r/MCAS

Hey Y'all,

I am at my wits end trying to get a MCAS diagnosis so my insurance will cover this $400/month cost for oral cromolyn. All doctors everywhere require this insidious 20%+2 tryptase spike. My only concern is diagnosis. I don't care as much about guidance. I am on a pretty good protocol. At this point I need the diagnosis for financial reasons not medical. Most people on reddit do not like Dr Afrin. Is this due to poor guidance? Like I said I only need a diagnosis and am willing to pay a few grand in order to have insurance cover this monthly medicine expense. Dr. Afrin seems like the easiest pathway to an MCAS diagnosis to anyone with mild MCAS. Am I correct?

I got asked out to go to Korean bbq. I was thinking it should be perfect because I don’t think you cook with oil? You just put your food on the thing in the center of the table. I read that the cooking oil is used on other dishes they prepare in the back.

Now I’m getting worried that I’ll react to the oil in the air.

I want to just ask him to go where I know I’m safe, erewhon - literally the only place I usually eat out at. But it just sucks that I have to do that 😭 I wanna be normal so bad I hate this so much.

Can’t have ice cream, cookies, cake, really anything with dairy or gluten. Large amounts of sugar on its own gives me adrenaline dumps. Can’t have peanut butter. Sweetest thing I seem to be able to handle is honey mustard or one piece of dried unsweetened mango. Any suggestions?

I'll state up top that my doctor (allergist-immunologist) is considering a diagnosis of MCAS but we're still missing the blood testing piece of the puzzle. They think I'm a strong candidate, but don't want to officially diagnose me until we can get that testing in. Other pieces all fit.

My rheumatologist thinks I have the "trifecta" - POTS, hEDS/HSD, and MCAS. I've been diagnosed with POTS and hEDS, and am working on the MCAS diagnosis. And unlike a lot of other avenues I've been down in the last decade+ of worsening health, this one just feels right deep down to my bones, even though I'd never considered it until a couple of months ago.

(I also have endo and NLD-SFN. Diagnosed with IBS 15 years ago.)

I've been doing a lot of research since my rheum brought this up, since that's kinda what I do. And while I know that my POTS is "mild" (neurologist's assessment - that I can back up by the sole fact I keep a 9-5 full time job, even if most workdays I can only do that job before collapsing into bed). My hypermobility is also pretty mild - apparently I sublux but never fully dislocate joints, for instance, and made it to almost 40 before a doctor clocked it.

I just can't shake this feeling, and perhaps it's imposter syndrome or related to my medical trauma of diagnoses getting dangled in my face that could explain my fatigue and pain that then get pulled away when testing doesn't pan out, that my possible MCAS is "too mild" to be valid MCAS. Other than my sensitivity to fragrances (both pulmonary and dermatological), I mostly have GI symptoms, which I've been managing by eliminating trigger foods for over a decade, but I still have many more safe foods than most folks I've seen talking about their symptoms in forums.

Does anyone else out there have a "milder" expression of MCAS?

I don't mean to be insensitive to anyone reading this who wishes theirs was milder/better. I'm so sorry if this post hurts anyone in that way. I intimately know how dynamic and individual chronic illness can be, and the wide variety of emotions (including jealousy, guilt, and grief) that come with that. *hugs*

Edit to add: I'm mostly looking for validation that I can have this condition even though my medical imposter syndrome (thanks, trauma) is rearing its head. Working on the latter with my therapist, but anecdotal support, if it's out there, would be nice. <3

I have a friend with MCAS who is having a severe flare up at the moment. How can I support them through their pain and symptoms?

They have their immediate practical needs taken care of, so I am wondering how can I support them through the emotional/mental challenge of going through a flare.

We've all seen those ads for GLP1 or ADHD online companies. They promised that they'll get you a prescription, and sell you the pills all in one place for a small price. Some people see this as predatory and unethical but it makes money. On the flip side, things like ketotifen and other MCAS related drugs have such a miniscule side effect profile in comparison. I think it's safe to say you're not doing much harm by letting people buy this easily. Hell ketotifen is OTC in japan! Just seems like an opportunity to make a lot of money and hurt no one, even help a lot of people. As it stands it's just hard to get and there's very few doctors who will do anything. In the early days of marijuana legalization it looked like going to a doctor wearing a weed leaf headband in a strip mall and saying your back hurts to get some grass. Why can't we do that but actually for something that helps people.

If there's any business moguls out there feel free to copy this idea lol

Have an oral thrush and intertigo due to my gp giving me prednisolone for calming my mcas . Well he didn't realize that it makes things very much worse for people like me with SAD deficiency and now I'm stuck with how do I treat them like there's this fear of severe mcas flares God forbid but at the same time their making my mcas worse i literally react to almost all antifungals I just don't know what to do wanna cry at my helplessness and misery ❤‍🩹😭

I suffer from hyperacusis, tinnitus, screen sensitivity, chronic silent migraine, MCS (multiple chemical sensitivity) and have to beg my family not to wear perfumes around me or use any cleaning chemical with strong fumes or fragrance, dry eye desease, Postprandial hypotension, B thallesmia and have constant brain fog and feel miserable and paranoid everyday.

I'm even reacting to one of my clothes. I thought it could be the detergent smell? I also highly suspect that my dry eye disease and screen sensitive eyes are because of MCAS.

I'm taking antihistamines in order to keep my allergies at bay (i also seem to have allergy related dry eye) but I'm thinking of starting ketotifen (however i may have to consult a professional first) I don't know if it's even safe to take long term or how I'll react, also did ketotifen cure anyone's reactions to certain objects and food? I'm experiencing a reaction to some objects like this TY sequin cat plush, and my 7000x ps2 (which isn't even on) which i 100% believe has dust in the fan and hopefully when cleaned i stop reacting, but I'm too afraid to clean the fan even with a mask on and I'm even reacting to one of my backup phones, I wonder if its the adhesive on that after it was repaired? It's crazy. This is such a confusing disease.

Raising ketotifen has given me really bad muscle pain and joint pain and stiffness. Hugely affecting my mobility.

I was in a flare before starting which was causing some pain but wow it’s gone 0-100.

I have increased from none at night and a tiny amount in the morning to a tiny amount morning and night. This has been enough to cause this.

Nights are excruciating, mornings bad, afternoons marginally better, evening ok then night bad and repeat

I’m 7 days since the last increase. I’ve read so much about worse before better but then some people have this for months and it gets no better.

Help!

Any one cry start sobbing crying when eating? I feel mentally fine, but like as a reaction to the food I’m sobbing. It’s so embarrassing.

I go to a university in the pacific northwest with poorly designed and poorly maintained academic buildings. We're talking crappy ventilation and a noticable musty smell in certain rooms; combined with the humidity, mold is inevitable. I work on campus, and my asthma has been steadily getting worse and worse for the past year. Now my MCAS symptoms are flaring again despite that I started ketotifen and it seemed to be helping - I'm not responding to other medications that used to help anymore, my skin issues are flaring, the constant fucking itching is coming back. And it stops getting worse, and starts getting better, when I'm off campus for a few days. I know I'm very sensitive to certain types of mold - I can hunt it down by smell and my reactions sometimes - and I am absolutely certain that it's growing somewhere no one can see it in several of these buildings based on the symptoms I'm getting.

I don't know what to do. I work on campus; I'm a TA and a lab assistant. I'm three years into my degree out of five, and far enough in that other schools I've looked at discourage transferring. Moving out of the state doesn't seem like a good option because I JUST got referred to a one of the only specialty clinics in the country that could actually help me figure out the genetic dysautonomia shit going on in my family. My income and education are dependent on the university, and moving would set me back on healthcare again.

OTC antihistamines barely work on me, and the nasal sprays I typically use when it gets this bad aren't working anymore. My sinuses are swelling up to the point of externally audible wheezing every day because of this fucking campus, I have to put conscious effort into expelling the air from my lungs, I feel constantly starved for air and it just keeps getting worse when I'm on campus. I like the program I'm in, but it's getting so bad that I can't finish my work and keep up with classes. I don't know what to do. How the fuck do you deal with it when you're having allergic reactions to the buildings you work in? I wear a KN95 mask daily on campus (because I don't want COVID or any of the other respiratory viruses that able-bodied college students love to constantly spread around with zero regard for other people), and that clearly isn't helping with all the sinus swelling and allergy stuff presumably related to mold.

I'm on ketotifen and gastrocrom; I take cetirizine and sometimes four other types of antihistamine daily; I'm on advair and I have an albuterol rescue inhaler and I've STILL seriously considered going to the ER twice in the last two days because I couldn't get the wheezing reasonably well managed. I don't know what to do. I'm pretty sure it's mold in the academic buildings making me sick, and I don't have the kind of access, rights, or resources to hunt down and eliminate the mold.

I'M IN A FULL BLOWN FLARE...damn it. Anyone else experience this? I only burned my neck (complete accident). But now my whole body is just freaking out.

Hello!

I just moved to Southwest Virginia and I am going through the slow process of trying to find providers. It took me 6 years to get a diagnosis and it was a gaslight-y and frustrating process that I would hope to avoid while trying to find a new doctor(s). I previously saw an immunologist but I know some MCAS folks have good luck with rheumatologists or other types providers. I'm open to any specialists who will listen!

I am in Blacksburg but I will travel to Radford, Roanoke, Christiansburg, Lynchburg or even Charlottesville for a good doc. Of course, this requires a team, so recs for primary care providers also very welcome!

Thanks in Advance!

Summary: been going back-and-forth about reaching out to one of these MCAS specialists online. I’ve kind of narrowed it down that if I did, the purpose would be to be discussing possibly getting prescribed Cromolyn. I would definitely have to pay out-of-pocket due to my really bad insurance plan, so I have to make sure that it makes sense to go down that road right now. And most of my issues are weird allergy stuff like breathing issues that have gotten worse over the past few years with environmental allergies (also perfumes, most makeup that is near my nose or sinuses, essential oils that I used to use all the time and now can’t) and I also find I have itchy skin with newly washed sheets, for example - even though I use the cleanest detergent possible (we do also use vinegar with the wash because we have to share a laundry room with other people). I also have a few places where ticks bit me, but I got them out relatively quick, but they formed granulomas that still itch even a year and a half later at times. No infection though. I have had anxiety most of my life and depression, but I do find sometimes after eating certain foods I will get an anxious feeling and that impending doom thing people talk about and/or flushing/racing heart. Klonipin stops a lot of physical symptoms (which I know is a stabilizer). Cannot tolerate any allergy meds or sprays other than Claritin (not D). Tired after eating (just saw someone asked about that on another post :))

AND this unexplainable weight gain….

I gained weight over the past several years in a weird sort of creeping way. I had gained probably 15 to 20 pounds initially (some due to going into menopause) and was really struggling to lose that weight and then all of a sudden my weight went way up around February. But more than can be accounted for due to menopause. I work out and eat very conciously and well-trying to shorten this, but there was an HRT too high dosage, and also borderline hypothyroid I’m sure didn’t help. But still this was more recent.

I’m now also using Retatrutide and I’ve lost about 20 lbs. I’m also using some peptides (KLOW stack) in the hopes that they will help inflammation/gut repair (I don’t have massive stomach issues symptoms, but some, and did do a microbiome test, which indicated imbalances… Whether those are accurate or not I still don’t know).

At this point, just really curious if one of the symptoms people have is a really hard time losing weight no matter what you do? And, if treatment helps? Since low histamine eating doesn’t seem to really cut it for me. Once I get to my goal weight, I don’t want just end up reverting backward because I haven’t addressed an underlying issue. And if it could help the anxiety to take something for this, that would be a big plus.

I'm down an adrenal rabbit hole trying to figure out if some of my MCAS testing also helps support an adrenal diagnosis. When diagnosed, my N-methylhistamine, histamine, creatinine, and tryptase were all out of range.

But the one that really stands out: with a range of 0-65, my 24 hour urine histamine was 148,214. This was a new out of range *personal best* for me, but maybe this is typical pre MCAS treatment?

I’ve had MCAS for years driven by mold and most intolerable symptoms are massive depression/panic. I’ve tried a suite of h1/h2s with some limited support but I have to take mega doses to have them make a difference which makes me groggy/constipated. Any other folks had certain MCAS meds help them most for psych symptoms? Hoping to find something so I can actually tolerate detoxing mold out.

Hi all! I’ve got SEVERE asthma and LPR (silent reflux), as well as EDS and POTS, and highly suspect I have MCAS, but I’m already taking most of the medication that they recommend for MCAS: Dupixent, montelukast, cetirizine, Omeprazole, famotidine. These are all for my asthma, acid reflux, and environmental allergies.

MCAS seems so overwhelming and confusing to me, as it has so many random symptoms (many of which I seem to have), plus I live in New England, and a lot of providers in the area don’t “believe“ in MCAS, so the odds of me being able to find a provider who would prescribe me cromolyn is pretty slim, even though I think it would be helpful, but it is truly the only thing that seems to make all of my random allergies make sense. I also feel like, because I’m already on so many of the meds that they typically prescribe for MCAS, it would be incredibly difficult for my symptoms to show up in earnest, particularly in any type of diagnostic test, which we all know are very difficult anyway. Has anyone ever been in this situation and been able to get a diagnosis? Also, how did you even put together all of the pieces? Especially with the comorbidities of EDS and POTS, it’s so hard to figure out which symptoms go with which diagnosis. Any advice is welcome!

this feels ridiculous to type lol but i often feel worse the day after spending time + sleeping next to my partner when he drinks alcohol.

when i open an alcohol wipe i get a sort of ‘ew this is strong get it away from me’ reaction as well.
i have really bad alcohol intolerance since getting covid, can’t drink it for years now.

is this crazy/impossible? i’m second guessing cause i also have childhood trauma re alcohol and hate being sober around drunk ppl even if they’re normal and chill, so could also be emotional overexertion (i also have ME)?

thanks for any advice 💗

Hey,

Im dealing with chronic constipation since I got COVID in 2020 and over the years the constipation got worse and also my microbiome changed I got Sibo and Disbiosis and a severe histamine intolerance or MCAS.

**is it possible that mast cells can cause constipation?**

one of my main symptom from mcas is andrenaline dumps with getting extremely stressed wich leads to insomnia this also started after COVID but back then I thought it was the COVID itself nowaday I know that the triggers are food specifically almost all of them by now cause these reactions after eating. It got so much worse I can only tolerate five different ones anymore.

anyone with similar experiences or the knowledge that someone suffers from constipation due to MCAS?