I didn't see an H2 histamine blocker, such as Zantac (ranitidine) or Pepcid (famotidine) on your list of meds.  If you are having histamine releases in your stomach, these medicines can help a lot.  Histamine stimulates acid production in the GI system. Some people take up to 150-300 mg Zantac, twice a day or 10-20 mg Pepcid, twice a day.

Using a longer acting antihistamine, such as Zyrtec, might help you feel better in the mornings.  10 mg. is often the dose that's helpful.

Of course, as with any Rx or over the counter meds, do run these by your
doctor before starting anything new. Also, only start one new medicine at a time, one every few days.

Hope one of those works. One other thought...  If the docs want you to have a colonoscopy or an oral prep before testing, be sure to talk this over with a mast cell doctor before the tests.

A tryptase level of 11 is not normal but with systemic mastocytosis it is much higher which means you most likely have MCAS.
Healthy people have tryptase levels between 3 and 5.


CM is diagnosed by the presence of typical skin lesions and a positive skin biopsy demonstrating characteristic clusters of mast cells. The preferred method of diagnosing is via bone marrow biopsy. The World Health Organization (WHO) has established criteria for diagnosing SM, restated below:

Major Criterion:
Multifocal dense infiltrates of mast cells (>15 in aggregate) in tryptase-stained biopsy sections of the bone marrow or of another extracutaneous organ.

Minor Criterion:
1. In biopsy of bone marrow or other extracutaneous organ(s), more than 25% of the mast cells show abnormal morphology (that is, are atypical mast cell type I or are spindle-shaped) in multifocal lesions in histological examination.
2. Detection of a point mutation at codon 816 in the KIT receptor gene. This may be found in bone marrow, blood or other internal organ.
3. KIT-positive mast cells in bone marrow, blood, or other internal organs are found to express CD2 and/or CD25.
4. Serum total tryptase level persistently greater than 20 ng/mL. This criterion cannot be used if the patient has a clonal non-mast cell associated hematological disorder.

The presence of one major and one minor criteria or three minor criteria constitute the diagnosis of systemic mastocytosis.
http://tmsforacure.org/patients/mastocytosis_explained_2.php

The mast cells in your bladder would not be causing your heartburn, but mast cells in the stomach can.  Mast cells produce histamine which stimulates the production of hydrochloric acid by the cells in the lining of the stomach.  Too much histamine, too much acid.

At this point there's no reason to worry about SM.  there is good reason to stay strictly on a low histamine diet for a while and see if you can figure out if and which foods are triggering your symptoms.

in a prior post, I mentioned that H2 can help with hyperacidity.  Ask your doctor about that.

No, it's not necessarily SM.  for example, there is another disorder, Mastocytic Enterocolitis, that can cause lots of GI symptoms.  It's treated with probiotics, H2 antihistamines, and sometimes with bromelain.  If you look it up and think that's what you have, there are two experts, one in Colorado and one in Oklahoma City, who can treat it.

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.

What treatment is being recommended for the E.E., if you don't mind sharing that?

I had a GI scope with biopsy for mast cells and all was normal. They didn't find any reason for the heartburn.  One of the doctors I saw said that I could have mast cells somewhere in my body and that could be triggering the heartburn.   I tried the zantac and prescription meds but nothing takes away the heartburn.  I'm just careful of what I eat.  I do know that when I don't follow the low histamine diet my bladder bothers me and the heartburn and belly burn gets worse.