That is so interesting and almost everyone I know with MCAS who had reached a point of only tolerating 4-5 safe foods, was able to tolerate sweet potatoes or yams (myself included) but I am not sure why. They are healthy with lots of vitamins so I am glad you can at least eat those.
Well, yams are no longer a safe food for me. I can eat like half a yam once every few days. If i overdo the yams i get muscle and jointpain in my legs, my eyes get irritated and itchy and i can't stop urinating.
I tolerate sweet potatoes a bit better, especially when they have been slowly roasted over a fire.
Would your doctor be willing to prescribe Atarax to try? I did not tolerate Benadryl (in 2015) and reached a point of having a toxicity reaction to it. I was afraid that Atarax would be similar since they are both first generation anti-histamines but it was completely different. I never took Atarax as a daily maintenance med but it became my rescue med and there were several instances (in 2015) that without it, I am certain I would've ended up having to use an Epi-Pen.
I have to check if atarax is available in my country.
These antihistamines make me incredibly drowsy!
So you really get anaphalaxic episodes? I've never really experienced one, maybe mild. I suffer from an inflammatory reaction all over my body (no hives or itchiness!).
Ketotifen is technically a mast cell stabilizer (although it is an H1 blocker, too). Most people with MCAS take a separate H1 blocker (like Zyrtec, etc) in addition to Ketotifen (or another mast cell stabilizer).
Yes, but i read it's only a weak mast cell stabilizer. If i take both i don't think i can open my eyes for a week! Is it true that one develops tolerance to these meds? Or at least become less drowsy after x period?
Are you an anaphylaxis risk? If so, it is truly not worth it to try to trigger an attack. But if there is no danger, I can understand wanting to know for your own peace of mind (and to prove it to the doctor). Can you just show up at a private lab without a doctor's order for testing? It is different in each country.
Nope, not really. What i feel and also physically visible - is an inflammatory reaction. Eyes, sinuses, muscles and joints, intestines, skin, excessive urination and a brain on fire.
No doctor has ever been able to tell me if there's a name to it.
I just know it's because the mast cells release mutiple inflammatory metabolites and when i take antagonists/blockers then the symptoms improve;
antihistamines
antileukotrienes (boswellia)
anti-inflammatory prostglandins (1 to 2 gr. fish oil EPA/DHA)
Steroid inhaler and beta agonist (symbicort)
mast cell stabilizers (ketotifen and quercetin)
So yeah, i'm not crazy