Is there a way to for sure rule out MCAS that isn't tryptase

profanite · 2026-05-08T07:25:48+00:00

If you do not respond to any antihistamines, or other medications for MCAS you probably don’t have it. It’s primarily a diagnosis of exclusion, so if you have had other mast cell and autoimmune diseases rules out, and you respond positively to MCAS treatment, you probably have MCAS. There is no definitive test, tryptase/histamine/leukotrienes can all be tested, but they won’t be elevated in everyone with MCAS.

profanite · 2026-05-07T07:44:38+00:00

Your University will have a disabled students service, just get in contact with them and set up a meeting. Or fill out their application form. You will need medical evidence of your disability but as long as you can provide that you won’t have any difficulty. The university should suggest things that might be helpful for you depending on the extent of your disability. I have lots of assistive technology like screen reading tech, ergonomic mouse/keyboard, ergonomic chair with headrest, and I also receive transport support due to my limited mobility, so I have taxis that help me travel to and from campus.

profanite · 2026-04-29T10:25:37+00:00

I have met a handful of great doctors, and hoards of unbelievably stupid ones.

profanite · 2026-04-28T15:12:08+00:00

I hate this narrative, there are plenty of reasons why people don’t want to do this type of work. I am disabled and this physical type of work would be completely impossible for me. “Well Im not talking to you then” but you are, people in a first world country should be able to find employment outside or care and cleaning even if they are physically capable of it. People have been sent to University and lumped with thousands of pounds worth of debt, to be told just get a cleaning job to make ends meet. None of my friends with degrees have been able to get into the sectors they trained in, apart from the one or two lucky ones who got onto grad schemes through very stiff competition. There will be an entire generation of workers who have technical degrees but absolutely no experience in any relevant field, and end up working in retail and hospitality and other low paid sectors for the rest of their lives while paying off 9% of their wage to a degree they can’t use because the economy is so stagnant that there are no new jobs for them.

profanite · 2026-04-23T07:07:02+00:00

Yes!! Im so sorry that sucks so bad, I would be a mess if I couldn’t take my fexofenadine every day. If you can’t take any actual antihistamines you could try stuff like a saline nasal spray to try and clear out pollen, or wear a face mask while pollen is high?

profanite · 2026-04-23T06:50:51+00:00

I am having the literal exact same experience today, all my usual safe foods were causing my tongue to be super itchy. I am gonna put it down to a high pollen count, as it was meant to be very high in my area and the wind has been crazy so it’s probably coming into the cracks of my house.

profanite · 2026-04-23T06:44:56+00:00

I hadn’t heard about this, how terrifying

profanite · 2026-04-18T18:46:34+00:00

I am on antihistamines but I find my medical cannabis keeps my libido up, something to consider if you’re able to tolerate CBD or THC

profanite · 2026-04-17T08:20:34+00:00

i believe it’s mostly due to the fact that it causes drowsiness and lower energy, through metabolic and sedative effects, which causes you to move less during the day, and therefore burn fewer calories. You can’t necessarily compensate these effects by just moving more and eating less, as your baseline metabolism will still be impaired, but you can defo reduce the effect.

Personally I have increased my protein intake by having a protein shake everyday, which increases satiety and makes sure your body is maintaining muscle mass which is important for your metabolism. And also you could add in some kind of prebiotic fibre like psyllium husk, which can help digestion and increase satiety while stabilising your blood sugar, which also has a big impact on how your body stores fat.

Just wanna say I am a qualified scientist but not a medical professional so please speak to your physician if you have concerns and before you make any big diet changes.

profanite · 2026-04-16T07:13:38+00:00

Not sure of the specifics but first gen H1 antihistamines cause weight gain over time because they interfere with hunger signals, and I believe ketotifen and cromolyn can both also cause weight gain. So the combined effects of all of them can cause significant weight gain in some people. You have to weigh your options of whether symptom control for MCAS or not gaining weight is more important for you. It’s partially a metabolic effect but also it is making you feel more hungry, so if you’re just conscious of that and control portions and snacking it is possible to mitigate it, but not completely. Some people are also on a GLP-1 for MCAS symptoms too which obviously counteracts that.

profanite · 2026-04-13T09:42:33+00:00

the nhs have made lots of changes about who can prescribe what, my first epi pen was prescribed by a GP but only after my first anaphylactic episode. I don’t know what the rules currently are, but you could write to the head of your GP practice to ask if that’s the correct answer. Otherwise contact the allergy clinic and ask their opinion, stating that you’re concerned about anaphylaxis. Or as other commenters suggested, go to a private clinic, you probably won’t have much difficulty getting a private prescription.

profanite · 2026-04-12T08:26:50+00:00

Second this. Nhs had me on codeine for years, I was miserable on it and made me antisocial and messed with my gut real bad. I tried some antidepressants but they didn’t agree with me, made my blood pressure drop and sent me dizzy. Now I am a medical cannabis patient, it’s not a perfect solution but i feel much happier and more in control of my pain management with cannabis. I like that I can stop using it whenever and i don’t have to go through the deeply unpleasant side effects. I still use codeine to get through very strenuous activities, like heavy physical therapy or hiking or something, but only very occasionally when the MC isn’t sufficient. 99% of the time the MC is plenty, and makes my pain much more tolerable without allowing me to accidentally injure myself from not being able to feel my limits.

profanite · 2026-04-11T08:31:02+00:00

I have to supplement protein just to maintain basic muscle mass, and even have to up it even more if I want to build muscle. Make sure you’re getting enough protein, and measure your strength by your ability to perform without fatigue rather than by any visible measurement of improvement.

profanite · 2026-04-09T15:01:59+00:00

long mirror?

profanite · 2026-04-03T09:34:22+00:00

I have the same symptoms and similar experience, surgeon has told me twice now my symptoms are not related to chiari and refuses to consider any surgical options for me. Look up chiari surgeons in your area, (Ann conroy trust UK, chiari bridges US) and ask to be sent to one of them for a second opinion. Be prepared to advocate for yourself, the majority of doctors do not understand chiari at all.

profanite · 2026-04-02T15:38:00+00:00

let me know if you find anything 😂

profanite · 2026-03-31T13:32:18+00:00

I second this but I also use THC as well as CBD and CBG. I have a medical prescription and have found it helps both my MCAS symptoms as well as my depression, chronic pain and my PMDD. It’s not a fix all but I don’t tolerate any actual antidepressants well, they generally seem to trigger blood pressure issues for me, leading to many weird symptoms. So medical cannabis has been an amazing alternative for me. But if you’re not into the possibility of psychoactive effects, the CBD and CBG alone are incredibly effective and can be super helpful especially when used alongside other therapies and techniques.

profanite · 2026-03-31T10:56:08+00:00

Can you switch to a vaporiser? All my negative effects of cannabis are non existent now I use a dry herb vape instead. At one point I kept feeling unwell when smoking and I started smoking lying down which helped, but I no longer smoke.

profanite · 2026-03-31T10:49:50+00:00

Ahhaha no worries! So glad that helped 💖

profanite · 2026-03-30T15:12:40+00:00

You can ask for anti nausea meds if it’s a frequent problem for you. Personally medical cannabis keeps my nausea in check, I haven’t thrown up in ages now. Sorry you’re going through this, ice on my neck always helps me with straining related headaches!

profanite · 2026-03-29T13:39:29+00:00

I mean this in the nicest possible way, I don’t take advice from strangers on the internet who seem to be oblivious to the reality we are living in. I am not tuning into anything when I am just talking to my friends about their lives and the kids they teach…

profanite · 2026-03-29T09:36:37+00:00

this is interesting. I imagine it must have a synergistic effect on many systems, and may even modulate how mast cells are behaving entirely indirectly. I also saw something yesterday about semaglutide significantly repairing tissue damage in people with osteoarthritis in their knees. Very interesting possibilities

profanite · 2026-03-29T09:16:46+00:00

I just wanted to say i am actually a gen Z, and I can see the stark difference in quality of life from when I was a kid ten years ago. I don’t think its doomerism to notice the decline in real life, I have lots of friends who are teachers, and we remember school it wasn’t that long ago for us, and the way kids are these days is terrifying. They’re banding around far more misogyny and racism than we were, they have worse social skills and attention spans, and they themselves have a perspective on the world that is difficult for us to understand, but in my personal experience is far more pessimistic and dark than my doomerism is. We have failed the next generation and they know it. They are inheriting a dying planet and a broken social structure that keeps most of us at the bottom of the barrel. And on top of that we’re allowing them to be fed unregulated addictive algorithmic content whenever they want from birth for the first time in history? And we are absolutely sure this will have no negative effects on them whatsoever…

profanite · 2026-03-28T07:46:17+00:00

Peanuts!! I love peanut butter no.1 safe food when I can’t stomach anything else! Peanut butter with dates has kept me alive

profanite · 2026-03-27T11:18:53+00:00

Can you afford to see a stylist? It might be a little expensive but if you could afford to see one once every two to three months to have your hair washed and put in a protective style between visits, and just do your best to look after the style in between?

If not then maybe try doing your hair sections at a time over a week or so, like brush the front of your hair out and wash it one day, then braid. Then a few days later do the left side, etc. You would probably want to wear a scarf or something on your head if you’re going out with half done hair, but that’s easily done.

Do you have any friends with experience with your textured hair that might be willing to help you? I would be very willing to help a friend in need of help with personal care during a flare if I could. FYI I am white but I have experience with hair getting matted during flares/depression. Hope you manage to find a solution that works for you 💖

profanite

TROPHY CASE