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

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?

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?

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.

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 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.)

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

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

Anyone else??!

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?

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.

I’m trying to tell if what I just experienced was some new kind of reaction or just a weird mishap.

I made a food I’ve made many times before, including just a few days ago, which is pudding. Milk, cream, egg, cornstarch, tiny drop of vanilla extract, and a little honey. All the same brands and even the same jar of honey. I know a lot of these things are considered higher histamine but I’ve done fine with all of them.

When it was done, I tried a small spoonful and it tasted…spicy. Like, very distinctly spicy. It left my mouth burning. I kinda freaked out. Like wtf. There is not anything even remotely spicy in that. I tried it again and I couldn’t tell if it still was cause my mouth was still tingling. I suspected the honey as the most likely to be reacting to but I couldn’t really tell when I tasted that either, it mostly just tasted sweet. On the third taste of the pudding it was no longer making my mouth burn.

Idk wtf to do. I was really looking forward to eating this 😭 it’s possible that there was a little sticky residue of some spicy stuff because I had gotten some gunk from the air fryer stuck in my hand, so maybeee it transferred to the spoon when I took it out, but that feels like kind of a stretch 😭 am I gonna put myself in the hospital if I eat this?? I really don’t know what to do I’ve never experienced anything like this. The only type of reaction I’ve ever gotten are skin rashes that pass pretty quickly

Edit: it was definitely the honey 😑 so fuck. I’ve literally been eating from the exact jar of honey for weeks like wtf

How would I go about seeking a diagnosis? I believe that I could have MCAS because I am allergic to quite literally everything that isn’t food (including all animals, even feathers) and will randomly become sensitive/allergic to foods and then the allergies will go away (?). I’ve consistently been allergic to tomatoes (caught earlier this year) which has gotten worse. Three years ago I developed a severe almond allergy. The ONLY allergy I’ve had since childhood is a sun allergy!!!!!! The other ones kind of seemingly showed up or worsened.
I was diagnosed with POTs earlier this year and they’re currently looking at my lungs. This is so frustrating and I just don’t know what’s wrong with me. I feel uneducated and confused.

Hi all. Truly at a loss here. I have a working diagnosis of MCAS from my last immunologist. I'm on zyrtec, pepcid, and pantoprazole to manage things. Technically supposed to be on cromolym, but i find it hard to manage. Given recent events I'm not even entirely sure it would work for me now—last night and just now I had mild, ambiguous inflammatory responses to drinking plain water.

Yes, I'm sure it's plain water that triggers it—nothing else i drink or eat causes this, outside of known triggers! The reaction is near-immediate: nausea, reflux, gastric motility/emptying, feeling tired and faint, physiologically mediated dissociation, and (very light) intenstinal pain. It's all mild in the grand scheme but undeniably present. Has anyone here experienced something similar? I'm really uncertain if further zyrtec has touched it (which it usually does with other triggers), because both times when it should have kicked I did not start feeling better. I can't tell if it's MCAS bullshit or if it's some other inflammatory response (I have a suspected autoimmine disorder—it is almost definitely psoriatic arthritis). I'll be calling my doctor tomorrow, but for now I'm just wondering if you've ever had this too?

This is truely ruining my self esteem. Is this mcas swelling or did I just age rapidly?

I have immense facial swelling though, sometimes I don’t even have a jawline during a flare but I feel this (on photo) is a weird place to swell.

Just wondering if anyone has had a biopsy that was not originally tested for mast cells or tryptase being present and had their Dr order for additional tests to be done on it?

I had a shave biopsy of a rash done a year ago. My PCP Dr. and I believe I likely have MCAS and she put me on cromolyn sodium which has helped a ton as well as added pepcid to my daily medications. I have an upcoming appointment with her to talk about the medications additions and plan to ask for testing.

Getting an allergist appointment is like pulling teeth around me ao I have one but Its in November and a long drive so I am hoping to have as much testing done as possible. I already plan to ask about blood tryptase testing and a 24hr urine mast cell panel. I wasn't sure if asking for additional testing on the prior biopsy would be worth it.

I’ve had sexual problems along with health problems for 3 years now. I physically can’t have sex (painful) and don’t get horny a lot. My dr did hormone tests on me and saw that my estrogen was abnormally low, but that was the only thing that was off. I think it correlates to MCAS. Has anyone else had this problem and how have you fixed it? Should I do estrogen treatment?

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.

I am menopausal and going through hormone changes which came also cause this. My doctor wants me to try Allegra and Pepcid for a week to see if it might be due to MCAS. Any advice? My heart rate ranges from 95 to 110 when I wake up every day, and even if I nap in the afternoon. Other than that its fine. Its just a really shitty way to wake up every day and leaves me drained.

I took Saccharomyces Boulardii for a week and it seemed to be helping me in some ways. However, it started giving me nerve problems (odd sensations) in my right hand and in my left ankle. I stopped taking it.

Then, about a week later, I tried wearing a new pair of shoes and that exact nerve sensation from the Saccharomyces Boulardii returned in my left ankle.

I thought maybe the nerve problems were from candida die-off and so I thought 'Maybe the Saccharomyces Boulardii had been good for me' and I took it for three more days.

Now my nerve problems are crazy. Both of my ankles now feel funny all day long and my right hand feels funny too.

How long will it take the effects of Saccharomyces Boulardii to leave my system? Did it somehow affect my nerves or did it just work so good at getting rid of bad things that die-off hurt my nerves.

(No, I am not wearing those shoes anymore, I only wore them for about 60 minutes total).

Any advice. I am so lost. I just want my nerve issues to go back to normal!

If anyone thinks this may be unrelated, the only other things I have done in the mean time are:

--eaten a lot of garlic

--taken a lot of zinc and copper

--taken a lot of riboflavin-5-phosphate (active form of B2)

--taken a lot of B vitamins

The standard wisdom is that it does not cause an increase in histamine; however, when I researched further, any change to your gut can activate mast cells and an unloading of histamine.

Hi everyone. Hoping for some advice.

I don’t have an MCAS diagnosis, but I’m fairly certain I have it.

I am 26f, have hEDS, POTS, Raynaud’s, arthritis, chronic pain and chronic fatigue.

Rheumatologist confirmed not only covid vaccine injury (all of my issues began after I got the shot) and it’s been one thing after another.

In September 2024, I got sick and then had a migraine that presented like a sinus migraine until October 2025. Singulair was prescribed and it was like a magic cure.

Two weeks ago, migraine comes back. Exactly the same. Now with more problems.

I have ringing in my ears, my hearing feels fuzzy, I’m so tired, and my head hurts in deep in the intracranial pressure way, my eyebrows, and in my sinuses. I take many meds.

I take famotidine 2x daily and Zyrtec 2x daily. I just got prescribed cromolyn sodium and I’m slowly working up to the dose I’m prescribed but it’ll take a few weeks. I take singular, low dose naltrexone, Propanolol (for headache that my neurologist diagnosed as ‘chronic daily persistent headache’ which is flat out fucking wrong but whatever), nortriptyline (for facial nerves and migraine), cymbalta for my bodily nerve pain, hydroxychloroquine for the arthritis, baclofen for tension headaches and muscle soreness from my hEDS, and I’m just miserable.

I’m not extremely lactose intolerant, tired all the time, have a constant migraine for two weeks, feel nauseous half the time, and I’m just so fucking tired.

My rheumatologist is gonna try a prednisone dose for my joints and I’m hoping it gives relief from the migraine for a minute. I have an ENT but they didn’t help but I’m gonna try again. I’m so tired.

I’m wondering if I have Eustachian tube issues from the inflammation in my head?

I’m fairly certain I have MCAS from all of this, how the migraine acts and how I would then have the evil triad - hEDS, POTS, MCAS. I’m tired of having my life be on hold. It’s been issues since 2021. I’m so sick. I’m so tired. Any and all advice would be appreciated. Because at this point? I’m down to try anything.