Hi, I'm new here! I recently was diagnosis with HaT (Hereditary Alpha Tryptasemia) by an Immunologist as a last ditch effort to find answers after over 2 years, several doctors, dermatologists, and all the allergy testing coming back negative. At the time the main symptoms I was search for answers to was a 2-3 year long persistent non itchy scaly rash on my ankles and elbows, head sores, flaky inner ears, uncontrolled adult asthma that was diagnosed in 2019 after moving to Utah, serve congestion (later diagnosed with nasal polyps), and extreme fatigue.

There's a lot of background and context I won't get into straight away. After finding out I was positive for this hereditary condition a lot more symptoms that I had just been "dealing with" or "thinking they were normal" fell into place like a puzzle. Having this diagnosis has been a blessing and a curse.

Mine and my immunologist's theory is that due to my only known positive COVID case back in early 2022 woke up a lot of this condition and my body has been out of wack ever since.

About a month ago, I started taking Allegra daily AM and PepcidAC PM (to help insomnia H2 issues), Quercetin+Nettles and a Tumeric/Artichoke Extract Liver Support supplement. Which has been helping a lot. I'm already taking a nasal steroid and inhaler to maintain the nasal polyps and asthma which was in MUCH MUCH better shape.

I'm going to be starting Cromolyn Sodium (100mg 3-4 times a day) per my Immunologist instructions and she's given me the ability to start lower if I need to as to not over load my system. I'm excited to hopefully get some more relief from my other symptoms and reach some kind of baseline again. And we're also waiting on an approval PA to try out Xolair.

I'm curious if there's anyone else out there with this condition, if they've been able to get it under control? I know a lot is very unique from person to person. But it would be nice to know I'm not alone, I haven't been able to find many others, or articles to read about this. It feels really alienating.

As an aside, I also have no idea what my true triggers are. We're hoping that once I can get all my reactions under control I'll be able to evaluate my reactions better. I've also spent lots of time being GF, DF, eating low histamine, fodmap and sugar free diets all of which have been somewhat effective for a short time but no lasting positive impacts.

This has been very long, so if you got through it all thank you! And I'll keep searching the other posts for others in similar circumstances.

Mast Cell Diseases

About This Community

Inspire community guidelines

Resources

About this community