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Mastocytosis

Finally-45

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Finally-45 Contributor
Finally-45
Posted

Quite a few people on this thread have symptoms of mastocytosis or histamine intolerance. Please note the low histamine diet: Open Original Shared Link

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GottaSki Mentor
GottaSki
Posted

Thank you for this informational link...I'm trying to follow along. How were you diagnosed with Mastocytosis?

Finally-45 Contributor
Finally-45
Posted
  • Author

Just the skin test so far....more tests to come.

GottaSki Mentor
GottaSki
Posted

Just the skin test so far....more tests to come.

Hmmm...I haven't had a skin test. Would love to hear your results when you get them...I had such an uphill battle for diagnosis, can't imagine getting a diagnosis with just a skin test. That would be fantastic!

IrishHeart Veteran
IrishHeart
Posted

What kind of mastocytosis do you have? Cutaneous or systemic? (that's pretty rare, isn't it?) 

 

I was told that only a biopsy will render a definitive diagnosis of cutaneous mastocytosis. Perhaps this was wrong....is this not the case? 

 

Open Original Shared Link

 

Thanks for any info you can give. 

Finally-45 Contributor
Finally-45
Posted
  • Author

There is a diagnostic tool online that explains the rules for mastocytosis diagnoses. I had the skin biopsy, however I have symptoms far beyond cutaneous... so I'm still under testing and eval. My diet is outrageously limited due to GI problems and about 40 other symptoms. That's just me though...like I said, remember each person is different. There is light at the end of the tunnel, just don't give up hope in finding your cause.

You can also have an intestinal biopsy done, recommended if you're due for a colonoscopy/endoscopy anyway. The tryptase tests are easy urine/blood tests.

GottaSki Mentor
GottaSki
Posted

There is a diagnostic tool online that explains the rules for mastocytosis diagnoses. I had the skin biopsy, however I have symptoms far beyond cutaneous... so I'm still under testing and eval. My diet is outrageously limited due to GI problems and about 40 other symptoms. That's just me though...like I said, remember each person is different. There is light at the end of the tunnel, just don't give up hope in finding your cause.

You can also have an intestinal biopsy done, recommended if you're due for a colonoscopy/endoscopy anyway. The tryptase tests are easy urine/blood tests.

 

Yep, I'm aware of all those, but since I wasn't tested for Cutaneous Mastocytosis I had forgotten the skin biopsy.

 

My diet is also limited, I don't call it outrageously....I just can't eat anything but meat, veggies and a few fruits for the past three years along with completely gluten-free for five and a half years...it has helped me improve, but I am no where near healthful yet.  H1/H2 and mast cell blockers are also helping, again...not helping as much as we'd like, but can't always get what we want ;) 

 

Since figuring out histamine intolerance and mast cell issues I have been able to add fresh dairy back in, just no aged cheeses!!!

 

I've had all tests run for Mastocytosis and Mast Cell Activation Disorder with the exception of the endoscopic biopsy...I had annual endos while I wasn't improving after celiac diagnosis until changes to our insurance made it prohibitive to have one this past year.  We are very close to our cap so will likely have an endoscopy and some other tests we have put off later this Fall.

 

Did they run a gene test on you too?  Curious if it is positive.  There are many folks like me...all the symptoms of Mastocytosis without the genetic marker. 

 

My celiac doctor is collaborating with several international researchers that are investigating "allergic" type responses in the small intestine...it seems that more and more folks are presenting with histamine and mast cell issues...that or the internet has simply allowed all of us to figure out a root that most doctors are not looking for.

 

Good luck on your testing :)

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