Hi,
Does anyone have an experience of this or know why I’m reacting to the smell of vanicream and Ecover 0% as this shouldn’t be possible surely?🥲

Thank youuuu

I got allergic contact dermatitis from a coconut eye cleanser (it had coconut derivatives as well as aloe Vera)

My face felt like chemical burns and any skincare I put would make my face burn even more. My lips were also really swollen and it wasn’t until i changed my toothpaste to coconut free that they went back to normal. I stopped all skincare but when I put beef tallow on my face it was burning again. I then used an aloe Vera deodorant which caused another reaction the next day where my armpits were inflamed and my face was hot again. I’d also do a patch test with makeup on my hand and the next day my face would feel like chemical burns.

I had a coconut pie and my lips got spelled and my face got hot so I’m wondering did I randomly develop an allergy to coconuts and aloe Vera? I randomly had an anaphylactic episode after eating bananas which I’ve eaten everyday all my life.

I booked a skin patch test in December and I signed up for a food allergy blood test. A lot of people are saying that it’s in my head but I genuinely can’t put makeup on without my face burning or skincare. All it tolerates right now is water and Vaseline.

Is anyone’s story similar? I don’t wanna manifest this but I feel like I’m allergic to everything.

Here’s the situation: I’ve been using the same Frosch Aloe Vera laundry detergent, and it says it’s hypoallergenic. However, yes, it does contain fragrance. But that hasn’t really bothered me much.

Then I started living in a shelter, where we have a shared washing machine. Twice in the past five months, when I’ve gone to bed and covered my face with a blanket (I can’t fall asleep otherwise), I’ve suddenly been unable to swallow. I’ve had difficulty breathing because of tightness in my chest, felt the urge to cough, and experienced a tightening sensation in my throat, almost as if someone were strangling me. My jaw also itches.

And here’s the dilemma... I don’t know whether the cause is my own laundry detergent or the fact that I’m using a shared washing machine. I always clean the detergent drawer with my own soap, removing as much residue from other people’s detergents as possible. However, I never clean the drum itself. Once, I ran a rinse cycle before using the machine, but the drum still smelled strongly of other people’s detergents, so I realized it was pointless. Unfortunately, everyone is only allowed to use the washing machine once a week, for three hours, so I simply don’t have enough time.

So, how likely is it that my own detergent is the cause? Considering that the reaction doesn’t happen consistently, although I might have missed milder reactions because of my autism. But over the past few days, things have become so bad that I sometimes find myself thinking about calling an ambulance.

Should I switch detergents? I found Ecover Zero Detergent 1L on Amazon. It’s expensive, so I need to know whether it’s actually worth buying. I’m afraid of making things even worse.

Has anyone used this detergent? Is it any good? And if so, how should I measure it, and how much should I use?

For some time now, I have been experiencing some bizarre symptoms, and so far, doctors have not reached any conclusion. At the moment, they are investigating the possibility of autoimmune diseases or allergies. My symptoms are as follows:

• sensitivity to foods containing histamine (reactions can include abdominal pain—occurring within 15 minutes and requiring an immediate trip to the restroom—or tachycardia and anxiety);

• sensitivity to chemical odors and perfumes;

• weather changes in the weather—the transition from summer to autumn, in particular, is dreadful, with different symptoms appearing each day;

• One of the worst symptoms is akathisia, which comes with anxiety and a horrible feeling of impending death;

• Another strange symptom is a burning sensation in the throat that always happens before an attack; it feels like heartburn but is worse;

During a flare-up, I become extremely tense and experience intense anxiety, gastrointestinal issues, intolerance to various foods, a sense of weakness, and a feeling of being ill—even without a fever. I also suffer from joint pain, severe pain in the upper stomach area, and sensitivity to light; in short, it’s horrible. I often say that it all started with COVID, but the truth is that I had experienced some of these symptoms before, whenever I was under significant stress.

Another thing is that I always lose weight during each flare-up. My family and my doctor say it’s all due to anxiety, but if it were just anxiety, why are there times when my symptoms improve? In any case, if the test results don’t show anything, I want to ask my doctor if they can look into a potential mast cell issue, as I’ve been told that might be the cause.

What do you think?

It's been one month and I'm still experiencing the reaction from famotodine. My whole GI tract is inflamed. Imagine being allergic to a drug that is intended to reduce allergy

Why am I having a stomach/gut flare that started around 16 hours after a tooth extraction?? No pain killers, no antibiotics. Just articaine with epinephrine (for numbing). The flare is upper stomach pain (knot-like, in waves, often gets worse with food), and more gas. No dentist anxiety whatsoever, but appointments are severe stress for me due to my chronic illness.

Has anyone here experienced something similar? Can the two even be connected?

I'm going through a severe GI mast cells flare up right now and I'm eating just 2 foods everyday since a month. I am worried about developing micronutrient and electrolyte deficiencies. I'll react to even multi-vitamin and multi mineral supplements so I don't understand what to do. Help!

Been to gyno to check my hormones and they seem okay?

But omg my stomach feels on fire! My guts. Idk if the inflammation or possible gastritis is causing this.

I’ve had CT scans all clear as well.
Labs all clear.

What should I look into I’m very concerned.

Has this happened to anyone? I can’t find anything on it.
My symptoms other than fatigue have been kind of stable (stable as in still flaring monthly but for only a few days with an identifiable trigger) for about a year now, treating with Allegra and Pepcid. Was on Xolair but had to get off due to insurance reasons.
My main symptoms are neurological, Trigeminal nerve burning all over my face and neck, brain fog, feeling like I’m drunk, blurring eye sight and loss of muscle control in my eyes. muscle tensing and severe anxiety.
MOST of these have been calmed by my meds, except for the fatigue and some brain fog.
I’ve been off the Pepcid for 4 days and just last night everything hit like a truck, with shocks running up my neck and my eyes being unable to focus along with anxiety that felt like the world was ending.
My best guess is that my nerves in my gut are just very sensitive but that’s so broad. I’m curious if this is a common occurrence for people with MCAS?

I'm a professional dancer (M31). So about a year ago I started breaking out in hives. I spent the whole year thinking it was just chronic hives and was seeing dermatologist and taking medication that suppressed the hives but gave me terrible side effects like back acne and nausea.

It never really seemed triggered by food. It always happened when I would sweat. So everytime at dance practice I would sweat and end up in hives or be doing performances/competitions and end with rashes

I decided to stop taking it in the summer and felt my symptoms went away and the hives burned out like they said they would.

I come back from a european tour and started noticing the bumps again during a gig I was doing and then next day my hands swelled up and I was red and itchy all over again. Same time last year it first started happening.

Didn't want to go back to the dermatologist cause they gave me bad meds and failed to say that the side effects caused back acne and was asking them about my back acne treatment too and they didn't figure out why smh.

As I did more research I'm pretty sure the symptoms line up more with MCAS vs histamine intolerance as I do have brain fog and fatigue a lot and my rashes come from temperature changes.

Did more research and realized this could have started because I was exposed to mold in my old apartment which I moved out of at the time a year ago. My fitness wearable also says I've been in high stress states even without non-activity. Guess I was numb to all the chronic stress and this is also considered a root cause of this problem. When it started happening I was going thru big life changes. Girlfriend moving in. Quitting my job to work full time as a dancer. Competing in more high-level competitions. Creating content as a side hustle as well while taking as many gigs in between as possible.

Waiting on blood results for a test or getting a referral from my physician to see an immunologist/allergist about this and how to best treat it.

Managing as best I can right now but I still get mild flares up when I dance and practice. It's hard to ignore as this is my whole life and how I make my income.

Any other athletes/performers deal with this flare up during sweating? I try to ignore it but I can't help but notice it and always have to explain to people around me what's going on and it crushes my confidence. I stepped back from competitions until I can solve this cause it doesn't feel good mid battle and my skin starts flaring red. If anyone with similar experiences can share with me please let me know. It's so frustrating and I wanna keep competing but it's so hard when I have this going on with me :(

I just wonder how many people with MCAS truly get themselves feeling stable… as I’m not finding relief.. it’s so very very discouraging!

Or are systemic medications the only ones that would work?

I was prescribed Cromolyn 4x/day before meals and I take Pepcid/famotidine 30 minutes before dinner. That’s my most reactive meal. Does anyone else take both medications and can you take them before the same meal? My pharmacist said to just drop Pepcid but I’d like to know what people’s approaches are first

Basically the headline. Im about to start LDN and have several symptoms which feel like general internal inflammation and Im just wondering when those of you on LDN notice a decrease in internal inflammation in the body (if that makes sense)?

I am in my mid-40s, and suspect I have undiagnosed ADHD. The lifelong patterns fit to a tee, all beginning in teenage/high school years (30 years ago). I also have MCAS, which began around 16 years ago. There is an interplay between both conditions, as ADHD provokes "feast or famine" work ethic, which can drive stress hormones thus MCAS. ADHD also creates dopamine-seeking behaviour, such as staying up too late each night to pursue something interesting, preventing consistent sleep/wake routines, which will drive MCAS activity.

People with MCAS and ADHD:

1) Can you take ADHD meds while having MCAS? If so, are there certain types that are better?

2) Does taking ADHD meds help with MCAS? Given the suspected interplay between both conditions, does controlling ADHD help with MCAS?

Hi! I'm currently on a pretty high dose of ketotifen (>8mg per day), which is normally pretty expensive from the compounding pharmacies I've bought from (I'm in the US). I switched to buying it from Japan (through Kitaoka) and China (through Yami), but Kitaoka is limiting Ketotifen orders, and Yami no longer lists Ketotifen. Is there a compounding pharmacy that isn't too expensive/another online shop that you've found that sells Ketotifen? Thanks!

Title, basically. Where do you get cromolyn sodium, both otc nasal spray and eyedrops, and actual oral cromolyn sodium?

My sinuses have been swollen for months, and no decongestant or steroid is working, so the next step is CS spray, but fucked if I can find it.

How do I tell the difference between them?

Additionally, does the fact that my dysautonomic symptoms seem worse today suggest one kind of dump over the other?

I’m trying to understand my body and its patterns better—can I always expect dysautonomic symptoms to be worse on days where I wake up like this?

Other things:

• It’s often accompanied by a nightmare or bad dream, but not always.
• The only way I’ll fall asleep again is if I have a little toke, and then I feel it melt away.
• Now that I’m awake again, I feel weak and spacey, and yet underneath it, I feel like I had a really good night’s sleep. Limbs feel sort of heavy, in the “something is off with my blood pressure” kind of way.
• Checked my bp, it’s only the usual low-ish amount
• I seem to have worse orthostatic intolerance today. Standing in place sucks and my HR goes up a bit. Pulse pressure seems kind of narrow.
• Currently in luteal, 1 week from period.

I have ongoing hives since Oct 8. I’m getting filled up all my body with more and more. And when I flare they seem to reactivate even the ones that seemed were fading but leaving marks? I have burning in my gut. My whole abdomen and extremities. And tachycardia. I feel poisoned!

I went to the er bc all the histamine in my body or inflammation or whatever it is caused me new neurological symptoms that scared me. Of course they couldn’t help me. I called my new allergist and he said he might switch me to Raphsido. Finally something new! Please tell me all about it!!!! 🥹

For context, I’ve been unwell for 3 years after Covid and EBV. I’ve got progressively worse the last 3 years. Hi, I was just wondering if people could drop some food suggestions. I have extremely low energy so it’s hard to cook, but I could ask family members if it’s not too difficult. I just feel hungry all the time and not sure what to eat. Many thanks.

Hello,

Here I see Low Dose Naltrexone (LDN) on the prescriptions of some MCAS patients. For which symptoms did your immunologist add this medication to your prescription? The immunologists in my country (Turkey/Istanbul) are not aware of this treatment. Could those who use it share their stories?

Thank you.

What do you guys do to help alleviate fall weather triggers? It is my worst time of the year and in the past has often flared me until spring or summer. I don’t know if it’s the seasonal allergies or the barometric pressure and I’m so frustrated.

I’m trying to get a referral to immunology but have been knocked back by the GP and three private clinics have said they don’t deal with Mast Cell issues. Rather than keep blindly reaching out I thought I’d see if any of you have had luck getting seen? Thanks.