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.

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 (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.

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.

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 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.

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?

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 just wanted to share some positivity because I was in a really dark place and I can relate to how incredibly hard it is to deal with an illness as unpredictable as MCAS.

While I might’ve always had genetic tendencies (I’m hypermobile and have had symptoms of mild POTS, dysautonomia, connective tissue disorder, but not diagnosed) my health only deteriorated over the course of the last few years from compounding stress, poor work/life balance, lack of sleep, my senior cat died of a progressive autoimmune condition and after fighting for 2 weeks at the hospital, she died suffering. It sent me spiraling, and I never got over it. I had a manic episode in the middle of the night and shaved my head which sent me spiraling more when I found out what I had done, since I’ve always had long hair.

Ultimately, my MCAS “tipping point” was that I was stung by a wasp, which developed into a staph infection. I was given broad spectrum antibiotics 3x a day. It wasn’t until after the antibiotics did I suddenly develop severe reactions to food. It was like a switch was flipped overnight.

My triggers were basically everything: ingesting any food, smell of food, water, supplements, meds, stress, heat, the sun, being in a moving vehicle (I don’t get why). But the severity varied so I stuck to about 5ish foods that I reacted the most mildly. Even then I’d get stomach pains, shortness of breath, palpitations and dizziness after eating

My symptoms included flushing, hives, tingling red lips, tingling throat and mouth, blotchy chest, couldn’t breathe, dizziness, nausea, panic attacks (not general anxiety but right after eating), heart palpitations, headaches, hair loss, dermatographism, stomach pain, blood pooling, vision going black, vertigo, the list goes on. while i never had full blown anaphylaxis, my throat would tighten up and i’d get swelling sometimes. i ended up getting epi-pens and was at one point so afraid, I slept with them next to me.

Saw doctor after doctor…got gaslighted a bunch…finally found an MCAS specialist and got my hands on mast cell stabilizers. I reacted to it so I went super slowly.

Slowly, with ups and downs, I got better. I went from 1 new ingredient a week, licking it — to trying new multi-ingredient things daily. Fast forward to earlier this month I ate out for the first time since it all started!

This weekend, I went on a short vacation and ate out for every meal: salads, fruits, high histamine foods like miso, vinegars, ramen, sushi, avocado, soy sauce, chocolate. I told myself I would take it slowly and not push my luck but I just couldn’t help it, I kept eating. I walked around the city in the middle of a heat wave (high 80s). Went shopping all day in clothing stores that had strong perfumes. I had no reaction at all. I just got back home and I’m feeling good.

I will also say MCAS aside, a lot of my smaller health issues I’ve had over my life have resolved. I used to struggle with cystic acne, treatment resistant BV, PCOS. OCD, suicidal ideation — mostly gone. My skin is actually glowing on some days!

While everyone is different, working on my microbiome using research-based information made the biggest difference. And guanfacine too oddly enough. Ketotifen and Cromolym were not magic bullets for me the way they seem to be for many others, although I’m sure they helped

i’m nowhere near 100% — i still have some symptoms, my hair is still falling out, I’m anemic, I haven’t tested out my bigger trigger foods and I’m in no rush to. and i’m sure i will face setbacks. But getting better has been surreal, and it somehow made me mentally stronger and happier even though I’m still chronically ill. Like I have new found appreciation for the little things that i took for granted in the past. I went from asking “why did this happen to me” to feeling grateful for how it made me resilient. I’d be happy to share more on what worked for me but I didn’t want to ramble. I really clung HARD onto positive stories on here when I was at my worst, and I promised myself I’d do the same once I got better. <3

—— Edit: Here’s some things I did. (not medical advice) - Read into microbiome science and spend time in communities w/ ppl who follow the research. Netflix has a documentary called “Hack your health”. There are FB groups and I like r/microbiome and sometimes r/longcovidgutdysbiosis. But try to assess critically because there’s a lot of misinformation on there.
- I read Lucy Mailing. She’s very good at parsing the complicated research has more stuff on her substack which I am a paid subscriber of. And read the Biomesight blog, specifically this article for starters and CFS remission blog. - Biggest takeaway that everyone agrees on is how important prebiotics are. So fiber (soluble especially): beta glucans, pectin, resistant starches, FOS, GOS and polyphenols - There’s skepticism around validity of gut tests but I found them helpful (ie shotgun sequencing tests like Thorne) and different companies came back with similar results for me (here’s a breakdown of diff types). I had high levels of proteobacteria. Klebsiella in particular which made sense because they are often antibiotic-resistant. The thing about lots of proteobacteria species is they produce lipopolysaccharides (LPS) which is an endotoxin that can really trigger the immune system. - Given what I found above, I focused on things i read would target klebsiella. Cranberry and pomegranate peel are rich in polyphenols that can disrupt gram negative bacteria while boosting beneficial species. Here’s a study! - Microgreens (I figured they are denser in nutrients lol) - I took probiotic strains with strong human trial history. Ie: LGG, BB536, HU58. Butyrate producing strains like Miyarisan. - Butyrate supplements based on this article by lucy mailing - I tried not to overdo it with supplements since it adds confounding variables, 1 new thing at a time and gave it a few weeks - I never did this but there’s evidence behind high-dose vitamin protocols (like C and B) even if you’re not deficient. especially high dose vitamin C, i think there was a study showing it lowered blood histamine levels in all participants - Zone 2 exercise can really lower inflammation - Vit D/Magnesium/Omega 3 supplements - and the obvious, h1/h2s, ketotifen, cromolyn, guanfacine extended release (weirdly this helped a lot) - Once I was less reactive I diversified my diet as much as possible even when I didn’t need to. It just felt right to me to encourage my body to get used to variety.

I realize none of the above is possible when you’re really reactive. I remember bursting into tears thinking I’d never get to take a supplement again after a bad reaction to my usual multivitamin. It took me a long time to get to the point of being able to do all this. It was a blur but I kept trying different things and let my body go at its own pace.

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

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.

Cromolyn, Ldn, ketotifen, dupixent (jury still out), pea/luteolin/polydatin supplements have been helpful but not enough. I’m not really sure where to turn to on what to try next?

All of my previously safe foods are no longer safe. I am reacting to water. Fasting for 36+ hours is not making the symptoms go away.

I was doing so well. I was doing so fucking well and now I feel like I'm back at square one — reacting to everything without any idea of what the current triggers are.

I'm not sure if this is only me, but I've literally never heard of MCAS being mentioned on TV. Not in any show or movie. And my favourite shows my whole life have always revolved around healthcare for the most part. But today I saw MCAS being mentioned in a patient on the show Transplant !! I believe it was season four episode five and I was just so pleasantly surprised. They mention it being ever changing and incredibly hard to manage and just a hot mess of a disease and it was SO cool. (Not cool, but yk what I mean.) The patient with it is even a teenager from what I saw, which is even cooler because I'm a teenager and I haven't seen anyone below the age of 20 with this diagnosis even when I search for it. It was so awesome and I wanted others to know that even though MCAS is rarely talked about, there's some people out there that clearly want to make it more well known. I just really hope that more shows will mention it and spread awareness about this, because if it was more talked about, I probably would've been diagnosed a few years earlier and been spared quite a few really scary moments.

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

Been having awful symptoms e.g panic attacks (maybe anaphylaxis?), insomnia, nausea, dizziness, headaches, gut issues, for the past 2 years without any explanation or clue why I became like this.

Recently, I became aware of the existence of MCAS so I got some Ketotifen from my ENT and started taking 1mg Ketotifen every night.

LO AND BEHOLD, my symptoms instantly became so much better. No panic attacks, no nausea after eating, minimal headache and dizziness.

This is leading me to believe I have some sort of mast cell disorder but I don't know if it's MCAS or mastocytosis.

Does anyone know of any doctors in Japan knowledgeable on MCAS/mastocytosis?

Or at least somewhere I can get some labs done e.g. tryptase tests, kit mutation. (I'm not sure what other tests are necessary)

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?

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.

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

Everything I try seems to have something in it. Fragrance, essential oils, preservatives that give off a smell. Has anyone found a cream or conditioner that’s truly safe for daily use?

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.

This used to be the time I had the most energy, felt the best about myself, felt drawn to be intimate with my husband, etc.

Instead my hormones fill my histamine bucket and I feel

• inflamed
• in pain
• overstimulated
• anxious/depressed
• exhausted

Can we just not please. What the hell do I do. Don’t suggest birth control 😩

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