Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> New here- a few questions http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1319147997 Message started by par4422 on 10/20/11 at 10:59:57

Title: New here- a few questions
Post by par4422 on 10/20/11 at 10:59:57

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

Title: Re: New here- a few questions
Post by Enko on 10/20/11 at 11:36:17

Hi there Par, welcome!

I'm relatively new here too, but I'll try to help with things I did learn by now (may someone please correct me in my conclusions if I'm wrong)

- it is not necessary to have rash for diagnosis of SM

- the problem with the fish and leftovers is that they are rich with histamine, which is a trigger for mast cells that are causing problems. Histamine is not destroyed by the temperature, so it's the best to eat fresh food

- you can try reducing your food to see what's triggering you, but it's the best to go through it with a doctor by your side. Someone earlier posted a link with safe foods, check out the forum

- what kind of doctor has taken your case? Most helpful are dermatologists, hematologists and immunologists. If I recall correctly, someone even mentioned oncologists. But IMHO, dermatologists and hematologists might have some clue about masto. There are people from around the world here - someone can give you a hint if there's a good doctor near you that can help

- what kind of tests did your doctor do by now to confirm his doubts?

Title: Re: New here- a few questions
Post by par4422 on 10/20/11 at 11:56:28

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

Title: Re: New here- a few questions
Post by Enko on 10/20/11 at 12:53:02

Believe me, that is not long! I've made two hematologists read a five page letter describing my symptoms - THAT'S long! :D So feel free to ask and say anything, someone will answer. Many people here had problems getting diagnosis, so we do understand you.

- yeah, allergists can help too *facepalm* - sorry, I have bad memory issues

- there are also other tests that can be done - histamine in blood and urine (24h test), methylhistamine (not sure did I spell it right) in urine (also 24h test), tryptase, IgE..

- did they test you for allergies?

- what about other symptoms: flushing, itching, brown spots on skin, headache, sensitivity to smells/sounds/light, pain in bones/muscles, intolerance to heat/cold, anaphylaxis, unexplained large weight loss or gain, fainting or near fainting, hypotension/hypertension, tachycardia, brain fog, mood swings? Do you have any of those? Be sure to tell your docs everything, no matter how small and insignificant it may seem to you!

- did you ever try any kind of antihistamines, like Zyrtec? Basically, they are safe, and if you see that it's helping you it might be a sign that you have a mast cell disorder, but also can mean that you have some kind of allergic reaction

Title: Re: New here- a few questions
Post by Lisa on 10/21/11 at 01:56:40

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!

Title: Re: New here- a few questions
Post by par4422 on 10/21/11 at 02:47:39

thanks so much.
As for other symptoms- I think I have flushing, I absolutely HATE the very hot weather but don't really mind the cold, I have been diagnosed with fibromyalgia and take ultram er daily, no weight loss (could use it!), no headaches, no mood swings, but brain fog is part of my life!

I am seeing my allergist Monday-- I hope he is also leaning in this direction so I can get the tests.

I am going to keep "lurking" on this board so I can learn more!

Title: Re: New here- a few questions
Post by par4422 on 10/21/11 at 02:50:51

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!

Title: Re: New here- a few questions
Post by Enko on 10/21/11 at 02:53:53

Intolerance to heat is significant - heat triggers mast cells and things go downhill. I wish you all the luck in Monday! I hope that your doc has done his homework :) Keep us posted :)

About Zyrtec - share that info with your allergist; if Zyrtec is making you feel better, that's a good sign. If you're having some side effects you can try some other H1 blocker

Title: Re: New here- a few questions
Post by DeborahW, Founder on 10/21/11 at 03:25:48

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.

Title: Re: New here- a few questions
Post by par4422 on 10/24/11 at 08:49:23

Well- today I went to the allergist. He ordered a blood test for the systemic mast. I got it done today. Should have the results in about one week.
In the meantime, I am on the elimination diet. Gross...I will not be able to eat too many things from the next 10 days. Rice Krispies, chicken, pears, peaches, and a few other things.
Maybe I will lose a couple of lbs...

Title: Re: New here- a few questions
Post by Enko on 10/24/11 at 10:30:36

Good luck :)

Title: Re: New here- a few questions
Post by par4422 on 11/08/11 at 08:52:55

Well Blood test came back negative so that is that.
I have not had an attack for a little over a month. I have eliminated dairy from my diet-- don't know if that is it but I am kinda leaning towards that.
thanks all for your help-- Wishing you all good health-- Par ;)

Title: Re: New here- a few questions
Post by Lisa on 11/08/11 at 11:46:23

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