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Mastocytosis--anyone Have This Or Heard About It?

Judyin Philly

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Judyin Philly Enthusiast
Judyin Philly
Posted

HI

This can effect the digestive system tho it's not the main issue with this.

Has something to do with Mast cells??? :blink::(

Good grief, more things to concider..and still no answers...

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ravenwoodglass Mentor
ravenwoodglass
Posted

Mastocytosis, I had never heard of this either. The links are interesting reading especially for folks who may not have had complete resolution of problems gluten-free. I wonder which genes this is associated with they mention finding them but not the ones they are. Curiosity will most likely make me look further. I am wondering if that reaction could cause a thickening of the intestinal wall and swelling. That was found on my last CT and is something that has been with me since my diverticullitis attack. Thanks for posting this, if nothing else it is interesting reading.

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Judyin Philly Enthusiast
Judyin Philly
Posted
  • Author

OMG DID YOU STEAL MY CAT :lol:

WHAT A RIOT. THEY LOOK SO MUCH ALIKE

OK THE FIRST LINK IS THE ONE ROBBIN (GLUELESS) SENT ME.

TOOK TO GI YESTERDAY.

HERE ARE THE THINGS IN THE ARTICLE THAT FIT ME

Possible symptoms of mastocytosis

Red, itchy rash

Rash that looks like freckles

Hives

One large lump on the skin

Diarrhea

Stomach pain Fainting

Difficulty breathing

SHE HAD JUST BEEN TO A CONFERENCE ON THIS CONDITION.

SHE JUST SMILED AND SAID' ...LOOK AT THIS SENTENCE' WHEN I ASKED HER TO TO THE BLOOD WORK FOR IT.

IT SAID...'ELLIMINATE ALL FOODS, TRIGGERS, SO BACK TO SQUARE ONE.

WHAT ARE THEY???????????????????????????

GOTTA LOVE IT

OFF TO READ THE SECOND ONE.

ALSO SINCE I HAVE FIBROUS DYSPLAISA OF THE BONE AND MULTIPLE TUMORS ALL OVER MY BODY LINKED TO PUB MED AND FOUND SOME LINKS TO BONE DISORDERS..

INTERESTING.

THANKS FOR CARING

JUDY

gluless Newbie
gluless
Posted
Mastocytosis, I had never heard of this either. The links are interesting reading especially for folks who may not have had complete resolution of problems gluten-free. I wonder which genes this is associated with they mention finding them but not the ones they are. Curiosity will most likely make me look further. I am wondering if that reaction could cause a thickening of the intestinal wall and swelling. That was found on my last CT and is something that has been with me since my diverticullitis attack. Thanks for posting this, if nothing else it is interesting reading.

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Open Original Shared Link

I read that first link when I stumbled on this by accident, BUT the second one with the reference to "orphan diseases" made me take notice. There is a doctor at Cleveland Clinic who specializes in "orphan diseases" ---I forget his name--starts with a W, I think. I am wondering if maybe your next course of action would be to try to get to see him. Ask your primary doc if he can refer you and find out who this doctor is. I read an article about him a few years ago and he is a life saver for a lot of people, from what I read.

I hope to God this helps you and others who are still suffering. Hugssss.

Judyin Philly Enthusiast
Judyin Philly
Posted
  • Author

THANKS TO BOTH OF YOU

YOU KNOW ROBBIN, THIS MAZABRAUD SYNDROME I HAVE IS A ORPHAN DISEASE..

WILL SEE IF IT'S ON THE LIST..I KNOW MC CLUNE ALBRIGHT JUST GOT ON THE LIST BUT THIS NEW ONE NOT SURE OF.

THERE WERE ONLY 80 DOCUMENTATED MEDICAL JOURANAL PUBLICATIONS WHEN I WAS SEARCHING FOR MY DOC WHEN I WAS WORKING IN 1999.

TAKING A BREAK FROM RESEARCH TODAY.

BUT HOPE MAYBE SOME OTHERS WILL SEE THIS AND KNOW ABOUT IT.

HUGS

JUDY

PS.. WE WANTED A LADIES 'GET-A-WAY' BUT DIDN'T HAVE THE CLEVELAND CLINIC IN MIND :lol:

WANTA COME WITH ME :lol:

Judyin Philly Enthusiast
Judyin Philly
Posted
  • Author
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found this in this article.

Mast cells seem to have other roles as well. Found to gather around wounds, they may play a part in wound healing. For example, the typical itching you feel around a healing scab may be caused by histamine released by mast cells. Researchers also think mast cells may have a role in the growth of blood vessels

Maybe this can be why this area where the heating pad burned me and hasn't really had the lymph system heal...could be the reason listed here.

wow amazing to me.

Judy

blueeyedmanda Community Regular
blueeyedmanda
Posted

I have never heard of this either but I am going to look up on it. Sounds different.

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