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Your story is so familar to me.  My son had severe GERD for the first 20 months of his life and it wasn't until I stopped nursing him that docs finally believed me that there was more to the story.  Within a month he lost 3 lbs.  He weighed 19 lbs at 20 months when we took him to CHOP and finally got a diagnosis of  FPIES.  I felt the same way as you just wanting an answer.  We weren't certain if it was FPIES or EE and one doc actually said, "What does it matter, the treatment is the same."  Well, it mattered to me.  He was on a restricted diet while we figured out what food were the culprit.  He couldn't have wheat, milk, soy, beans, oatmeal, or poultry.  He also takes an elemental formula called Pediatric EO28.  There are 3 flavors.  My son wouldn't take the neocate, but he loves this stuff.  Within 6 months he gained 6 lbs!  It was amazing.  He is doing well now.  He still takes the formula and still can't have wheat or poultry, but it's better than it was!  Hang in there and find a doctor who is willing to work with you.  Don't settle for someone who doesn't have your childs interest in hand.  Take care!