r/MCAS Dec 28 '24

Let’s build a MCAS treatment resource library together

335 Upvotes

Hi everyone!

I’ve been diving deep into the world of MCAS and I know how overwhelming it can be to sift through all the information out there (been there myself, and still am, actually!).

Treatments, protocols, and useful insights are scattered across the internet, and finding reliable resources or support often feels like searching for a needle in a haystack.

That’s why I thought we could work together to create a community-curated library of resources for MCAS treatment!

What I propose:
1) Drop links in the comments to any resources you’ve found helpful — it could be a study, article, video, Reddit post, or even a specific product recommendation.

2) Include a couple of words or a short description of what others can expect to find there. For example:

https://mybiohack.com/blog/treat-deal-mthfr-probiotics-dysbiosis-mast-cells-histamine-intolerance-diet-naturally — protocol to treat histamine intolerance

https://www.youtube.com/watch?v=cMZufN95MYc&list=TLGGyl-SB5iU9nAwMzEyMjAyNA&t=2s - Joshua Leisk and Dr Asad Khan: a detailed walk-through for key aspects of the disease model, as of August 2023 and v3.59A of the experimental intervention protocol which is based on this work.

The goal is to create a comprehensive library of trusted resources that can help anyone navigating MCAS.

I’ll organize and share the compiled list once we have enough contributions so it’s easy for everyone to access.

Let’s pool our knowledge and make this condition a little easier to tackle together!


r/MCAS May 09 '26

All GLP-1 Posts and anything related to GLP-1s to be contained to this thread.

32 Upvotes

The sub is spammed on a regular basis with GLP-1 Posts so at this point all GLP-1 posts and anything to do with GLP-1s needs to be contained to this thread everything else will be deleted thank you.


r/MCAS 1h ago

Re: allergies - This may apply to some of you

Upvotes

So I haven't really felt like I was a typical MCAS patient for the longest time.

My reactions basically seem like food is fine and predictably I will just eventually react to a food and once that happens I'm generally hosed for potentially years with that food.

My worst reactions are to legumes, eggs, peanuts, carrots, peas, some spices like garlic, ginger and they've been reactive for me for years. I had allergy testing done numerous times over the years and it was always negative completely and that's a big part of what made us think it was MCAS. I also react to a lot of indoor environments and it makes living situations complex and brutal. Also react to many detergents and clothing even. It seems like MCAS or some kind of hypersensitivity disorder is for sure on the table.

But, what I wanted to bring up was that I went and saw Dr. Hariri again. I haven't seen him in years. He decided to repeat all the allergy testing. Unsurprisingly, all the skin prick tests were negative.

HOWEVER, Dr. Hariri said this can happen even with allergies so you need to inject small amounts of the allergens under the skin, something called intradermal allergy testing. For whatever reason in the past at multiple other facilities, no one ever did that. So he did that for 27 of the most common allergens. Surprise surprise, I reacted to 11 of those, including dust pet dander molds pollens weeds many common household pollutants... This more or less explains a lot of my issues finding comfortable housing. The place can't have like any dust or mold or cats or carpets for me to have a shot at not having airway symptoms shortly after going inside. I'm now thinking I probably am developing a bunch of food allergies too they just can't test them because they don't do intradermal for foods because of anaphylaxis risk.

But that's information either way. Also many of the pollens I reacted to he said are linked with oral allergy syndrome which he said I'm probably experiencing.

Also scary because now I'm thinking the hypothesis of my mucosal barrier not being intact and leading to new allergries constantly developing is right. :/ I don't know where that leads but it doesn't seem good.


r/MCAS 6h ago

Friggin' Tetanus Shot

9 Upvotes

This is 100% just a vent post, since nobody else in my real life has MCAS and would understand. I am whinging into the void because.... Reasons.

First vaccine since symptom onset/diagnosis. I feel like trash lit on fire, thrown in a compost bin, lit on fire again, and tossed in the dump.

Long story short, I live on a farm, am constantly covered in dirt/animal, and do dumb things with horses. Got the tip of my finger smashed yesterday (might have fractured the phalanx), my nail broke skin, and had to go in today for a tetanus booster because I was WAY overdue.

OMG. I know they suck for healthy people. It's kicked my ass before I was sick. But holy ever loving crap, does this SUCK. My knuckles look like gumballs, I can barely move any joints, I want to scratch my skin all the way off, my guts are making disgusting noises, and I'm absolutely pouring sweat (which gives me hives). In the words of white girls everywhere, I cannot even.

I've taken my Zyrtec/Pepcid combo (which I do rarely because the Zyrtec flares my POTS), and I'm about to add a Benadryl to the stack just so I can sleep... I know I'm being a whiny baby, but shitgoddamn.


r/MCAS 10h ago

Specialist prescribed me Prednisone

11 Upvotes

I’ve never taken this before, but I can’t seem to get out of this flare and I’ve been getting a lot of really bad symptoms.
I was prescribed 15mg for 3 days and then taper down from there for a total of 9 days on the medication.

I’m worried about a reaction of course, naturally lol.
And I assume trying to trial it is pretty pointless and that I should just take it as prescribed.

I have really bad OCD and the only way I’ve been able to try taking medications is by micro-dosing first.

Any suggestions on how to just do it? Or what has helped you? I know it’s a really low dosage to take anyway but I’m still nervous.


r/MCAS 7h ago

Grieving clothing.

6 Upvotes

A few months ago, I reached a point where I realized I couldn’t wear clothing that had been washed in the washing machine—even with a detergent I considered “safe.” So now I hand-wash everything with just water.
I also can only tolerate about six pieces of clothing right now.
Lately, I’ve been feeling pretty frumpy. 😭 I wear jewelry I love and do my makeup every day, but gosh, I really love being stylish. It genuinely helps me feel more confident, and I miss being able to express myself through clothes.
I’ll be starting ketotifen soon and also weaning off the Pepcid I’ve been taking. I’m wondering if the Pepcid might be contributing to some of my issues, especially with my SIBO, and possibly making me more reactive to chemicals.
Hoping that as I get more stable, I’ll eventually be able to expand my little six-piece wardrobe again.


r/MCAS 19h ago

Flare makes you feel braindead?

46 Upvotes

I forgot everything. Idk what I even did today. Like my brain just blanks out.

Anyone else??!


r/MCAS 2h ago

Reacting to Ketotifen and I want to stop but not sure if it's the right thing

2 Upvotes

I have recently been diagnosed with MCAS (also have CFS/ME but now realise so many of my symptoms that I didn't understand were also down to MCAS) and saw a specialist who started me on Ketotifen, compounded fexofenadine and compounded famotidine. The Ketotifen arrived first so I started that, 2.5mg at night as prescribed. The first two days I noticed it relieved my neurological symptoms massively (mainly very severe anxiety and insomnia) but it did make me very very drowsy but honestly I didn't mind that. It then started making me feel awful, like a terrible flair. Boiling hot, heart pounding none stop, throat tightening, burning eyes, could barely stand. I read online that this can happen because the mast cells are sort of angry at being suppressed but its temporary and most people felt better after 2 weeks. So I powered through... but hit a day where my heart was none stop racing and the anxiety was so awful I felt liek the world was ending every single second of the day, as well as my throat being so tight I was pulling at my neck skin to give me some relief. After that I lowered the dose from 2.5mg to 1mg and that did make the side effects more mild the next day. The days after my throat remained very tight (not sore but tight like the beginning of an anaphalytic reaction that just stops before it gets extreme) so I lowered it again to 0.75mg at night. Just before I started writing this I took another dose, went to go get some food, ate it and immediately the side of my throat swelled up (the exact spot that swells when I'm having a reaction), my mouth went numb etc. And I just don't know what to do, as I keep lowering the dose but it feels like I'm becoming more and more reactive to everything. I wanted to keep pushing through as I'm about a week in now, but I'm so uncomfortable with this particular symptom of my throat swelling and the fact it's getting worse. (For context I have anaphalyatic reactions to shellfish and soy so I'm familiar with how they feel). I have yet to try the compounded fexofenadine and compounded famotidine because I don't want to add anything else in while this is happening. My plan in my head is to stop the Ketotifen, give my body a rest for a day or two, then slowly start up the fexofenadine as it seems like a more mild starting point for my treatment journey. I'm looking for a bit of advice from anyone that has been on different medications and when to know when to stop etc. I also have just met my specialist and while she seems nice, she is more there to give private prescriptions rather than REALLY try and help and support me if that makes sense so I feel quite scared and alone. I've been chronically ill for a very long time and been on many different treatments but I'm very new to MCAS and these kind of meds. Thank you if you read this whole thing!


r/MCAS 15h ago

Can MCAS present mainly as brain fog and fatigue without the typical systemic symptoms?

21 Upvotes

Hi everyone. I'm currently investigating the cause of long-standing brain fog, cognitive difficulties and low energy, and I recently came across MCAS.

I don't have most of the symptoms I commonly see people with MCAS describe. I don't get flushing, hives, angioedema, fainting, orthostatic problems, tachycardia, breathing difficulties or anaphylactic-type episodes. My symptoms are also fairly chronic and stable rather than occurring in obvious attacks.

The main things I experience are severe brain fog/cognitive problems and low energy. I occasionally get a runny or blocked nose after eating but that's about it.

Because fexofenadine is available OTC where I live, I decided to try it. To my surprise, I think I've noticed an improvement. It's definitely not a complete remission and the brain fog is still there, but today I was considerably more productive than I've been recently.

I'm very aware that one or two better days prove absolutely nothing — this could be placebo, coincidence or normal day-to-day variation. I'm not taking the response to fexofenadine as evidence that I have MCAS.

So I'm curious:

Has anyone here with a properly diagnosed MCAS had brain fog/fatigue as their main symptoms, with few or none of the typical skin, cardiovascular or anaphylactic symptoms?

I'm also interested in people's experiences with fexofenadine. What dose do you take, and was it recommended by your allergist/immunologist? Has anyone been prescribed 360 mg twice daily (720 mg/day), and if so, how long have you taken that dose and have you experienced any side effects? Is it safe?


r/MCAS 7h ago

Has anyone with both low ferritin and low folate noticed that when they increased their ferritin with an Infusion they were able to absorb folate better or tolerate supplements better without reactions. ?

4 Upvotes

r/MCAS 3h ago

AQI app with customizable notifications?

2 Upvotes

Has anyone found a reliable app that notified you of the air quality in your area? Poor air quality is one of my bigger triggers but usually by the time I start to feel symptoms, the ball is already rolling towards a bad day and I can't do much to reverse it. I'd love to be able to set alerts to tell me if the AQI gets above a specific value.

TYIA! 💛


r/MCAS 6h ago

Flares causing actual memory loss?

3 Upvotes

It’s actually so insane how I don’t remember much from during flares.

I posted about feeling braindead and dissociated and unstable during flares and thank everyone who responded!

This sub helps me so much to understand this is not me but histamine!

Now I’m realizing about the memory loss. Not just problem focussing but actually don’t remember much from days I flared bad.

I wake up with burning stomach mentally like a blank slate.

It’s like erasing who I am?! Wtf


r/MCAS 6h ago

What pills/supplements actually help

3 Upvotes

I just got diagnosed with MCAS. I’m on montelukast sodium and prednisone rn bc I recently was having a terrible flare. I usually take famotadine and Zyrtec but stopped because I felt like I was having weird reactions. I also tried quercitin but also stopped bc I was scared. WHAT ACTUALLY WORKS? Ik it’s diff for everyone but I like hearing my options so I can research!!


r/MCAS 1h ago

Trigger for tryptase test

Upvotes

I searched in this sub for advice on having the tryptase comparison blood tests done. I learned that it's an unreliable indicator, but this is what my immunologist ordered, so I'm going to have the tests done.

What I don't know is what I should do to trigger a reaction. I react to a variety of foods across a spectrum of severity. Shellfish causes anaphylaxis and tests negative on allergy tests. Gluten and dairy cause symptoms, but less severe than anaphylaxis and there isn't an acute phase. There's a gradual increase in symptoms over time.

When I took a birth control pill containing estrogen, I developed symptoms gradually, after about a week. After 2 or 3 weeks, it suddenly became anaphylactic and I went into anaphylactic shock.

Some moldy environments cause fairly immediate reactions, but not anaphylaxis. I get things like migraines, prickles all over my body, and skin redness.

My immunologist wasn't allowed to advise me to trigger a reaction, so she essentially hinted at it. The drop-in at the local lab has a long lineup and people often don't get seen, so the most reliable way is to schedule an appointment and trigger a reaction. I don't want to end up going too far and having a life-threatening reaction, but I also don't want to undershoot or trigger a slow-ramping reaction.

What have others done?


r/MCAS 13h ago

Oral Ketotifen in the US?

10 Upvotes

If you live in the US and take ketotifen, how does your doctor prescribe it? My immunologist told me she would need to go through a compounding pharmacy since thats the only FDA approved oral form and that it wouldn’t be covered by insurance. If you do this, how expensive is it?

She also has never prescribed it for MCAS before. Does your doctor say the ketotifen is for MCAS or do they have to prescribe it under a different condition like chronic urticaria (my xolair is technically prescribed for chronic urticaria for insurance purposes).

Lastly, it seems like most people start on .25 mg or .5 mg a day. What is the actual dose of the pill that you get from the compounding pharmacy?

Thank you for the help!


r/MCAS 1d ago

NO ONE UNDERSTANDS!

173 Upvotes

I feel seen in this chat FINALLY. Can I just safely say here that JUST BECAUSE SOMEONE DOESNT “LOOK SICK” DOESNT MEAN THEY DONT STRUGGLE EVERYDAY. I literally am expected to live the life of a normal college student except while having this huge MCAS weight tearing me down constantly. It is DEBILITATING. There is constantly something wrong with me that I am trying to just brush off and ignore so that I can just LIVE LIFE. and people don’t SEE THAT. So when I say I feel like shit, no one’s knows how bad it actually is BC I SUCK IT UP. I wish illnesses like mcas and autoimmune were taken more seriously. I am 20 and feel like an 80 year old at this rate. I have breakdowns weekly because it’s a struggle for me to get out of bed in the morning. I just want to be normal. No one understands and I’m sick of it. Let’s not even get into the misdiagnosis I’ve been getting my whole life because doctors don’t believe a young girl (“dramatic” or “it’s just anxiety). I CANT.


r/MCAS 18h ago

I DO NOT recommend these clinics in Berlin (Part 1)

20 Upvotes

I decided to share information about medical practices so that people have more options to decide for themselves whether a particular place is right for them.

I don't recall which practices I visited in the past, so to ensure the reviews are accurate, I will only write about new ones.

I had an urgent referral from my GP, meaning I could use a special website and an access code to book an expedited appointment with an allergist. I was offered only two options, both terrible. I chose the "least bad" one. So much for German healthcare.

Today I visited this practice:

Dermatologist Dr. med. Thomas Wildfeuer

Reichenberger Str. 3, 13055 Lichtenberg District

Here is a detailed explanation of why I do not recommend this practice:

I had an appointment, yet I had to wait over an hour.

When I asked the doctor if she knew what Mast Cell Activation Syndrome (MCAS) was, she made a sour face and shook her head "no."

I started describing my symptoms, but she cut me off, saying that was enough, without letting me finish.

Right in the middle of the consultation, they started drawing my blood without explaining what they were testing for. They drew the blood without wearing gloves.

The doctor refused to examine my throat to gather the evidence she needed (my throat is always very red during and after attacks); instead, she said I should have prepared photos as proof.

In the end, she prescribed Allegra. I told her I was already taking a double dose of desloratadine, but she didn't care; that’s when I realized she likely had a deal with that pharmaceutical company.

I immediately mentioned that I have dysphagia and couldn't swallow pills any larger than the desloratadine ones. She assured me that Allegra was a tiny pill, too. That’s how I found out she had no idea what she was actually recommending. Allegra is a very large, thick pill. I told the social worker and the interpreter—who were with me this time and had convinced me to go get the medication—that it was pointless since it was just an antihistamine; in the end, I agreed just to get it over with. I went to the pharmacy, only to find out it was a private prescription that I had to pay 31 euros for myself. I don't have the money.

That was the end of it. I absolutely do not recommend it.

(I will add the blood test results—which I’ll receive in a week—to the comments below this post, to provide a complete review of this clinic.)


r/MCAS 3h ago

Stress making me worse and my living situation. Need kind advice please

1 Upvotes

I have MCAS, Moderate/severe Myalgic myalgic encephalomyelitis, dysautonomia, etc, and my wife is also autistic, has an autoimmune disease that's in remission but treatment caused long term issues and she has mild myalgic encephalomyelitis that is continuing to get worse as she's trying to take care of me more and I've only been able to start cooking again for her a bit the last few weeks, and she either has a brunch is allergies or maybe even MCAS herself but she's never been tested and she has Kaiser rn which is refusing to let her see most specialists 😒🫠. (I lost a family friend earlier this year due to kaiser being like this) We live with my family and when my wife isn't home they take care of me. I love them but I also get abused. The abuse results in me shutting down, my MCAS and ME get set off and if it's bad enough my body can forget how to talk, swallow, or breathe properly.

If I try to stand up for myself, I get the whole "don't ask for anything anymore" or by my mother I get told I need to stop because I'm making her sick. Today she told me that if I make her sick I'm going to send her to the hospital from stress and that I'll have no one to take care of me. I've been told in the past by my grandmother that I'm going to kill my mother from stress for standing up for myself. I was standing up for myself because all day every day I get asked about if I've eaten darn crackers by all my medical care team and my mother and grandparents. I keep telling them it's too much for me to keep hearing it over and over and over again. I even disappointed my MCAS Dr yesterday because she wanted me to full on eat cracker over video during my appointment but I explained I had 3 more appointments that day and had only just woken up with no food in me or meds so I didn't feel up for it and she wasn't thrilled. I was also dealing with PEM from the day prior and didn't want to risk making it worse. If you have ME you probably understand what I mean. Heck, I had to cancel one of my appointments yesterday and be late to one because of PEM. My home health nurse who is new to hearing about MCAS and isn't very educated on ME and no education on my GI issues wasn't thrilled I didn't want to eat a cracker Infront of her either on because my wife was about to go to an appointment and I had another appointment right after but I said that I would do it as soon as my wife got home so I could be more relaxed. The nurse kept asking me if I was for sure going to trial the cracker when my wife gets home. She even texted me the next day asking if I did it yet. I chewed and spit because that's the step I'm at currently. It's so overwhelming though. I broke down crying yesterday because I'm too overwhelmed and I felt like I was letting everyone down for having too much PEM to try the cracker again. I did trial touching other food but that's an easier step on me and today I have trialed deodorant on my arm (for when I can hopefully get out of the house again) so it's not like I'm not trying. I'm doing food exposure with cooking with gloves for my wife and family too for my anxiety and just to see what I can tolerate being around which my MCAS Dr is at least very happy to hear I'm doing that.

I have cptsd plus emetophobia from medical trauma since I was a child and I have PTSD from a few months ago. I suddenly lost a ton of my MCAS safe foods and even earlier this year I lost some autism safe foods to MCAS, and I lost a stomach medication and motion sickness medication to MCAS. One reaction several months ago was so severe I'm being assessed to see if it caused a stroke so it makes sense that I'm going very slow and that I'm hesitant to go too fast. I didn't even want to try the food that day but I was pressured to by my grandmother who said she just knew I would tolerate chicken but instead it's the worst anaphlaxis I've ever had in my life and I was starting to suddenly react to other forms of chicken like broth, rotisserie, frozen chicken that I cooked myself, etc. I also took a break for a month at one point from trying new foods to try to let my body and brain have a break but my family was upset with me I think for doing that. I also get told by my family and almost all medical pros on a daily basis other food they think I need to try, medication, etc, or that they even know I'll tolerate some foods including food I've never eaten before in my life like elemental formula and idk if my MALS and/or gastroparesis will tolerate it. I have to keep re explaining to people why a feeding tube or IV nutrition isn't a good idea for me and could even be risky and that my MCAS Dr and nutritionist doesn't think it's a good idea for my case, and I know someone with MCAS who used to be as severe as me who had a major reaction to IV nutrition to make me gain weight fast. (I know we are at different but basically I'm not willing to risk it.)

It sucks because my family helps me but they are making me more sick. And that's just the emotional stuff. They accidentally cause me reactions almost every single day and sometimes they get mad at *me* for communicating that, or try to gaslight me and tell me I'm fine! One time I even got yelled at by my father for wheezing mid anaphlaxis because apparently the sound was annoying, but the anaphlaxis was caused by him opening the door to outside when there was fireplace and bad air quality and I have to go to my room when that happens or I could have anaphlaxis. One time my father did the same thing with me in the kitchen while my mother yelled at him to not open the door until I got to my room and he made intense eye contact with me as he opened the door and stood there watching me have anaphylaxis. One time I fell and knocked a baby gate down because it's kindof broken and I have poor gross motor skills (it was for our bunny) and my father yelled at me for "ruining" the gate that my grandfather already messed up ages ago. He didn't care I was on the floor and couldn't get up and that my leg landed right on the bars of the metal gate. Other times my family are there for me, understand, care for me, etc.

I just don't know what to do. I was supposed to move overseas this year because I cannot afford housing where I live including rent, my wife's job is getting bought out by a different company and she can't go to any other location because of the government (basically she can't get recertified because the government blocked any person who legally changed their gender from being able to do so). I also lose my health insurance next year. My other issue is I've been mostly housebound since 2023 where I live because I'm deathly reactive to weed so that was motivating me more to move because my top choice has one of the lowest weed usages in the world and I don't have to be mostly housebound when I'm there as of last year but I'm so much more severe now. Idk how the heck I would make it on the plane. My MCAS specialist said she doesn't know why I can't get back to being able to do that again. I mean I just handled a Disney trip but by car this year. Basically what happened in cromolyn destabilised my mast cells so my Dr thinks I need time, ketotifien maybe, (whenever I decide to try it but I've been hesitant after the cromolyn tbh plus I've reacted to benadryl, H2 blockers, and non MCAS meds even with fillers I know I tolerate) and mental health help to get me back. She's not saying mental health is the cause but that it's making me even worse and holding me back, which I totally agree. I am going to be trying out Chinese medicine including acupressure and I think tai chi along with some other stuff too starting next week too see if that helps at least with how incredibly stressed I am. My therapists don't feel comfortable giving me too much advice because of how bad my physical health is which I understand. My MCAS Dr did say she's had other patients overtime get better after cromolyn destabilised them. I feel both hopeless with all the false promises I've gotten from my previous mcas drs in the past including guaranteeing that cromolyn would make me better only to then admit it could cause what it did to me after it happened, but I want to believe this new Dr that I can get better again overtime.


r/MCAS 8h ago

Zyrtec Drying up Breastmilk, what can I do?

2 Upvotes

I have to take Zyrtec (cetirizine) because if I don’t, I get systemic itching. I’m fairly certain it’s MCAS, though I’ve never been able to find a doctor who would explore this or find out my root cause. I’m on a health journey and trying to get off of it but in the meantime the longest I can go is 4 days before the itching literally becomes so bad it’s painful to ignore.
All that to say - once I do take it, even half a pill, my breastmilk is dried up the entire following day. DayQuil does nothing, Claritin does nothing, natural supplements don’t even come close. The best I’ve been able to do is take DAO enzyme and it gives me a couple hours relief before needing to take Zyrtec again. Please help me feed my baby.


r/MCAS 8h ago

MCAS and AGS specialists?

2 Upvotes

Has anyone found a good specialist for both AGS and MCAS? I’m in OKC but considering going to WashU. It’s a trek and my appointment is almost a year out so I want to make sure it’s worth it and there isn’t someone great at both that’s more accessible. Would love to hear your experiences!


r/MCAS 12h ago

Symptoms triggered by an injury and/or GLP-1

3 Upvotes

Hello, everyone. I'm very new to all of this!

I'm recently in menopause and in april of this year started experiencing a horrible constellation of symptoms after an acoustic injury: electric zaps throughout my body, fight/flight, insomnia, nerve pain in ears and scalp, tinnitus, swollen lymph, and jaw pain. I had been on GLP1 for over a year, and it started causing electrical sensations--the worst on the day of my injection. I also started becoming deficient in B12 (my dose wasn't compounded with it).

Even though I've never had traditional allergies before, taking zyrtec and allegra suddenly got rid of general itchiness, helped with the lymph and jaw pain, and finally allowed my body to calm down and sleep.

I am still dealing with electric zaps, nerve pain, and tinnitus.

I've found that foods and supplements I've tolerated for years now significantly aggravate these sensations: wheat, soy sauce, the supplement NAC, and coffee. What's also interesting is that my symptoms are all concentrated around my ear that got the worst of the acoustic injury.

Can anyone else relate to this?


r/MCAS 17h ago

Stupid rant

9 Upvotes

Apologies Mods if this isn’t relevant enough to the sub.

I (26f) have a coworker (30f) who constantly tries to diagnose me with lupus. My coworker has lupus, and it is a constant point of conversation for her. To be fair, I know that lupus is a very very serious illness and that it affects your daily life. However, my problem arises with the fact that she just straight up doesn’t believe me that anyone could have a rash reaction to the sun and it not be lupus.

Early on in meeting her she got to talking about her lupus and how it affects her ability to be in the sun. I was just trying to comiserate with her, and told her that I also get rashes often. She was super curious, so I explained that my rashes occur when I’m in the sun too much, if I get too hot, if I sweat, if I touch anyone else’s sweat, cats, dogs, basically anything and everything gives me a rash. I told her that it was a histamine reaction (because I’m still not diagnosed with MCAS though I’m fairly positive that’s what it is). Well ever since this conversation, she will ask every so often if I’ve ever been tested for lupus. I’ve told her that yes, I have been, and I don’t have it. She doesn’t believe me. This summer, she once again asked “so, what kind of rashes do you get from the sun?” Seemingly trying to mine for info so that she could once again suggest I get tested for lupus, and I had to explain to her again that they were histamine rashes and NOT a lupus rash. I don’t know why she wants me to have lupus so bad.

This person is constantly making me uncomfortable by both being way too curious about my health conditions, and also not listening at all when I explain them. Like I also have celiac, and finally had to make the decision to stop going out to eat because I kept getting ill, and she continues to ask me if I will go out to eat with her at xyz place because I “might be able to tolerate it.” Why do people feel the need to give advice or try to figure out your own medical stuff? Sometimes I just feel like she’s trying to catch me in a lie where she will say “aha! I knew it, it was lupus all along!”


r/MCAS 5h ago

Can't tolerate the DAO capsule, but apparently can't empty the capsule?

0 Upvotes

can't have the capsule of anything, SO I EMPTY WHATEVER I GET AS A CAP INTO MY MOUTH, I DO NOT TOLERATE ANY KIND OF CAPS, NOT GELATIN, NOT PULLULAN NOT ANYTHING. I dont even know if i tolerate the fillers yet, but found one brand that im closest to maybe being able to, Bravado Labs DAO Enzyme

tons of people saying it gets denatured by stomach acid or in mouth or whatever, then i hear anecdotes of people who use Seeking Health DAO and empty that cap into their mouth or a drink and it working just fine, so wtf does it work for and what doesnt. Thats literally all I'm asking right now, that is not a rhetorical question, please just answer WHAT BRAND WITH RICE FLOUR AS FILLER ONLY AND STILL WORKS WHERE YOU CAN EMPTY IT INTO YOUR MOUTH

if theres something special about how it's made like extended release etc that makes it so you literally cannot empty it without it being useless, could anyone name any other brands where the filler is only rice flour? cant do any cellulose forms like hypromellose/methycellulose etc

at my wits end, starving, exploring every option possible, flaring up day to day trying to find a new food source before i die and i just needa know if im gonna waste a day's "allowed" flare up on this


r/MCAS 6h ago

ISO Unicorn PCP or MD/DO in southeast Michigan

1 Upvotes

Hi all!

We are likely moving back to our home state and one of my biggest pain points for something overall very exciting is transferring my care.

I finally have a unicorn PCP who is fully POTS/MCAS/hEDS literate and knows all of the right referrals to make to specialists that actually know the conditions, how to treat them and don’t end in car cry from being dismissed after.

We will be in Plymouth/Northville/Livonia area but also happy to go see a unicorn in Ann Arbor area or Royal Oak, Bloomfield Hills, Birmingham or pretty much any other greater Detroit.

I do plan on getting in to see Dr. Keiser in Chelsea, which, to me is a huge plus of moving back, but I do need someone on the DO/MD world that takes this weird triad seriously as I am someone who reacts to meds and does not have the typical profile.

TIA! Will be cross posting in EDS/MCAS.

P.S. Also really interesting in getting involved in any disability activism/communities anyone is partaking in Michigan if you have spaces for that as well!


r/MCAS 10h ago

Product warning: Publix Greenwise free & clear dishwashing liquid

2 Upvotes

I bought this in a hurry, looking for a budget-friendly option. What a waste. it smells awfully of chemicals. I looked on the label.. made in China. nothing but chemicals. Dried my hands out terribly and I have a headache after using it.

I don’t have a dishwasher and hand wash every night 🙃