Mast Cell Disorders Forum - Tryptase test guidance needed please

bongaan

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Tryptase test guidance needed please
02/25/14 at 06:59:19

Hi everyone! Posted ages ago on this forum, I'm still on the path of being diagnosed. I believe it's either MCAS or histamine intolerance. Recently did a baseline tryptase test and it came back normal, but that was no surprise to me as I'm eating a full on masto/histamine intolerance diet and I'm avoiding all my triggers, wasn't ill when they tested me. So all we know is that my tryptase is normal while I'm managing my diet and triggers....mmm, that doesn't say much. So we need to do another tryptase test while I'm ill/reacting, but this is where it gets difficult. I don't get ill anymore like in the past, obviously due to the diet and trigger avoidance, now how do I go about doing a proper tryptase test. My doctor just said, eat something like toast with a lot of cheese and go do a tryptase test. Mmm...and what if I get anaphylaxis? As I don't have any idea what's going to happen if I suddenly eat cheese. I never became ill before to the degree where I needed the ER or adrenalin, but I havent had any high histamine food in ages.

So my question is, how do I go about doing a PROPER tryptase test. I don't want to go when I just feel under the weather, as this is the worst I feel these days. I wish to get a proper reaction, but in a safe way or safe environment, so that if the test results come back it'll be a clear cut case whether the reaction was due to mast cell release or not. Then the other thought I have, should I eat something that contains histamine or should I eat a non-histamine trigger food. The reason why I ask is because I would like to be sure that when I feel terribly ill that it's not due to excessive histamine absorbed in the gut (possible histamine intollerance) but due to a mast cell reaction.

I hope you can guide me and give me some tips on how to go about this test. Thank you so much!!!

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bongaan Tutor Offline I Love YaBB 2! Posts: 32 South Africa	Re: Tryptase test guidance needed please Reply #1 - 02/26/14 at 04:07:48 Read 27 times and no comments
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zippy890 Tutor Offline I Love YaBB 2! Posts: 97	Re: Tryptase test guidance needed please Reply #2 - 02/26/14 at 06:05:42 I would venture to guess that, you have to know what makes you react, food, inhalant, temp., etc.. For me it's easy (so easy that I don't want to do it !), eat kefir ...twice within two days. If I do that, I'm a basket case. So what makes you react badly ?
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Bruce Hart

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Re: Tryptase test guidance needed please
Reply #3 - 02/26/14 at 08:31:09

Yeah I had the same concern about high histamine foods affecting MCAD tests, although I don't eat them myself anymore. They may affect MCAD tests so I would avoid them.

While less of a concern after starting anti-histamines, exposure to triggers has a chance of chronically exacerbating my condition so intentional exposure to a trigger would be a last resort for me.
Though I doubt I will be able to get to my first MCAS doctor appointment without having a unintentional substantial reaction to something. However, in either case, my goal is to first test for mast cell mediators in whatever state I arrive at. If it comes back normal then I will try taking home a urine collection container for N-methylhistamine and PGD2 and start urinating in it after a flare of symptoms. If that fails and I still think it's worth the diagnosis then I may purposely expose myself to a trigger for testing purposes.

If a doctor agreed and I could afford it, for intentional exposure for myself I would prefer:

the tests = serum tryptase, plasma PGD2 and histamine, and spot urinary PGD2 and N-methylhistamine

1. Take the tests at baseline before my reaction to a trigger. This will more strongly show symptoms are caused by elevated mast cell mediators if baseline levels are normal just before reaction and it also avoids the urine produced before the reaction from diluting the mast cell mediators in the urine.

2. Expose myself to airborne trigger that causes my symptoms within seconds. Then take 2-3 hourly determinations of the tests. I think the serum and plasma samples would be collected starting right after the reaction and the urine samples would start as close to 1 hour later as possible.

However, maybe better would be to have a 24 hour collection for baseline and 24 hr or 3 hr collection when you've had a substantial reaction to something.

There's a lot of things that can screw up the tests that you need to be aware of. Here's some links to check out. I'm still unclear on some details and exactly the best way to be tested for MCADs. I wont be tested for at least 2 more months myself.

N-methylhistamine protocl for MCADs(I'm guessing it would be the same for PGD2):
http://www.mc.vanderbilt.edu/root/pdfs/vpls/Methylhistamine_Protocol.pdf

General guidelines not specific for MCADs:
http://www.mayomedicallaboratories.com/test-catalog/Specimen/83011
http://www.mayomedicallaboratories.com/test-catalog/Specimen/57149

Recent publication for diagnosing MCADs.
http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm

This quote from last link is what I would prefer if possible:
"If possible, hourly determinations of serum tryptase, plasma PGD2 and histamine, and spot urinary PGD2 and N-methylhistamine should be pursued at baseline and over the next 2-3 h as a flare evolves."

Also read under "SPECIMEN HANDLING ISSUES" in the last link.

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sarahkay1111

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Re: Tryptase test guidance needed please
Reply #4 - 02/28/14 at 07:14:40

Hi Bongaan,

I am also still in the diagnosis stage (over 1 year at Mayo) with multiple anaphylactic reactions. I have had my blood drawn in the ER and my tryptase does not elevate with reactions. I have had high prostaglandins in 2 of my 24-hour urines. From what I've read, tryptase rarely elevates with reactions unless it's from venom. I've read food reactions don't elevate tryptase. I think it's kind of a waste of money for those of us who don't have Mastocytosis. My baseline tryptase is 10.7. One of my doctors told me to eat spicy food and have my levels tested, but I don't feel like dying to validate a test. I have had very severe reactions with no tryptase elevation. So, maybe for you, they could focus on other mediators and your symptoms and how to treat that? Have you done 24-hour urine tests? You can keep the kit at home until you have a bad day, and then start the collection. I wish you the best and I know how frustrating this is to get an actual diagnosis with actual treatment advice from a doctor Cheesy

Sarah

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Ladybug

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Re: Tryptase test guidance needed please
Reply #5 - 02/28/14 at 21:15:48

[quote author=7B4B4C5A5C7855555C5771584B4D390 link=1393354759/3#3 date=1393446669]Yeah I had the same concern about high histamine foods affecting MCAD tests, although I don't eat them myself anymore. They may affect MCAD tests so I would avoid them.

N-methylhistamine protocl for MCADs(I'm guessing it would be the same for PGD2):
http://www.mc.vanderbilt.edu/root/pdfs/vpls/Methylhistamine_Protocol.pdf]

Ugh, Bruce. I just read this N-methylhistamine protocol by Vanderbilt and it says not to freeze the specimen. This is confusing as the Mayo lab reads: http://www.mayomedicallaboratories.com/test-catalog/setup.php?unit_code=83011&fo...

How are we supposed to know which protocol to follow? This is so confusing, and can be costly. Not to mentioned time-consuming. Undecided

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Bruce Hart

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Re: Tryptase test guidance needed please
Reply #6 - 03/01/14 at 04:34:10

No they say to freeze it. They're just saying don't freeze the entire urine collection because they only want a portion of the total urine collection, which should be frozen before sending overnight express in a package containing dry ice.

Another thing that may confuse some people is when they say 24 hour volume required, they mean to write down the 24 hour total volume so they know the context of the smaller portion you send them. And ensure the total 24 hour collection is well mixed before transferring some to the smaller container.

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Ladybug

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Re: Tryptase test guidance needed please
Reply #7 - 03/01/14 at 04:54:04

Bruce Hart wrote on 03/01/14 at 04:34:10:

No they say to freeze it. They're just saying don't freeze the entire urine collection because they only want a portion of the total urine collection, which should be frozen before sending overnight express in a package containing dry ice.

Another thing that may confuse some people is when they say 24 hour volume required, they mean to write down the 24 hour total volume so they know the context of the smaller portion you send them. And ensure the total 24 hour collection is well mixed before transferring some to the smaller container.

Ah, this would make sense then. I was worried that I would have to do this over and miss another day of work. I've missed so much work for medical reasons.

Thank you for clarifying this, Bruce!

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