Mastocytosis

Dee · Post by **Dee** » Tue Apr 07, 2009 3:48 pm

After describing my symptoms of hives and the correlation of them also starting at the very same time. as the upper abdominal discomfort, my GI stated he wanted to order some more tests.
I looked at him & said those wouldn't be to check for mast cells & histamine levels, would they??
Now, He is foreign so he does speak with an accent.
He looked at me, with kind of a shocked look, and said, How do you know about theeeeese????
I'm awful at keeping a straight face when something tickles me!!!!!!!!!! I just looked at him and replied, I know a heck of alot more than you'd ever give me credit for!!!!
Anyway, he proceeded to tell me that for as long as he has been in practice, he has had only 1 case of a female patient that had Mastocytosis and her symptom was only the abdominal discomfort. No hives.
Oh! Forgot to tell you that I also addressed the issue of the botched info of one of his employees..
When he told me that my endoscopy was fine, I replied with, soooo, I don't have colon polyps then, and I don't have diverticulitis??????? He said, in his foreign talk, where deed you geet that information??
So, I told him who and how disapponited I was and I think someone's status needs to be reevaluated...
Not good for business!!!!!!!

Post by **tex** » Tue Apr 07, 2009 4:52 pm

Now that sounds mighty encouraging. This guy may know what he's doing.

Love,
Tex

faithberry · Post by **faithberry** » Thu Apr 09, 2009 11:53 am

Dee,

This guy is really on the ball! Mastocytosis is so rare most doctors dont' even know about it. It's very unlikely that this is your problem, but good not to leave any stone unturned. One of the best markers for mastocytosis is total serum tryptase, so I hope he does that one for you!

Just to let you know, the list of mastocytosis symptoms I have in my journal are only my symptoms. The full list is longer and can be found here:

www.tmsforacure.org/oldsite/patientinfo.shtml

This is the old site. The new site is woefully incomplete and in process. There's also mast cell activation syndrome, which is not even a real medical entity as of yet, and it is also described here.

People with hives also get stomach issues so your problems could just be part of urticaria.Histamine and its mediator friends know no bounds.

I'm so glad your doctor is being so thorough!

Rose · Post by **Rose** » Thu Apr 09, 2009 1:54 pm

Dee,

I love your impersonation of your GI and am glad that he is so on the ball. My Rheumatologist is either Russian or Chez and is so hard to understand so I have to really, really pay attention to what he says and repeat everything back to him just to make sure that I am really hearing what he is saying.

Love,

Rose

angy · Post by **angy** » Thu Apr 09, 2009 2:08 pm

good for u dee...id love to have seen his face...lol

faithberry · Post by **faithberry** » Fri Apr 10, 2009 5:05 am

Dee, I'm curious why you doctor didn't suggest that you might have chronic urticaria (in which there is sometimes abdominal issues) and jumped to mastocytosis. It definitely is good to rule masto out or in, but just curious if he even mentioned chronic urticaria.

BTW, here's the link for the new Mastocytosis Society website. Probably not need to go there now, since this dx is so unlikely. You probably want to see what your labs say first. When will you get them back?

www.tmsforacure.org/

Like I said it's very incomplete, but it does have a link to the old site on the home page which has tons of info.

Here's their yahoo group:
health.groups.yahoo.com/group/OnlineTMSSupport/

Dee · Post by **Dee** » Thu Apr 16, 2009 3:11 pm

Just received a call from my GI's secretary.
From the additional tests that I've had since the CBC & scope,
the 24 hour urine test found nothing & the C1 esterase inhibitor blood test was normal.
Haven't received the results from the abdominal ultrasound yet.
Still trying to find that puzzle piece... SIGH!!!

Love
Dee~~~

faithberry · Post by **faithberry** » Fri Apr 17, 2009 11:43 am

Hi Dee,

You wrote:

The 24 hour urine test found nothing & the C1 esterase inhibitor blood test was normal.

People with Mastocytosis or Mast Cell Activation Disorder (the latter not yet a defined medical disease, but term coined by Dr. Marianna Castell's in Boston.) often have normal 24-hour histamine metabolite test results. Assuming he was doing a 24-hour histamine metabolite test. A normal test result doesn't rule out Masto or Mast Cell Activation. I looked up the C1 esterase inhibitor test and it's an indicator for hereditary angioedema. Doesn't look like it's a test for masto.

Looks like he did not test for serum tryptase, the best non-invasive marker for masto. It's not always positive for masto, but it's one of the best indicators.
It would be a very good thing for you not to have masto! I truly hope it's the case. However, I wouldn't rely on these results as a definitive no. It's not easy to diagnosis masto, and the serum tryptase is just a first step.

Maybe you have Chronic Urticaria? Or maybe there's another piece to the puzzle! Good luck.