Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> tryptase normal what next http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1401454304 Message started by Kalle on 05/30/14 at 01:51:44

Title: tryptase normal what next
Post by Kalle on 05/30/14 at 01:51:44

As I suspected since I was not having a reaction, my tryptase levels all normal. Taking into consideration that I'm dealing with a physician that knows nothing about MCAD, what test would you recommend I ask for next? Is there a specific blood test that will show mast cells even though I'm not having a severe reaction? I appreciate your help.

Title: Re: tryptase normal what next
Post by Lisa on 05/30/14 at 06:00:10

Hi Kalle,

A normal tryptase does NOT rule out a mast cell disorder. This has been well established because there are primary and secondary causes of mast cell disorders and this may be what explains the low trytpase in many of us.

You can ask for a 24hr urine histamines or urine methylhistamines and also a 24hr PGD2 and PGF2 test - prostaglandin D2 and Prostaglandin F2. Some other doctors like to also test serum heparine levels, serum serotonin and 5-HIAA which is a urine serotonine teste. Then there is also Chromogranin A. These last two are for the carcinoid syndrome but in masto patients they can also be part of the overall picture, so it's good to have those done as well.

I hope this helps!

Lisa

Title: Re: tryptase normal what next
Post by peter on 05/30/14 at 11:30:53

Regardless of the variant of SM, the release of various pro-inflammatory and/or vasoactive mediators from MCs can cause diverse clinical problems [21, 25–27, 28•, 29•, 30]. The symptoms recorded vary in severity and frequency, and range from mild pruritus or flushing and headache to severe hypotension or even life-threatening anaphylaxis [21, 25–27, 28•, 29•, 30]. In severe cases, tryptase levels increase substantially and an MC activation syndrome (MCAS) is often diagnosed [

Title: Re: tryptase normal what next
Post by peter on 05/30/14 at 12:15:54

, MC activation can also manifest as a less severe condition, so that MCAS cannot be diagnosed, even if these patients are suffering from quite a lot of symptoms requiring therapy. In other words, not all mediator-related and clinically relevant symptoms are (can be) classified as MCAS. It should also be mentioned that basophil activation can lead to severe symptoms mimicking MC activation

Title: Re: tryptase normal what next
Post by peter on 05/30/14 at 12:29:13

MCAS is a syndrome characterized by severe, episodic, systemic symptoms, with proven involvement of MCs and MC-derived mediators [31, 32••, 51–55]. It is noteworthy that MCAS is not a novel category of mastocytosis, but a clinical syndrome that can develop in any type of mastocytosis and in any kind of patients, and can also disappear even if mastocytosis is still detectable. The diagnosis of MCAS can be established when (a) severe recurrent MC activation, usually in form of anaphylaxis, is found; (b) involvement of MCs can be demonstrated, preferably by a tryptase test (increase in serum tryptase during or shortly after the event); and (c) the symptoms respond to treatment with anti-mediator-type drugs or MC-stabilizing drugs [31, 32••]. The diagnostic elevation of tryptase is defined as at least 20 % of baseline plus absolute 2 ng/mL [32••]. For example, an increase from 10 ng/mL basal to >14 ng/mL at the event is diagnostic

Title: Re: tryptase normal what next
Post by Kalle on 05/31/14 at 07:52:52

Thank you all for your replies & info.

Title: Re: tryptase normal what next
Post by mrsmegorium on 08/25/14 at 19:47:40

http://path.upmc.edu/cases/case366/dx.html

That link includes the major criteria and the minor criteria for diagnosis. My tryptase is normal but my urine histamine is off. My son's tryptase is elevated by my other two children have very elevated prostaglandin. It is different for each of us yet we all share similar symptoms and different severity levels. The one with the least symptoms actually has the highest prostaglandin levels.