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Jules

Member Since 15 Jan 2004
Offline Last Active Nov 14 2008 01:50 PM
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Posts I've Made

In Topic: Frustrated - Help Please

22 October 2008 - 03:30 AM

Bonnie - couple of questions...in her G-tube, is she taking an elemental formula like Neocate, or is she given something like Pediasure that contains some whole food proteins that might cause a reaction in some kids? (Just to be clear, pediasure does not contain gluten but does contain milk and soy proteins, which could cause problems for some). Has she been scoped again to see if there is an improvement in her GI tissues?

There are other GI conditions besides Celiac...I understand wanting to know for certain what she has. One of my kids has both Celiac and Eosinophilic Gastroenteritis, a similar condition that does not cause villous atrophy but does cause mast cell degranulation and malabsorption - and it has multiple food triggers (not just gluten).



April

Thanks - She does get Pediasure in her G tube. WE have scoped again and there has been no change. I call today for the results from the one done after 6 month so we shall see and we go to an allergist on Thursday for testing for other things as her dad has food allergies.

In Topic: 18 Month Old Just Tested

21 October 2008 - 12:48 PM

Hi

My daughter was tested for celiac disease several times in her blood work and was negative all 4 times they did it. She did end up havng biopsies done and it shows early warning signs of it.....

Hope this helps. I still question this diagnosis and am waiting for another biopsy to confirm that she is getting better after 6 months of no glutten...

In Topic: Frustrated - Help Please

21 October 2008 - 12:46 PM

Thanks all

She was a good eater and just stopped one day like someone flipped a light switch. That is what bother us most. Our GI thinks like some of you it just hurts to eat so she stopped and she will start when she is ready again. I too worry about her not being hungry while using the feeding tube but the drs do not want to stop it until she eats enough at each meal to support herself. She really does not have many signs of celiac disease at all - only the fussy part and not sleeping well......

I just want my little girl to eat normal again and not be in pain.

Thanks again. I will talk to the drs about the stomach thing you said. Also she is going for food allergy testing on Thursday.

Bonnie

In Topic: How Often To Biopsy?

14 October 2008 - 12:55 PM

My daughter has had 3 since we found out but they have been: 1 to find out, 2 when we put in a feeding tube and again yeasterday when we put in a new type of feeding tube. This has been done since April 2008. My GI said he would probably do it again at 1 year since she is showing no signs of any improvement... The 2 biopsys did not change so am awaiting for 10 days for these results.

In Topic: Frustrated - Help Please

14 October 2008 - 12:41 PM

Thanks all for you advice. It is just so hard to sit by and watch and feel like I cannot do to much to help her. Her GI wants to put her in a behavioral eating program that force feeds and I am not on board with that so we are just going to try to help her as much as possible and see where we go from here as she is gaining weight and growing and looks healthy but it really is thanks to the feeding tube.

Bonnie