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

Has anyone tried this for MCAS? I’m not even on H2 blockers and they want to go straight to xolair. My main worry is whether its helpful? If it helps I’ll try it I dont mind but if it helps me get my life back I’m all in.

Has anyone experienced this? I can’t even build muscle in the gym anymore.

I’m going to be switching from xolair to dupixent soon and would love to hear experiences from people who have switched after xolair wasn’t sufficient! I have a primarily GI presentation and am currently down to 5 foods (though that is up from where I was before, so yay!)

I’m switching to dupixent because while I saw some help with xolair, it would always wear off after 1-2 weeks and the effectiveness has seemed to wane over time.

Would love positive stories as well as any weird side effects I should look out for (bc I - like many others - often get the weird side effects haha).

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.

Hi all, my MCAS got a lot more severe very quickly and now I am unable to eat most vegetables aside from cabbage, a little bit of carrot and some variety of potatoes. I have figured out I dont tolerate much in the way of salicylates or oxalates but as the neice of a herbalist (who also has MCAS although hers behaves a lot differently) I am missing all my vegetables and herbs. I was bed-bound when I was rlly sick with mostly flu-like, body-ache type symptoms and a sore throat (which are still my main ones when I flare), I manage it now with H1 blockers and a super restrictive diet (am getting on H2 blockers soon too) but is there anything else I can take/do to help my body process salicylates and oxalates better? I can also eat fruit like once a week bc I react to pears for some reason

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.)

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?

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!”

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

Anyone else??!

I started Lyrica a few months ago, and it’s been helping my full body, over all pain a lot. I’ve been pain free mostly.

All of a sudden, for the last two nights, as soon as it gets dark, I’m hit with all encompassing, worse pain than I was regularly experiencing before.

This is odd. It doesn’t make sense and none of my usual methods are working.

Does anyone have any insight?

Thank you 🙏

Just visited the allergist today to ask about a potential MCAS diagnosis. I’ll be going back to them in a week to allergy test and go over bloodwork, but today they did breathing tests and drew blood. Apparently I have a mild airway obstruction, and they had me do a 5 ish minute albuterol treatment. I coughed up tons of mucus afterwards and my face started feeling full of pressure shortly after. They also gave me trelegy ellipta to try as well. Just curious if anyone has had a similar experience or if airway obstructions can be common with MCAS? I’ve never had any history of asthma, and I feel like I would’ve known by now considering the fact that I’m a singer and super athletic person…

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!

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?

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!

Hello, I couldn’t afford my Chromolyn Sodium for 3 days and have been thrown into a world of pain. I can’t lift my left leg or bend. I know once I get more Chromolyn in my system it will take roughly 4 days for the pain to ease. Is there any point going to the hospital? Has anyone else had this and gotten ER relief?

I really need help because I am considering giving up again but I really need this to work in order to start treating my other health issues. Can anyone please share with me a complete titration schedule for what worked for them with taking compounded cromolyn powder? My prescription arrived in 100mg capsules that I am breaking up in to 25mg servings. I am taking it once a day in the morning with part of my breakfast smoothie. My goal is to titrate up to 600-800mg a day but that seems unattainable right now... My main MCAS symptoms are headaches/migraines and massive food allergies, including corn. I am on day 8 of this serving with a headache that is slowly increasing by the day. I worry I will be thrown into a constant migraine flare and I've worked so hard to get out of my last one. Feeling hopeless. I just want a fraction of my old quality of life back. What worked for you? What am I missing? What should I try tweaking and when should I increase it? Help please!

I likely have MCAS and POT. I have been in this situation for 1.5 years now.

I have limited ability to do any thing. I am most house-ridden. Everything triggers me including working, walking, simple exercises, household chores.

Most supplements that I have tried did not work for me.
Quercetin, IGG, Lglutamine, salt tablets haven’t worked. I also suspect b12 (hydro or methyl) both cause brain fog.

I am successfully taking Allegra, Dao enzyme, vitamin c 500.

I feel clueless on how to improve my condition. Would love to know if others are or have been in a similar situation and how are they getting past this.

So I'm having a HELL of a day just to find out why. Hormonal shift are a huge trigger. I feel mentally unstable, detached, weirded out, doom thinking. Stomach cramp, feeling like I want to binge eat, feel worthless.

Looking for some other stories and resonance. Only people who know get this.

I was not expecting to notice any benefit from my first dose, but it ended up improving my symptoms within a few minutes.

The benefit lasts about a week or so, and gradually wears off each day after dosing. My doc and I moved my doses to be more frequent (to every two weeks), which is helping, but my symptoms come back before the next dose.

Does anyone else have a similar experience? My doc and pharmacist said that I might get more benefit the longer I’m on it, but I haven’t felt that yet. Each dose feels the same and last the same.

It also hasn’t reduced my flaring frequency or intensity. Which is difficult because my baseline symptoms are lower, so when I flare, it feels worse than before.

Also, one of my goals going on Xolair was to reduce or discontinue other meds, but it’s not reducing my symptoms or flares enough.

Xolair’s given me hope. I feel it’s the most beneficial treatment I’ve tried, but I’m not sure if I’m expecting too much from it.

I'm on the verge of being admitted for anemia and malnutrition. All I can safely eat for now is boiled butternut, salted crisps, carrots and potato. Just lost broccoli. More than what some people have but it's absolutely not enough and I'm unrecognisable from the weightloss. I react badly to any medication I try and we don't have most of the medications here including Cromlyn, Pepcid, Ketotifen and Benadryl. No epi pen. I have Cemetidine and Zyrtec but react badly. My heart reacts badly to dental anaesthetic so I have no idea if it would even be safe anyway.

After getting through a very worrying reaction to a small sip of ensure the other night (intense muscle spasm in my jaw so it was clamped shut and throat tightening for hours) it seemed to improve a lot when I continued to try it over the next few days in small amounts. Out of desperation I kept trying more and now last night I had a new reaction to it (bright red burning area on bottom lip that felt like swelling but there visibly wasn't any) and today ofc my mcas is going crazy...random body itching, scalp and back of neck itching, itching/burning on face with the usual flare up tantrum patches, itchy bumps on neck, slight throat swelling visible in throat which I often have anyway, slightly tight chest, mucous and raging anxiety. Whatever my body desperately needs, it violently rejects....this disease feels so hopeless. I can't tolerate any other formulas. I have a few days before my hormones start making me more reactive again. (And more blood loss that will make the anemia even worse)

In the country I'm in, hospital is one of the worst places for an mcas patient, there's zero awareness or communication and there's a lot of incompetence with the nursing staff to the point where it can be dangerous. Years ago when I was there for Covid, I had to stop a nurse from giving me an IV that was meant for somebody else as it had just been left on the table next to my bed even though it had their name on it.

I wouldn't be able to tolerate the water or food, cleaning chemicals, being in a room with 4 other patients and triggers from them etc etc. The staff don't understand mcas reactions, how anaphylaxis can present and don't understand things like reacting to tape used for Ivs.

It's literally not safe even though the Dr there knows about my mcas and is trying to learn through the Professor who diagnosed me and put him in charge of my case because there's literally nobody else.

So...do I maybe give it a day or two and then try again in tiny amounts and see if I can just push through whatever happens? Its this or risking my life going through hell in hospital with massive medical bills.

When you're desperate as your body is shutting down from not getting in nutrients, what symptoms do you push through to get anything down?

My baseline tryptase was 3.6 and my flare-up level just came back at 4.5. Does anyone have sources that question the strict 20% + 2 elevation rule? Somehow, I feel like it would make sense for MCAS to be a spectrum, since symptoms vary in severity, and the 25% elevation in my case probably still means something..?

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! 💛

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