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MCD - Mast Cell Disorders
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Your opinions please (Read 1205 times)
Andybonse
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Your opinions please
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!  Cheesy
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mountain girl
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Re: Your opinions please
Reply #1 - 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...
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