DownSyn Forum

Mya's Mom · Posted: August 24 2010, 7:20 PM Post subject: Biopsy for Celiac

After weeks of struggling with iron deficiency, and getting weekly iron transfusions...we think we found the cause...Celiac. The GI doc said normal levels are less than 4, and her's were over 100. I prepared myself for the diagnosis, and although it sounds difficult and expensive! I'm actually relived to have a diagnosis that we can treat. I'm really nervous about the biopsy though. Mya has been under anethesia twice, but has not had concious sedation. (I think this is what they call light sedation) It will be done at Arnold Palmer children's hopital in Orlando, so I know she's in good hands, but I'm still very nervous about it. Part of me wants to just skip the biopsy and do the diet, but the dr. thinks we should get a look at how bad things are. Just wondering what others' experiences have been?

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Emily
mom to Mya, 5 years old (3/16/06)

Momof6 · Posted: August 25 2010, 1:19 PM Post subject:

I have no advice, but just wanted to wish her luck with the biopsy. How do they do the biopsy? Austin has had the ones for Hirschsprungs. I wonder if it's kind of the same?

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~Christine~
Mom of 6
Brandon ADD/ADHD 19, Chelsea 16, Connor 14, Logan 9, Cody 6 & Austin 4 ( DS & Hirschsprungs pull through 12/8/08 ) diagnosis 10/28/10 Colonic Neuropathy, 12/16/11 dx with seizure disorder, neurogentic bladder...Monti Cath 11/9/12
http://www.caringbridge.org/visit/austinpaquin

I think I can, I think I can.
Climb the highest hills in all the land.
(If you think you can, you can.)
He could and he did !

I say CHEESE !

Mya's Mom · Posted: August 25 2010, 1:59 PM Post subject:

Thanks Chrstine:) They said they put a tiny camera down her throat to the intestine, and they take a "bread crumb" size piece of it.

_________________
Emily
mom to Mya, 5 years old (3/16/06)

TheBradyBunch · Posted: August 25 2010, 2:02 PM Post subject:

I skipped the biopsy and just changed the diet...he was only 15lbs at 2 1/2 so waiting on a waitlist wasn't something I was prepared to do.

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Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

Momof6 · Posted: August 25 2010, 2:17 PM Post subject:

Mya's Mom wrote:

Thanks Chrstine:) They said they put a tiny camera down her throat to the intestine, and they take a "bread crumb" size piece of it.

Nope, not the same...Austin's was done from the other end. Confused

_________________
~Christine~
Mom of 6
Brandon ADD/ADHD 19, Chelsea 16, Connor 14, Logan 9, Cody 6 & Austin 4 ( DS & Hirschsprungs pull through 12/8/08 ) diagnosis 10/28/10 Colonic Neuropathy, 12/16/11 dx with seizure disorder, neurogentic bladder...Monti Cath 11/9/12
http://www.caringbridge.org/visit/austinpaquin

I think I can, I think I can.
Climb the highest hills in all the land.
(If you think you can, you can.)
He could and he did !

I say CHEESE !

momofrussell · Posted: August 25 2010, 7:31 PM Post subject:

Good luck! Glad you are getting some answers and it is fixable!

A.

_________________
Adrienne - mom to: Regan 17, Russell 12 DS, Autism, Visually Impaired, Reece 10.

DSAGSL 2009 Buddy Walk

KatieB · Posted: September 20 2010, 10:31 AM Post subject:

My son was diagnosed at the age of 3 with celiac, and is now 8 yrs. At first, my head was spinning hearing this about our son, it's not that hard of a diet to adhere to, just learn labels, what is gluten, etc. There maybe even a Celiac support group at your hospital in Orlando.
Katie