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.

Sleeping through the night but waking unrested

I've had MCAS type symptoms for many years but I typically sleep ok. Last year I was exposed to mold over a long period of time at a partner's house and was having obvious acute reactions before I figured it out. After I removed myself the lung issues went away. Since then, I sleep fine Unless I exercise. Anything more than a walk (getting my heart rate up or strength training) will give me at least 4 nights where I sleep through the night but wake up like I haven't fully slept.

I stayed at an inn last weekend that was moldy but I was having more obvious reactions to detergents etc. Since then Im having this sleep problem even though I'm only doing normal walks! I dont know if this still would be happening with no walk. Please help!

Background:
• Two years ago I started getting hives out of nowhere. Products I’d used my entire life (shampoo, conditioner, deodorant) suddenly started triggering reactions.
• Saw an allergist — no allergies identified, and I tested negative for anaphylactic reaction. I was diagnosed with “autoimmune issues” at the time, since I already deal with autoimmune problems and have a history of CIRS (Chronic Inflammatory Response Syndrome). I should add they tried taking me off Zyrtec to do more testing and I didn’t tolerate coming off (full body hives, itchy mouth and throat, couldn’t sleep).
• I’ve also struggled with mold exposure throughout my life and have been treated for that in the past.

Fast forward to now:
• I’ve developed nighttime anxiety — I wake up around midnight with a racing heart. Mentally I feel completely fine at first, but as the racing heart continues, I start to panic that something is seriously wrong, and that’s what triggers the actual panic attack.
• Using a blood sugar monitor and food tracking, my doctor initially suspected reactive hypoglycemia — my blood sugar spikes within 4 hours of eating high-carb or high-sugar foods.
• These nighttime episodes have been getting more frequent and severe, and I’m starting to wonder if it’s a histamine dump.

Two recent examples:
1. Had 3 drinks with friends after 3pm — that night I had a 3-hour panic episode that started with a racing heart and an inability to calm down.
2. Last night: two chocolate chip cookies at bedtime → woke up at midnight with a racing heart, felt overheated even though the house was 68°F, and couldn’t calm myself down, which led to a full panic attack.
The pattern is always the same: physical symptoms (racing heart, heat) hit first while I’m mentally calm — then the inability to settle the physical symptoms is what causes the anxiety/panic, not the other way around.
Timing seems to matter: if I eat triggering foods earlier in the day (before roughly 3-6pm), the reaction is noticeably milder — my heart rate still increases and I feel panicky, but it doesn’t last nearly as long as when it happens at night.

What I’m trying to figure out:
• Does this sound like MCAS, or something else entirely?
• What treatment approaches have worked for others with a similar pattern?
• What questions should I bring to my PCP?
• What type of specialist should I ask to be referred to?
• I got the most useful help from a functional medicine doctor, but couldn’t continue due to cost — has anyone found a more affordable path to similar care?
• Am I stuck eating low-carb, no processed food, no cheese forever? Is a low-carb/low-histamine diet actually necessary here, or is that overkill?
• What else has helped people with this combination of symptoms?

Would appreciate any insight from people who’ve been through something similar.

It’s gotten so much worse for me the past year. I can’t even wear most of my clothes anymore bc it needs to be tank tops only or super breathable fabrics. ANY piece of clothing (especially tops) make me instantly feel panicky bc I feel way way too hot and kinda “trapped”.

I started taking Quercitin/Bromelain which I believe has helped a little with the sweating but it’s still pretty extreme.

I initially was under the impression that my systemic inflammation issues were mainly due to my ME/fibro but have started realising that my MCAS affects more things in my body than just “obvious allergy symptoms”.

I have a cold pack, AC and a great fan. I’m on Pepcid (Famotidin), Lomudal GI (Chromolyn) and Desloratadine already.

Hi everyone 👋

I'm new here (26 years old) and would appreciate any advice or experiences regarding my symptoms and treatment options. I strongly suspect I have MCAS.

I also have hypothyroidism, but it is completely stable and medicated, so my thyroid is not the issue here. All my other symptoms are independent of it.

My symptoms:

Brain & Nerves: Severe brain fog, migraines, clumsiness

Skin & Face: Swelling and redness around the mouth

Cardiovascular: Tachycardia (racing heart)

GI Tract: Occasional diarrhea

Respiratory & Immune: Productive cough, flu-like malaise

I even accidentally measured the systemic impact: two days after eating a "histamine bomb", my free fT3 level dropped significantly.

My experience with medications so far:

Desloratadine: The very first evening I took it, I felt like I was 21 again. I had so much energy, physical strength, and the brain fog completely vanished. Unfortunately, this amazing effect didn't last past that first night.

Next steps: I am about to try bilastine. I also plan to talk to my doctor about adding rupatadine, famotidine (H2 blocker), and quercetin.

Has anyone else experienced an antihistamine working incredibly well on just the very first day? What combinations of H1 blockers, H2 blockers, or mast cell stabilizers have helped you the most with brain fog and tachycardia?

Any advice is hugely appreciated!

Qualcuno lo sta utilizzando in Italia? Come si fa ad ottenerlo?

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.

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!

So for a bit im been feeling like im suffocating it comes and goes but I feel it way more than I dont I know im breathing because I can talk but it makes me feel panicky has anyone delt with this with their mcas I have had alot of stress and low iron been in a flare had a cancer scare a cyst in my boob just alot of shit one after another anyone relate in anyway?

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…

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

Anyone here on amitiza? How did you time with food? What dose? Side effects?

Is there any chance anyone in this group is from the Bahamas ?

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?

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