u/Bendybug

My provider isn’t sure if it’s MCAS or hAt, so that may make a difference for me. But I have elevated tryptase basically always and have elevated histamine during flares. I was on ketotifen, but was able to come off about 6 months ago. Unfortunately, I’m in a flare again and need to start it back up.

My doc said I might be able to just use it as a bandaid during flares then come off again once I’m settled.

What’s your experience? Are your meds long term or are they just to get you through figuring out your triggers?

My MCAS has been very well controlled for a while now and I was even able to come off my ketotifen months ago with no problem.

I have been gluten intolerant for 10+ years and unfortunately was given gluten back on Easter. Since then, my system has been going haywire. I’m currently covered in hives, despite it being almost a month past Easter. Asked to have my tryptase and histamine tested for reference and my tryptase is at 11…which is even higher than when I was diagnosed.

I’m so angry and upset about this because I’ve been doing great for over a year and now I probably have to go back to a very restricted diet, maybe back on the super expensive ketotifen (which also made me gain weight).

If anyone has been in this scenario, how did you manage your flare and did you go back to baseline? If so, how long did it take?