Hi All,

Based on my long-term symptoms (see list below) I strongly believe that I have MCAD.  I went to see a mastocytosis expert (it's what he calls himself; not a "mast cell disorder" specialist) to hopefully get a diagnosis as either masto (which I was pretty sure I didn't have)  or MCAD.  

I received the results of my histamine and tryptase tests today and they are both normal.  I do not have exact levels yet, but I should after my doctor mails me the report.  The doctor basically said, "I think you have chronic urticaria and you should take low doses of H1 and H2 blockers.  That's all I can do for you."  End of story.  Based solely on the negative results of histamine and tryptase, he literally refused to do any further tests or talk with Dr. Akin about MCAD.  But, he did say that if I spoke with Dr Akin, he would "be interested in hearing the results."  Great, thanks dude for all your help.  

I was diagnosed with fibromyalgia in 1997, however my symptoms have never really fit the classic fibromyalgia profile.  They are more in line with MCAD.  Nonetheless, I forwarded Dr Blanco's recent study on the high level of spindle-shaped mast cells in the skin of fibro patients to my doctor to see if it sounded interesting, and he said, "I don't think there's anything there for you.  I won't talk to Dr Blanco or do the skin biopsy in the study.  If you want to talk to him, go ahead."  Almost verbatim.  Urgh, how frustrating.  WHY DON'T DOCTORS WANT TO HELP US OUT?!  (the only thing I can think of to excuse he refusal to pursue an MCAD diagnosis is that perhaps the insurance companies won't recognize it as an official condition yet, so he is treating me for "chronic urticaria" instead because they will cover that.)

I am wondering what I should do next.   I live in Europe but I am home in the States for a week.  I soooo wish I could get in to see Dr Akin or Castells.  I would re-route my trip from NY to Boston to see anyone who actually believes that MCAD exists, or is at least willing to think outside of the box with me.  Or talk with them on the phone.  How likely is it that I could see someone on such short notice, and with negative test results?  

Here are my symptoms.  What do you all think?  Please be honest!

My symptoms:

   * large uticaria patches on my arms, trunk and back; worse after showers and eating foods with salicylates

   * major angioedema with subsequent peeling around my eyes and mouth (even from simply smelling tomatoes, for instance)

   * sharp gastrointestinal pain and constipation when I eat foods that are triggers or am under stress; I was constipated for oh, about 8 years. Now that I have eliminated most triggers, if I touch one, I get diarrhea.

   * neurological symptoms when I eat foods that are triggers; includes irritability, mild depression, inability to concentrate, headaches, muscle tightness and tingling; this is the worst thing to deal with!  And something that might be treated with a med that would not necessarily be used if my official diagnosis is only urticaria.

   * fatigue, though I am sometimes hyper

   * itchy, flushed skin when I work out

   * exercise-induced anaphylaxis on two occasions

   * nasal congestion every morning and itchy eyes most days

   * swelling in my face after a bee sting

   * I have trigger points/painful knots in my muscles, but only when I eat foods that are triggers or exercise after eating foods that are triggers

*  I had interstitial cystitis for a couple of years when I was younger.  It's gotten better, though still bothers me from time to time.  

* palpitations and muscle twitching frequently

* low blood pressure and feeling like I'm going to faint if I stand for too long or get up quickly

Previous diagnostic work:
Recent Celiac and IgE allergy tests came back negative
Low on Iron, Zinc, vitamins B12, D

Medications:
I started taking ketotifen about 8 months ago again my skin- and exercise-related symptoms have improved.  I avoid all of food triggers as best I can, which means I eat a very limited diet.

I also take Zinc and Iron supplements, Biotin and digestive enzymes. I would like to take a multivitamin, but it is hard to find one that doesn't cause a reaction.

Foods that I am sensitive to:
salicylate group (most vegetables)
gluten
dairy
soy
eggs
yeast
caffeine
alcohol
sugar

Thanks for any advice you can give!  I am sooo grateful for this forum.  

Larken