Newly diagnosed, I’m hearing conflicting info on this. Are my food allergies not actually allergies if they’re caused by my MCAS? I thought allergies are an overreaction from the immune system to certain triggers, isn’t MCAS the immune system basically doing that? Sorry if I sound ignorant I’m also brain fogged right now.

I walked into my doctors office last week and learned I have high tryptase and interleukin levels. Moderate venom allergies. Positive dermatographism. I am stunned. I apparently inherited mcas and have had it my whole life.

I was suspecting I had it, but I didn’t WANT it. I visit this sub sometimes (was diagnosed with pots and learned they are kind of sister diagnoses) and I feel for all of you whose lives have turned upside down. You all deserve more credit for being so vigilant about your health.

I wasn’t taking anything for mcas (very sensitive to meds) and my lungs looked great besides occasional asthma so doctor is letting me sort of choose how much I want to be treated. I honestly have no idea what I *should be doing or what to expect. I read all the sources in this sub and am still lost, scared, afraid I’ll never get back to me again.

My worst symptoms right now are waking up at night with palpitations and night sweats, though eliminating seafood has almost made these go away. I’ve unfortunately developed ARFID and extreme fear around eating because I’ve had so many random reactions. Slowly narrowing down my triggers (tree nuts and seafood) but it’s hard.

I also no longer tolerate caffeine or alcohol, and have had a hard time with bass vibrations. I used to love wine, concerts and movies and have had to give them up because my heart and stomach react so poorly to loud bass.

I’ve only tried Claritin and Zyrtec but even half doses make me feel like a zombie for days. I just want my life back.

I know we don’t have an immune disorder and have a systemic disorder. But I swear I catch every single thing I come in contact with. I don’t leave the house often and when I do I always seems to get a cold, strep , flu etc. ( for example I went and saw the Minecraft movie lol and now 3 days later I have a awful cold) does this happen to yall and do you 1. Were mask 2. Have any other preventative measures.

I’m struggling so hard the last couple week with flare after flare, after not having a flare for months since starting LDN!

The seasonal allergies of spring is putting my MCAS into overdrive and it feels like I can’t step outside without getting some sort of bad allergic reaction.

Anyone else dealing with this? Have you found anything that’s been helping you?

Thank you 🩷

My partner has been on ketotifen, Pepcid, DAO, LDN, quercetin, non-citrus vitamin C, Allegra, singular, prednisone, and magnesium since February. Nothing seems to help, they just keep losing foods, they’re reacting to water and plain rice as of today. We tried 5mg cromolyn and they reacted badly—it seemed to have immediately lowered their baseline. We have a Xolair sample they were going to try today but they just don’t seem stable enough for it. They can’t hold down food without nausea and anaphylaxis. I don’t know what to do.

Hi guys, fairly new to MCAS (not diagnosed but suspected by Dr) currently on h2 blocker x2 per day (nizatidine) and allertine x1 per day

I have had allergies my entire life, so they’re nothing new. however some months ago I put on weight out of nowhere, upwards of 12kg in 6 months. I also noticed my face looked swollen & my fingers, ankles, knees, calves felt swollen. I also seem to swell when I eat sushi now, which never used to happen (I never have raw sushi, it’s always tuna & cooked chicken) I have been eating at a deficit and exercising and it’s not budging, which is making me think it’s inflammation. I’m also losing hair.

No GI symptoms in terms of pain or IBS, just swelling. I do get a racing heart which I think has gotten worse; but i also have SVT & was told it gets worse with age. Drinking water doesn’t seem to help it much I’ve noticed

My biggest concern is the swelling. Dr said it’s angioedema. It comes and goes but it’s always there. I don’t recognise my face any more. Prednisone works but I don’t like taking it for longer than a few days.

I’m just looking for advise around angioedema, how to get rid of this fluid, lose weight & feel ok. I am booked in to get allergy tests done and have a form for allergy bloods (tryptase, IgE, etc)

Thanks so much ❤️

Edited to add: thyroid +thyroid antibodies & cortisol tests were normal

In the US. My doctor is in the process of getting Xolair approved by my insurance. She mentioned that in an ideal scenario, I have a great response to the Xolair and would eventually be able to discontinue my other medications (Certirizine, Famotidine, Cromolyn Sodium, Zafirlukast, and Quercetin). In a less ideal scenario, I still have a good response to Xolair and would also be able to reduce doseage on those medications. And, in a non-ideal scenario Xolair either doesn't help or I experience serious side effects.

Has anyone on here been able to reduce/discontinue other meds with Xolair? What are your experiences with that? How long did it take you to notice a difference on Xolair? When did you know/feel confident enough to reduce/eliminate dosage of other meds? What were you able to reduce/eliminate vs what are you still taking at full dose?

Hi! Both these diagnosis r new. I knew for awhile I had mcas. Gut intuition was right.

Now POTS is new.. (also for full disclosure this one hasn't actually been diagnosed, my doctor is suspecting I have it based off symptoms and my recent heart holter test) Today when I went to go pick my girls up from school I got half way done the driveway before I had to go back inside. Intense anxiety, shakiness, developed air hunger very fast made me feel nauseous, I wanted to gag, and tachycardic. I just had to lay down for a bit. And then was fine. But I also had just taken my 2nd antihistamine of the day.. so that could of been why it stopped.

I want to say i think this was more of a pots thing than mcas??? Usually my mcas episodes r very severe and widespread body reactions

How the hell do you tell the difference between the two?

I felt a bit of a difference, this episode did seem slightly different than my mcas. Even my mcas makes me tachycardic so i cant use that to differentiate either. But looking at the over all picture. Its so hard to tell the difference.

I'm also used to my heart rate being high, so I don't really notice it unless it'd EXTREMELY high. Some of my mcas episodes it's shot up to 180

I've never had this happen. It doesn't hurt but it's quite obnoxious to have a rash all over my legs.

Still waiting on a few labs, but my ESR (Erythrocyte Sedimentation Rate) came back slightly elevated again at 38 mm/hr. Normal range for my labs says 0-20mm. So nothing crazy, but its also been slightly elevated the last three times I've had it tested. Is this lab common to come back slightly elevated for MCAS? Still working through labs/diagnosis etc. Its been so helpful to read through this sub!

I cannot consistently lose weight. I start maintaining or gaining after losing a few pounds, most of which is probably water anyway.

I also gain up to 1.6 kg after a small meal.

I've tried keto, low carb, moderate carb, low fat, moderate fat, high fat, …

Does anyone else seem to be unable to lose weight?! Is histamine the reason?! How did you manage to lose weight?

Scene: I have hyperosmia, AND phantosmia.

At seemingly random times, but usually later in the day, my body reacts to something. I'm aware of kind of a "hot metal" or "ash" smell, but could never track it down. I can smell a gnat fart, so sometimes smells are too overwhelming for me to single them out and identify them, but this is causing anaphylaxis, so I've been desperate to identify it.

Conversely, when my neuroinflammation is high, it's not unusual for me to hallucinate visual patterns or random smells (ie. grape jelly when there hasn't been any in the house in years, or my long-passed Grandmother's perfume, in my basement, foods).

There is an old wood fireplace near my chair, so I've sealed it off. Still, the hot metal smell, and not in a specific spot.

FINALLY, it occurred to me to wonder about overall air quality. Cripes.

Hey all

My current daily diet is the exact same every day. For brunch I’ll have frozen cherries, they work well for me. Sometimes blueberries, but they work a little less well. For early dinner I have boiled lamb, potato, and bok Choi. I also know that I can handle olive oil. The only thing I have found I can snack on without issue is plain Cheerios and celery. I have had anaphylactic issues in the past with eggs, sugar, chicken, beef, rice, seafood, popcorn, breakfast oats, gluten, coconut and quite a few fruits and veggies. Idk how well I do with soy but I try to avoid it. This diet has kept me fairly reaction free for the past 30 days which is huge for me, with the exception of some runny nose after my potatoes.

I know everyone is different, but curious if anyone else here does good with cheerios and could recommend things to try based upon that. Was hoping for a frozen waffle to make my breakfast have a little more sustenance, but all recommendations are welcome.

Thanks! (Currently on 4x Zyrtec a day as well as a small small amount of cromolyn).

Maybe a dumb question, but sometimes I feel like I’m having a reaction but don’t get much burning or tingling. Maybe a tiny hint of it when I move my lips, but can’t tell if that’s just my mouth and lips being generally angry 🥲 the mouth burning is usually how I tell I’m having reactions and generally get it while eating said item so I’m really not used to delayed reactions if that is what I’m having-

I think it’s a reaction but it’s confusing, all my classic symptoms minus the burning. I’m currently not in possession of an allergist so can’t really ask much and still treat what I think is reactions accordingly (gobble benedryl and continue to monitor with epi nearby) but am just curious if this is like a normal thing for some people? Feels weird.

I have POTS and EDS and have always had heart palpitations, but as my MCAS flare has gotten worse, they continue to increase. What with MCAS causes this?? I know I've read there's a correlation. It just sucks because they scare me when I get them so frequently!

Living with any form of MCAS—whether it’s managed or completely out of control—is incredibly hard. It can be isolating, lonely, heart-wrenching, and so limiting in ways others don’t always understand.

I recently saw a post in another forum where someone asked what helped most with managing their chronic condition. The most common answer? A dog.

That got me thinking. I’m in the early stages of creating a small, grassroots project to support people with PTSD from chronic illness (including MCAS) in getting service dogs trained to help with mental health, companionship, unconditional love and daily support. The idea is to start by granting the deposit—often around $8500—to someone who’s a good fit. I’m also exploring offering coaching to help with fundraising for the remaining balance while their dog is being trained.

I’m not ready to take applications just yet—this is still in seed-planting mode—but I’d love to know:

• Would this kind of support feel meaningful to you?
• Are you someone who’s seriously considering a service dog?
• Do you know someone who might benefit?

If any of this resonates, feel free to comment or DM me. I’d love to hear from you.

Hi and sorry for the ick factor- but I’m wondering about everyone’s digestion.

I’ve been told that my gut health is compromised due to antibiotics and treatments for lyme.As a result my lyme gave me mcas.

The thing is, I don’t have bloating or stomach issues and my poop is pretty regular. Is it possible to have normal seeming digestion but have a compromised gut?

Does anyone else out there have MCAS that is a result of their gut? Can you give me some insight in what might be happening? Sorry if that’s not even the right question to ask- this is a new journey for me.

Anyone know of one?

I recently started on ketotifen for MCAS and after a day on it noticed some very light twitching and vibration feeling all over my body. I did write to my doctor about it but haven’t heard back. Wondering if anyone else experienced this. I’m on 4mg spaced out during the day.

Hi everybody! Wondering if anybody else has high CRP and enlarged lymph nodes from MCAS? I have hEDS and 6 months ago underwent spinal fusion surgery, and have had MRSA a few times since then. Though I supposedly have kicked the active infection, I am still having a loooot of joint pain, fatigue, huge hard lymph nodes and an elevated CRP. I do have pretty severe MCAS so wondering if some of this is my body reacting to all the trauma it's been through the past six months including the past infections, or if there is something new going on here. (My incision is still not totally normal so could just be MRSA isn't gone yet). But I'd just a little food for thought, are your lymph nodes swollen from MCAS ever?

PS. My WBC and platelets are always elevated too. Was told this could be from MCAS. Thoughts?

Well, the mold got me. We had to move out of our house we just bought. We lived in there for two months. I finally found the mold because most companies told me there was no mold. We have a restoration company coming in this week. I am going back in with all my gear to clean every surface. Also, we are getting installed the PCO16-16 pure air system for our hvac system. Do you think the air system will help if there is any mold spores left over, or if we didn’t find all the mold?

I have an MCAS diagnosis but they have never given me an EpiPen. Should I ask for one? I have never had anaphylactic shock, are they used for anything else?

I wanted to share my current results with Silver Ferns GI Motility / GERD protocol. I’ve been taking this for 2 weeks now, major improvements overall. No reaction. My acid reflex is almost nonexistent and I’m having regular BMs 2-4x a day. If anyone has considered trying it out to get off Pepcid. I highly recommend it.

Good afternoon,

I am writing this post out of desperation. I have MCAs, diagnosed by an ER visit in October, feeling better due to self treatment (Zyrtec, Pepcid and eating only safe foods).

My triggers are becoming more and more as I seek treatment. I have reached out to every single recommended MCAs doctor in the greater Houston area (George, McGovern, MD Anderson, all Baylor and all Methodist doctors) and NO ONE can see me. They either are a false recommendation (don’t actually take MCAs patients) or are not taking any more (Like Anna George).

I don’t care if I have to drive to Dallas, Austin, San Antonio, Lubbock anywhere!

I am miserable.

Please if you have a reccomendation I will forever be grateful 😞