHFR that helped me to become from bed ridden (fatigue) to almost normal energy, besides daily diarrhea

Hi! I’m wondering if anyone can shed some light on finding a qualified provider to diagnose MCAS. I was referred to Mayo Clinic and they don’t see for MCAS in my state. My allergist is scheduled out until end of January, I do have an appointment, but I’m not sure she’s qualified in this. My reactions to food and other things are starting to get scary like tingling tongue, unable to form sentences and I’m getting really nervous. My allergy meds are hardly touching it. Thank you!

Just seeing a lot of inconsistencies around synthetic hormones when it comes to the effects on the body. Especially with MCAS.

As per the title I’m wondering how a progestin only pill was said that it won’t help my MCAS as it’s not natural progesterone but then a birth control with fake estrogen would cause the estrogen histamine cycle?

I know estrogen dominance is super trendy in the medical world right now. My estrogen in 3 different blood works was very low yet I’m still being treated by one functional med doctor like I have estrogen issues lol it’s confusing.

More of a rant. I’ve just always felt better on a combo pill that stopped my cycle so it’s hard to argue with how one feels and ones personal experience ya know

Hello you wonderful people, I don't even know how to start this post. I am currently recovering from what I think has made itself to be my worst flare up of the year. It definitely doesn't help that I had 3 large triggers in one week; if not for one of them in particular I probably would have been able to manage. Nearly two weeks ago I went to visit family in another country in a state with a vastly different climate of my own (for context: i live in a desert and went to rainforest). I had a great time apart from my body being a bit flared up, but I could manage. The thing that really set my mast cells off was unfortunately on the taxi back to the airport to return home (a week ago tomorrow). Being a tropical place next to several bodies of water mosquitoes were definitely a hazard. There was a van that was just spraying pesticides and mosquito repellent absolutely everywhere. The taxi I was in had windows that we could not role up as the handle to role up the windows was broken (Really wasn't looking forwards to it as car exhaust around us makes me flare up, but the taxi was called by my terminally ill uncle I was visiting and the driver was a friend of his). As a result, we got directly sprayed and I had no way of avoiding it. It took a couple seconds for my skin to burn but I immediately started coughing while my eyes watered and sinuses started getting more inflamed. I covered my face with my shirt as soon as I could but it wasn't much use at that point. The plane ride home and the change of climate definitely put my body into overdrive. I don't remember the next few days much if at all. The small parts I do remember are when I was writhing on the ground or in my bed near screaming with the way every nerve felt on fire. I just barely remember my mom near panicking. I also remember waking up at night because I physically could not breathe and struggled to catch my breath due to congestion and inflammation. The times I've had pneumonia and walking pneumonia CAN NOT compare to. Apparently I was vomiting the first few days and basically refused to eat. Everything had been nonstop burning, itching, tingling, and/or inflamed since. My anxiety and dissasociative disorders were kicked up by everything. In addition my vision is pretty bad compared to my baseline right now, and my alopecia has worsened. Don't even get me started on the migraines... Luckily as I am typing this I am definitely through the worst of it but not far out of this hell yet. I make this post both as a vent, as I know that I'm not alone here, and hopefully as a cautionary tale. I don't mean to send a message of 'don't ever travel', but rather a warning to ALWAYS take extra precautions and to ALWAYS 'make a fuss' about absolutely anything that can POTENTIALLY be of aid to you, your comfort, and making sure that you are safe. Don't settle for anything less than necessary because you don't want to seem rude. Your safety is important. Please don't end up like me in this situation. Thank you for reading this monstrousity.

TLDR: Two plane rides in one week, sprayed with pesticides, summarized aftermath, and a warning to ALWAYS value your safety even if it means potentially coming across as rude.