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Thanks so much to everyone who responded.  I received about 25 responses regarding the big tummy issue.  I received several emails from parents with small children who have the exact same problem!  I also received a few from people who had been diagnosed many years ago and still have a distended abdomen.  Here are some of the suggestions I received:

keep a food diary and note symptoms
9 suggested lactose intolerance
1 thought it could be malnourishment
2 suggested casein intolerance
2 mentioned soy allergies or other food allergies
possibly a bacterial imbalance, and suggested trying probiotics such as kefir or Helios
1 found out through Dr. Fine's testing that they also were  intolerant to Yeast
2 thought maybe she was getting gluten.  
1 thought maybe constipation
1 advised that if the doctor is not concerned, don't be too worried about it. 

Also, many thought it would take at least 6 months if not 1-2 years for complete recovery/normal looking tummy.  

Again, thanks everyone who responded.  I am trying the lactose free thing for a while and we'll see what happens. My doctor's only other suggestion was to eliminate all fruit & fruit juice for a while and see if that makes any difference.  He felt that IF that IS what is causing it, she doesn't need to permanently abstain from fruit, but at least I would know that's what was causing the bloating. 

* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *