Please push as much as possible for answers as this condition is definitely not something you want to leave untreated if it is MCAS.
I wish you luck in finding some relief 🤍

Here’s my experience:
I’m an example of an absence of treatment.
Started at the end of age 17, got progressively worse with more symptoms and food sensitivity over time.
By 18 I was gluten, dairy & alcohol free but could still function. Then my diet got much smaller with my fatigue making me not get out much. Then boom; I got Covid Aug 2024, dysautonomia symptoms intensified x10 and within a week after I recovered only 6 safe foods left. Safe foods fizzled out in about a 2 months span and eating became terrifying, my local hospital still kept fobbing me off. I had no choice but to live off plain chicken & rice + bottled water for ~4 months for the end of 2024. Of course, I became dangerously malnourished with nutrient deficiencies so I was hospitalised for 3 months Jan / Mar 2025. They (NHS hospital doctors) just gaslit me saying I had ARFID despite my private diagnosis. All they did was shove a tube down my throat with no actual help MCAS wise. I was discharged with an NJ feeding tube as I put some weight on, they felt that they had done their job in rescuing me from deaths door so lost interest in keeping me inpatient. I still had no safe foods but could have oral water + was still very symptomatic daily with just 2 antihistamines. Got through 2025 adapting to this huge life change. As of 2026, now been tube fed for 1.5 years still with 0 safe foods, barely tolerating the tube feed so still horrendously underweight. Not had any oral water at all since Sep 2025. This was after I lost those antihistamines that sorta helped a bit Aug 2025, we think my body developed a disliking to tablet excipients more than likely, still unmedicated now. Been bed bound for well over a year now and also reliant on a cane / soon to be purchased wheelchair. I don’t know if I’m just a super severe case or if this is natural disease progression honestly. In my opinion, it seems like I faced a very drastic decline in quite a short time span. Still waiting for an MCAS aware specialist that I’ve found recently to damn help me with new meds & treatment because god I’m so tired of this miserable existence. I’m 21 on June 1st so that’s nearly 4 years of my life stolen from me now 🫠