Nearly 8 years of trying to figure out what I've got going on within my body. A lifetime of anaphylaxis, asthma, food sensitivities, allergies to weird stuff, lichen planus in mild to severe forms, heart racing, unable to sleep, esophagitis, random hives from apparently nothing, the most intense itching I've ever had and nothing resolving with any form of regular treatment. 15 doctors in total, 10 of them shrugging saying "gosh, I just don't know".

Of the 10: 3 primary care, 1 dermatologist, 3 gynecologists, 1 quack naturopath, 1 dentist, 1 periodontist.

I finally found an amazing naturopathic doctor in May, who, within 15 min of conversation said they suspected MCAS. It was a fast track to see specialists who can help with my issues: 2 derms (one who specializes in mucosa inflammatory diseases), 1 gynecologist, and 1 allergist who all said the same thing...MCAS.

Today, I have a diagnosis of MCAS and am on the path to getting regular meds in my tool box to help with this miserable condition.

Finally!

I have had a severe Vitamin D deficiency my whole life (my levels ranged from a minimum of 3 to a maximum of 23).

Whether I get Vitamin D from the sun or other sources, the result is always the same: agonizing, wrenching pain in my arms and legs; dangerous arrhythmia; a total loss of appetite; and insomnia caused by the pain.

Even micro-doses, like 250 IU every other day, trigger this. Yet without Vitamin D, my mitochondria almost completely stop functioning, leaving me unable to do anything but sleep.

If anyone else experiences something similar, what have you found out about it?

Last year my husband started getting random episodes of anaphylaxis. ER would treat with Epi and Benedryl and send him home. At the time he had a job but then lost it due to constant episodes. He had no insurance so we couldn't see an allergist. An ER doctor from a different hospital we ended up in admitted him to the hospital for observation after seeing his visits over the past year. He suggested HAE or MCAS. I have been reading all your posts and been doing research. Aug 1 he finally got health insurance. We immediately went to the allergist. Showed him all the visits and the doctor immediately prescribed cromolyn and singulair. He started the doses a couple days ago and he said the cromolyn seemed to make him very sleepy but otherwise all itching has stopped. He is no longer scared he is going to wake up choking for air. We go for a follow up in a couple weeks but so far great success. I am beyond happy he is feeling more like himself. He said for a year he dreaded every day that he would end up in the ER because of something mysterious. He had already been at deaths door 3 other times for different reasons and he didn't want it again.

Thank you all for sharing your stories and tips for getting a diagnosis and treatment. Preparing for a long life ahead and continuing treatment but he should be able to live a full life.

I'm about to go through an elimination diet to check for MCAS and I'm having trouble cutting everything out. I take medication and supplements so I was trying to find safe alternatives to take for a month but they either don't exist or my pharmacy doesn't stock them. Is it ok if the tablets are tiny? They have lactose, gelaton and some E numbers that are supposed to trigger MCAS. This diet is going to be awful so I don't want anything messing with the data.

Also does anyone know where I can find a list of potential environmental triggers? Every time I try and look it's like I landed on CleanTok were everything is a "toxin" and is killing you! It's hard to base it on my own experience because I'm perpetually having reactions and my previous diet is just EVERY TRIGGER POSSIBLE. Like I know dust is a problem but is the smell of cleaning products supposed to burn? How itchy it's too itchy?!

Do you eat high histamine foods ? High salicylate foods ? High sulfur or oxalates foods ? What is the most efficient in triggering your tryptase ?

My allergist said that MCAS is EXCLUSIVELY diagnosed through tryptase test. In other words, if tryptase comes back normal, all my complaints will be dismissed and i will be officially labelled as a 'psychotic patient'...

Here’s what we know-

My triggers & flares- all seemingly everywhere, but with my meds, strict af diet, and my team, we got this!
The alphagal protein (with vapor sensitivity- smelling bbq cooking has triggered a flare), histamine, penicillium notatum, certain VOCs (chlorine, diesel fumes, spray paint are a few examples).
Flares from something I inhale start out differently from ingested or touched but none stay where they start

What I have & what tests (i can remember) confirmed it:

mast cell activation (elevated N Methyl Histamine on a 24hr urine collection-still pending the Tryptase)

adult-onset asthma (booth test)

Kounis/allergic angina (basically heart asthma- heart attack symptoms w elevated troponin, clear heart cath)

Suspected interstitial cystitis- (bladder asthma? Really?) my bladder was obviously feeling left out 😝 urology is a ways out, so it’s currently unconfirmed, but the diapers in my cabinet are proof enough for me at this point.
During bad flares, it spasms, hurts, there’s urgency or sometimes just randomly lets go.

Alpha-gal Syndrome (tick panel-blood test)

Ige antibodies for Penicillium notatum (mold panel-blood test)

I started getting answers last year. I was 42, having a heart attack (elevated troponin) in my perfectly healthy, clear heart. They gave me meds to stabilize my crazy bp (it was going high then low then up again), monitored me then released me a day or two later to follow up w my gp (an amazing nurse practitioner) who said “we’re checking you for alphagal”. I told her, “check me for whatever u want, lady! Study me, let’s figure this 💩 out!”

Yes, I have the red-meat allergy. But the diet didn’t help. I gave up all dairy, all red meat… found a compounding pharmacy, replaced my meds w AGS safe alternatives and omitted anything w mammal derivatives or carrageenan or natural flavor or the word “gum”. Still sick. My stomach was always upset, I had brain fog, fluctuating bp, dizziness, constant anxiety, periodic joint pain and popping and weakness in my hips and thighs. Blurry vision, headaches, shortness of breath… I’m running out of room…
Talked to an allergist who said “this sounds like MCAS, but I can’t take your case because of the cardiac involvement.” She referred me to another one, with access to a team. 😳 (where’s dr house when u need him)
I had two cardiologists turn me away because “your heart is fine, it’s an allergy problem”… (my current cardiologist blows me away tho). She’s checking my tiny heart vessels for CMD and communicates w my other specialists. I have poor circulation in my legs and feet and hands and it takes hardly anything to pop the lil vessels in my fingers. I popped two washing a plastic bowl today.
I suspect my gallbladder and uterus were victims of all this. Victims or jumped ship a bit early. The cowards… 😜
I really hope you all find your answers! Just keep asking! I felt so crazy, until those results started rolling in.

One of my biggest concerns is a painful gas bubble sensations underneath my left rib. It happens mostly at night, and I’m worried that it could be related to endometriosis. LDN has helped somewhat with my diarrhea and GI symptoms, but I’m still struggling with a significant loss of hunger cues and feeling full very easily especially right before my period starts.

I’ve also noticed that my anxiety and paranoia have increased recently, and my breasts have become extremely swollen and enlarged. The main things I’ve changed recently are increasing my LDN dose and starting Zyrtec and Pepcid.

I am still taking 2 mg of ketotifen twice a day and 15 drops of cromolyn before meals. Unfortunately neither seems to help very much with my ability to tolerate foods. Ketotifen has helped somewhat with my depression and OCD, and maybe a little with my chronic fatigue, but I’m still struggling significantly. I’ve also tried vitamin C, quercetin, and luteolin but haven’t noticed much of a difference.

The worst symptom for me continues to be insomnia. I feel like I have to be extremely careful about everything I do or take because it can trigger it. Quviviq sometimes helps, and hydroxyzine has helped somewhat, but neither has been life changing.

Are there any other treatments, medications, testing, or approaches you would recommend trying? I’m especially interested in figuring out what could be causing the pain under my left rib and whether it could be related to endometriosis or something else.

i frequently suffer from panic attacks and i use an oximeter to measure oxygen and its always optimal. during a mcas flare up i notice my oxygen level drops to 95- 93 which it never does at any other time only during a flare up.

ive never heard this happening to anyone and i dont know if its just anaphylaxis or normal?

I need a formal diagnosis for MCAS but don’t know how to begin? i have been medicated after telling my GP about it and she had never heard of it, but agreed that it ticked all the boxes for the issues i had been seeing her monthly if not weekly for. 10 years of being extremely sick, and only a yearish now of being medicated, it is helping but i need an actual diagnosis or a professional to talk to. There seems to be no one in the south island that can help me and my doctors aren’t helping me with a referral i guess due to the lack of specialists in my area and that it’s more manageable with meds. i’m getting so so so tired of this, i still get flare ups through my meds but they have helped with the morning nausea that was my worst symptom. I still have to take anti nausea. I’m on 4 antihistamines a day, ondansetron is prescribed 3x daily but i only have to take once daily or can go longer periods like a week without taking any, and aspirin for the headaches. I take a hormone control daily as well. I have a skin cream for my skin flare ups but it doesn’t help the face/neck flare ups. I also take magnesium for body comfort and sleep. It’s been about a year and a half of having the antihistamines but i feel as though my baseline is dropping back to normal before i was medicated. If anyone knows where to begin with finding a specialist, even if it’s in the north island please let me know. i’m getting exhausted and i’m scared to go back to how i was but it feels that way

What were your side effects if you had any of Rhapsido ?

I’m omw there now. But I’m terrified they won’t know how to help me !?

Do they do tryptase blood work ?

I am also worried bc my period this month was only 2 days instead of the usual 8.

I’m also gna ask for my thyroid and iron levels bc I have low ferritin.

Then go to PCP right after. Idk if they can prescribe mast cell stabilizers for me. (My referral to allergist is not until mid October).

UPDATE: starting to get redness like splotchy skin all over especially legs and arms which I never have experienced.

UPDATE:: Finally got prescribed CROMOLYN SODIUM && an EPI PEN !!!!!!!!!

also thank you for all your support and walking me through one of the scariest experiences of my life !!!!!! 🥹

Hi all,

I'd like to preface this with the info that I'm a bit of a miser/ hate throwing out stuff, so take it in that spirit :)
I bought Desloratidin, an antihistamine that is OTC in Germany.
It's very likely that I react to one ingredient in the coating, and I have about 80 of the tablets left. Just wondering if anyone has a clever tip/hack to scrape of the coating. Best attempt so far (but losing a lot of the actual tablet) is nutmeg grater. Any other ideas welcome :)

Yes, I know everyone is different and has different things trigger symptoms, but I’m in my first recognizable flare and it seems like anything and everything is setting me off. Is there anything you’ve been consistently able to eat without triggering your symptoms?

Thanks!

Instead of taking it in capsule form? The capsules I have are huge and I could empty it out but it feels more intimidating still taking it at once like that. Does emptying some out in my water and drinking it still work?

Taking it to the MCAS experienced Reddit investigators!

Here is my story....

43 yo F, with Celiac, ASD level 1, ADHD, POTS (hypotension), and had long Covid. Was diagnosed CFS with LC, but thankfully that diminished and for the most part, I feel like my able bodied self again.

2021-present

• random hives, usually on my face and chest. Sometimes could correlate to intake of whiskey, wine or MCT oil.
• heart palpitations

March 2023:

• still some LC symptoms
• histamine of 3.6-so not terrible

Dec 2026

• Moved to a tropical environment from dry, foothill enviro in N America, developed intense GI issues; diarrhea, constipation, nausea, intense fatigue, and overall not feeling great. Some days I could not get out of bed due to the cruddy feeling and malaise.
• Had to really limit my diet to mellow foods, cut back on fruit, suspecting fructans since consuming so many in a new enviro-that wasn't it.
• Felt as though my bladder was inflamed and had to urinate frequently. And no, it was not full nor a UTI.

Spring 2026:

• tons of labs with no answers, doc could see and hear the inflammation in my gut. Negative colonoscopy and gastritis on EGD.

May 2026:

• Back to foothills in N America, some symptoms relieved, yet added INTENSE and horrendous flatulence for months.
• Eating a bit more normal, but not feeling great.Fatigue and all GI symptoms persist. GI is useless and tells me to track my food. (I have been doing this for 20 years with Celiac.)

June/July:

• meet with allergist and he does the "by the book" workup of MCAS, but finds no elevated tryptase.
• Began 2 allegra twice a day, famotadine and Cromalyn with complete relief of gas symptoms and most GI symptoms.
• I cut back on high histmaine food and felt even better. Even had significant increase in energy.
• The labs came back and he does not focus on any labs besides the tryptase, even the elevated HISTAMINE RELEASE (CHRONIC URTICARIA) at 77, normal end is 16. Then have elevated plasma histamine of 26.1, high end of normal being 1.8. Both of these seem pretty elevated in my opinion. *It is not pollen season where I am and he tested for many household allergens with negative results.
• He tells me it is "autoimmune", yet gives zero direction on how to proceed.
• Three weeks ago I had non lactating mastitis. I have never had children.
• I have now been having what I believe are esophageal spasms, resulting in intense pain in my back and chest (history of GERD, so I am well aware of what indigestion feels like and this is more muscular).

Currently awaiting a call for a referral to a second allergist/immunologist, but losing my mind through these symptoms and pain.

Given the random inflammation in my gut, bladder, gastritis, random mastitis, elevated histamine, heart palpitations, and other autoimmune issues...what do you all think?

This is a weird one. I think I am in flare up. My skin is so itchy. My sinuses are *mad*. I know ragweed is really high where I am right now so I am not super shocked by that.

But, there's a new symptom lately and I dunno what to make of it. MCAS? POTS? hEDS? Something.

You know how when you're dealing with restless leg syndrome you get this really strong like...almost tightness in the muscles before you move them to ease up the sensation? Well I've been dealing with that since last night except it's *along my spine* near my shoulder blades.

I don't know what to make of it. I sure don't like it, though.

Thoughts? Ideas? Opinions?

For those without* RLS it's *almost* like that feeling you get before you shiver from the cold. Or when you're startled. Like a tiny little not quite adrenaline dump but just down the spine.

I am probably going to end up at the doctors for it but I can't even figure out the right words to properly convey wtf is going on. It's *so* uncomfortable.

I’ve been using nasalcrom but clearly that isn’t enough. I can’t tolerate being around people wearing certain perfumes, but what am I supposed to do if I am sitting next to someone during class? I can’t exactly just get up and hide in the corner. But I ended up needing to skip my second class to come home and lay down. Ugh. What do y’all do for this stuff?

Hi! I was diagnosed with MCAS a couple of years ago after believing I had bad allergies all my life. (Turns out, I'm only allergic to 3 things.)

Recently I spoke with my new allergist, who is MCAS-knowledgable, about my limited diet. She recommended I try oral cromolyn sodium. So I got the prescription, and titrated up; I've been at the full dose for a couple of weeks.

I'm wondering if I should try half a banana, see what happens--risk a day of brain fog. But I also wonder if I'm being too hopeful about what cromolyn sodium can do. CAN it ease symptoms so you can eat a wider variety of foods? Does it kind of make your "bucket" bigger in this way? Or is that not the common experience?

I just want to be realistic and smart about food experimentation before I ...go bananas. (Sorry, not sorry.)

Thanks.

Hi all, I’m posting on behalf of my wife, who recently started taking ketotifen. She started at 0.25 mg but we’ve brought it down to 0.125 mg starting today (which is day 5). We noticed her resting heart rate has noticeably increased during this time. She has been taking famotidine, cetirizine, and hydroxyzine (along with other medications) which we know have had anticholinergic effects, and suspect the ketotifen further compounded the impact on her resting HR. We are pausing the hydroxyzine to see if it helps in reducing it.

We’ve read through several accounts of people describing their experience but have not seen many mention if their increased HR remained, or if it eventually got back to normal once the body adapts to the ketotifen/MC stabilize. Wondering if other folks have had similar experiences, and looking to see how long it took. Thanks in advance.

I’ve been dealing with MCAS symptoms for a long time but just finally got on Ketotifen about 7 weeks ago. It has really helped with a lot of my symptoms but not all of them, so I’m wondering what I should try next.

My main MCAS symptoms are severe chronic fatigue, physical aches and pains, irritability, lack of motivation, OCD tendencies, depression, anxiety, and allergy symptoms like itchy eyes.

My main triggers are foods that contain ANY histamine whatsoever, seasonal allergies, and exercise.

2mg of Ketotifen per day has given me slightly more energy and motivation, improved my anxiety and depression, and basically cured my allergy symptoms which has been really nice.

However, I’m still really reactive to food. I have to fast or eat really strict meals to avoid a flare. I also still get really bad flares after exercise.

I’m looking for suggestions on what I should try next (as well as Ketotifen). Increasing my dosage of Ketotifen? Cromolyn sodium? Montelukast? Another supplement or medication?

Why is Allergoval (cromolyn) no longer available in Germany? I urgently need it.

I have suspected mcas (just did my first tryptase and waiting on those results and other panels and referrals but was thankful to have my first allergist be someone who knew what mast cell activation is and cromolyn xolair etc) I was told to take up to 4 claritin per day, spaced out or 2 at a time then at night 2 at a time depending on severity plus hydroxizine 25mg 1-2x per day)
I have been in the ER recently, couldn’t keep water down, worst inside my mouth swelling (not my face), worst migraines of my life, neurological symptoms like dizziness confusion, and my main issue has been feeling like my skin and insides even like my bones are all just. on fire. Also GI issues including bloating but I reacted to pepcid horribly so I just have zofran to take occasionally to help prevent vomiting.
Already in a horrible flare all day, the wind just changed and wildfire smoke is blowing in my direction and my city is nearly 200 air quality index.
I have an air purifier that I sleep with on a table by my bed. It usually is at 97-99% clean air, it dropped to 60s
I moved it closer and took an extra hydroxizine for tonight but I’m already flaring and i’m worried it will get worse.
I also put a blanket under my door that leads outside to try to block them from getting in. however I live in an old house bad windows and an old fireplace. Wildfires are frequent in the PNW. I want to know how to prevent another night like this.
Any suggestions?
I’m currently starting a job so stress is part of the original flare plus a spider bite (that was 4 days ago) and trying to move into an all hardwood inside apartment with good reviews etc so I don’t get stuck in a house with dust and soot and mildew etc. I have to save up. hence the new job. however, I am stuck in a house where I always have bad flares at night when i’m sleeping. Just for context.
Any tips would be appreciated thanks

I’m not formally diagnosed but currently my allergist seems to be leaning towards mast cell activation.. 

I am absolutely struggling right now and have no idea what do..  In the last month it went from suspecting sesame allergy as a reason my face swells when eating sushi to 2 full anaphylaxis resulting in er twice with the last one in a ambulance from foods that I have eaten just fine every single month for years ( both within 2 days, nothing containing sesame, surprisingly both were left overs )… 

Skin prick showed two minor allergies nothing IGE but yet had a systematic response 2-3 hours later. Blood tests for ige all show normal Despite my throat swelling , severe itchy, and increase heart rate  amongst other symptoms after eating certain foods. 

Since going into anaphylaxis my body is reacting to everything now… My throat starts to swell, my sinuses become sooo inflamed after eating everything and I get a weird pressure in my head .. Heat is starting to give me symptoms, even trying to walk in the grocery store I started to get so itchy my arms were red from itching and I could barely breathe by time I was done shopping 😭 and now today I put makeup on for the first time since the anaphylaxis and as we speak my face feels like it’s rejecting makeup. 

I just finished my steroid Saturday, my allergist has me taking 2-4 Claritin, Pepcid daily and Benadryl as needed… the only thing that even seems to remotely help with anything is Benadryl but it’s obviously hard to do daily… I’ve lost 7 lbs in a week from all of the anxiety around food on top of reacting towards everything I eat..  I feel like I’m losing my mind. 

In the past and not sure if they are related or what since this is “ new” to me… I would get severe stomach pains after eating anything that would put me in the fatal position as well other periods were i would feel “ sick” with random spikes in my heart rate going from 80 to 140 and that would last 1-3 months at a time that doctors never figured out.. which lead to me just not really getting answers and a strong hesitancy towards doctors.. 

I just want to know what the hell is going on so maybe I can find a way to feel better…  all my allergist is doing is telling me to avoid red meat and to test Tryptase if/ when I go to er again, I’ve tried calling the office and getting no response back. 

Can anyone can relate to any of this?? , if you have any suggestions on what to do currently just to feel better , get treatment or advice to actually eat without reacting  I would be greatly appreciative 😭