I dont know how much of this is related to MCAS or if its also something else, but basically every single night I wake up after about few hours, and im FORCED to move around for about 5 minutes and also stretching very lightly helps alot. It also feels like my whole body has completely rusted too. If I dont do that, I will not be able to sleep at all, and wake up every 20 minutes and gasp for air for absolutely no reason. I recorded my sleep and I breathe normally. I have an intense restlessness and breathlessness too if I ignore it.

I can make this restlessness even worse if I:

1. If I dont move enough throughout the day
2. If I exercise too much throughout the day (it will trigger adrenaline dumps at night, that gets fixed by 15 minutes of walking around + drinking water + going to toilet.
3. if I take supplements that lower cortisol too much, or even meditate too long
4. If I eat triggering foods. I will be forced to walk around for a while and if I did that, I can reduce the symptoms by meditating for 1-2 minutes and massage and stretch very lightly. If I meditate too long, the restlessness comes back and I need to walk again.
5. If I dont drink enough water

It seems so absurd to me that I have this and I have never heard of anyone else having this, ever. Is it maybe because my cortisol levels are too low and this triggers my MCAS? I have done a cortisol test in the past and even though I was severely stressed at that time of taking it, my cortisol levels came back normal, exactly in the middle, and I was shocked.

edit: I also get restlessness during the day if I dont move enough, but its more disruptive at night

Anyone got swallowing problems as in dysphagia?

Hi friends,

I’m new to MCAS and I’ve been reacting to a lot lately. I have been having a really hard time finding clean, simple ingredient makeup, face and hand moisturizers, shampoo/conditioner/hair serum, toothpaste, etc. I am also highly allergic to coconut/its derivatives, which are in most of these products. Any suggestions that you guys use and love? Thank you in advance🙏🏼

I just saw a message in my MyChart that they never sent me an email about. Turns out this flareup I've been in was because my doctor cut my ketotifen dose in half because she is uncomfortable with the dosage I've been on for over a year.

I recently moved to this state and haven't been able to establish care with any specialists so I've been just getting my prescriptions from my primary care doctor. And this month has just been crazy busy, so I didn't even notice the prescription was different or anything. But anyway, she decided to just lower it and said if I want to get back on my old dose I'll have to find a specialist. Well gee, thanks, I'll get right on that now that I'm back to feeling fucking miserable all the time. That will make it so much easier!

I am not diagnosed with anything yet, trying to figure it out with my doctor. I have an appt next week to talk about it with her. But I'm just curious, because I am not familiar, if you have an epipen and have to use it, do you need to go to the er? They don't prevent reactions, right, so if you're going into reaction consistently, like, how often are you taking this injection, and do you have to go to the er every time you use it? If you don't know what you're allergic to yet, are you just taking it and going all of the time?

Hello. Recently (after Covid + mono) I have extreme allergic reactions to environmental allergens and perfumes/chemicals. But I do not have food allergens. Does this sound like MCAS or regular allergies? I have an appointment with an allergist this week.

I have been going crazy tryna search for the grey holder which connects the two epipens.

I really want one as I always carry 2 and think it’s more practical. Is it a holder only given by medical staff or something ??

I’ve searched as many phrases as possible but can’t find it anywhere to buy it.

Any help would be greatly appreciated!

My mast cell started when I was doing clean eating trying to lose weight at 14. Slowly but surely I couldn't eat leafy greens, bananas, red onions, avocado, bell peppers, mushrooms, quinoa, all kinds of clean "healthy" foods. I used to be able to, but at some point they would all just suddenly start to trigger. Took 11 years to get a diagnosis and I just avoided all the trigger foods. Now I can eat some of these thanks to Nalcrom, but some of them still produce too strong of a reaction for Nalcrom to curb. Anyone else have this experience? I want to try a low processed food diet but I'm scared it's going to cause more MCAS food triggers to appear.

Has anyone ever had a seasonal headache that lasted a couple of weeks? It started when all these leaves started falling. I am allergic to Tylenol, so I have been taking ibuprofen, which doesn’t work as well. Has anyone ever had this happen?

I’m between MDS and will not be able to get new scripts still mid-Dec. Online ok. I have been on these drugs for years. A most sincere thanks!

It all started right after a stomach viral infection, at the beginning it was mild, some tingling and itchiness in my ears, nose and throat. Then it escalated to not being able to swallow any food, and then it came: the anaphylactic shock.

Fast forward a week later a peanut allergy was confirmed. – What? Why? I’ve been eating peanuts since I was a baby… My mom ate peanuts during her pregnancy and while breastfeeding. I used to be an elephant! Peanuts were my go to snack! How can I become allergic to it all the sudden? -I thought to myself- Nevertheless, I had enough evidence to simply take them off my diet.

Everything was fine, no more symptoms. If I avoided peanuts like the plague, I was going to be alright. Or so I thought… Now, an upset stomach ‘Perhaps is the bread… Since peanuts are not longer my quick snack I had to rely on toast.’ I decided to cut it out. A couple of months later, I was feeling perfectly fine. No more stomach aches, no more diarrhoea mixed with constipation episodes, no more body aches, au revoir numbness and tingling throughout my body, goodbye brain fog, yay for me!

Was that it? Of course not, silly you! Go ahead, eat a salad, and grind some peppercorn, what could go wrong? and so silly me added a little bit and boom! Tingling lips, scratchy throat, drop in body temperature, shakiness… ‘Try to breathe and take some antihistamines just in case and start heading to the hospital.’ Frigging peppercorn? You got to be kidding me girl, you just lost your damn mind! Who’s allergic to that? I thought. The drugs worked quickly, no need to stay in the ER.

Next day? All hell breaks loose! I was cooking breakfast, some spinach, mushrooms and eggs and all the sudden a reaction, yes sir, another one. Ok… You know the drill take the meds and wait, no need to go to the ER, the meds will work fine… or not? I can’t breathe, why can’t I breathe… Might as well take my BP and check my SPO2 levels before I interrupt the ER with my non-sense… low… too low for me, now… Oh boy… Hospital, now… Wait… I can’t breathe!! Can I swallow?? Drink some water while you call an ambulance, and let your emergency contact know you’re being taken there… There’s not enough time, the ambulance is 15 minutes away… take a cab… you’ll get there in 6 minutes… I am fainting, am I going to make it? ER nurses rush out, hives all throughout my body ‘What did you eat? What are you allergic to? Start IV Benadryl… Stop scratching or you’re going to make it worse…“

Back to a so-called regular baseline: “I… I didn’t eat anything, I was cooking! I didn’t add anything that had peanuts in it, not even cross contaminated, no peppercorn this time just some ol’good spinach, mushrooms, eggs and tomatoes… -Wait a second...- My emergency contact says: -You added tomatoes? You know, I noticed the other day while we were at the farmers market that right after you were smelling the tomatoes and touched the plant a couple of minutes later you started getting itchy and having a runny nose, you blamed it on your seasonal allergies…- Doctors look at me with their tired faces ‘Are you allergic to tomatoes?’ ‘No, here are my skin prick test results and NO tomato allergies…’ ‘Well, you’re allergic to latex so it may be cross contamination, you know?’ ‘And the peppercorn too?’ I looked at them as if I was Dr. House and had a better understanding of this.

Went home, e-mailed an immunologist and his answer was simple: ‘How many visits to the ER in how long, and haven’t they ordered this and that test? Next time it happens show them this and have them call me. In the meantime, let’s start a low histamine diet. I went over your BW and there are things that look different.’

No more episodes like this since the last incident a month ago. I followed a low histamine diet as ordered by my Dr. So far, I hadn’t reacted to applesauce -home cooked applesauce-.

I am afraid, I am afraid of every single food. I am afraid of smells. How come I can be triggered by smells? Why am I getting itchy? It’s the sun, only the sun. Ana, you just lost your mind, you are having serious anxiety attacks that are reflecting physically and you’re disturbing the ER’s flow. Stop it, it’s all in your head, you can’t be allergic to frigging everything, you can’t be allergic to the sun. It’s not a rash, it probably is a mosquito bite… a mosquito that loves to bite you on the exact spot every single time? Oh look, another one… might as well mark them because it’s all in your head…

Hives, hives on my face, itchiness… what is going on? I haven’t eaten anything… Hives, hives in the exact same spot I had them when I had an allergic reaction to the peanuts I ate months ago, the hives that started all of this?

Think, Ana, Think. What have you done differently in the last year? New city, a city so polluted by everything, that was a big change… That medication that your Dr gave you… remember, that medication… What was it for? Right, HPV… you and your latex allergy and your ‘I guess I trust my boyfriend who’s been with you for the last 12 years…' That trust lead to an HPV infection, to a medication that has barely been tested… Wow, Ana, you did this to yourself! Goddam Imiquimod… Search every scientific article you can find, you were trained to do this, weren’t you pursuing a PhD in neuroethology?

ER again… Small city with it’s small ER… Run the test please, give me an answer, give me a magic pill and stop this… ‘It sure looks like MCAS but we need to rule other things out… In the meantime hang in there, you’ll be fine.’

100 pounds later I am not fine. I'm surviving on applesauce sometimes, others with water only. I am not fine and the physicians still think it's too early to call it MCAS even though some tests point to it there could be other things at play due to my 'Family History'.

In the meantime I hang in there, losing my social life, hating everything and anyone and attacking anybody who tells me 'You know, it's all in your head. I myself have food sensitivities that flair when I'm stressed out.' I hang in there trying not to hang anyone who offers 'Well intended advice.'

This is one symptom I have that I have never heard of anyone else having. I get tiny marks that look like tiny cuts on my inner thighs in distinct areas during a reaction. Near my groin and on the inner side of my knees. Has anyone heard of this? Some seem to start out as little blisters.

My house was recently cleaned with a cleaning product that I am reacting to (I’m not sure what). The fumes are relatively strong and sting my throat and make me cough, but I’m the only person reacting in the household. I’m currently wearing a mask, but obviously that’s not tenable forever. How do I clear out these fumes as quickly as possible? Any tips?

I just tried Wellbutrin for about 3 weeks. It caused itchiness and tongue burning but I thought maybe it would subside.. long story short, it never did although it did lessen. I just stopped taking it 3 days ago and I’m still itchy. I’m freaking out I permanently f’ed myself. My mcas was so mild, really just histamine intolerance- I’ve rarely had all over itching, only when pollen is off the charts and I’ve never had tongue burning. I’m so upset. Should I increase Pepcid and Zyrtec for a week ? Longer? Hopeful replies only because my anxiety is sky high right now.

Just wondering about this I have seasonal affective disorder and just started using my satellite this morning. It definitely helped my mood and energy, yet I also started having a little bit of chest pain this is one of my mcas symptoms . It could have been something else but it just makes me wonder. How have you guys done with SAD lights?

I got nexplanon (arm implant) removed a year ago now due to other issues. I’m now starting to think I’d prefer those issues over the hormonal related MCAS ones. It’s like every two weeks you can’t get a break as your cycle is always doing something to trigger MCAS.

For those who are on progesterone only do you find your symptoms are better / more under control? Or does progesterone actually make things worse (by adding a foreign substance into the mix)?

I have ME/CFS and recently came across MCAS thanks to that sub’s suggestion. I’ve really appreciated reading and listening here and just had a few questions as i’m trying to understand my debilitating food reactions. Hopefully this isn’t too convoluted, thank you to anyone willing to read this.

Question:

Does MCAS hinge on histamines? And is there anything that presents similar to MCAS I should look into?

Context:

I contracted a viral infection that started as conjunctivitis, swollen eye and cheek, bell’s palsy droop - all in one side of my face only and immediate food reactions. To this day is still varying degrees of swollen and drooping when I have food reactions.I also have nerve itchiness in face/neck/ear - arms (tho rarely) - that is triggered mostly by food and drink. Every day new rules. I could have a sip of tea and my entire being feels like it’s crumpling. It’s instant so doesn’t feel like digestive, more so allergic?

Non-reactive foods: raw vegetables, meat proteins, bread, sugar, highly processed foods (i try to stay away from this tho)

Reactive foods: ever changing. but could be anything from alcohol (stay away from this now) to anything cooked or from the fridge to carbonated water. vitamins or vitamin fortified things like protein powder and emergen-C.

I don’t seem to react to high histamine foods in particular, and Benedryl and Claritin haven’t improved reactions. Hydroxyzine also has no impact or possibly negative impact. (I took 10 mg and noticed the next day my food reactions were way worse- could be coincidental tho. ) I also react poorly to probiotics. So some of this feels very MCAS-y while others do not.

As far as I’ve been able to test, I have no food or environmental allergies. But am waiting on some additional blood work requests.

I feel like my body is constantly reacting to everything and I just don’t know how to get it out of that cycle. Thank you to anyone who has read all of this. Just looking for some anecdotal experience or research ppl have come across, and apologies if this has been discussed redundantly!

Most times I have a bowel movement, I'll end up bloating, which sucks. I had one like two evenings ago and have been bloated ever since, despite moving back to neutral, non-problematic foods after the bloating began in order to not provoke a(nother or worse) reaction. I have had no relief this time.

Is there any course of action I can take to get rid of the bloating? Is Gas-X my only option?

After having "weird random symptoms" my entire life as every doctor has called it, I finally got diagnosed with mcas and started some meds. It took anaphylactic shock to get here, but I'm actually kind of grateful. My blood and 24 hr urine tests came back normal, but based on my symptoms and not having much to lose my allergist was cool with seeing if meds helped so I started pepcid and zyrtec a few days ago.

My face was one of my worst issues; it always burns so bad I can barely sleep, if anything touches it I get a rash and hives, can't put any product on it and it randomly gets really puffy. Now my skin is smooth, not red, still a little tingly but way less. I've always gotten randomly feverish and that's started to go away. And overall I just feel so much less inflammation in my entire body.

I still am having severe gi issues (I also have gastroparesis), but at my next appointment we're gonna add cromolyn to see if that helps. Just finally having a win and wanted to share!

Need hope stories. People who live a normal life now. Please and thank you

How does one control/heal POTs? It drives MCAS

Hi there. I had food intolerance testing awhile back and learned I have fructan intolerance. I’m fine with other FODMAPS, and already don’t eat wheat due to celiac. Fructan/Galactans are in onions and garlic and several other vegetables and legumes and identifying fructan as a trigger was eye opening. My experience of these triggers is that they would cause an immediate GI reaction but then my whole body would freak out and I’d go into a fibromyalgia type flare with extreme fatigue and widespread pain lasting days.

HOWEVER, i recently tried a dietary enzyme that you sprinkle on your food, Fodyme. It contains lactaid type enzyme plus an enzyme for fructan/galactans. A few years ago, my GI/immunology doc indicated that this type of product would be available soon and he had patients participating in research studies to develop them as an OTC product.

I don’t go too wild with fructans still but for example I can eat Brussels sprouts and things with a LITTLE garlic and/or onion in them without becoming sick at all, much less bedridden. I just get a little burpy but even that is mild.

Everyone’s triggers are different and this isn’t an MCAS treatment per se but my theory is that keeping my GI system calmed down is helping keep the rest of my body calmed down. Having celiac it’s already hard enough to eat in restaurants or at other people’s homes so this is just another step towards having a more normal life and being able to socialize.

If this helps anyone that would make me happy.

Hello, My 2 year old is not yet officially diagnosed but a pcp he saw is sure he has mcas. His main trigger is viruses. He started preschool in July and got covid right away and it kicked everything off starting with a burning tongue. Now everytime hes exposed to any virus he is thrown into a flare. He is extremely hypermobile and his hips are the most flexible. He likely has Elher Danlos Syndrome. The pcp we saw isnt our regular one we just got lucky with her on a same day appointment and she happened to be a high needs doctor and has mcas herself.

We went to the allergist he was very nice but said he didnt know much about mcas and was zero help. My kid takes 5mg zyrtec daily, ive started quercetin for him, butterbur when possible but its hard to mask in food, and i give him nasalcrom. none of it is enough to prevent a flare from virus

In a flare his groin hurts so bad. from his penis to his butt. I am assuming its Prostatitis. Its pretty extreme pain . I avoid motrin but give it to him when in extreme pain but worry its worsening the histamines. Have any men experienced this? any advice on how to treat it? he has a rheumatologist appointment end of January. Im gonna see his pcp in the meantime and ask for urine test and maybe scan of his pelvis.

Which one should I choose?

Hey guys, are there any whey and soy free, non elemental, high calorie tube formulas that are well tolerated with MCAS? Like, every whey free formula I find has soy and every soy free formula has whey. The only formula I’ve found which has none of these both has 100% pea protein where I found mixed information. Some say it’s well tolerated and others say it’s not. (What are your experiences?) Currently I’m on a soy based formula which I don’t tolerate.

Any recommendations? Does someone have experience with peptide formula like Survimed OPD HN?

I had Neocate jr for over a year but my dietitian in the hospital says, that I should no longer get this one (but she also increases my rate although I don’t tolerate it soooo…)

Haven’t seen L-Ornithine mentioned much here though it has an anti-inflammatory effect. Has anyone taken it? Experiences? L-Arginine is a precursor but more directly involved in histamine production and may produce side effects. Has anyone taken both?

Thanks!

I was recently diagnosed with MCAS, POTS and HMS (hypermobility).
A few days ago I started taking the medicines prescribed by my doctor: a high dose of Fexofenadine (and Fludrocortisone for POTS).

For the last few weeks, almost every joint in my body has clicked, often painfully. I need to use wrist splints daily on both hands because I feel like they are so weak and fragile I can't sometimes hold even a bottle.
I also have a horrible back pain. It's always there... Some days I wake up and I feel like all the bones in my body are glued together.

I would like to hear your experience - do you feel antihistamines help the joints and back?
I don't know if I can expect that from antihistamines.
I wonder if I should see a rheumatologist for this problem.

Thanks

I'm putting together an international spreadsheet of recommended doctors, and am having a bit of a hard time with a few of the doctors in Spain, thanks to me being hopelessly monolinguistic. All the Spanish doctors were recommended to me by a Polish person, who was given a list by their doctor, so I don't know how good or accurate the recommendations are. If anyone who speaks Spanish can help be find this information, it'd be much appreciated.

I cannot find: "C. Teodosio - Servicio General de Citometría, Centro de Investigación del Cáncer/IBMCC (USAL/CSIC) y Departamento de Medicina, Universidad de Salamanca, Salamanca" I think this might just be a researcher, and not a doctor? If they are a doctor, I'd appreciate any info, especially a website and some contact information.

I cannot find: "Red Española de Mastocitosis (REMA), España" I think this might just be a support network, not a doctor's group. If it's a useful group, I'll add it as an additional resource. Once again, a website and contact info would be great.

I cannot find the website for "Instituto de Estudios de Mastocitosis de Castilla La Mancha (CLMast), Hospital Virgen del Valle." This was as close as I could get, which I used for contact info: www.orpha.net/es/institutions/institution/229119

I'm posting this on r/Espana as well, in case anyone there can help. Any info about these doctors is appreciated. Also feel free to give me the info for any other good MCAS doctors anywhere in the world. The more I can add to my list, the better.

Edit: So, r/Espana doesn't allow questions, so my post was automatically deleted. I've messaged the mods, begging for an exception, but this might be up to us. Any help is appreciated.

is anyone else flaring rn because of higher mold levels in the air? my lungs feel so sensitive and start burning so easily when they definitely didn't before the levels increased. i've been double masking outside and in buidings that aren't my home to reduce any exposure or reactions, and having my portable air filters going practically 24/7 inside my apartment. if i go outside i have to take a shower when i get back home lol. it's so frustrating to feel set back so much.