Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> My Diagnosis: Allergic Gastrointestinal Mastocytosis http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1412027344 Message started by Futurehope on 09/29/14 at 10:49:04

Title: My Diagnosis: Allergic Gastrointestinal Mastocytosis
Post by Futurehope on 09/29/14 at 10:49:04

For anyone who has been following my saga.... I had my testing and follow-up appointments with Dr. Sarah Glover in Gainesville, FL. I was originally diagnosed with MCAS by Dr. Lawrence Afrin. Dr. Glover found via biopsies of my GI tract for tryptase, that my GI tract mast cells were over-reacting.

I had tried many things in Dr. Afrin's care, and was still not doing well.
My GI tract was reacting all the time. Other people have external reactions. Mine are internal.

IOW, for many reactive mast cell patients, they itch, they flush, they have anaphylaxis, they have asthma. I have internal reactions going on all the time. It is a major nuisance and very difficult.

Dr. Glover will be working with me to retrain my immune system. She wanted me to keep getting my allergy shots to retrain my immune system to the external allergens.

She also wants me to remain on the H1 H2 and Singulair, but I am to take Singulair at night since there is usually a "leukotriene spike" in the middle of the night.

The new med to be added to the mix for me is a once a month Xolair injection. This is a mast cell stabilizer.

All for now. Just posting this for anyone who could benefit.

Title: Re: My Diagnosis: Allergic Gastrointestinal Mastocytosis
Post by Joan on 10/01/14 at 15:59:11

Good luck with the new advice! Hope it all works!