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Tests to diagnose a mast cell disorder (Read 48357 times)
Starflower
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Tests to diagnose a mast cell disorder
02/02/11 at 13:21:31
 
Bringing over a post of mine from the old forum...

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People often come here and ask, "If I suspect I have a mast cell disorder, what tests should I ask for?"  So... I put this chart together based on the recent article on MCAS written by doctors Akin, Valent, and Metcalfe.

No doctor is going to order all of these tests at the same time.  It's really up to you to work through them systematically, keeping records of the results.

STEP ONE: baseline tryptase
(GP, allergist)
Normal... go to step three
Abnormal... go to step two

STEP TWO: bone marrow biopsy plus testing for mutations, CBC
(mast cell researcher, hematologist if you absolutely can't travel)
Normal... MMAS (as long as the CBC is normal)
Abnormal... SM

STEP THREE: RAST plus total IgE
(allergist)
Normal... go to step four
Abnormal... IgE allergies (rule out infections/parasites)

STEP FOUR: antibodies to FceRI, anti-IgE
(allergist... preferably one who's also an immunologist)
Normal... go to step five
Abnormal... autoimmune mast cell disorder (rule asthma, lupus in or out)

STEP FIVE: CBC, CMP, CA-125, Chromogranin-A, CRP, ESR
(GP, immunologist)
Normal... go to step six
Abnormal... can suggest a neoplastic or inflammatory disorder (more testing needed)

STEP SIX: C1q, bone marrow biopsy, mediators (tryptase, histamine, prostaglandins) during flares
(GP, hematologist, immunologist... bone marrow biopsy only by a mast cell researcher)
Normal... idiopathic urticaria, anaphylaxis, and/or angioedema
Abnormal... C1q is for hereditary angioedema (HAE), BMB could still suggest MMAS (based on mutations), elevated mediators on at least two occasions needed for MCAS diagnosis

I hope this is helpful. I was going to make a flow chart with lines and boxes, but it was getting a bit too complicated Wink

Heather

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I can't stress enough how important it is for YOU to take charge of your health care and keep track of all your lab results.  Unless your symptoms are strictly limited to your skin, you're going to be dealing with doctors from different specialties... and that gets COMPLICATED.  The best thing is to keep your labs in a special folder or binder so you can easily pull them out when you see a new doctor.
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Lisa
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Re: Tests to diagnose a mast cell disorder
Reply #1 - 02/03/11 at 01:16:36
 
EXCELLENT ADVICE HEATHER!!!!   TEN STARS FOR YOU!!!**********


The only thing I could add to this is that it's important that you also make a spread sheet of your test results.   Doctors have an easier time if they can see everything at one sitting, and if you can make up an Excel file showing your tests, especially those which are routinely asked for like your CBCs, showing a consistent pattern, this helps them out A LOT!   I've done this with my doctors and they've absolutely LOVED IT!


I'm going to try to post here an example of a spreadsheet I've done for my doctors.  It's especially important to have the CBCs done for they are the window into our health situation.  These exams show how we are doing for masto creates anemia within us and when the doctors can see at one glance the progression of your Complete blood count, then they can tell how you are doing overall.  Having a few of the results off every now and again is okay and normal, but it's either a steady decline or increase and a consistently "off" reading that shows trouble, or readings that are way off the charts without any obvious motive behind it that spells trouble.  So, doing a spreadsheet is good, not only for the doctor, but also for yourself.  

And again, it's important to get every single copy of your exams and tests including CT's and X-rays, etc.  These are YOURS and you are who has the right to keep them!  Don't let some clerical person tell you otherwise - it's your right!  Exercising that right is to your benefit!!

Lisa

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Kim
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Re: Tests to diagnose a mast cell disorder
Reply #2 - 02/03/11 at 17:06:55
 
Lisa;

    I was unable to open your spreadsheet for labs. Any chance you can email this to me directly?  I would love to see your example so I can do something similar for all of Brie's labs.

                                                        Thanks,  Kim
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Lisa
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Re: Tests to diagnose a mast cell disorder
Reply #3 - 02/04/11 at 02:29:44
 
Figures it didn't open!  Sheesh!  I'm so dumb at using this thing!!

Sure no problem Kim!!!! Kiss
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nikweth
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Re: Tests to diagnose a mast cell disorder
Reply #4 - 02/10/11 at 01:42:06
 
Lisa,
I was wondering if you could email the spreadsheet you created. This is brilliant.
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Lisa
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Re: Tests to diagnose a mast cell disorder
Reply #5 - 02/10/11 at 06:38:16
 
PM me with your email and I will.
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Guantai
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Re: Tests to diagnose a mast cell disorder
Reply #6 - 07/29/12 at 15:32:40
 
Thank you all for the information in this thread.  It is very helpful to someone who is new to the concept of mast cell disorders.

I have had a blood test to measure tryptase and histamine levels.  The tryptase was normal, which I understand can be quite common even if mastocytosis or MCAD is present.  My histamine levels were 4.3 (with a reference range of .1 - 1.8).  At the time of the testing, I was feeling quite well and was taking my usual medication which includes allegra, xyzal, singulair, famotidine, astelin nasal spray and QNasal spray and had just finished a course of prednisone for a chest/sinus infection.  Can someone help me put those results in context? Also, would the histamine results be expected to be lower having regard to the antihistamines I was on?  And finally, what is the difference from a diagnostic perspective between the results of a blood test for histamine and a 24 hour urine test?   Lots of questions, I know, but I really appreciate any help anyone can offer.  This is a whole new world for me and I want to be well prepared to have an effective meeting with my allergist at the end of the week.  Thank you so much.
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Re: Tests to diagnose a mast cell disorder
Reply #7 - 07/30/12 at 06:40:49
 
I don't know the answers to most of your questions, but if you don't receive an answer from one of the forum advisors in a couple days, private message me. I can then ask one of my advisors to get in contact with you so that you will have answers before your doc appointment! Sometime we just miss seeing certain posts, and I want to make sure they don't miss yours. Smiley
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Starflower
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Re: Tests to diagnose a mast cell disorder
Reply #8 - 07/30/12 at 09:26:25
 
Guantai wrote on 07/29/12 at 15:32:40:
I have had a blood test to measure tryptase and histamine levels.  The tryptase was normal, which I understand can be quite common even if mastocytosis or MCAD is present.  My histamine levels were 4.3 (with a reference range of .1 - 1.8).  At the time of the testing, I was feeling quite well and was taking my usual medication which includes allegra, xyzal, singulair, famotidine, astelin nasal spray and QNasal spray and had just finished a course of prednisone for a chest/sinus infection.  Can someone help me put those results in context? Also, would the histamine results be expected to be lower having regard to the antihistamines I was on?  And finally, what is the difference from a diagnostic perspective between the results of a blood test for histamine and a 24 hour urine test?  

Hi Guantai,

I don't think I ever welcomed you to the group, so... welcome!

A "normal" tryptase just means that you have a normal number of mast cells.  That's a good thing, but it doesn't rule out a mast cell disorder.  Baseline tryptase is not affected by antihistamines or Singulair.  I'm not sure if there's any major difference between the blood test for histamine and the 24-hour urine test.  According to the new WHO criteria, if you have at least one elevated mast cell mediator (histamine, prostaglandins, carboxypeptidase, etc...) on at least two occasions... plus you have "allergic" symptoms to things you're not technically (IgE) allergic to and respond well to mast cell medications like antihistamines... that indicates that you have a mast cell disorder.  To me, it's a positive sign that your allergist even thought to have your histamine level measured.  Is s/he aware of the new WHO criteria?  You might want to print out this article and take it with:

http://www.jhoonline.org/content/4/1/10/

Antihistamines don't reduce the amount of histamine in your body.  They just block your H1/H2 receptors so you don't get the typical symptoms of having too much histamine.

Heather
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We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
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Guantai
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Re: Tests to diagnose a mast cell disorder
Reply #9 - 07/30/12 at 15:35:30
 
Dear Heather

Thank you for your helpful response and your warm welcome.  I will print out the document and take it with me.

I strongly suspect that there is a mast cell disorder at work here after reading much of the information available.  For a long time I was convinced, based on my symptoms that I had food allergies and yet I test negative for all foods and most other things (other than cats, horses and dust mites) and still have ongoing 'allergic' symptoms including very bad allergic rhinitis even while on the various medications.  In fact, the allergic rhinitis is but one very small part of the various symptoms.  I noticed a significant improvement when I started a low histamine diet about a year ago and again a further improvement with the addition of singulair, allegra and astelin but I still have some symptoms much of the time.  So I think I may fit the new criteria provided they do another blood or urine test and the histamine is high again.  I am cautiously optimistic that my appointment on Friday will lead to some answers or at least to further tests.  I am very pleased that my allergist thought to consider mastocytosis or MCAD and even more pleased that when he received the results, he knew that he needed to consult his mentor before seeing me. No one wants to have either of these medical problems but as you know, just having an answer is a big help.  I recall on one occasion when I went to emerg after a very bad reaction that the elderly physician on call diagnosed me as having 'lethargy' and recommended vitamins!!    Thank you again for your help and I will let you know how it goes on Friday.
Best,
Pat
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FarmerJane
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Re: Tests to diagnose a mast cell disorder
Reply #10 - 08/02/12 at 03:58:25
 
Just wanted to add, in case anyone is just like me.  You can have allergies AND MCAD.  I do!  So did my father.
It is not as common, but it can happen.
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Re: Tests to diagnose a mast cell disorder
Reply #11 - 06/12/13 at 07:35:15
 
Thanks so much for this it is exactly what I was looking for. When I go to the library next I will print it out.  Smiley
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