Some people have anaphylaxis from a mast cell disorder.  We call them "shockers."  Others don't have full-blown anaphylaxis, but may have some symptoms of it some of the time, such as tachycardia, GI issues, breathing difficulty, pain, hives, blood pressure fluctuations, etc.    If they don't have major reactions most of the time, we call them "leakers," because their mast cells leak mediators constantly, but slowly.  Shockers have massive degranulations of mast cells within a short period of time and go into anaphylactic shock.

So, the answer is no, you don't have to have anaphylaxis to have a mast cell disorder.  MCDs can cause certain abnormal blood tests, e.g., tryptase.  Symptoms often occur from eating foods or environmental exposures when IgE allergies are not present.  Some people with MCD's have that and true allergies, too.

I'd recommend seeing a mast cell disorder specialist to rule it in or out based on testing.

Any kind of stress, physical or emotional (even including exercise or heat or happy excitement) can trigger mast cells.  Pre-medicating with extra antihistamines can help, too.

  Something is not right here.  The "mast cell specialist" says you don't have a mast cell disorder without ordering any testing?  This is not a real mast cell specialist!  There are a number of specific tests that look for too low and/or too high mast cell mediators.  Abnormalities on the tests, especially when there is some relief of symptoms with antihistamines, indicates a mast cell issue.  Elevated tryptase is almost always from a mast cell issue.

  Flushing is, in fact, a sign of anaphylaxis in mast cell disorders.  My flushing either starts with or is sometimes isolated in my ears.  They get red and hot.  It's one of my early warning signs that something is beginning that needs my full attention.  Low or high BP (either one), high pulse rate, diarrhea and nausea (and/or vomiting) are also signs of anaphylaxis.  If certain other diseases are ruled out, such as carcinoid syndrome and pheochromocytoma, then there is very little else it could be besides a mast cell disorder.

  There are only a handful of specialists in mast cell disorders.  If you post your location, someone can recommend a doctor nearby who won't blow off a very serious symptom.

  It's certainly possible to have both a mast cell disorder and environmental allergens.  I have both.

Something does sound fishy here.  Dr Metcalfe has been involved with mastocytosis research for decades, but the NIH is known to to NOT  recognize and treat MCAS.  

Jewels, just because you are not facing full blown near to death variety of anaphlaxis, doesn't mean you're not facing anaphylaxis.  There are four different stages, as listed in this emergency trifold from the TMS:

http://www.tmsforacure.org/documents/TMSERBrochure.pdf

Anaphylaxis Severity
Anaphylaxis symptoms can occur on a continuum:
Grade I: Cutaneous signs such as hives or rash.
Grade II: Cutaneous signs, and hypotension, tachycardia, presyncope,    dyspnea or GI distress.
Grade III: Profound hypotension, bradycardia or tachycardia, cardiovascular collapse, confusion, bronchospasm, hypoxia (SaO2 <92) and GI distress
Grade IV: Pulseless electrical activity (PEA) or cardiac arrest.  

Dr Afrin told me that Epi is only helpful if I have angioedema/swelling in the throat/difficulty breathing that continues despite taking my other emergency meds.  I have had throat swelling about 10 times, and IV Benedryl pulled me out of it, only had epi once (given to me during delayed alergy skin reaction after explosive symptoms came out of nowhere).  A different time, a paramedic did not give me Epi, even though I was in "full blown" anaphylaxis, as Benedryl brought me out of it.  That line of thinking isn't true.  I tend to get really low BP and face syncope/presyncope as my most severe common reaction, which falls under late Grade II/early grade III.  Epi doesn't help the really low BP, but dye free Benedryl liquid gels sure do help me.  

Years ago, an allergist told me that I should always be prepared as the next time could take less than 1/2 the time to progress.  

Did you find that doc on this forum?  I suggest finding a recognized mast cell specialist who understands MCAS.  They will rule out SM first.  Asthma, allergies and IC are all mast cell related, so it is not a stretch here.  

Best wishes in finding answers.  
Lyn

Just got off the phone with my family doctor's office and they have no issues with testing whatever I need. I'm looking around the forum and have found the following tests that have been used for MCAS mostly from Dr. Afrin:

serum tryptase, serum chromogranin A, (chilled) plasma histamine, (chilled) plasma prostaglandin D2, (chilled) urinary N-methylhistamine (24-hour collection preferred over a random collection), (chilled) urinary prostaglandin D2, (chilled/stat) plasma heparin)  

GI biopsies CD117, Giemsa, tryptase, CD25 and CD2, and toluidine blue stains. More than 20 mast cells per high power microscopic field = abnormal then do KIT-D816V mutation testing.

24-hour urinary prostaglandin D2 (PGD2)


I have an appointment 10-30-2012 and will hopefully have a decent amount of information to provide her. I don't know how many of these they can do, but we'll see.

Lyn,

You mentioned that you were told to only do an epipen if you had angiodema or throat swelling. Dr. Akin told me to use an epipen if I felt that I was going to pass out. (I don't have breathing issues, yet I do go into full anaphylaxis.) Just thought I would share his advice for me on when to use an epipen. Luckily ever since that advice, I have always stopped my symptoms with meds before they got to that passing out stage, and thus I have never had to use an epi!

I'd like to step in here for a moment please.   Doozlygirl, I don't think we can just write off Dr. L based only upon Jewel's experience.  We don't know what tests he ran and why he came to his conclusions.  Let's not be rash and go and write off a good doctor who just came out from under Dr. Metcalfe's tutilage.  I'm not saying that Jewel is wrong. I'm only saying that it takes a great deal to become a physican and to get into the NIH isn't for just any old doctor.  You've got to have some pretty excellent qualifications to get to that spot.  

Yet what my suspicion is is that the doctors who come out of the NIH and Dr. Metcalfe's mentorism are going to think and behave as he does.  Dr. Metcalfe does not fully agree with the MCAS diagnosis and considers it "controversial" according to another member here.  He is known as a hard liner for ONLY the SM diagnosis and patients who come out of the NIH are often given the diagnosis of IA and not MCAS.  In fact, he has never been known to give the IA diagnosis.  And if you consider that Jewel is still unsure as to whether or not she goes into anaphylaxis, in telling a doctor that she doesn't, the doctor is going to take her word for it and rule it out then as a possible diagnosis.  So, if you think about it, if Jewel came back with zero results of any kind of alteractions, which others here have done as well, and she's not going through anaphylaxis, then that ends up giving the doctor NOTHING TO GO ON!   Are you seeing the thought process here?

This is something that Dr. Akin and Dr. Castells both have also done with patients here on the site.  In fact, Heather just recently saw Dr. Castells and she gave Heather a diagnosis of IA and not MCAS!  Why?  Because the only marker seen off with Heather is the High Affinity IgE marker and due to lack of studies, this has not been directly diagnostic of anything but Chronic Urticaria studies.  Even Dr. Castell's hands are tied!  But because Heather goes into anaphylaxis, this was the reason why IA was the diagnosis.   Is it a part of MCAS?  Probably, but doctors, especially ones with big reputations, have to go by the books in the States and it's really tricky business if they step outside of their comfort zone.  

So, let's not be rash to judge Dr. L yet.  We also must remember that all of us, especially in the beginning, are totally ignorant as to what tests are run on us and what they indicate and what the doctor is seeing.   I remember very well in the beginning as to how hard it was to just have all kinds of testing done without a single clue as to what it was or what it meant and when my tests returned all normal in the beginning it was extremely discouraging.

I think Jewel that you should go on to another specialist and Dr. Afrin is known for thinking outside the box, which may be necessary in your case.   I am willing to bet that if Heather went to him, that he would run some of the other MC marker tests which are rarely run on us and end up finding more proof, something that Dr. Castells didn't do.  Would that mean that Dr. Castells is a total incompetent?  NO WAY!  It's just their methods are different.  Does that make Afrin better?   NO to that either.  He just thinks outside of the box but he has is weaknesses too, like ALL OF US.  

Remember everybody, each case is a case and is individual and with a disease as complex and difficult to diagnose as this we MUST HAVE PATIENCE WITH OUR DOCTORS!!!   We have way too few of them as it is and Dr. L is only beginning in his journey into MCASlandia.   We MUST give him time and understanding.  He seems to be a caring man and he seems to me genuinely INTERESTED and willing to learn.   Just the fact that he is a member here and is  willing to listen to us and our stories and challenges shows that he's got the right heart and intentions and any doctor who is that caring towards learning more shows that he will grow with time!!

Be KIND please!   We all are novices when it comes to medicine!


Lisa