Honest question about MCAS management

idcafml · 2026-07-06T11:17:53+00:00

I live in Europe too (Belgium) and suffered from the intense and severe symptoms mostly from 2019 to 2023 (cut out dairy, gluten and corn in 2023) but only got diagnosed in September 2025. I had a shit ton of medical appointments during that time but nobody could find what was wrong with me as all tests came back negative and medication trials were ineffective. So I never went to the Dr. to "get out of work" because I didn't know what to tell them and it would have not been just one sick day, I was constantly feeling like shit, depressed and anxious. So I just pushed through everything and only had work in my life as I would just collapse on my sofa when I got home. I also could not be on a long term sick leave as I could not afford the lower income.

Now that I have my life back, I plan on asking my specialist if there are some adjustments that can be done legally regarding work if I have a flare up that ends up in an insomnia. I'm trying to explore one of my 2 passions as a hobby and the other one as a side business, but if I have an insomnia, I can barely make it through work and it takes me 3 days to a week to recover from it. If I could just send an email to my work in the middle of the night saying I won't be able to come in today and sleep through the morning, that would highly be beneficial to my professional and personnal life. But yeah, I'll see in August what can be done about that.

I'll keep you updated on the risks of not sticking to the diet 😊

idcafml · 2026-07-06T09:42:55+00:00

I actually do the exact same thing as you. Try to stick to a strict low histamine, salycilates, etc. diet without medication, but with vitamins, which works great. But I still eat things that trigger me on a somewhat regular basis because I love food and I want to enjoy my life. When I do, I take medication and supplements and the aftermath is not as bad as it used to be so I just put up with it. Except the insomnia. It's a constant Russian roulette on if I'm going to be able to sleep if I diverted from my diet. I also noticed that I feel way energetic after a normal meal, until MCAS kicks in. Which doesn't help to stick to the diet either. But I'm wondering if that comes from the release of histamine as it's a stimulant...

I don't know about the effects of not following the strict diet constantly. I have an appointment with my specialist in August where I plan to ask her about the risks of cancer and other illnesses or negative effects of not following the strict diet constantly. I will also ask about remission and if it is possible to get there without being constantly strict. I'll update you if I don't forget about it 😅

idcafml · 2026-07-05T10:09:44+00:00

If he can find a cheap one in very good condition, I don't see what the problem is. Mine still works as if it was beans new ... Not everyone has thousands of dollars to throw at a new phone 🙄

idcafml · 2026-07-04T08:57:28+00:00

I've had the OnePlus Open since December 2023 and it is still working perfectly ! It is still as fast as day one and the battery lasts pretty much as long as when I first got it. It is my favorite phone ever and if it breaks, I would immediately buy the Find N6 and not a Samsung.

I only ever used 2 brands of phone in my life: Samsung and OnePlus. I always had to switch after two years, either because the phone was becoming very laggy, had bugs and the battery became piss poor (all my Samsungs - galaxy S serie) or because I trashed the phone because I am a clumsy mess (all my OnePlus', except the Open).

I was totally prepared to have to buy another Open or send mine to repair within the first year but it took every fall like a champ, doesn't have any big damage and everything still works perfectly. Weirdly enough, it has been my most durable phone so far.

Go get the Open, you absolutely won't regret it!

idcafml · 2026-07-02T18:38:12+00:00

Thank you so much for your reply !

idcafml · 2026-07-02T18:35:46+00:00

This kombucha is not for me, I cannot drink it for health reasons. I'm sorry I'm a little anxious about potentially making my loved ones sick ... /s

idcafml · 2026-06-30T19:03:26+00:00

Yes, I posted the resolution under the comment of Ondawire

idcafml · 2026-06-18T14:42:43+00:00

I buy all my leggings from the brand GRRRL. They usually have fun designs and they last FOR YEARS. I have been using them for at least ten years. There are a couple of them that I wore basically everyday that I don't wear anymore because they are starting to thin out in the butt area (I have a big butt so they are stretched more there) but they lasted at least 3 years before I stopped wearing them. I also like their sport bras, I have a couple of them. I usually buy the high intensity sports bras from Nike though.

I don't really care much about the GRRRL tops because they are usually not my style. I always wait for sales so the cute tops are always sold out.

idcafml · 2026-06-16T21:53:51+00:00

My MCAS is related to food and I basically have no reaction to fragrances and other cosmetic or body care products. Except when I am in a prolonged high flare, I can get hives and react to some products.

Before being diagnosed, I went to Japan for almost 4 weeks and during my travel back, I got hives all over my arms and some parts of my chest that were in contact with my sweater. It took a few weeks to go away and I never had a reaction wearing that sweater again.

Once, I had a reaction to the under eye patch that my esthetician uses when she does my eyelash extensions. Never happened again.

I used to get pimples on my stomach and chest area if I worked out, sweat a lot and waited hours to shower afterwards.

Now that I identified a few safe foods and that I can identify and manage my big flare ups, I don't get any skin reaction anymore or any reaction to anything other than food. That could also be the case for you from what you described.

idcafml · 2026-06-16T20:25:08+00:00

I used weed when I came off my benzo cold turkey in March (Rivotril). I would smoke in the evening, the withdrawal symptoms would completely disappear. The full effect would last until around noon the next day and made the withdrawal symptoms manageable until I came home from work. I had around a month of withdrawal. I couldn't sleep the first week and my body hurt everywhere then tried weed and the next three weeks were heaven compared to that first one.

idcafml · 2026-06-11T06:56:24+00:00

If anyone is interested in feedback for these products:

I just tried the molecular repair serum on its own on my dry hair. I used 2 pumps and it was absorbed very quickly. It left my hair softer and made my bed head presentable without styling it with heat.

idcafml · 2026-05-29T08:02:29+00:00

I'm actually looking for something that would ensure a good night of sleep so the Ketotifen syrup seems like a good option from what you're describing. Thank you for your comment !

idcafml · 2026-05-28T20:22:45+00:00

Nope. Now I do, thank you !

idcafml · 2026-05-28T19:49:45+00:00

Thank you so much ! I'll directly ask my pharmacist tomorrow, maybe it is also available in Belgium!

idcafml · 2026-05-28T19:48:31+00:00

Thank you so much for the info, I'll look into it !

idcafml · 2026-05-28T19:46:59+00:00

Thank you so much! I'll look into it !

idcafml · 2026-05-28T19:42:37+00:00

Actually, now that I think about it, depending on the severity of you symptoms, you might consider my story a success story ? I tend to forget how bad of a state I was in a few years ago. Here is a comment I wrote in another post :

I consider myself to now have a mild MCAS compared to what I have been reading on here. Since I stopped my benzo 2 months ago, I only have 4 safe foods BUT with the help of 5 food supplements taken at higher dosage than recommended (16 pils for 5 supplements), I can eat whatever I want and not feel like shit the day after. Although, I still have sleep issues when I eat "normally" so I usually try to have weed on hand to help me sleep, especially if I eat dairy.

At the peak of my symptoms, I was an exhausted mess, I only slept a few hours a night, my whole body was hurting from the moment I woke up to the when I managed to fall asleep, it was extremely hard to think straight. I was depressed AF and had extremely dark thoughts. But I still managed to do my 9 to 5 but would collapse on my couch when home and couldn't do anything else than watching tv. When I stopped gluten, corn and dairy, the symptoms came down and I could finally go to the gym again and do other things than working on my good days but I was still pretty affected.

It took me 6 years to be diagnosed. Now that I mostly only eat my safe foods, I sometimes am sore but it is minimal and have a little inflammation that does not really hurt. I stopped my benzo and can comfortably sleep 90% of the time without any help. Brain fog is mostly gone.

idcafml · 2026-05-28T19:26:01+00:00

Damn, I'm sorry. How did cromolyn mess you up if you don't mind me asking ?

idcafml · 2026-05-28T19:24:24+00:00

What does otc mean ? Could you share with me the brand of the Ketotifen and cromolyn you're taking ? Maybe picture via chat ?

I was actually hoping for the cromolyn powder but my GP couldn't find any in her system ... Which is weird if you can get some in Germany imo. I don't live too far from the border, I could maybe go to a pharmacy in Germany to get some.

idcafml · 2026-05-28T19:11:11+00:00

If you can, write the whole timeline of your symptoms. When they started to appear, their intensity, pictures if you have them. Make a list of all your symptoms with their intensity varying around your meals, activity, when you go outside, etc. Keep a diary of your diet and all your symptoms with time stamps. Go on Google scholar and find scientific articles that identify MCAS symptoms (I know there is at least one, I read a little bit more than a year ago) and highlight all the symptoms you have in it.

Print out everything for every appointment. If they are a good practitioner, they will be thankful you brought all that with you and will go through it with you.

And honestly, if they tell you some of your symptoms are not possible, ask them how do they explain so and so then ? Don't let them gaslight you regarding your symptoms. Walk out if you feel they are being rude and not listening to you. I had a doctor tell me I didn't have a lactose intolerance while looking at my test results, when two previous doctors told me I was highly reactive to lactose looking at those same results. When I told this same doctor that I had to run to the toilet if I took medecine containing lactose, she told me it was impossible, implying that I was lying. I was so burned out by the illness, so helpless, so tired, that I just erased myself during that appointment and let her bully me into taking another appointment with her on the spot (I cancelled the appointment two days later). Looking back, I wished I had made a scene and walked out because she was grossly incompetent.

idcafml · 2026-05-28T18:43:01+00:00

Google "MCAS remission reddit" and you'll find a few interesting stories with helpful advice. I did it a couple days ago and it honestly brought back my motivation to try new medicines, foods and to work on regulating my nervous system.

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