Mast cell test tells the story...

Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.

Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

Post Reply
User avatar
jme22
Adélie Penguin
Adélie Penguin
Posts: 142
Joined: Tue Aug 04, 2009 6:10 pm

Mast cell test tells the story...

Post by jme22 »

Greetings all,

Although my consult with the local allergist for mast cell issues was disastrous from start to finish, I'm glad to report that a few good things have come from it.

First, thanks to my frustration with the allergist's total lack of knowledge on systemic mast cell issues I made the decision to contact a "mast cell specialist" who authored a recent article on mast cell activation disorder. (MCAD) The physician answered my email almost immediately and gave me a very thoughtful response that essentially said "yes, it is likely that you have MCAD." Amazing. Just that simple. He sent many resources for me to share with my physicians and most importantly agreed to see me if I was willing to travel to S. Carolina, which I intend to do. He will act as the mast cell "expert" who determines treatment options but will also work in conjunction with my local gastroenterologist. I'm optimistic about this pairing and their ability to get me back to better health.

Second, the allergist ordered some of the specialized mast cell tests that are used as markers for systemic mast cell issues. I found out today that one of the tests came back abnormal. Specifically the urine N-Methylhistamine came back high. The normal range is 30 - 200 mcg/g Cr. My result was 370. Finally, maybe an answer to why I feel so awful. It looks like a systemic mast cell issue as I have been saying for nearly two years. I feel vindicated, relieved, justified and most of all hopeful.

The test had to go through the Mayo lab. Here is what the lab states about the test:
Increased concentrations of urinary N-methylhistamine (NMH) are consistent with UP, systemic mastocytosis, or mast-cell activation. Because of its longer half-life, urinary NMH measurements have superior sensitivity and specificity than histamine, the parent compound. However, not all patients with systemic mastocytosis or anaphylaxis will exhibit concentrations outside the reference range and healthy individuals may occasionally exhibit values just above the upper limit of normalf

The extent of the observed increase in urinary NMH excretion is correlated with the magnitude of mast-cell proliferation and activation, UP patients, or patients with other localized mast-cell proliferation and activation, show usually only mild elevations, while systemic mastocytosis and anaphylaxis tend to be associated with more significant rises in NMH excretion (2-fold or more). There is, however, significant overlap in values between UP and systemic mastocytosis, and urinary NMH measurements should not be relied upon alone in distinguishing localized from systemic disease.
So there you have it. I still haven't heard from the allergist with these results. (I requested they be faxed to my gastro which is how I found out the results.) Given that he doesn't believe I have a mast cell disorder, I guess he's trying to figure out how to tell me that the result is meaningless, or in error, or some other equally ridiculous explanation.

I truly appreciate the support from members of this board to "dump" the allergist and move forward with a new plan of action. Your words did not fall on deaf ears and I did heed your advice. Thank you one and all for your words of wisdom.

I don't know where this journey will take me but I'm hopeful for the first time in months and that feels good!

Julie
User avatar
Gloria
King Penguin
King Penguin
Posts: 4767
Joined: Sat Jul 07, 2007 8:19 am
Location: Illinois

Post by Gloria »

Julie,

I'm glad you have been vindicated and have results you can "hang your hat on." It sounds like the test was done with a urine specimen - is that correct?

Gloria
You never know what you can do until you have to do it.
User avatar
tex
Site Admin
Site Admin
Posts: 35067
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Julie,

It's great that you finally have some substantial, (indisputable), evidence. I'm sure you're right, that your allergist, (ex-allergist, that is), is spending some time trying to figure out how to save face. :lol:

Thanks for the update,
Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
User avatar
mbeezie
Rockhopper Penguin
Rockhopper Penguin
Posts: 1500
Joined: Fri May 29, 2009 3:14 am
Location: Texas

Post by mbeezie »

Julie,

I'm not surprised by your high result or your allergists lack of response. I'm guessing he will make his nurse call you or send you something in the mail.

I'm glad you followed through with the S. Carolina doc. Even though it's a long way you will feel so much better knowing that you now have a doctor who understands your symptoms and won't dismiss you as a hypochondriac.

Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
User avatar
sarkin
Rockhopper Penguin
Rockhopper Penguin
Posts: 2313
Joined: Thu Mar 10, 2011 8:44 pm
Location: Brooklyn, NY

Post by sarkin »

WOW, Julie - great news on all fronts. It sounds as though you'll be able to proceed with this information (without the un-help of your former allergist) and get a really tailored treatment program in place.

Plus - and I *love* this part - YOU WERE RIGHT! I'm so glad your results were decisive, and not borderline - and not only as a dope-slap to the allergist, but so you can be very sure you're heading in the right direction. Of course, high results on a 'yikes' type of test aren't something we really hope for, exactly... but after feeling awful for so long, a clear answer is a wonderful thing!

I hope you feel great just holding these results in your hand. It sounds as though your GI and your new mast-cell expert will make a wonderful team.

Sara
User avatar
deltawolf
Little Blue Penguin
Little Blue Penguin
Posts: 36
Joined: Sat Jun 25, 2011 12:32 pm
Location: Cleveland, OH

Post by deltawolf »

Julie,

Glad to hear you are making progress. I hope this will in turn be able to help you soon.
Amy
User avatar
jme22
Adélie Penguin
Adélie Penguin
Posts: 142
Joined: Tue Aug 04, 2009 6:10 pm

Post by jme22 »

Hi all,

Thanks for the support!

Gloria - yes, the test is a 24 hour urine collection. If you would like more information here is the link from Mayo regarding the test:
http://www.mayomedicallaboratories.com/ ... tive/83011
It's an easy test, just a bit of a pain in terms of always needing to be near the "jug" so to speak!

Tex - "ex-allergist" is absolutely correct! Interesting that hand written on the lab test result was a synopsis of my test results over the past two years. Apparently written by the allergist as he tried to put all the pieces together after receiving the positive N-meth urine test. Must have really thrown him for a loop when the test came back positive. I can just see him saying, "Well, what do I say to her now?" So glad I don't have to deal with him again!

Mary Beth - Thanks for your thoughts and support, throughout this ordeal. Of all the specialized tests for mast cell issues, I too thought this might be the one that would come back positive. I was having so many classic symptoms of histamine release I thought there was a good chance this would come back elevated. It does help answer some questions, that's for sure.

Sara - "Dope slap" is the perfect response! I love it! You're right, having the extremely elevated result is a double edged sword. I'm glad to know why I feel as I do and have the symptoms that I do, but it is a bit scary. I'm trying to look at it as a positive, hoping that with proper diagnosis comes proper treatment. I have to be hopeful.

DW - Thanks for the kind words. I think I am finally moving in the right direction with all of this!

So, again thank you all for your support and words of wisdom.

Warm regards,

Julie
Post Reply

Return to “Main Message Board”