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 >> Your opinions please http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1390503837 Message started by Andybonse on 01/23/14 at 07:03:57

Title: Your opinions please
Post by Andybonse on 01/23/14 at 07:03:57

Hi All,

I'm Andy, 22 from the UK.

I have been diagnosed with Ehlers Danlos Hypermobility, and have autonomic dysfunction such as POTS.

My doctor said I have some signs of mast cell activation which are:

1)When you scratch anywhere on me I go very red in that place for a while.
2) When I am warm/hot I get a red blotchy unraised rash on my chest, top back of neck and top of arms.

I am currently in the process of getting lots of blood tests after seeing a immunologist, the main ones being:

Methly Histamine urine frozen
Serum histamine frozen
Serum trypase
Uturica screen
Full IGE

Do you think it sounds like Mast cell activation syndrome? I can eat fine, I do get heart burn which I take 150mg Zantac for twice a day, does the trick, but this could be EDS.

In the morning when I get up I feel quite sick, but zantac and candida treatment seems to be improving this so seems like esophigitis.

I have some IBS type symptoms such as gas and a pain here and there, its hardly bothersome I had it since 16, when all of this started.

I am due to start Fludrocortisone for my POTS, but I am so afraid of anaphylaxis now, this is with any drug/supplement just a silly anxiety I have. I have never had anaphylaxis before.

I tried penicillin once for my throat years ago, after a few days I noticed a slight rash on my sides of my stomach, little red dots quite faint, so I dont take it, not sure if it was a true allergy as a side effect was rash lol.

Thank you! :D

Title: Re: Your opinions please
Post by mountain girl on 01/26/14 at 12:59:06

Andy,

Welcome! IT is certainly torture waiting for lab results...but it seems like you are one of the lucky ones. You found a doctor that recognized mast cell symptoms and ran the right labs. We all have varying symptoms, certainly yours could be due to a mast cell problem. But you will have a better idea in a few weeks when your test results are in.

Try to relax! Good luck...