Joan
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Everyone has mast cells throughout the GI tract, but some people have an over-proliferation of them, and that can be diagnosed as M.E. I asked Dr. Lewey, who has treated over 500 patients with Mastocytic Enterocolitis, and he feels M.E. will eventually be classified along with other mast cell disorders, but as of now is considered a separate, rare disorder. M.E. can occur due to an over-proliferation of mutated or non-mutated mast cells.
An over-proliferation of any type of mast cell can cause severe symptoms, because too many mediators for the body to manage are released. The value of biopsies, done during colonoscopies and endoscopic procedures, is to diagnose the over-proliferation of mast cells in the GI tract (M.E.), which is then treated with a protocol of diet, supplements, and medications. Last year Dr. Lewey said he has an 80% cure rate with his protocol on patients with M.E. So testing is important in order for people with M.E. to have a chance to be cured.
If there are many mast cells, clusters of mast cells, or malformed mast cells, then a tryptase test is done and the samples can be evaluated for gene defects that would rule in or out other diagnoses, such as SM. While symptoms in SM patients may be helped by the M.E. protocol, it will not cure SM.
Regarding MCAS, some experts feel there are abnormal genes involved in it, but the mutations have not yet been found. Others feel that it involves mast cells that malfunction and release mediators inappropriately for unknown reasons. Its diagnosis is based on patient symptoms, temporarily elevated tryptase and/or other mast cell mediators, and symptom response to antihistamines and other medications.
There are differing opinions regarding progression of MCAS. Some doctors feel it's a precursor to SM, and that those whose disease progresses were always SM. Others feel it isn't progressive and usually can be controlled effectively by medications, diet, and lifestyle modifications.
In a recent publication (to which Bruce recently posted a link), Dr. Afrin says that mast cells live from several months to several years, but he is writing about MCAS. In SM mast cells live a lot longer than normal mast cells. Because the mutated mast cells reproduce faster than they die off, the total numbers increase over time.
Spartako, I couldn't find anything written about mast cells dying after about 10 years and fewer being produced as we get older. Do you have a reference I can read? I'd like to know more about that aspect of SM. I always thought proliferation continues throughout life, but at a slower or faster pace depending on how aggressive the SM is.
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