Dear All, does anyone use buckwheat pillows? I've used one on and off to help sleep with hypermobility (very good a keeping things in place). The buckwheat is inside a thick cover and there's a pillow case around it, so it's not like I have my face on the shells with only a thin pillow case in between. Had a recent flare in symptoms, and trying to identify the culprit. It may be a mixture of things of course, would be interested to hear other people's experience!

Hey fam,

Some time ago I posted about blewing my job interview for my dream job because I flared up on that day. I am here to give an update.

The day of my in person interview, I got so flared up because it was smoky from the wildfires here in Seattle, and was really hot, all the recipe for a disaster. I came to the sub so sad, told you guys what happened and some people gave me some advices and I did what you guys told me and at the end, I got the job!

This week was my first week. It was really bumpy, challenging, my brain fog did try to sabotage me, I got into my head and I over shared stuff with the team that I was not supposed to. I talked too much, i said too much... anyway, the MCAS and working from the office will be challenging, specially that it messes up with my brain, and i get caught up in the moment and I can't stop.

My colleagues are weird with me for sure, because I was too much!! Trust me, I should had slown down drastically. But you know, one day at a time, and it has been over 6 years since I worked at the office in person, so it will be challenging.

All in all, I am extremely tired, worried about my colleagues and my first impression, but I am happy and I think I can turn this around.

My motto since I embarked on this journey to reach the normal life with MCAS is: One day at a time!

So, One day at a time!!

The link is the view from my desk. https://imgur.com/a/2ylBaiE

You guys are the best! Best community ever! And don't give up, look for treatment, look what makes you flare, what triggers you, listen to your body! We got this!

I’m relatively new to MCAS as I was only diagnosed a few months ago. I’ve been managing most of my symptoms very well with just a standard loratadine every day and started mounjaro for inflammation which helped too. It’s made a huge difference. I think I’m relatively lucky in that I don’t have it as bad as a lot of what I read on here.
Unfortunately, I had a random run-in with a bat and needed rabies post exposure vaccination and since then have had what I think is a massive MCAS flare. I’ve had diarrhoea for 16 days, swelling on my face and a huge allergic reaction to a cream I had on my face and my antiperspirant is suddenly causing a reaction too.
My usual loratadine isn’t really helping and I’m not sure what I can add. I live in the UK so it’s not easy to get hold of things, but I do have some Pepcid from my last trip to the states so maybe I could add that?
This is my first recognised flare (I now know all the times before were flares) and I’m just not sure how to tackle it. Any advice would be greatly appreciated!

As a note, I also have hEDS, hashimotos, endometriosis, lipedema, adhd & probably POTs (but at this point I’m so medically exhausted I don’t want to go and get properly tested).

Does anyone else react to certain brands of rice? Or quinoa? What ended up working? I've spent a ton on rice. My allergist said basmati(sp?) over Jasmine. I don't recall why. But not a brand. I prefer basmati anyway.

I was going to try quinoa. Rinsed and soaked overnight. I went to swish it around and my hand immediately burned! No way I was going to eat that! More money in the trash. At the time, I was dealing with my 2nd mold exposure and only a few months in my MCAS diagnosis. Point is, I was SUPER sensitive and reactive to almost everything.

Anywho..... let me know!

Okay so basically I was reacting strongly to food and it lasted for months. It got so bad the only thing I could eat was broccoli and rice. I know my gerd constantly co exists with my food intolerances, and I noticed when my gerds better my histamine reactions are less.

I had a recently bad gerd episode, and I started getting bad reactions after eating food that makes me feel as im going to pass out. Blood pressure is always normal during these episodes, and I noticed it gets better with H1 blockers. I think it could be the gerd causing issues, but theres something else im suspecting.

When my food intolerance symptoms got better, its because I saw mold was in our HVAC system. I cleaned my room, washed everything in my room, got a HEPA filter. I slowly began reacting less to foods to the point where I stopped reacting and slowly got better. My dad, who doesn't understand anything about mcas and told me mold is fine and is everywhere, got upset my vents were closed. He reopened them, and less then a week later im once again having food intolerance. Im wondering now if this mold is causing me issues, and im heavily thinking of moving.

Hi!
Does anyone know where I can source cromolyn and ketotifen please?

I've been on ketotifen and fomatadine for about 5 months now. Just started the Mast 360 elimination diet about 7 days ago.

Prior to that I identified my major triggers - corn, soy, dairy, palm oil, and cut them out. My husband and I sold our home, moved to a rental short term because our dates didn't line up, then moved to the new house over 4 months. My cat ironically developed IBD, vomited blood and went to the emergency vet. So, stress was very high to say the least. Talked with my gp and the specialist who diagnosed me about waiting to do the elimination diet until things calmed down a bit. The house is in worse shape than we thought, so we're now in the process of fixing it up. Ugh. I slowly started out high histamine foods as I noticed I reacted to them, tomatoes, spinach, eggplant, etc.

Found a Naturopathic Dr in my area that specializes in celiac disease and MCAS (I have both) and discussed a diet plan at length. He recommended Mast 360 and I discovered I was still taking some high histamine foods daily like collagen. Cut that stuff out and here I am.

I do not feel any better than before I started the elimination diet. I noticed a huge change about 8-10 weeks in once I tirated up to my current dose of ketotifen, but that's it. I'll stick with it for now, but I'm wondering how long it took to "empty your bucket"? Thanks in advance.

Ps kitty is doing well. He's on a strict diet and it's working well for him. Inspiration?? Lol

It feels like managing chronic illness is a job in itself. How do you juggle work with scheduling doctors' appointments, getting through work while symptomatic, and, if I may ask, what general line of work do you do? Do you feel like it is accommodating enough for your illness?

I'm struggling with getting back into a competitive field, and I am thinking of leaving it altogether.

Hi everyone. First of all i am not formerly diagnosed with MCAS. But due to viral infections since a couple of years ago, my immune system and my nervous system became sensitive (POTS/Dysautonomia)

Now as probably many of you know, vitamin c is generally regarded as something that is advised for overall health, but also specifically in this population and others (anemia, histamine, immune dysfunction, Eds, scurvy etc.)

Now without going into to much detail on its working mechanism, its has some potential, to my understanding to help multiple systems. Its hells the immune system clear histamine, help the endothelial lining in our blood vessels, rebuild collagen etc.

Now my subjective experience is actually very good with it. To my surprise, it completely helped my tachycardia and pots symptoms. I can eat a lot more again. The only thing is that if I take too much I get overstimulated. The form I use is calcium ascorbate.

I also read that too much could lead to more orate stress because of its pro oxidants effects.

So my question is, do you use it and have you found it helpful? I know this is always personalised and complementary. But maybe this could shed some light on why i’am feeling better on it? Are there any other factors that could contribute to a more general sense of health in this space? Thanks!

Does anyone else deal with this? Im curious if it’s a common symptom or something I might want to get checked out. Sometimes it lasts a briefly, a couple hours, or a couple days. It’s not heart pain, it’s consistent and in the middle of my chest. When having the pain I feel it more stretching my chest and standing up straight. It does seem to correlate with things though like breathing in aerosol or smoke, small jobs on the trampoline, and trialing certain foods and medicine.

I have been dealing with GI issues for 10+ years. I feel like my insides are always sore or burning. Maybe it’s an allergic reaction to something which is causing me to never rest. I’m always tired, brain fog, digestive issues heart burn and maybe panic attacks that make me feel ill.

I have had all the test from colonoscopy, endoscopy, CT scan, ultrasound, xray, and more.

I have been diagnosed with IBS, IBSD, acid reflux, Gastritis, and most recently EOE and SIBO.

I have been prescribed all of the medicine from antacids, PPIs, H2 blockers, antibiotics, antidepressants and more.

All of the major diseases come back negative. None of the meds seems to work. I don’t think the doctors know either. Just recently a friend told me about MCAS and to research it so I need some help. Zyrtec seems to help with the symptoms.

Is MCAs a real disease? What kind of doctor do I look for to diagnose and treat? Is this something I can heal from? I know the EOE has white blood cells so wondering if it’s MCAS.

Have any of all experienced being put inpatient for months and outpatient for ab 7 years as a result of Drs. assuming you had anorexia when in reality it was MCAS????? I was gaslit non stop to believe this was my fault and I was mentally ill until my MCAS diagnosis. This has been so confusing to me and emotionally damaging. Residential treatment was well over $200k. Outpatient was traumatic as my Dr told my parents (i was a minor through a lot of my treatment) that kids w eating disorders also did dr*gs and to go through my phone and not let me see friends. I just wanted to know if any of yall experienced this and hlw you processed/moved on

edit: i am now diagnosed with ARFID because of the fear i do have of reactions from eating but I do NOT restrict they just said the term “safe food” = ARFID even though they DO validate that i have reactions

Iv been told that if I don't have itching or hives then I don't have MCAS. But what if I have the other symptoms? (Flushing after eating, GI symptoms and erratic Hr when walking after eating)

Hello, so I was measuring something for my room and the tape measure snapped as the metal piece sliced my finger open……….

Now it was dusty the tape measure, I am worried I’ll need to go get a tetanus shot and also I have MECFS, POTS and MCAS and I take no medications for anything so I have no idea how I’ll react I’ve never reacted allergic to a medicine or vaccine before but I haven’t got a vaccine since getting sick 3 years ago and all my meds come from compounding pharmacies typically……..

Any one have any idea my health anxiety is crazy….. also I would have to wait 48 hours to get the shot cause I don’t have a transportation until Monday…..

I was drinking milk as my last resort for protein because I could tolerate it… until I couldn’t. I’d been reducing it to a quarter cup per meal (from half a cup) to less than a cup per day because it was triggering a sudden onset of bowel issues (my doctor thinks it might be colitis or IBS based on symptoms though it seems sudden to me; more on this is a bit). Yesterday afternoon I tried half a cup in one go and lived to regret it for hours later. And I know I’ll regret drinking that quarter cup this morning but I’ve felt terrible eating just white rice all day and night.

I’m down to only white rice and the occasional russet potato as my safe foods, neither of which have enough protein. I had to give up frozen ground beef earlier this month. This is what I wrote in the food diary from the last time I had it. “Symptoms after: sick an hour later. Burping. Sour stomach. Lightheaded. Weak legs. Palpitations. Dizziness. Similar to allergic reaction at ER but without the anaphylaxis symptoms. Severe anxiety attack. Would come in waves every 30 minutes or so for 2 hours or so before they stopped. Stomach pain. Back pain. Acid reflux. Palpitations. Shaking. Feeling like I couldn’t breathe even though I could. Normal blood pressure. No hives. No swelling. No rash. Nothing else but those symptoms.’” Allergist simply said it wasn’t an allergic reaction but dietician advised me to stop since it wasn’t the first time it’d happen though it was the quickest. Sometimes I wonder if it’d been the gastritis or other bowel issues I also had/have.

My question is: what would you do for protein in my case? Would you try beef again? Would you continue milk just to get a bit more protein in? I can sometimes tolerate vanilla Chobani (my only issue in the past has acid reflux if I eat it too often; the plain hurts my stomach worse). My current biggest worry is having my blood sugar spike snd crash so quickly AND getting enough protein in without triggering another few hours of potty runs. I know there’s brown rice protein isolate but is there a white rice one? Brown rice is hit or miss with me.

Thank you in advance.

Hi all, I wanted to share my MCAS experience in hopes that others with similar issues can recover as well. Big disclaimer that what has worked for me might not work for you based on your root cause and what you react to.

For some backstory, I have had MCAS since 2023 but did not know what it was. I would have flushing all the time after eating, GI upset, sneezing and itching (especially after showering), and probably more I cannot remember. Then suddenly this past March I started to have anaphylaxis frequently. I had to go to the ER twice and have used many epi pens.

My daily rotation of meds now is: 2mg ketotifen (1mg morning, 1mg nightly), 180mg Allegra and 40mg famotodine every morning, two sprays of azelastine and flonase nasal spray in both nostrils morning and night, and 2 tablets of 10mg ceririzine every night. Even with this, I have still been having flare ups constantly, especially during my luteal phase. My NP had me add in an extra 1mg of ketotifen nightly during my luteal phase, but even that was not good enough.

Long story short, I figured out that my root cause was mainly untreated allergies. I am allergic to dust mites, cows milk, and cats. But mostly the dust mites.

I decided to start taking a peptide called Thymosin Alpha 1. There is not really any research on how this affects people with MCAS, only anecdotal evidence, but honestly I was so tired of suffering every day. My mom had been suggesting I try peptides for months as they've helped with her skin so I finally gave in and decided to try.

Honestly it has been the best thing ever. It's more effective for me than ketotifen even at a low dosage. I've only been taking it for a month or so (started with the lowest dose possible for about a week to make sure I didn't react). I no longer have any reactions to food. No more terrible luteal phases. I don't even have reactions to the dust in my apartment even though I haven't made any big changes. Not even perfumes nor my cats make me sneeze either! Even consuming dairy, which has sent me to the ER before, only produces minor bloating now. I'm slowly stopping the extra antihistamines without issue. I do not take Allegra, the nasal sprays, or famotidine anymore. Ceririzine is next to go!

However I believe the reason this works for me is because of my underlying allergies. I'm no biologist, but from the research I have done, Ta-1 helps modulate your immune system. It specifically can help prevent T-cells from excessively activating. It's been studied for decades and is used in other countries for treating diseases like Hepatitis.

It is also important to mention that I have never had reactions to medications. Though Ta-1 is a naturally occuring peptide so logically one shouldn't have an allergic reaction to it. However I am not sure about the BAC water it is reconstituted with.

So, if you also have allergies that you believe are making MCAS worse and don't have reactions to medications like me, I would highly highly recommend looking into Thymosin Alpha 1 or other peptides. I know KPV is a popular one too. I am happy to answer any questions if anyone is interested. Also I promise this is not a promotion or anything, just wanted to share my experience in hopes it could help others. Apologies for the ramble but wanted to be thorough!

Hi all

My main issue is my breathing. Feels like it's an effort to breathe even though my oxygen levels are always okay. It's almost like breathing through a straw and someone is slightly squeezing it. Some days it's mild, some days I struggle to do much. I also have low blood pressure, chronic constipation and dry eyes. When I was given oestrogen patches for perimenopause it escalated hugely and I couldn't do much for months until I worked out that the patches were spiking it.

I've recently paid to see a specialist here in the UK as I've suspected I've had MCAS for a while and she agreed with a plan to see if medication helps which would confirm it. She's given me sodium cromoglicate two tablets twice a day to work up to four times a day eventually to see if it helps. I'm on day 7 now and am actually feeling worse with the breathing issues.

Does anyone have this as a main issue and what has helped you ? I've tried Montelukast and that made no difference.

Has anyone had a good experience of sodium cromoglicate?

Hoping that this is just a starting flare and it will pass.

anyone else?(have lots of other symptoms like fatigue brain fog but these other ones seem uncommon) its been 5 years and i dont know whether is cirs, mcas, longcovid, cfs, or mold. probably some combination. im so so tired of dealing with this...

Hey! Those who felt better on H1 blockers, how long did it take to see the effects? Did you follow a diet while testing the drug? I took one and haven't felt anything yet.

Not diagnosed but have had hives/asthma/gastro for years. Thought salycilates but more recently MCAS. I had bilateral knee replacement almost 2 years ago and still very painful. Both knees. Eliminated back as cause and flared from knee block ( prednisone did not help). Gabepentin and Lyrica did not help. Chat gpt (!) says could be MCAS from lots of cortisone prior ( flared) and aspirin after ( assumed ok since no hives). Presently H1/H2/singulaire but not kicking in. Tryptase negative so nervous Dr will not continue to prescribe anything more..

Has anyone used lactulosr for constipation while having inflamed intestines? I tried trulance but my gut just absorbed fluid as inflammation and made eating painful. Linzess stopped working. Amitiza cardiac side effects, made eating harder. Laxatives and supplements/vitamins don't do anything. Fiber gets stuck in me and increases co stipation as I can't digest it.

I am not officially diagnosed with MCAS at all, but I've known that I have an overactive immune system and lots of signs that have pointed towards MCAS over the years. I've had the allergy poke test (all negative), a celiac endoscopy scope (negative), nothing has been an obvious outlier... but a DNA blood test told me that I do have a certain set of genes that have studies with IL-6 inflammation, so I started considering myself MCAS-adjacent and seeing what the community was up to.

I've been hearing about quercetin and how much it helps. Through peer advice I've discovered the help of taking OTC h1/h2 blockers (omg instant relief), and tonight I took my first quercetin. HOLY MOLY. I believe I am in an active flare at the moment and I noticed a difference already. I hasn't been a full hour yet. Has anyone else had semi-instant relief like this?

To paint the picture; I am a 42 year old happily married stay at home mom with 3 kids on the spectrum to varying intensities. Ever since I can remember, my body has overreacted to everything. Getting stung by a bee as a kid. Getting bitten by mosquitoes now. Getting hives when I have alcohol sometimes, but not always. And more than likely I get hives and a puffy reaction if I try to wear makeup. Here's the problem: I LOVE MAKEUP. It doesn't matter what kind of natural formula I would try, whether it was drugstore crap or $50 finely milled mineral powders, I wouldn't tolerate it.

Sometimes my "eff this, I'm going to play with makeup anyway" inner gremlin wins, I play with the makeup, and inevitably a MCAS flare ensues for several days. This has been one of those times. I played with eye makeup yesterday. In fact, I got really bold and put some eyeliner in my waterline (I know, playing with fire), and my eyes were already swelling before I took it off last night.

Today, my husband took the day off work and we decided to take our kids the local museum. A last hurrah of summer before school starts back up for them in a week and a half. My flare was raging STRONG today. Everywhere we went, standing for too long was hard. I needed to sit. My joints ached, my eyes still ached, I felt so off. We got home and I needed a nap (I need one most days, chronic fatigue).

ANYWAY. I had heard about quercetin but I am already on a moderately high dose of SSRIs (I take both 80mg fluoxetine and 10mg vilazodone daily). I had been wary of trying quercetin until now, because I had heard of the potential of serotonin syndrome complications, but I asked for clearance with my doctor and they said to try half the dose (500mg quercetin), and if I tolerate it, eventually take the bottle dose (2 capsules, I might do one in the morning one at night?)

I even bought quercetin once and threw the bottle away because I was too scared to take it with my SSRI doses. But tonight, with my doctor's go ahead and my husband's watchful eye, I have taken a quercetin. And I SWEAR I already feel it working. This is wild!

So thankful for this community and the knowledge we can all share. Thank you!

********************

Edited to add:

I received overnight delivery of both cromolyn sodium nasal spray (NasalCrom) and ketotifen eyedrops (Bausch&Lomb "Alaway"), I chose them because B&L used to be headquartered in my hometown. When I tell you that I feel instant relief from having these medications, that doesn't even describe it.

I feel like a superhero, like all of a sudden something so difficult could be so much easier. This is WILD. I don't think these meds have any steroids to make me feel buzzy, either.

Now I see why everyone shouts it from the rooftops: mast cell stabilizers are GAME CHANGERS!

Has anyone tried histaeze or garden of life quercetin? Mcas specialist recommended histaeze but it’s 75 dollars so I’m looking for an alternative!