Mast Cell Disorders Forum - Tests during Baseline, and Flare(? on flare one)

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Tests during Baseline, and Flare(? on flare one) (Read 3340 times)

Bruce Hart

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Tests during Baseline, and Flare(? on flare one)
02/01/14 at 07:17:12

Ok so I guess for the non-mastocytosis MCAS, they still test for it by comparing a baseline blood and urine sample collection with samples taken during or soon after a flare of symptoms?

Since nobody wants to purposely make themselves super sick, how is this done? Are arrangements made to be able to quickly go to the MCAS specialist or the ER to get blood and maybe urine samples soon after a substantial symptomatic flare?

I have an appointment with an MCAS specialist in 3 months so I'm sure I'll find out then, but I would like to know now because I'm discussing it with someone else who wants to get tested and I also have an MCAS blog.

And it's still ok to be on anti-histamines right? I know it's recommended, if possible, to avoid taking NSAIDS, such as aspirin, for several days before the sample collections since those actually inhibit production of the PGD2 which is one of the mast cell mediators tested. Since vitamin C degrades histamine is it recommended we also go off high dose vitamin C supplementation for a few days before the sample collection too, or does vitamin C degrade histamine into the metabolite they test for? I don't think it does.

Also if the day of the first sample collections, you're flaring and the levels of mast cell mediators are super high, do they still like to get a baseline sample?

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sarahkay1111

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Re: Tests during Baseline, and Flare(? on flare one)
Reply #1 - 02/02/14 at 16:06:20

Hi Bruce,

I can answer some of your questions. I had baseline blood and urine levels done before I ever started on antihistamines, before I knew what I had. I was having some mild symptoms and my tryptase was 10.7, everything else high normal. They sent me home from Mayo with a 24-hour urine jug to use when I had a flare. It was pretty handy because they send it with a pre-paid package to mail it back in (directions included). So, you don't have to trigger yourself, just wait for it to happen, because you know it will soon enough. Be prepared to be frustrated though. It took 3 samples to catch my high prostaglandins. I learned to keep the urine cold, even though they tell you that you don't have to. Also, they did a histamine blood test when I was not flaring and it was high. I still have no actual diagnosis from the mast cell doctor at Mayo, but I have the diagnosis of Mast Cell Disease from my GI doctor there. Interesting huh? The last sample I did, they sent home a kit with blood tubes in it to bring to the ER for tryptase and serotonin levels with an acute reaction. I started my urine, and went to the ER for the blood draws after I had another severe reaction. I was on all of my antihistamines, plus extra Benadryl and I had to take prednisone, and the prostaglandins were still high. So you can and should be taking your antihistamines--you'll need them with a reaction Cry

I hope this answers some of your questions. Please feel free to ask me more if it's confusing--had another reaction from stress and lack of sleep on Friday, so not thinking clearly now. Good luck and I hope you get the answers you need

Sarah

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DeborahW, Founder FOUNDER/ADMIN Offline Posts: 1224 USA	Re: Tests during Baseline, and Flare(? on flare one) Reply #2 - 02/03/14 at 16:28:33 I was diagnosed by Dr Akin by my symptoms, my good response to antihistamines, and my negative BMB. I had the complete bloodwork and tryptase test as well. Nothing to compare if to for me, but I have Idiopathic Anaphylaxis/MCAS.
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Bruce Hart

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Re: Tests during Baseline, and Flare(? on flare one)
Reply #3 - 02/04/14 at 04:13:09

Ok thanks a lot guys this is very helpful info.

I hope I can make the first doctor visit count because the trip and visit may mess me up pretty bad causing me not to go back for a long time. I will have a heavy duty mask with me but I'd like to remove it to be able to talk to the doctor better. I guess the MCAS specialist would know better than to use air fresheners or wear fragrances though so maybe his office wont be so bad. Hopefully there's no other strong smells from renovation or cleaning or from previous patients soaked in fragrance.

My concern isn't having a day or two ruined by a bad reaction; I'm concerned about the long term increase in sensitivity that bad exposures has caused me in the past. Although after getting on anti-histamines I don't seem to get long term increased sensitivity any more so maybe it wont be a problem.

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Bruce Hart

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Re: Tests during Baseline, and Flare(? on flare one)
Reply #4 - 02/04/14 at 10:28:04

Hey Sarah. I thought of a new question. With the 24hr urine collection, was all urinations mixed? It seems it would make more sense to have a different container for each urination, and notes taken of the time of symptoms and degree of symptoms in relation to each urination.

I'm not sure averaging it from all urinations would always be sufficient given the difficulty in diagnosing MCAS. Instead of averaging, they could look at it and say #3 urination which was 30min after the symptoms were severe from a reaction to perfume the N-methylhistamine and PGD2 is highest and it's far lower in urination sample #1 and #2 which was before the reaction and in #6 which was the last urination and when symptoms were low or gone. The unmixed urine samples method would allow smaller increases in mast cell mediators to be more convincingly associated with MCAS.

We'd also need to take note of the times we take meds and extra meds and stress levels if that's a trigger for the person especially. Examining levels in several more samples would increase cost, but it would be worth it to me if that's what it takes to get diagnosed.

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sarahkay1111

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Re: Tests during Baseline, and Flare(? on flare one)
Reply #5 - 02/05/14 at 04:19:30

Hi Bruce--they do not do them separately. You put it all in one container. You dump the first void after you start having symptoms and keep the rest. Or, if not having a flare, just start it whenever. Just keep it cold, but don't be surprised if nothing is elevated. This disease is sneaky and frustrating. Good luck with everything! Sarah

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Bruce Hart

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Re: Tests during Baseline, and Flare(? on flare one)
Reply #6 - 02/05/14 at 05:53:06

Oh ok. Separate urination samples would still be better, but what you describe sounds like it could be good enough where you only start collecting urine after you get symptoms. That's better than I was imagining from the name of it being 24 hr collection it makes it sound like you collect all urine from 24 hrs. Thanks a lot for the info.

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sarahkay1111

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Re: Tests during Baseline, and Flare(? on flare one)
Reply #7 - 02/06/14 at 07:50:12

Hi Bruce,

No problem:) You do collect all the urine from 24 hours, but you can do it without symptoms, or with. I did one without any symptoms, and I have done a couple with symptoms. If you have symptoms all the time, you might have elevated mediators without having a major reaction... I hope you get answers no matter how you do it

Sarah

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