Hi Peter,

Glad the meds are working for you!  I don't know what the time limit is on Zometa, but you might be able to find out from the manufacturer's website or a bone metabolism specialist might be able to tell you.  Some of those drugs can cause bone death in the jaw and other parts of the body if used to long, but I don't know if Zometa is one of them.

When you mentioned "on or off" degranulating, are you referring to mast cells "leaking?"  That's what I believe.  Even with meds, they can still leak mediators, just in smaller quantities than in "shockers."

If that's not what you meant, please explain.

Your doctor doesn't mind being named on the forum along with his office contact information.  He does NOT want his email posted.  If you prefer, you could PM people who ask for it.  He also wrote that he does not consider himself a mast cell disorder expert, but we know he's been good in treating you.

http://ainotes.wikispaces.com/file/view/Contemporary+consensus+proposal+on+crite...

Joan wrote on 05/04/12 at 16:20:56:


Hello Joan

I would be interested to hear about that. I stopped gastrocrom as the benefits were minimal and too much faffing around with the capsules. I found a link for luteolin and see a german Company sells it in Europe. Anything licensed by Germany is considered 'good to go' elsewhere in Europe as their licensing laws are so tight.  It's quite expensive so I might see if there is a version licensed in the UK and get it from my GP as we pay no prescription charges in Scotland.

 

   




theses are the people we wont woaking for us


Vol. 159, No. 1, 2012    

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Review

Evaluation of Mast Cell Activation Syndromes: Impact of Pathology and Immunohistology
H.-P. Hornya, K. Sotlara, P. Valentb

aInstitute of Pathology, Ludwig-Maximilians-University, Munich, Germany;
bDivision of Hematology and Hemostaseology, Department of Internal Medicine I, Medical University of Vienna, Vienna, Austria


Address of Corresponding Author

Int Arch Allergy Immunol 2012;159:1-5 (DOI: 10.1159/000336374)


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 Abstract

Mast cell activation syndromes (MCAS) are clinically defined disease states with a largely unknown morphological background. Since mastocytosis may be associated with MCAS, it is crucial in every patient to document or exclude mastocytosis by appropriate histological, molecular, and serological investigations of tissues/organs that are commonly involved in mastocytosis like skin, mucosa of the gastrointestinal tract and bone marrow. Accordingly, histopathological investigation including immunohistological stains is crucial to reach the final diagnosis in such patients and to classify MCAS into primary MCAS, which can present with or without evidence of overt mastocytosis, or secondary MCAS, where an underlying disease with or without tissue inflammation is detected. Cases without evidence of mastocytosis, monoclonal mast cells, or any underlying disease should be termed idiopathic MCAS. When the activating point mutant KIT D816V is detectable but criteria for diagnosis of mastocytosis are not completely met, a so-called (mono)clonal MCAS as a subvariant of primary MCAS should be diagnosed.

HI wendy I started this blog for people with SM hoping to find
people like you your post will help a lot Joan is a lot better communicator then I the fire in the gut i now well
i take all my pills with milk seems to help a bit
I copied your post to the new doc as a ?? hope you dont mind
peter

Current state of biology and diagnosis of clonal mast cell diseases in adult                                                    -----------------------------
shttp://onlinelibrary.wiley.com/doi/10.1111/j.1751-553X.2012.01427.x/full
BY HEMATOLOGY free
use this one deb