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I recently submitted a question about stomach bloating and scarring of the liver in my 3 yr old son.  We were sent to Duke to see the Metabolic Genetics Doctor for another disease my son may have.  They actually listened to all of my sons symptoms and recommended that we see a Ped GI Dr from Duke.  Apparently, they feel that the diarrhea my son gets from eating to much sugar or fat (such at 4 oz of Koolaide), is all GI related.  The Genetics Dept is running tests on his thyroid, antibody levels (has not been run since his results were negative prior to dx of celiac), pancreas   etc.  This is the first Doctor who has actually listened to me about my son symptoms.  For once, they don't thing that I am over reacting!

My question:  Does anyone see GI doctors at Duke for Celiac Disease?  If so, were they informed and knowledgeable?  In particular, if anyone has seen a Ped GI Dr from there - did they listened to the parents?  

I am asking because Duke is a 3 hour drive from us and if we are going to make that drive, I want to have a doctor who listens to the parents/patients and not tell me that my sons threshold for sugar and fat are because of prior medications for ear infections (my son is rarely on meds). Also, our insurance may not cover the doctors visit because they are out of network and we would have to use the POS part ($300 ded + 50% of everything over the deductible).

UPDATE:
I was able to almost eliminate my sons bloating by removing all artificial sweeteners, removing dairy and giving him a probiotic once a day.  I am also pushing more protien in his diet at every meal.  He is a very big pasta eater.   It took a couple of  weeks, but there is a noticeable difference now!  At bedtime, he no longer looks like his stomach is going to pop!  His liver has also shrunk about 3 cm.  

Thanks for the help and I will summarize.

Lisa Singer


 
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