I have been going to Dr.s and having tests for 3 years now. It all started with those dreaded spots. Brown spots, red raised spots. also itchy, all over. Eczema is all I heard, take daily showers, take showers only once a week the beginning of the nightmare. I got a spider bite on my leg which landed me in the hospital for a week, that "spot" didnt completely go away for a year. Then the symptoms, shakey, short of breath, lightheaded, flushing, etc. whenever I was stressed, exercised, even cleaned the house. Tests for Lupus etc. Positive ANA, low WBC. Negative Tryptase. Allergy tests, allergic to Nickel, Olive Trees and Latex. even though my body acted allergic to every antibiotic, etc. Seeing, immunologist, rheumatologist, endocrinologist. Rheumatologist states well you dont have Lupus I dont know what you have, come back in 3 months if you want. Overwhelming fatigue, (Im a very active person, never get tired work 40 to 50 hours a week and then run around with grandkids) I kept telling my hubby, something is wrong. Finally 3 years of suffering, eliminating nickel from my life, changing my pots and pans, wearing only cotton, eliminating wheat, everything every physician came up with. My physician of 30 years being stumped and saying I dont know, "may the force be with me" Im not kidding. I went to my immunologist armed with a paper with my symptoms, the tests ive had, The elimination of everything in my life. I walked in to his office stating DONT GIVE UP ON ME, I am sick and you have to figure it out. with that I became short of breath, tachycardic, shaking. He looked at me and said I want you to read about Mast Cell Activation Disorder, you might have it, I have another patient that has the same symptoms. Im a Registered Nurse, so he armed me with all the reading material from the journals. He told me to take antihistamines, and come back. Well I found you guys, read everything I could get my hands on. Started a taking Zrytec twice a day, Zantac 300 mg twice a day, I also take 25 mg Benedryl and a pepcid at dinner time, 25mg of Benedryl at bedtime. (I kept telling the Docs that pepcid was helping with the itching and they still didnt put it to a diagnosis)
I basically medicated myself, Yeah! Symptoms Better to gone! I felt normal, not fatigued, no one calling me hyper when they would see the shaking :/  Sorry so long, Go back to immunologist and he is happy that I feel better, now for sure it is mast cell activation he now sends me to a GI dr. for Endoscopy and Colonoscopy for my severe reflux, IBS with diarrhea. I am in the process of meeting this DR next friday. This time I am armed with literature. Also thanks to all of you I called Dr Akin and they faxed me the drugs they should give me before putting me to sleep. Also, the stain they need to use on the specimens. I have a pt. number and I need to mail all my results to dr akin to see if he will see me. I live 3000 miles away so it will be awhile. hopefully beginning of year. My immunologist will give me a script for gastrocom once I have the scopes done. I have good days and bad, still have spots everywhere, but the majority of symptoms are better.  Sorry so long. That my story for now. Maria

Wow, Maria,

  Your story is so familiar, except the part where your doctor knows what you might have!  It takes most of us many years (average 9 years from onset to diagnosis!) to get the information you have so far.  So, welcome to the forum and hurray for your being so persistent!

  Wondering whether or not the docs have ruled out carcinoid syndrome and pheochromocytoma yet?  Before a mast cell disorder diagnosis can be made, those must be eliminated as possibilities, because there are similar symptoms.  Also, have you had a tryptase test within an hour or so of symptoms to see if it's elevated then?
  Just curious, to what do they attribute the elevated ANA?

  You might want to read about mastocytic enterocolitis if you're having that many gi problems.  You can google it or look on the NIH rare disorder page or go to:  http://thefooddoc.com/mastocytosis_enterocolitis to learn about it.  It might be important for your gi doc to know about it, too, before your tests are done.  The treatment includes gastrocrom, probiotics, and anti-inflammatories, but not too many doctors are even aware of the diagnosis, much less the treatment.  I go to Dr. Lewey whose website that is and Dr. Phillip Miner in Oklahoma City also does research on ME.

  You have a good start on meds, but have you tried Allegra (another H1 blocker)?  I feel uneasy when people are using Benadryl as a daily medicine, because it's a rescue med, and sometimes antihistamines can diminish in effectiveness, as you probably already know.  Allegra (180 mg./2 times day) is what many MC patients take.  I take 60 mg. 1-2 times/day and then zyrtec at night.  Your doctor will be able to tell you the appropriate dosage for you.

  Hope all is clear in your tests and you keep improving!

Thanks everyone for your help. Since my last post I now had to give up zyrtec. Spot/hives worse than ever also a rapid weight gain. Stopped zrytec, now benedryl dye free 25mg 4times a day with zantac and pepcid alternating. I eliminated more foods , i was stubborn about giving up tomatos but after how I felt the last time I ate them i decided to stop. I feel like im treating my self.  Have an appt finally for a GI dr. Hopefully he wiLl be on board with what he has to do, and does the biopsies correctly. My family Dr finally agreed with the mast cell activation disorder and has filled out FMLA papers so i can call in when i feel or look awful and to be able to go to boston. I might give Allegra a try so i dont use benedryl but here i go again self medicating. I cant wait to get to boston.