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My 7 month old baby has refused formula pretty much since birth. We  
have been feeding her through a tube for about 4 months.

Very LONG story short...she has been hospitalized twice, the first was  
for 8 days and the second was for 4 days. She has had every test  
imaginable and seen countless specialists. All tests and evaluations  
have come up normal (thank goodness!). She is completely healthy and  
developing fine.

We truly believe that she does not feel hunger...that there is some  
wiring error in her brain that does not allow her stomach and brain to  
communicate properly. She has been formula fed since birth (I take  
medication that is not compatible with breast feeding).

We have some very bright doctors at UCLA and Children's Hospital of  
Orange County just shrugging their shoulders and saying that they have  
NEVER seen anything like this.

We have tried not using the tube to see what she does and she will eat  
1-3 ounces from the bottle for the whole day and be perfectly happy  
and content. She doesn't cry or get upset...she doesn't wake at night  
and I usually have to go in and wake her in the morning. If left  
alone, she would wither and die, and smile and laugh while it was  
happening.

It is the strangest thing anyone has ever seen. We cannot find any  
case online that is similar. All of her doctors are baffled by  
her...she truly does not get hungry!

My question is: Has anyone seen anything like this as a "pre-celiac"  
situation? Has anyone had an infant (meaning before solid food is  
introduced) who exhibited similar symptoms? (Not a toddler...an infant)
Does anyone have any idea where we should go from here? I truly  
believe she will be a celiac (she tested positive for the DQ gene) so  
I will not be giving her any gluten any time soon. BTW: I'm the celiac  
in the family.

If there are any doctors on this forum...do you have any ideas?

We are growing desperate!!!

Thanks,

Stephanie

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