Hi all!  My doctor has brought up a possible diagnosis of systemic mastcytosis (?) for me.   So I have read LOTS of stuff on these web sites.  If I don't have this-- I wil be very surprised.
1) I don't have a "rash". I have psoriasis and some strange funky stuff under my nails .  Is that necessary to have a diagnosis of systemic mastocystois?
2) I have read that fish causes problems.  What about fish oil capsules?
3) I have read that left over meat causes problems.  How about if the meat is frozen after cooking and then eaten after thawed?

I am watching everything I eat now-- such a pain!  I am not eating fish, leftovers, berriers, red beans, dairy, barley, food coloring, blah, blah, blah.  No one knows if I have a food allergy or this so I am being overly cautios.
thanks for the help-- PAR

thanks for the reply.
I am seeing an allergist and my primary.  I have an appt with the type of dr who does colon work.  (not even gonna try to spell that!).
My primary wants me to get a 5HIAA urine test.  She wants me to wait till I have an "attack" (as I call them- maybe you call them episodes) and take the urine directly to the hospital to be sent out for testing.
To descibe what I call an "attack"- usually starts in late afternoon with
yawning, stuffy nose, so tired.  By bedtime- I am congested, full feeling, and I have restless leg syndrome so bad!  I cannot sleep-- My internal thermosat is off balance-- I am cold and hot at the same time!  I have to find the COLD spots on the sheets!
By morning- I have only dosed.  I am very sick to my stomach-- I have had diaherra for 8 hours!   I am not hungry, just restless, can't sleep.
Basically just waiting for this to wear off.  And by early evening - Gone!
All back to normal!
Is that wierd or what?
I can lose 4 lbs in one day!
Sometimes- it is not that bad but I live in fear of this happening.
What if it happens on my kid's wedding day or the day I was gonna finally get a vacation?  What do you all do?
Sorry so long---
THANKS IN ADVANCE
Par

Hi Par, welcome to the forum!!

Your allergist is on the right track, wanting to measure things during one of those episodes!  However, if she´s trying to measure methylhistamines then she needs to ask for a 24hr urine methylhistamines exam and when you do it, the jug of urine must be refrigerated during the day.   This will give you a reading in crisis, but you need to do this as a baseline to see if you have chronic histamine release and not just acute release.   Acute release only says you were in crisis, but chronic release is an indicator for mast cell disorder.

The 5-HIAA is used to measure methyl-serotonin levels and this is something that can be elevated with masto but is mainly a marker for carcinoid.  This is normal to ask of those of us without skin lesions to do this because the carcinoid syndrome mimics masto e vice versa and since it is the more common and more dangerous disease....!

I hope this helps!

Oh forgot to add-- I do take zyrtec.  I also use alstalin spray and benatryl.
I have an amazing tolerance of anti- histamines.  For years I took sudafed and zyrtec every day untill my bp went way up!
Even before I knew about this illness, I use to say I have too many histamines in my body!!
Funny how we know ourselves!

Sounds to me as if you have mast cell disease. There is no reason for your doc to have you sit around until you get a bad attack. You should be treated now to get those symptoms under control so that you are not feeling miserable. I lived like that for 10 years, but at least I had a doctor who was trying his best to find medicine to help me (poor guy never did try histamine blockers).

I would be really curious to see if you improved with the basic meds:

Zantac right after you get up in morning and then again early evening
Zyrtec early evening
Allegra right after you get up in morning

If it were me, I would try each med by itself for a couple days. If not bad reactions (which you shouldn't have), add another med. Try those 2 meds together for a few days. If fine, add the third med. You might be amazed at the instant improvement!

I take just basic meds and do great. I had similar symptoms to you, but additional ones which made it even worse. I was going into anaphylaxis (blood pressure plummets, passing out, organs shutting down) and no doctor recognized it because I don't have breathing problems (oh those stupid docs). Here is what I take as an example for you:

7 am Zantac 300 mg
7 am allegra. 180 mg
4 pm zantac 300 mg
4 pm 10 mg zyrtec

If I trigger up to 3:00pm and start getting too sick, I will take an extra zyrtec. If I trigger after I have taken my 4:00pm meds, I can take am extra Allegra.

When I used to be super itchy, hot and cold at the same time (I called it feeling as if I was burning under the top layer of my skin), I used to take 10 mg singular at 2:30pm. (only once a day). That eliminated those symptoms.

Good luck

Par,

A negative triptase does NOT rule out masto!!   The new MCAS consensus document openly states this.   There~s still a LOT to be checked out on you before they can say that.


If you want a copy of the document for your doctor, let me know, please.  PM me with your email and I´ll send it to you and anybody else asking for it!!

Lisa