I know Ill probably wont get a response but here is my needle in a hay stack question....

Has anyone here been diagnosed with Mast Cell Activation Syndrome (mast cell disorder, its an immunodefiency disorder)?

As according to Drs, im healthy and normal in all counts (aww they cant blame my surgery, one tried till I came back at him with counter info). But yet, Im having problems that seem vauge that cycle and cause me problems including shock symptoms but they go with many things, but again supposably nothing wrong, Ive had CTs and MRIs even. My body cant be anymore "grossly normal" than it is. No masses or nothing anywhere. My labs are great.

Its bad when my drs asked me if I had any ideas. We are at a loss currently, But I refuse to give up.... so I looked up the ONE thing that really sets me apart from most all of humanity..... my bones of "heat treated steel". Thoes were a drs exact words. They are that dense and heavy. My dentists even comment on how thick my bone is in my yearly xrays. No it isnt from factures, never broken a single bone even though MANY times I should have (again from a drs mouth). It isnt from the weight bearing. And really only 3 genetic issues are known to cause it, and I definently dont have 2 of them. The other being MCAS. Ironically it is inherited, and my youngest sis was diagnosed with an immunodefiency disorder more than a decade ago, they just couldnt figure out what. 

So Im collecting all my issues from baby till now. My off the wall "allergies" folks Im allergic to stainless steel and even gold causes reactions if worn in earring form (so near anabolic settings). Stupid little things that some people would never notice or. Oh it can also cause obesity in otherwise healthy active people .We never knew why I was fat, I have no baggage or addicitons or mental issues, in fact I actually had NO fat on my internal organs, even my abdominal wall was tight and fit, it was all under the skin, an honest to god fat suit. Nope not cushings either.... So answer me that. Every common and even semi uncommon stone has been flipped to a dead end.

Im sick of being a medical enigma now, and hope I soon will either get a yay or nay on this.

But anyone been diagnosed with MCAS/MCAD or any Mast Cell disorder?

Hi Nicole,

I am so sorry for all you are going through. To be honest I had not heard of this before.  I did a search for MCAS/MCAD or any Mast Cell disorder on the site and there were no hits   Good luck to you and I hope you find someone that can help.  If you have not done so post this on some of the surgery forums too.

Take care,

Kathy

I have never heard of this but honestly NOTHING WOULD SURPRISE ME  after a lifetime of dealing with " illegitimate " hunger cravings ..

BUT I would be VERY WARY .  

I would get WLS FIRST >>> then deal with the cancer issue through Sauna Hot Tubs sweating it out through exercise .

((hugs)))