I am sorry this is long but I am desperate for answers.I have been ill for almost 4 years with no definitive diagnosis and hope to get some input from others!
It started with severe pelvic pressure when I sit. 2 weeks later I started getting swallowing problems and severe sore throats. Also lots of anxiety/panic with all this, which I never had before. When we started running tests, I diagnosed with mild normocytic anemia and pre-diabetes out of nowhere! Not heavy and no diabetes in family. Then, I was diagnosed with ulceration at the ileocecal valve during a colonoscopy and ileitis/colitis. THey thought it might be Crohns but I was gaining weight and not having diarhea. The next colonoscopy (after giving up gluten/dairy)was normal. I do not have Celiacs. A year later, I started having flushing episodes...a stinging sensation on my face that could last for hours, and twice I had blotches on my thighs. I notice that when I take quercetin (a natural antihistamine/bioflavinoid, I don't have flushing). My bowel movements were soft at times but now are back to being formed. I have been to several top Carcinoid doctors and had lots of scans and Carcinoid tests. The only markers elevated were pancreatic polypeptide several times and neuron specific enolase twice. I was told that if I do have a neuroendocrine tumor in my pancreas or anywhere, it is not visible and that those markers are pretty "nonspecific". I have a tiny cyst on my pancreas that requires a yearly MRI to watch but is not the problem, I'm told. My histamine and tryptase are normal.
Also, I have developed a tiny ascending aortic aneurysm that has been stable the last 2 years. I learned that a maternal uncle also had one, but noone else in the family. I remember reading on here that aneurysms can be associated with mc disorders.
The last 2 months, I have noticed that my sore throats have come back, my tongue is swollen, as is the right part of my pharnx, and my ears itch/hurt and the mild swallowing issue is back, also burning tongue. My ENT said it looks like some sort of allergic reaction or inflammation. My last sedimentation rate was very high...72 (range 0-30).
I feel ill all the time...internal jitteriness in addition to all the above. Can anyone relate to any of this or offer any answers?

Hi Deb,

  Have you been to see a mast cell expert?  It seems like time to do that, in my opinion.  If an expert tells you that you have MCAS, they'll give you a medicine regimen to help you feel better.

  Have you traveled out of the country?  Sometimes people pick up parasites that can cause mast cell symptoms.

  What meds and diet are you on?

You could get into Dr. Afrin at MUSC in Charleston.  I think you just need to call and they will ask you to send some records.  I would also send a letter with a brief explanation of your issues...similar to your post above.  I think it would be worth your time to see him.  Once you do and if he finds evidence of MCAS, then you will have an easier time getting support from a local doctor.  That has been the case for me If you get the tests done at CC and sent to Mayo, it is possible they won't know what they are doing and you will not get reliable results.  

Good luck!

I checked and Lab Corps doesn't do the 11-betaprostaglandin F2 anymore locally, or ship it to Mayo. They said they used to. Does Dr. Afrin diagnose MCAS/D also? Is it possible to have systemic symptoms and not have full blown Mastocytosis?Serum tryptase and histamine have been normal in the past. Thanks guys.

Yes, Dr. Afrin diagnoses MCAS/D.  I got my MCAS diagnosis from him and many others on here have as well.  My tryptase is only 4 and my histamine tests were formal.  Part of my diagnosis came from a highly elevated heparin level, history, symptoms, med response, etc. I believe Dr. Afrin has also had a few patients with a history like yours where many of the top carcinoid docs thought the patient had carcinoid only to figure out later that it was MCAS.  

Check out pages 66 through 70 in Dr. Afrins' presentation below:
http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20with%20Slides.pdf