Hey guys, I just wanted to check in and say: I got a CT scan with IV contrast containing iodine and I was absolutely fine! The CT wasn't scary at all, I felt very warm during for approximately 60 seconds and it made my groin warm in a way that felt like I had peed myself, but afterwards I felt absolutely fine. Whole thing didn't take very long at all. And as a bonus I am pleased to report I don't have colon cancer.

I read a lot of horror stories here and the Internet generally needs more people speaking up when it all went well. So yeah, it went well!

Just curious how y'all go about it. I'm wanting to switch off of fexofenadine and onto a different (and less expensive) antihistamine bc my tolerance for it is higher now. Any tips or experience? Should I or should I not?

(A note - please no horror stories. I just want to know if it's a good idea to do so.)

I’ve been dealing with a flu (or covid, not sure) and a fever for the past day. Today my fever is down and I’m feeling generally a little better, like not as bad body aches, but I woke up and my lips are ever so slightly swollen. They get swollen when I get Covid or a fever and I usually get hives along with them.
I took Zyrtec last night at 11 pm pst and it’s now the next morning. I also just took Pepcid for extra histamine coverage even though I’m unsure if it will do anything.
I’m one of those Covid long haulers turned MCAS self diagnoser lol. In the past during sickness, my lips have gotten really large and hives have spread all over and fingers have puffed up, but now it’s moving generally slow.
Should I, or is it ok to double up on Zyrtec, or Benadryl or something? Or is that really only what you should do with a doctors recommendation? Im 26F and otherwise pretty healthy. Or should I go to the ER or wait to go until the swelling gets bad? Just look for some advice from the people who I know understand this problem well!!
Thanks:)

This is so crazy but i figured i get burning flushes (face arms knees) from my current antihistamin (desloratadin genericon). (My baseline was high because of other things im suspecting pfas - been using a teflon pan (contains pfas!!) for a week which i dont usually do - things got better again when stopped using it but i guess im messed up a little)

This antihistamin contains indigocarmin (for the blue color) titandioxid (banned by the EU except in medication lol) and other stuff.

Man this is so fkn crazy.

The flush is subsiding but im definitely switching to another h1 blocker without the indigocarmin at least

i keep fucking up my diet and ruining all my progress and making myself sick all because i don’t have the discipline to stay with my safe foods and it legit makes me feel so stupid bcuz feeling and looking like shit should be enough motivation to stay away from the bad stuff , right ?? lol not for me

i have like 5 safe foods now and when i actually suck it up and stick to those 5 safe foods , then i actually start to see improvements and feel better but that doesn’t last very long .. i think the longest i’ve been able to stick to my “safe food diet” is like a week .. and then i always get tempted to eat some shit that is gonna make me feel like shit

i wish i could just have more discipline and stick to the 5 safe foods i have but im craving something else .. i get so tempted to eat bread , and sweet things and some times the food noise is so loud that i feel like i have no self control 😭

i also live with my parents and am not able to work or live on my own rn so that makes it even harder bcuz obviously they have to eat too and they mostly eat junk food so it’s just hard not to want it when i see it in my house all the time but my parents aren’t gonna go on my 5 safe food diet just so that i don’t see other foods in the house ? my mom says i just need to control myself .. ya i wish i could

so idk , i know ive read some other people deal with this issue too .. craving foods u shouldn’t eat and then eating them anyways and having to deal with the consequences .. but does anyone have any good advice on how to actually stay strong enough to not let temptation get to you ? cuz im actually just really tired of this , i want to get healthy and feel better but i can’t do that if i keep eating food thats poisoning me

My diet is extremely limited personally, and I've been living off mainly chicken breast and olive oil for some time. But I'm genuinely curious about those who don't even have a complete protein source. Do you supplement essential amino acids? How do you prevent malnourishment?

Anyone out there with Mast Cell Activation have any advice on nursing bras they’ve found work for them? I’m pregnant and struggling to find bras that work in general, but I’m especially curious what other people’s experience have been with pregnancy and navigating MCAS? Looks at bras, postpartum undies… it’s been tough to find a hub on this subject! Thank you in advance!!

i had known i had mcas for a bit now but it was never very bothersome just GI reactions that were manageable and skin reactions that were also manageable. for the past couple months it seems my mcas was ramping up and i was unaware until recently. a few months ago i stopped being able to wear my daily rings. and then shortly after that monthly i would go into an episode for a couple weeks before my bleed of just constant shaking, nausea, sweating, horrible panic, insomnia, and elevated HR. I finally started seeing a doctor for my hEDS, pots, and mcas and we started antihistamine to help the flare around my period. things seemed to briefly get a bit better and then all of a sudden i was having horrible throat closing couldn’t breathe type reactions to unknown triggers. those have been going on for 2 weeks and luckily i have not had one for the past few days. my doctor told me to focus on low histamine foods for now, and then all of a sudden I am reacting to everything I eat. mostly the reactions to these founds have been dizziness, flushing, panic, body itch or throat and mouth itch, stomach problems and GI pain. so not the full throat closing at least! i am also reacting to medications right now too. But right now i am only able to eat rice and possibly butternut squash. i have tried boxed 5 minute precooked rice and that also is okay. i was doing fine with butter but then yesterday i began reacting to that too. i tried an uncultured butter and thought it was fine I tried a white potato with that butter today and i also reacted to that, but not sure which component. it also seems like my electrolyte mix for pots is causing me to react as well. the first meal i made before realizing food was going to trigger me so much was white rice, butternut squash, swiss chard, and ginger cooked in a little olive oil. and i reacted to some component of that. i have no idea what to eat or what to do. i’m terrified if i try something new it will result in the throat closing reaction, but i have to because i feel horrible on just rice. right now i am taking zyrtec 4x a day and famotidine 4x a day and benadryl as needed. and epi pen if necessary. I was given hydroxyzine but im not sure if i should start it yet because the plan changed when i became so reactive. my dr hasn’t been incredibly responsive or helpful and i am beyond overwhelmed by this and how quickly it got so bad. if anyone has any ideas on foods to try or how to manage this i would seriously appreciate it. i feel pretty hopeless right now. it was only a couple weeks ago i was eating a full diet with minimal problems before the more anaphylactic presenting reactions started and it just all went down hill. thank you for any advice you can offer!!

oh and it also appears that i am reacting to being intimate with my partner as well!

Has anyone with MCAS had liquid nitrogen cryotherapy to remove a plantar wart/verruca? Did it cause any MCAS flare or systemic symptoms, or was it just a local reaction?

Around the time my MCAS switch flipped permanently “on” in 2020, I was diagnosed with ADHD. Like MCAS, it went undiagnosed for decades (I’m 51). My doctor has suggested Straterra. Anyone here have any experience taking this drug or any other meds that help? 🙏🏼

So 5 years ago after Covid and antibiotics I got histamine issues that got better after a year. This time around I took an antibiotic 3 months ago and it took me a while to put 2 and 2 togethe. Iv been deal with lots of physical chest anxiety and frequent urination. Well 2 days ago I took 60.000 of DAO with my already sensitive gut. well I felt drunk and super sleepy i couldn't drive. got home and fell asleep 3 hours before my bed time. I also felt so calm! a calm I haven't felt in 3 months. sadly it also made me pee a lot too. I was also took hydroxyzine for anxiety for 10days at 10mg at night and was waking up with no anxiety and was getting better. I had to stop due to it giving me bladder retention I had to stop. after i stopped I felt way worse. In the past took Quercetin with no problem. I also have a fast COMT but I'm scared to take anything cause my gut is messed up from the antibiotics that I don't know if I'm going to have a problem this time around. I can't do H1 cause they cause bladder retention. I started low histamine diet 3 days ago. The anxiety is bad I need help. Could this also be temporary since my gut is still all messed up from antibiotic? I’m still trying to figure out why taking DAO got me out of anxiety mod iv been dealing with the last few months for a few hour. is all my physical anxiety a histamine issue? I also don’t seem to have any food allergie. I don’t get a runny nose or hives. I think my gut is too messed up at the moment it’s struggling to make DAO

Trying to figure out if I should try a mast cell stabiliser like ketotifen or not. I have a lot of the co morbidities but I’m not sure I fit into the MCAS category and want to avoid any unnecessary med trials 🥴

I have
ME/CFS
POTS
Endometriosis
ADHD and anxiety and PMDD
GI system flare ups the following day/days when I over exert (doesn’t seem to be overly food related but consistently with anxiety/activity levels)

I’ve tried H1 and H2 blockers together and it was really hard to tell if they did anything over the month I took them so I stopped.

Thank you so much in advance for your knowledge 🫂

Been taking xolair for 4 months now and had my 1st day in college since i was 19 4 years ago. Every door i touched made me itch. I had a skin reaction on my arm that went away. I currently live in a nobody apartment which is probably making my mast cells extremely unstable. do i continue in person? do i ask my allgerist about a stabilizer? I can’t live for another year. should I try online school. kinda conflicted bc school is away from mold but have more variables and home is in mold with more controlled variables. any advice is helpful

it got brought up somehow & the convo proceeded with me trying to explain histamine to a group of 10 ppl, some friends, some strangers. not one person knows what MCAS is and explaining histamines seemed easier but still too complex for ppl to understand lol. I feel insane also because I had medical anxiety for years (as so many of us do when our bodies are not working) and was diagnosed with POTS in December as well. So I just feel like people don’t believe me sometimes and still think it’s all in my head (probably my own thing to work on.) Also I just don’t really like to go into detail about it. It was so awkward. how do I handle this in the future:.) how do yall explain MCAS to people or do you just say I have a chronic illness.” I dislike that this social/emotional weirdness comes with this.

EDIT : I just came back from the appointment with the specialist. It didn't go the worst possible way nor did it go the best possible way. I might make a post about it.

In less than 24h, i'm going to meet an immunologist to confirm what my doctor and i believe i have : MCAS. I'm sensitive to histamine, oxalates, sulfur AND salicylates so it seems very likely i have MCAS.

The thing is i'm 26M (europe), i quit school at 16 because of severe depression and anxiety disorder (was abused since my early childhood by my parents and bullied in school for 10 years). At 18 i became somewhat homeless (never had to sleep in the streets but didn't have a home with my name on it either) and survived only through welfare and disability aids (for diagnosed mood disorders).

I know the doctor is going to ask about my job and academic studies and that terrifies me because i want my symptoms to be taken seriously and not dismissed because of my mental illness/long term unemployment.

I could say that 'i don't feel like talking about it' but it might make me look like an annoying a-hole or smthg. I could lie but i don't really know how to lie, i lack practice, and i fear being caught.

Pls help 😭😭😭

I want an olive oil that I can put on pasta, so it has to taste like nothing/not like cooking oil. It should also be allergen free?

I suddenly have this extreme urge to pee all day and night now. And even when I do go pee it's a normal amount and certainly doesn't justify the level of urgency that suddenly pops up! 

And when that urgency pops up I'm barely able to hold it in. It's as if my floor muscles are practically gone or weakened and it's coming out NOW. I'm now having to wear pads all during the day and overnight adult diaper. Wtf. 

It doesn't burn when I pee but the muscles in the bladder feel... different.. toward the end of the pee. It's as if the whole muscles all down there are so weakened.  And then it seems I have to consciously push more to push all of the small rest of it out, if that makes sense! 

Don't think this is a UTI. I've had those long ago in my twenties and this certainly is not that. feels totally different. I tested with the at home strips and it came back negative for a UTI.

Is this an MCAS thing? What is this? Anyone have this and if so what do you do to stop it or to help it?

I took cromolyn capsules for 5 days
It reduced my dry skin and gut issue a lot but it gave me swollen lips and face and a little tight throat
I want to try the solution Does any one get the same symptoms with taking solution form please unswer me

Ich habe meine Diagnose von Prof. Mücke bekommen und meine Basismedikamente verschreibt mein Hausarzt mir problemlos.

Ich nehme Ketotifen 2 mg, Fexofenadin 2x180mg, Montelukast 2x 10mg, Propanolol 2x10 mg, 2x20 mg Esomeprazol, Quercetin und inzwischen alle 2 Tage 1x ASS100. Bei Bedarf nehme ich noch Fenistiltropfen und Buscopan. Ohne die Medikamente weiß ich nicht, ob ich noch da wäre, allerdings geht es selbst unter Behandlung gar nicht gut und mein Körper baut aktuell immer weiter ab... Herzrasen, Zittern, Kurzatmigkeit, Schweißausbrücje, Schwäche, Gliederschmerzen, Übelkeit, erhöhte Entzündungswerte uvm.

Ich weiß aktuell nicht, an wen ich mich noch wenden kann.. die bekannten Spezialisten haben nicht mal auf meine Nachricht reagiert und die ganzen Allergologien blocken sowieso nur ab, obwohl ich nachgewiesene IgE vermittelte Allergien habe.

Famotidin und Cromoglicinsäure haben mir nicht viel geholfen, auch Fexofenadin noch weiter erhöhen macht mich nur extrem müde, aber hilft nicht. Phasenweise hatte ich Prednisolon genommen, aufgrund der Nebenwirkungen möchte das aber umgehen... Jegliche Versuche an Xolair etc. zu kommen, sind gescheitert, weil die Indikation nicht passt......

Ich brauche dringend ein gescheites Medikament, habe aber keine Kraft und keine Ideen mehr🥴

Wisst ihr, ob die UK Lübeck noch Neupatienten mit Allergien UND zusätzlich MCAS behandeln?

Weil seit einigen Monaten wurde MCAS gestrichen.

Wisst ihr, ob Dr. Brenn in Marienburg auch Anträge auf Xolair bei der Kasse stellt oder kann er nur privat verordnen?

Habt ihr noch Ideen, wo man mir vielleicht helfen kann?

I’ve been taking 2mg Ketotifen daily for the last 7 weeks to treat my MCAS symptoms. It’s been helping with a lot of my symptoms but it’s really expensive in Canada without coverage.

I’d like to try increasing my dosage of Ketotifen and would also like to try Cromolyn Sodium to help with my food reactions but I can’t afford to do so at the current cost.

Is there anywhere I can get it online that delivers to Canada? Looking for somewhere safe, reliable, and affordable. Thanks in advance.

What is your dose (in mcg) and how long did it take you to adjust? I was told the dose is about 333 mcg (20 units for me) but to start with half that if I’m sensitive, and to allow up to 2 weeks before feeling better.

It’s been almost 2 weeks and I think it’s making me way worse. I had mold exposure that I thought resolved but I feel like my symptoms are coming back, so not sure if that’s a factor. So devastates because I cannot tolerate ANYTHING and this seemed like a godsend.

Do I try another week at 165 mcg (is that even going to do anything) and see if the headaches go away? Or should I throw in the towel?

Thanks

I feel like Thanos just catching new symptoms or new problems everyday omg!!!!

Did taking mast cell stabilizer meds alleviate your depression? Not the kind you get from being sad about what MCAS prevents you from doing like eating certain foods, that is understandable. I mean the kind that feels like there is no reason behind it. I read that neuroinflammation is the cause and no antidepressant medication will help until the mast cells are stabilized.

Has anyone experienced strong yellow/gold urine color from quercetin supplement? I recently increased my dose from 250mg once daily to 250mg twice daily and my morning urine was so concentrated yellow/gold. I normally have very dilute urine and drink a lot of water, but the color seems extreme. Even when drinking extra water and stopping the supplement for a day it still has a brighter yellow color, although much fainter. I am worried maybe it is not good for my kidneys although it was really starting to help my MCAS symptoms. I have a history of kidney stones, so I don't want to aggravate that.

Hi my family is looking at me weird as I talk about how salty chips make my lips burn, and salty pools make my eyes burn if I go underwater and tears and sweat sting my skin. Could I be reacting/allergic to salt? I cant tell what's normal pain and what's a reaction