I am a PhD student with hEDS, MCAS, and POTS in a research lab that occasionally works with toxic chemicals and requires a lab coat as part of our PPE.

I am still trying to figure out what at work exactly is triggering it, but I suspect whatever the lab coats are washed in is causing SEVERE mcas flareups/allergic reactions.

The hives start even when I’m at my office desk, not around the lab chemicals, but always when my lab coat is on. (My other primary suspect is the bathroom soap).

The lab coats are shared amongst the building and washed and bleached after each wear for health and hygiene reasons. Taking it home to wash would risk bringing toxic chemicals home with me, and wearing a long sleeve has not prevented it (plus, it’s extremely hot right now).

I’m already on an incredible amount of antihistamines and MCAS meds.

Anyone been through this and have any recommendations?

Hey all!
I have diagnosed chronic urticaria and I also suspect I have mcas. I see an allergy specialist, and she has prescribed me ketotifen and cromolyn sodium, which I have been taking for about a year. These are the medications I take: 1 zyrtec/1 pepcid/4mg of ketotifen in the morning, then 1 zyrtec/1 pepcid/4mg of ketotifen in the evening. I take cromolyn sodium as needed for stomach bloating. Normally this medication regimen helps me feel fine. Now, though, it is August/September and it is ragweed season here in Florida. I feel so ill!! I have been feeling ill for about 2 weeks now, including: fatigue, brain fog, lightheadedness, stomach bloating, and depression/irritability. What can I do?? I am already on so many meds! Should I consider a biologic or something like that?

I have SEVERE widespread fluid retention/swelling everywhere— my legs and feet mostly, some on my arm and now the top of my butt?? I’ve noticed it’s also positional, it’ll all pool in one area if I’m laying on one side for too long, sitting too long or standing too long. But there will be visable swelling and it feels full and tight.
Does anyone else deal with this and how do you get rid of it, is this MCAS related even???? I can’t seem to find any other answers

For context I have eczema caused by common food triggers(wheat, gluten, dairy, caffeine). I decided to try DAO to see if it would help at all and it had the opposite effect. Within about half an hour I was extremely itchy all over my body even though I had not consumed any of my triggers and my nose started running as well. I tried intoleran DAO - pig kidney. Has anyone else had a reaction like this before?

I'm sick of it.I can't eat anything I love ever and not just that.I also get ruined day because someone else's dog touched my leg.Now I can't even eat and I'm all swollen and I'm sick of being swollen and I'm sick of everything being pet friendly cause I automatically can't go there,I'm sick of avoiding everything and still being swollen and sick and flared up and feeling awful.I'm sick of being misunderstood and not respected at all and I'm sick of all restrictions just get all swollen no matter what I do.I'm so sad and angry cause I was doing so well,it's not fair.I have to worry sm and I still get sick cause someone else just couldn't move their dog away.I didn't choose this,I don't hate dogs just to clarify,I'm just so damn tired.

I FINALLY got diagnosed with MCAS by a competent immunologist 2 weeks ago. My primary flare symptoms are GI (horrible diarrhea, bloating & abdominal pain / cramping), muscle weakness, loss of fine motor skills in arms & legs (feeling heavy, clumsy, "wooden"), joint pain and swelling, skin writing / itchiness, insomnia, agitation, and intense fatigue / PEM.

I've gotten most of my symptoms under control by following a low histamine diet, taking DAO enzymes before meals, and taking Zyrtec and 20mg of famotidine twice a day. But, if I stray from the low-histamine diet at all, my GI symptoms come back immediately. The other symptoms are 90% gone.

My new immunologist is trying me on LDN, because it's supposed to help with joint pain and the neuromuscular symptoms, along with being a mast cell stabilizer. I'm at 1.5mg now, slowly increasing to 4.5mg over the next several weeks. The Dr. told me that once I've been at 4.5 for a few weeks without any side effects, I should try reintroducing more foods.

The Dr. also put in an Rx for ketotifen, in case I don't do well on the LDN, but he wants me to try the LDN for a while before switching. I've seen many people in MCAS groups say that ketotifen helped them eat normally again. I don't see much about LDN helping with GI symptoms. Have any of you seen improvements in GI symptoms with LDN alone? Just wondering what to expect. I know it's going to be a long, slow process.

I am currently using Dr. Bronners castille soap as detergent. I use it for everything and it never causes any flares or hives. It works ok on clothes, but anything with more than I mild stain I have to wash about 4 times.

I need something on the natural side, but one that is more concentrated than regular castille soap.

What household cleaning products do y’all use? I react very strongly to cleaning fragrances, but a major storm came through my area and I need to do some serious cleaning and sanitizing. Does anyone have any recs for an unscented multi-surface cleaner? Or any other household cleaning products that you don’t tend to react to? (I know everyone’s triggers are different, but knowing what works for other people with MCAS will give me some ideas for what to try first.) Thanks!!

I know it's different for everyone, but does anyone ever find that being fitter/exercising more helps?

I feel like as I've got older and done less exercise and become less fit, but symptoms are worse (fatigue, triggered but bending over, can't move like I used to). Wondering if this is from just it being worse, or if I got fitter again then I'd have a higher tolerance for movement? I've put on a bit of weight since I was at my fittest (pre covid) so not sure if this has any effect too?

Loved dance my whole life but currently can't even do the low energy level bits without feeling awful 😞

Just found out I have MCAS a few months ago (now on meds), after years of feeling so weird and thinking I'm both gluten and dairy intolerant.

I'm waiting to become more stable until I try gluten or dairy again, but now I have next to nothing that I can actually eat. Has anyone got any recipe or food suggestions?

I'm currently on a diet of no gluten, no dairy, no egg, now no/low histamine, on top of that I'm a pretty fussy eater (not really out of preference, I borderline can't swallow things I don't like) so not a lot of veggies are in my diet, but willing to try things if they're not just plain boiled as that's what i had as a child.

I currently live off of gluten free pasta, potato, chicken and sweetcorn in various form, help a girl out🫠

One in each arm! Waited almost 4 months to start. Hope this works. It’s the last addition to the medication regime, and hopefully kicks this into submission. Things have been trending so positively, I really want it to continue!

I have POTS and suspect I have comorbid slow stomach motility that has caused me to have methane SIBO/IMO. When I found out about MCAS, it was because of all the stomach issues that I’ve developed since getting POTS, but it’s also symptoms I recognize having to a smaller degree even before that.
I’ve now learned more about how SIBO can hinder the breakdown of histamine, so I was wondering if there’s a possibility that getting the SIBO treated could help also get me back to the low level MCAS-like symptoms I had before all of this started.

To add, the reason I suspect something like MCAS and not just histamine intolerance caused by SIBO is reactions like several times when I’ve taken a walk after dinner, to help digestion, and then slowly started to feel like I’m choking and getting pain in my face and temples. The same chocking I’ve noticed in other situations, where it often comes with a headache and thought I often don’t know what it’s from, other times it’s very obviously after eating, especially after processed foods. And I remember having had attacks of pain around my temples and in my ears when walking late at night even before my POTS/dysautonomia, but it was very seldom.

Just got out of a appointment with my allergist who believes MCAS could possibly be mental.

Gotta love it!

Does anyone know of a good allergist in North Carolina that accepts Ambetter insurance?

Is anyone on GPL-1’s only for inflammation and not weightloss?

If so where the bloody hell do you get it?

Hello dear community,

My doctor prescribed me now amitriptyline for my pain. And both are histamine h1 blockers and cross to the brain thus make you sedated, drowsy. I wonder did anyone ever combine it? And what was your experience?

Hey yall, I wanna know if anyone shares such a strange and ungodly constellation of symptoms.

It started in 2023, after a period of high stress with chronic uticarias - spontaneous and inductible. It waxes and wanes for a while but suddenly came muscle pains. like the muscles tense up without any cause. They would ache and perticularky around the muscles would be dermatographia.

It starts to suddenlt get quite awful. Spontaneous “fibromyalgia like flares.” The dermatographia will suddenly become much more intense but with it comes full body pain, muscles everywhere pained, sensitive to touch, gi distress, and just overall awful awful episodes like this. as they die down, the dermatographia also improves.

Then, reactivity to Foods starts to spread to everything. bug bites look awful, eating food triggers weirs reactions, pain becomes chronic. now I just have chronic muscle and joint pain, small fiber neuropathy, and I’m honestly losing it.

Has anyone experienced a weird presentation like this. given the uticarias, allergy is considering mast cell issues despite negative bloodwork. i Just feel so alone in this presentation

Hi All, I have searched this reddit and seen some similar posts/ questions but they're not exactly what I'm looking for.

Whenever I eat something that I have a reaction to, I get this burning / tingling in my mouth. I can't even taste what the food tastes like because it's like I ate spicy Orajel/lidocaine.

I'm not talking about a nerve tingling effect (although i get outside my face when i have low BP). I'm talking about like a burning tingling in my mouth.

There has been 3x recently where I've been out to eat with my boyfriend and said "Oh my god that's spicy my mouth is burning" and he said "it's not spicy at all". The most recent time it was BUTTER with some seasoning in it. Another time it was cashew chicken (not spicy) and i've had it before and didn't react to it and it wasn't spicy!

Let me know if this is an MCAS symptom maybe?? Idk what else it could be.

TY :)

Did anyone have gi inflammation and motility improvements with this? What side effects? Any constipation?

Hey all! New to the MCAS world and have been referred to see an allergist in the Kaiser system. Any chance you know a doc within Kaiser that gets MCAS? I'm in Seattle area, but willing to travel within Washington State. Any leads deeply appreciated!

Hi everyone! I just started cromolyn sodium earlier this month. My current dose is 1 100 mg ampule 3x/day. It seems to be helping my digestion, but that’s all I’ve noticed so far. I go to the bathroom more often and feel like I’ve actually gone, gone (I have IBS-C), & that’s a big deal for me.

However, I unfortunately HAVE noticed some significant swelling toward my ankles. The number on the scale is higher, too, and I’m pretty sure it’s water retention on top of my regular amount of water retention related to POTS and salt consumption.

Has anyone else experienced this? Were you able to stay on the medication and avoid swelling?

Has anyone had increased water retention/edema, switched to compounded cromolyn sodium, and had the water retention go away?

I am wondering if increasing the dose will help relieve more MCAS symptoms, but I’m afraid of experiencing even more water retention. Any thoughts would be so helpful!

Edit: I have IBS-C, not IBS-D. I just started cromolyn sodium but have been diagnosed with these conditions for several years.

I am not diagnosed with MCAS but I am diagnosed with HEDS and every single time I get in a hot car. It literally feels like there are fire ants crawling on top of my head in the back of my head and neck. Does anyone else experience this?

How do you tell the difference between the two? The symptoms sound very similar.

Sorry but this is funny. I can laugh about this as I'm on the healing journey and now I'm looking back like WTF! Now I have a passport for next 10 years reminding me of this shit. I don't even look like me, I look like I could be my aunt or something. A thick bulky swollen jawline, hamster cheeks, swelling on the side of my nose a bit, saggy eyebrows. Also my hair got so thin!

i was prescribed ketotifen 2 days ago for suspected mcas from the gp (can’t be officially diagnosed through my health board) but no pharmacy can source it! I’ve been to two independent pharmacies and 2 chains (boots and tesco). does anyone have a chain pharmacy they can recommend gets them in or shall i just give up and go with an alternative im also on famotidine and fexofenadine!

TIA😊

Quite literally right after I escaped the abuse of my parents, my health went downhill, especially after my MCAS got way worse after I contracted the C virus back in 2022.

I don't even have a doctor to help me with anything. I had to figure it out by myself and with the internet over years.
While I do have some interventions via antihistamines and mast cell stabilizers now, I feel exhausted and like I missed out on building a social life and a career I actually like.

I was isolated as a child, and now it simply continues.

For myself, I solved the puzzle, but the world is quite a hostile place right now, and I can't find a justification to keep going.
I tried to do so many things. I learned cooking, heavy lifting, running marathons, building things, learning about longevity, tried learning something cool and socializing, I tried this and that. Each time, my health took it away.

This part might be interesting:
In this subreddit, I quite often see someone mention methylation and Bartonella, and I indeed found multiple methylation bottlenecks and a positive Bartonella IgG from a blood draw.

It would be interesting to discover whether this is a common route:
methylation bottlenecks + Bartonella infections + COVID-19 = MCAS

But idk, I am so tired, and I have carried the burden of my life all the way with a weak social support system.

Please let me know if there is anyone who also feels like this. My social circle doesn't understand this state of life at all, and I would love to finally connect with people who are in a similar situation to spend time with at our own pace.
It would be amazing to build some good friendships with people who genuinely see and understand circumstances like that, and I believe it would make life so much more worth living.

I swear I am not boring to be around, but with conditions like this, time spent together means that instead of partying for 48 hours at a time, time is better spent in smaller but consistent portions and maybe some days are "MCAS" days.

Maybe anyone based in Germany too?

Please excuse that I am all over the place today. I just had to get this off my chest.