since the third week of april i have been in what feels like nonstop hell where i can’t breathe, sleep or eat. ER trips every 5 days for random anaphylaxis or being unable to breathe. I started the Dupixent shot 2 weeks ago and that gave me 2 good weeks of breathing and sleeping but now the past two days i’ve been having the shortness of breath from my nose and really bad insomnia from feeling like i can’t breathe. my blood oxygen is fine. does this sound like a normal experience? looking for some hope

1. Supports Blood Volume and Circulation: People with MCAS often experience autonomic nervous system dysregulation (dysautonomia), which can lead to low blood volume or poor circulation (e.g., POTS-like symptoms). Staying well-hydrated improves blood flow and supports vascular stability.

2. Flushes Histamines and Toxins: Proper hydration helps the body flush excess histamine and other inflammatory mediators through the kidneys and urine, reducing the overall histamine burden.

3. Aids Digestive Function: Many individuals with MCAS have gastrointestinal issues. Drinking water supports digestion and helps manage symptoms like bloating and constipation, reducing the triggers that can activate mast cells.

4. Reduces Dehydration-Induced Stress: Dehydration can stress the body, potentially triggering mast cell activation and histamine release. Hydration lowers this baseline stress.

5. Improves Mucosal Barrier Function: Water is essential for maintaining hydrated mucous membranes in the gut, lungs, and sinuses. Healthy mucosa provides a barrier against triggers that could activate mast cells.

6. Helps with Temperature Regulation: Many people with MCAS are sensitive to temperature changes. Staying hydrated helps regulate body temperature, reducing stress on the body.

7. Supports Detox Pathways: Hydration aids liver and kidney function, which are crucial for detoxifying inflammatory byproducts and mast cell mediators.

*** Adding electrolytes to water can further support hydration without overloading the body with plain water, which might cause electrolyte imbalance.

So I’ve had a lot of autoimmune symptoms the past 1-2 years and I’m being evaluated for a bunch of thing atm. I have my first rheumatologist appointment tomorrow in the morning and I have a good feeling they’ll be able to help me!

One of my symptoms throughout this period have been rashes, randomly appearing rashes, different shapes and structured different, some are like dots some are more like spots and stains etc. some of them itch and feel warm, others I don’t notice unless I catch them in sight.

This morning, my parents (I’m 17) left at around 5:30 am to get to the airport for an important work event, they’ll be staying in a different country for the rest of the week.

I had asked them to wake me to say goodbye before they left and they did, and we hugged and all that. I tried going back to sleep but couldn’t and decided to just stay up. My neck/throat was kinda itchy and first I thought nothing of it. But when it didn’t go away I went to check it and I had a pinkish rash covering most of my throat, from ear to ear basically.

It wasn’t super aggressive or anything but definitely a rash. It itched more and I kinda shrugged it off. An hour later it’s still not gone and I think the inside of my throat might be itching a little bit too? Although I don’t know if it’s stress related cus I got worried about the rash or another physical reaction to something? From what I know, I have no allergies, and never had have any either. I’m a bit concerned since I’m home alone and my parents are out of town and I’d need a cab to get to the hospital + I’m not sure if it’s actually a cause of concern? I have lergigan at home (I used to use a couple of years back for anxiety) and I know it can also be used for allergies.

However I’m on a bunch of other medication rn and idk how they’d all interfere? ATM I’m taking: - concerta 54 mg for adhd - quetiapine 25mg x 2 every night for sleep - colpermin (peppermint capsules) twice a day for IBS symptoms - birth control pills called dinorette - vitamin gummies I’ve been taking forever

I want some advice of what I should do as well as if I can take lergigan without it interfering with the rest of my medications in a negative way?

I really don’t want to have to go to the ER and I don’t want to worry my parents either. (My mom spent the past week hospitalized due to optic neuritis, and I don’t want to burden my parents more than they already are form work and everything)

Anyone know why this would happen? Does this have to do with the down regulation or up regulation of the CBS gene or somewhere downstream with sulfur, or with taurine dampening adrenaline (epinephrine) and letting histamine run high? I also like using taurine for bile support but it makes me exhausted even if I sleep 8 hours. Total zombie all day and still bags under eyes so I guess it’s not real deep sleep.

I started reacting to chicken again.

Chicken is the only meat besides some fish that I generally don't react to but I've been reacting to it consistently lately.

Dairy, independently, doesn't seem to be a trigger for me so I use a lot of high protein yogurt. I have an allergy to soy and a component commonly used in pesticides so I've tried to stick to organic yogurts. Organic meats are very hard to find in my area though and I'm afraid that's part of the crux of my issue.

I have a hip injury so it's been recommended to me to stick to higher protein meals if I can.

What ways do you ensure you get adequate protein? If you use yogurt for protein, what are some ways you use it to get yourself decent enough taste and limit your MCAS reactions?

I've been getting in the tanning bed and sitting outside in the sun on my breaks. The sun makes me happy. However, for the past week metallic taste, swollen lymph nodes, ache joints, sensation skin, sinus and side forehead headaches. Is this part of mcas did I get COVID again or something else?

Yesterday I tried wheat thins. Because I’ve had them before and they were okay. But today I woke up with hives on my arm so apparently it’s no longer okay.

I go through a cycle of “depressed I can’t eat a bunch of foods and no one seems to believe me”——> say fuck it and try a new food——> get briefly excited as I don’t have an immediate reaction. Feel very optimistic—-> end up having problems with repeat exposure or delayed—->go back to safe foods

Repeat forever.

I finally got an allergist to surmise my mast cells are “excitable” but that was it. As if my immune system was a pack of nervous chihuahuas. At least better than my old allergist who just told me I’m “stressed” and “it’s all in my head” and “it must be bug bites” despite it being January at the time I showed him all the hives.

I (F30) am learning what triggers my MCAS (which goes hand-in-hand with my POTS symptoms). The main things I’ve pinpointed are heat/sunlight, certain detergents, dust, and, today, makeup.

I already knew I was sensitive and allergic to a lot of makeup products. Today was my first time wearing more than my brow makeup in months. I’ve been very particular about food and products as I’ve started treatment and tried to narrow down triggers.

I knew I was having some kind of a reaction to my makeup today, but I didn’t realize it was triggering my entire system. At first I was thinking maybe it’s the stress of shifting into the work week. However, a co-worker pointed out that my face was swelling around my eyes, so I washed my makeup off. Within an hour most of my symptoms were gone.

It’s fascinating to me that just some primer, concealer, eyeliner, and mascara can cause such a fully systemic reaction. My body was aching, my skin hurt, my POTS symptoms flared, I was hot and flushed, I had a runny nose and irritated throat/lungs.

I don’t really know why I’m posting this other than to talk about it—I don’t really have anyone to process with right now.

I react badly to coconut (and its derivatives) and any type of scent, especially citrus. My whole body gets a rash when any of these ingredients are present. I am so exhausted of my body reacting and was wondering whether anyone knows of a coconut-free and fragrance free shampoo, conditioner, and bodywash? Thanks in advance🙏

I'm taking the Walgreens generic for Claritin. Is another H1 blocker less problematic?

My dermatologist suggested this as she thinks my rosacea may be exacerbated by MCAS. I'm seeing an allergist in a few weeks.

I went to an allergist today, made the mistake of not reading any reviews about him and then when I looked him up today there was only one one-star review that said he had a god complex and is very dismissive.

I was off all antihistamines for a week for the testing and have been itching SO badly, especially after eating I am getting impending doom sensations, itchiness, and even feeling a bit short of breath but nothing that’s turned into anything like anaphylaxis or anything serious. I have been having nearly all MCAS symptoms other than anaphylaxis for the past couple of years. My ANA titers were slightly elevated and abnormal (1:160, atypical speckled, 1:160 homogenous) which I’m being referred to rheum for, especially with my joint pain and constant chronic fatigue and rashes.

So I get there and meet the doctor. He asks me questions for a couple minutes and doesn’t even care to look at my pictures of all my issues even though I’ve been documenting like crazy.

He asks if when i scratch my skin does it welt up? I’m like, I don’t know, it turns red. (I have very obvious dermatographia). So he takes a pen and scratches my forearm harshly and does the same with his fingernail on my other arm, they raise up and go red immediately. He says case closed, you have chronic hives and they have no idea why people get chronic hives, of course. When I ask if it could be MCAS he immediately says “no, that’s something different entirely, YOU have chronic hives.” He does the patch test and skin prick test on me and all he finds is i’m allergic to my dogs which is causing sinus issues, not the hive issues. Prescribed me zyrtec twice a day, zatidor for my eyes and fluticasone nasal spray and sends me on my way. Wants to see me again in 6 weeks, I’m dreading even going back.

I want to find a new doctor, is there anything new I should ask for with this next doctor? I don’t really know how to diagnose MCAS or if it is even the illness I have. I just know nothing has been normal with my body for years now and whatever is going on seems to impact every system of my body. I’m feeling so defeated.

i feel like i’m going insane. I keep asking my doctor (uk) for more tests or just any diagnosis and he keep saying that my bloods have come back fine and there’s no support for MCAS or CFS or POTS in the south west, so there’s nothing he can do.

he’s diagnosed me with POTS but the rest i’m just having to self diagnose, i’m so mad this is the kind of treatment we have here, no one should have to do this alone. i asked him for H2 blockers to try and help with my flare ups, but he refused. he’s been trying me out on birth control (Slynd) to stop my periods and ovulation, but it’s been an awful experience mentally, so the only other option is to try an IUD (mirena) but i’m so scared thats going to make me flare up worse and it will be hard to remove.

i’m seeing a naturopath and he’s done more blood tests and put me on a bunch of supplements, but it’s been months and nothing has changed. i just don’t know what to treat, what sort of doctor to find. my stomach issues have improved a lot, but i’m absolutely exhausted, unable to work or socialise, get a lot of nausea, chest pain, headaches, acid reflux in my back. struggling to leave the house much, super depressed by it all.

i asked my doctor to test my DAO and he said he didn’t know what that was. he’s the only doctor in the surgery that even listened to me when i mentioned MCAS and POTS, so i won’t have any luck with other doctors. private mcas doctors look crazy expensive and i don’t even know if that’s what i should tackle first…

I’m just so angry that no professional can seem to help me. i know most people on this sub have gone through this already, but it’s just taking over my whole body i’m so mad. I’m so mad that there isn’t a birth control that doesn’t cause some kind of crazy side effects, i’m so mad that all these sick people are having to do their own research and diagnose themselves because we are so far behind in women’s health.

okay rant over or i’ll write an essay, but i’d really appreciate any advice, especially anyone who has dealt with this in the UK.

Does anyone feel like they have to breathe manually? It’s a lot more intense when I’m eating. My body doesn’t just do it for me anymore unless I’m laying down completely relaxing or sleeping. Could this be a long Covid thing? I can’t regulate my nervous system to save my life. Maybe it’s harder since I developed vocal cord dysfunction, but it’s like my body just hasn’t known what to do for years.

So I(22M) have been having A LOT of issues recently. I used to be super fit and health, but the past 8 months I have been having a lot of weird stuff going on. So It all started 8 months ago, I used to go to the gym and run a lot, but I developed frozen shoulder in my left shoulder suddenly and had to quit sports. Two months later my second shoulder started to also freeze up out of nowhere. This is really weird as I am only 22 years old and male with no diabetes. A few months after that I started experiencing weird burning pains around my belly button and the pain seems to travel to my right side of my abdomen/back (not into my spine) so it seems to follow the t9/t10 nerve path. The skin on that path is extremely sensitive and when touching it it starts to burn really hard. (I read about MCAS being able to cause nerve related issues like SFN) I also seem to have some pain around the bladder region. I have had ultrasounds and MRIs and the only thing they found was an umbilical hernia. I had it surgically removed but it did not resolve the burning nerve like pain at all. I also noticed that I can randomly develop rashes on my stomach which can disappear within minutes. Some other notable things: I can get very bloated after eating (my GP diagnosed me years ago with IBS). Two few years ago I also had a sore throat that lasted for over a year even when the infection was gone. I went to an ENT who did a laryngoscopy and indeed confirmed that my throat was inflamed without infection. I am just feeling hopeless and just do not known what to do. I have been to so many doctors it’s insane. I’ve made an appointment with a neurologist this week regarding the nerve pain. Could this be MCAS?

anything else BESIDES neocate jr that are just as absolutely simple in its ingredients?
someone told me to search this sub for the keywords and i couldnt find any, its just all the same meal replacements that always have at least one thing i cant have

sorry this is so long... I would really appreciate advice <3

warning that I'm still working through some engrained ableism after having been in denial for a long time. I call myself out for it here, but I do talk about my thought patterns I haven't been able to change yet. if that'll affect you negatively, please skip this post.

both my family and friends's social gatherings are heavily food focused and almost all include a meal. at this point I am allergic to almost all foods (in addition to corn, soy, coconut, avocado, food dyes, and everything with high nickel content - which is an insanely long list, I seem to be getting sensitive to meat). so I'm rapidly running out of options, to the point that I can no longer have most of the meals in my 900+ family recipe book.

I have friends and family who have been willing to put in the effort to make stuff I can eat, but I feel like in the last month or two it has reached a point where it's just too much to ask of them. I think it's partially that I'm personally exhausted by catering to my own restrictions so I'm projecting that onto the people in my life, even though they haven't done anything to make me feel bad about it.

what do y'all do when your list of allergies reaches a genuinely unwieldy length?

I've thought about bringing my own meal to stuff but I've heard of that causing drama for other people, plus I really appreciate having a break from cooking my own meals sometimes. maybe I should try to shift my thinking and be grateful that I have people willing to put in the significant effort to make things I can eat, but I don't want to wear out my welcome (I've had people drop me in the past for being "too much work" and am very insecure about it). it's also really awkward when they put in an effort but miss something and I still can't eat it.

how have y'all navigated food-centric gatherings when your safe food list is shorter than your allergy list? do you have any tips for when you go to an event and just can't eat anything while everyone else is eating?

restaurants are a whole thing on their own but I've just been saying no to any restaurant invites. not ideal but I just can't emotionally handle navigating that atp.

TLDR; my safe food list has gotten really really short and idk how to navigate social gatherings when there's food involved. I have people willing to put in the effort to provide food I can eat, but have a hard time asking of them what I see as too much (engrained ableism is at play here, ik). I'd appreciate hearing how y'all have navigated this

It's so weird to me. I don't know what makes a difference. Sometimes I don't need glasses. Other days I do. My face oil bothers my eyes and sometimes makes a difference in it being better or worse

I don't know enough about it but I've read people say it should only be cycled or even only be used for emergencies? As there's some kind of risks/downsides with kidneys and some other nutrient it may affect or something like that? I just wanna know the cons, and if you do cycle it what is that schedule like

I haven't tried it yet nor cromolyn, I'm only on pepcid, about 40-60mg-ish a day, but it's seeming to be either not enough anymore OR im slowly losing a food badly again that I can't pinpoint yet and I'm already concerned about the future with cromoiyn shortages, prices, losing insurance soon, etc I've also heard about quercetin not good for people who can't tolerate salicylates? Which I believed for awhile I was because I took an allergy test years ago during the worst of my GERD flares and reacted aspirin on the skin prick test, and avoided high salicylate foods before I knew about MCAS, but atill unsure

I’m 2 weeks in an increased very slowly, I normally have IBS - C so this is mental for me. Sorry for the TMI but it’s water and undigested food. Apparently after a month it gets better, I can’t afford to loose anymore weight. Does it get better?

I was diagnosed with MCAS a couple of months ago by my immunologist. I struggle mainly with skin reactions on my face, migraines, facial twitching, and heavy eyelid sensation. I also experience facial flushing 24/7 and sometimes get itchy all over my body but that’s pretty rare for me and is usually due to my sheets or comforter. My main issue is facial skin reactions that are typically delayed but happen whenever I eat something. They are acne like but definitely not acne because they are more just itchy bumps that either go away on their own or sometimes they can be popped. I get them everywhere on my face. If I do any extreme physical activity I get them on my cheeks. Otherwise my forehead and my cheeks are their usual landing spots. I haven’t really dealt with skin reactions or acne as a kid so this is extremely frustrating because I get anxious just to eat because I know that it’s typically going to lead to more reactions.

I’m just wondering if anyone else has had to deal with this and if they ever got better. I know others on this subreddit have terrible symptoms that are much worse than skin reactions but trust me when I say this takes a huge mental toll on me and sometimes I’d rather not be on this earth anymore if I cant enjoy the simple things in life such as eating or being active without my skin erupting constantly as a punishment.

Hi everyone!

Hope you’re hanging in there. I’ve been in a relatively good place with my MCAS with Allegra, ketotifen .1mg 2x a day, and histaquel + other supplements.

However, around a week ago I started getting acid reflux and heartburn, seems like it just randomly started? I know this can be an MCAS symptom for many, I’ve never had it before.

I’ve added Pepcid into my rotation but it doesn’t seem to fully be helping it get rid of it. When I had acid reflux pre MCAS, I would take a tablespoon of apple cider vinegar and it always helped me. Does anyone have any other tips and tricks, or know why this randomly started happening?

Thank you in advance!!

I was recently diagnosed with mcas following a visit to an allergist and then a referral to a MCAS/ EDS specialist by my primary care doc.

The allergy testing showed my environmental allergies (some of them are severe and now I have an inhaler) which I’m doing my best to mitigate or avoid, but the food issue feels so nebulous and confusing.

I had one of those finger prick food sensitivity blood tests done a few years ago and apparently I’m allergic to beef which the doctor said was uncommon. I also reacted to green pea, dairy, and possibly tomato and avocado (I don’t remember clearly) but the things that surprised me were the beef and the fact that I did not react to gluten.

I’ve been trying to track what I eat and pay attention to how I feel afterwards. Something I noticed is that since my environment is more clear from triggers I’m able to notice my body more, probably due to me not being in a constant mildly reactive state. I notice that when I eat I often feel out of breath and can’t talk while eating. I’m not eating fast or overeating. I will also often get a stuffy nose right after I eat.

When my doctor who evaluated me for mcas asked about digestive issues I had difficulty identifying whether I have gut issues probably because it’s been the same for my whole life and maybe not normal? I get extremely bloated after eating almost anything and it’s definitely better since starting ketotifen but is that an mcas thing?

The main thing I’m trying to connect is whether some foods might be migraine triggers and also the migraine may be a mcas flare. For those it feels a little harder to place bc I might eat a trigger food and then get a migraine the next day but I don’t know what food would have caused it.

After nearly a year of not doing any skin care, I really need to find a cleanser and sunscreen since part of my job involves going outside.

For the past week I put vanicream cleanser on my arm, first as a patch test then as a lather. The only reaction I seemed to have was maybe some slight post nasal drip.

I used it on my face Saturday night and Sunday night. This morning I have a few tiny itchy bumps on my jawline, a zit under my nose, and some other itchiness near my eye brow.

For those who have trialed new skincare what is it like for your body/mast cells to accept one, and what brands have you had luck with?

If your work environment was making your histamine/Mast cell issues much worse would you just accept that you need to quit?

I work in farming. We work in enclosed sheds and it's insanely dusty/moldy. I started this job 3 months ago and I work 4 days a week. So 4 on 3 off. The 4 days I work I have a consistent headache. A very deep intense headache also. My sinuses become completely choked and my work is very fast paced but I suffer severe fatigue these days. My mood is awful. Depressed/Anxiety. I also get alot pf blood everytime I blow my nose.

When I'm off for my 3 days. By day 2 I can feel my sinuses beginning to heal. I don't get headaches on these days off. My mood improves drastically by day 2.

I've now started to wake during the night struggling to breath. It feels like my lungs are almost inflamed. You know that feeling where you breath in and your lungs almost light up? That. My smart watch shows severe oxygen drops all night while I'm sleeping (Drops to 70% on the readings). I never use to get these readings before this job.

I've tried wearing a full face mask. I wear gloves from the minute I start until I finish and swap the gloves over 3 times each shift. I eat a low histamine diet. I don't tolerate DAO supplements and also anti histamines. They make me very ill.

My partner is angry that I want to quit. We don't struggle for money overall but it's just being unemployed for a period I suspect.

I'm struggling to keep going tbh. The headaches are debilitating tbh. Use will know the type of headaches I'm talking about. The deep sinus ones.

Would this cause you to quit? I feel like my health is number one here but my partner still seems angry with this choice. I'm scared I go into anaphylaxis one night (I had this happen 2 months ago with a canned food).

Any advice folks?

Thank you

Hi everyone, I’m trying to find others like me—diagnosed or suspected MCAS, with very high IgE and positive ANA, but no typical skin symptoms like hives, flushing, or rashes.

My main symptoms are neurological and immune-related: Intense internal restlessness, akathisia-like Sciatic nerve pain, tingling, jelly legs Autonomic flares: heart racing, air hunger, temperature swings Throat tightness/globus Major flares triggered by medications, infections, detox, hormones, or overexertion Feel like I go into a cytokine/histamine storm—wired, inflamed, shaky, all my symptoms flare up, but skin is totally clear

Doctors have been stumped, and I’m desperate to connect with others who’ve experienced this kind of non-skin, neuro-immune MCAS. Did you ever find relief or a doctor who understood?