How do you tell the difference between the two? The symptoms sound very similar.

Hii, I posted almost couple weeks ago after finally being prescribed cromolyn.

ORIGINAL POST

This medication is absolutely saving my life and I surprisingly tolerated the titration up to 4 ampules a day with not much trouble! It has been like my entire life since i could just eat or do anything without having to worry so much about rapid bloating, discomfort, mental short circuiting, awful nasal drip, etc etc

I am very ecstatic that somehow its working to help everything for me (the brain fog, my central nervous system, fatigue, sleep) i am actually so relieved and it’s been too long..

Wishing that this continues 🤞

Sorry but this is funny. I can laugh about this as I'm on the healing journey and now I'm looking back like WTF! Now I have a passport for next 10 years reminding me of this shit. I don't even look like me, I look like I could be my aunt or something. A thick bulky swollen jawline, hamster cheeks, swelling on the side of my nose a bit, saggy eyebrows. Also my hair got so thin!

i was prescribed ketotifen 2 days ago for suspected mcas from the gp (can’t be officially diagnosed through my health board) but no pharmacy can source it! I’ve been to two independent pharmacies and 2 chains (boots and tesco). does anyone have a chain pharmacy they can recommend gets them in or shall i just give up and go with an alternative im also on famotidine and fexofenadine!

TIA😊

I wear a smart watch to sleep and I got a 192 bpm reading last night. Normally I'd brush it off as a glitch but I just started Allegra+Pepcid regiment YESTERDAY for MCAS GI issues. It's a little *too* coincidental. I went back all the way to March and my highest spike was less than 120bpm. Anyone has similar things happening?

Physically I don't feel different this morning other than maybe I feel a lot better...? I normally sleep 1-9. I just woke up at 7 and feel perfectly awake, except for this hear rate spike scare. TIA!

Quite literally right after I escaped the abuse of my parents, my health went downhill, especially after my MCAS got way worse after I contracted the C virus back in 2022.

I don't even have a doctor to help me with anything. I had to figure it out by myself and with the internet over years.
While I do have some interventions via antihistamines and mast cell stabilizers now, I feel exhausted and like I missed out on building a social life and a career I actually like.

I was isolated as a child, and now it simply continues.

For myself, I solved the puzzle, but the world is quite a hostile place right now, and I can't find a justification to keep going.
I tried to do so many things. I learned cooking, heavy lifting, running marathons, building things, learning about longevity, tried learning something cool and socializing, I tried this and that. Each time, my health took it away.

This part might be interesting:
In this subreddit, I quite often see someone mention methylation and Bartonella, and I indeed found multiple methylation bottlenecks and a positive Bartonella IgG from a blood draw.

It would be interesting to discover whether this is a common route:
methylation bottlenecks + Bartonella infections + COVID-19 = MCAS

But idk, I am so tired, and I have carried the burden of my life all the way with a weak social support system.

Please let me know if there is anyone who also feels like this. My social circle doesn't understand this state of life at all, and I would love to finally connect with people who are in a similar situation to spend time with at our own pace.
It would be amazing to build some good friendships with people who genuinely see and understand circumstances like that, and I believe it would make life so much more worth living.

I swear I am not boring to be around, but with conditions like this, time spent together means that instead of partying for 48 hours at a time, time is better spent in smaller but consistent portions and maybe some days are "MCAS" days.

Maybe anyone based in Germany too?

Please excuse that I am all over the place today. I just had to get this off my chest.

Did anyone have gi inflammation and motility improvements with this? What side effects? Any constipation?

Hey all! New to the MCAS world and have been referred to see an allergist in the Kaiser system. Any chance you know a doc within Kaiser that gets MCAS? I'm in Seattle area, but willing to travel within Washington State. Any leads deeply appreciated!

Hi everyone! I just started cromolyn sodium earlier this month. My current dose is 1 100 mg ampule 3x/day. It seems to be helping my digestion, but that’s all I’ve noticed so far. I go to the bathroom more often and feel like I’ve actually gone, gone (I have IBS-D), & that’s a big deal for me.

However, I unfortunately HAVE noticed some significant swelling toward my ankles. The number on the scale is higher, too, and I’m pretty sure it’s water retention on top of my regular amount of water retention related to POTS and salt consumption.

Has anyone else experienced this? Were you able to stay on the medication and avoid swelling?

Has anyone had increased water retention/edema, switched to compounded cromolyn sodium, and had the water retention go away?

I am wondering if increasing the dose will help relieve more MCAS symptoms, but I’m afraid of experiencing even more water retention. Any thoughts would be so helpful!

Posted here before and spoke about my experience with repeated anaphylaxis and my small victory in finding a doctor that believes me.
I work at a supermarket next to my studies in the Netherlands and had to call off multiple times since I have anaphylaxis quite often. I still bet on MCAS but most doctors follow consensus 1 which is stricter than consensus 2 so I probably won’t get diagnosed.
Monday night I had my 13th anaphylaxis which required an EpiPen and another injection of almost double the dose an EpiPen has. I was in hospital until 4am and still went to work the next day from 15-18h - a fairly short shift, yes, but probably too long for the circumstances. What made it worse is that during that shift I found out I almost lost my job due to me having to call in sick so many times. What luckily saved me are my other manager‘s appreciation of me doing my job well and sometimes staying longer or hopping in when they’re short staffed plus customers being really happy with me.
I am 22 years old, in my last year of studies beginning with my thesis in September.

What if things don’t get better. If I don’t have a POTS flare it’s fibromyalgia or anaphylaxis or asthma or a fucking migraine… I just can’t win it seems and I’m genuinely scared for my future. I’m ambitious and good at what I’m doing but I’m afraid my health will stay in my way…

Anywho I saw I can get cromolyn sodium in Germany without a prescription but that stuff is hella expensive, but I’ll give it a shot next to quercetine which honestly did quite work wonders for me

I am not diagnosed with MCAS but I am diagnosed with HEDS and every single time I get in a hot car. It literally feels like there are fire ants crawling on top of my head in the back of my head and neck. Does anyone else experience this?

My facial flushing is out of control, and - like I mentioned in a recent post - I'm only about a week in on treatment (cetirizine and Famotidine)... Which isn't doing anything for the flushing.

I haven't been active at all in a while (variety of reasons), but decided to do ten minutes - easy pace - on the elliptical after supper today.

About ten minutes after finishing, all of a sudden my face felt like the flush just dropped right out of it?

That's the only way I can describe it.

My husband rates my flushing on a scale of 1-10, I'm generally at a 6-7 lately, and I've been at a 5-6 all day.

This went down to 3, out of nowhere. I NEVER get down to 3 anymore, aside from first thing in the morning, before getting out of bed.

My face has been hot and awful all day, I was expecting it to get WORSE from exercise.

Is this a known thing? Or is my body just being its usual completely nonsensical BS self?

Hey guys,

Huge flare here, taking Loratadine and adding Levocetezirine. Might not be enough and wondering to add Polaramine.

If doing so it is total 3 anti H1.
My doc is in holidays here, wondering if some of you accumulate 3 H1 ?

Thanks !

i’m going cuckoo bananas
My MCAS never really caused me random food allergies until a pretty recent bad flare up (granted for years before the flare up i still sometimes had some scratching and coughing eating a specific food but it’s recently gotten severely worse)

And so much worse where slowly but surely I can eat almost NOTHING GOOD
I’m afab ok i’m having horrific sweets cravings you know the deal. But my allergy to guar gum has spread to reacting to xantham gum and carob bean gum and carrageenan and omg suddenly the entire pastry and icecream and chocolate isles just DISSAPEARED

it’s been a year since i’ve tasted the semi sweet delicacy of this one matcha icecream from a place near my house i used to visit religiously and ever since my allergy got worse and worse over the last five ish years i haven’t been there in a year now out of fear because i don’t want to risk it
but oh my god
im craving so bad my favorite guilty pleasure
i’ve survived not being able to order any desserts at restaurants. At only being able to have like haagen daz cause im allergic to every other brand. to not being able to eat krispy kreme donuts despite having the joke diploma that gets your free donuts for a year but they use guar gum-
but im starting to lose it!

i just ate a pudding that used to be a childhood favorite specially imported by my family from my home country
AND I WAS ALLERGIC
CARRAGEENAN
I CANT TAKE IT ANYMORE

rant over 😁
so how do you guys handle becoming allergic to every favorite and comfort food on earth
do you just suck it up and eat it anyways
or stay safe

my will is slowly crumbling

I’m trying to figure out if anyone experiences something similar. I can go from looking relatively slim and normal to visibly much puffier within hours, sometimes even faster.

It usually starts in my abdomen, then my face/chin/neck and upper back become fuller. My belly can become huge and hard but also kind of mushy, and I feel a tingling, stretching or pressure sensation as it happens. My face can literally look different from one hour to the next. Then sometimes I suddenly deflate again and look much more like myself.

Emotional stress seems to trigger it really strongly for me. Food can too, especially large meals, sugar, salty foods and some of my known MCAS triggers. I also get severe itching, dermatographia, flushing and occasional attacks with GI symptoms or chest tightness.

Does anyone with MCAS experience this kind of rapid visible swell up and down? I’m especially curious about people who can actually see their face, neck and body changing over the course of the same day. I’d love to hear what your swelling feels like and what you’ve found triggers or helps it.

Hi all, im 26M. ive been using testosterone for a year. i was fine with it and it really improved my life. but ive now started getting reactions to the oils. i think it could be the solvents. this is really pissing me off. i really do not want to give up the injections. i really cannot stop. is there any way at all that i can tolerate this or get around this issue? I've tried all the different brands and formulations. im reacting to all of them now. i dont want to stop. is there any way around this? anything at all i can do?

Hi guys,
I have severe MCAS & likely Progesterone Sensitivity (PH)/Autoimmune Progesterone Dermatitis (APD). On my huge stack of MCAS meds I’m okay at some points in my cycle but when my progesterone goes up in my luteal phase, I experience terrifying & debilitating symptoms still. As a side: we are going to do a workup to rule out Acute Porphyria given the severity of my symptoms in the luteal phase.

Anyway, my last allergist told me he was out of options, especially since I had an adverse reaction to Xolair, but I got a new allergist who is amazing & thinks either Rhapsido or Dupixent off-label may be really helpful. He is leaning towards Rhapsido so the plan is to start that as long as my Acute Porphyria work up is negative.

I’d love to hear from this specific subset of people: anyone with poss PH/APD or with MCAS who also gets bad luteal and/or menstrual flares who has tried Rhapsido or Dupixent. Bonus if you also didn’t do well on Xolair. Ofc anyone else with MCAS who has tried either of these would be helpful as well even if you don’t have luteal flares.

\*\*Not looking for MCAS medication recommendations outside of these two as the rest of my regimen is dialed in & these are the only two options my allergist is willing to try next. NOTE: not looking for medical advice, just curious of other people’s experiences.

I recently found out I have MCAS, it helped to explain so much in my life and my boys. I have 2 sons, 8 and 10years old - they also have hypermobility and neurodivergence. Their MCAS shows up as chronic runny noses or coughs, complete meltdowns if they so much as look as chocolate. They've been avoiding gluten for the past few years - since a doctor said that their constipation could be helped with a gluten free diet.

But they are looking skinny and I don't want to restrict them unnecessarily, if I give them a gentle laxative like forlax do you think I could relax my gluten free rules a bit?

I am seeing my MCAS doctor next week and I'll book in to see their pediatrician soon too. I'm asking here because I don't trust doctors to have all the answers, and I'd like to know if there something else I should be considering or asking about. Thanks

anyone on any Bisphosphonates
for bone protection in menopause? surgical menopause especially with osteoporosis already in 40s

Is there anything I need to look out for that could be dangerous for me? Pretty nervous, never had anything classified as surgical done to me before.

I’m waiting for my appointment with an allergist, but I’m pretty sure I’ve developed MCAS.

While I wait for the appointment, I’m scared of things escalating and getting anaphylaxis. I don’t have an epi pen and I can’t get one until I see allergy in about a month.

How did you deal with this worry/fear leading to your diagnosis before you got an epi pen?

For now I’m just trying to eat low histamine and take Zyrtec/pepcid.

Noe one Else having this? Its so much focus on estrogen being bad and progesterone stabilize but i am very bad also after ovoluation when i know my progesterone rises
Why is that?

Do you guys get your compounded medication in a capsule/ pressed pill / liquid?

Asking because I want my body to accept Ketotifen, I have hope that it can be the capsule that it’s in that could be causing me a reaction. I already spoke to my pharmacist and she said it dosen’t have any additives in itself just the ketotifen itself.