How to know if Mast Cell Treatments are working?

[Danesh]

Hey, it's Denise B here. Working now with Theresa Dowell, so thankful! Taking the Mast Cell Treatments, same as on Mast Cell Disorder websites, Histamines 1 and 2, Ranitidine (GERD med), Montelukast, Quercetin, timed release C, etc. It's been several weeks now. Also taking Valtrex and Apegenin (adaptogen herb)
She said if my sound and light sensitivity improve, that the Claritin is working. But overall, how do we know the protocol is effective for us? Will my MCS get better? Will my sensory overload get better? If I don't notice any help after a couple of months, does that mean I don't have a MAST Cell Disorder, or that I just don't respond to the therapy? I want to know what some other patients' experiences have been, what you have learned. My sensory overload prevents me from reading all the articles here on MAST Cell.
Thanks!

 

[midnightwriter]

Hello Danesh- I was just prescribed cromolyn for Mast Cell Disorder and previously did all the things you are doing. I did H1 and H2 blockers, quercetin, vitamin c. I have anaphylaxsis, fainting, severe pain frequently-twice a week or more now for a long time so I need to find a new solution. The regimen you are taking did not work for me. I had a genetic test to see if I had a genetic mutation causing the Mast Cell reactions and I don't. I took a blood test called a Mediator Release Test and found out what foods and chemicals were causing me problems and I work with a specially Mast Cell trained nutritionist to come up with a diet that I can tolerate. The diet helped reduce my third spacing of fluids and I can actually eat something now. I am up to about 20 foods including spices like ginger and rosemary, salt and pepper. The only meat I can eat successfully is chicken. Cromolyn is very expensive on my insurance plan and I am looking for a way to get it cheaper. I see your post is two years old. I am interested in learning how you are doing.