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Best diagnostic test, least invasive (Read 5069 times)
Tassal
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Best diagnostic test, least invasive
07/07/11 at 00:51:17
 
Hi! I'm happy to be a part of this group. My son is six and we suspect that he has mast cell disorder. He is autistic spectrum and cannot verbally communicate. Two weeks ago he had an endoscopy and a bleeding stomach ulcer was found. He has had gastric pain associated with eating since he was six days old. I am looking for the easiest way to determine if he has a mast cell disorder. I cannot put him through another endoscopy so I'm hoping for a blood or urine test to guide us. I've heard that a 24 hour urine collection can show histamine metabolites but not sure who runs this test? I've been googling like crazy trying to find testing but have not figured it out yet. We are in new jersey. If my son shows signs of mast cell disease we will take him to a mast cell doctor but with all of his medical issues already I wanted to try to get as much information as possible before traveling to see doctors. Thanks for any guidance. Regards, julue
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Starflower
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Re: Best diagnostic test, least invasive
Reply #1 - 07/07/11 at 04:57:30
 
Hi Julue,

Welcome to the group!  

The first test I would actually recommend for your son is a blood test for tryptase.  Any GP can order it.  If that's elevated then there's a good chance your son has systemic mastocytosis.  Many doctors will tell you that you can't have it if you don't have "spots" (urticaria pigmentosa) or that it's just "too rare"... BS!  Don't listen to people like that.  Even if your son's tryptase is normal he could still have a mast cell disorder.  Any doctor can order a 24-hour urine test for histamine and prostaglandins... it sounds like an exotic test, but it's not.

BTW... Dr. Theoharides is doing research on both mast cell disorders and autism.  He would be an excellent person for you to contact.  The last I knew he was at Tufts University.

Heather
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Patricia
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Re: Best diagnostic test, least invasive
Reply #2 - 07/07/11 at 15:03:29
 
Yes! Contact Dr Theoharides, I believe his email is on his website mastcellmaster.com...his passions are mast cells and autism, he's also a genius. He developed a supplement neuroprotek for people with autism and it's a natural mast cell stabilizer;  my husband has been taking it for a couple months and we've found it helpful his with cognitive issues, brain fog, mood swings.

I just read a very good book by Dr Michael Goldberg called the Autism Myth and it was written in a way that a layman could easily understand, like myself. It talks about the whole gut-blood-brain barrier, neuroinflmaitory disease and I thought it did a good job of explaining the immune system, diet ect.

Has he ever seen an allergist/immunologist? They could run any of those blood and urine tests mentioned before and it's the least invasive.

I hope you get some answers and that he feels better soon!
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Patricia
 
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Lisa
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Re: Best diagnostic test, least invasive
Reply #3 - 07/07/11 at 17:37:48
 
YES!!  Contact Dr. Theoharides by all means and the sooner the better, Julue because the kids who don't have the typical skin lesions are often much harder to diagnose than some of us adults because 1. they fall outside of the vast majority of the children with masto for the vast majority of them have spots.  2. the may not be showing elevated histamine or tryptase levels and with this their doctors won't recognize it as masto.  and 3. Dr. Theoharides has as a special interest studying these kids with autism and if anyone is going to be able to help your son and find out if he's got a mast cell disorder, IT IS HIM!  

So, please consider contacting Dr. Theoharides by email this weekend.  Send him a note telling him what your son is showing and what is going on with your doctors, etc and see what he says!  I'm sure he'll reply to you!

I hope this helps

Lisa

ps -  Welcome to our home!

Smiley
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Donīt forget, there is so much more to life than being sick!
 
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