Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 Maureen, What is refractory sprue? At this point everyone is not in a hurry to do much more in the way of testing. They all tell me that we will wait and wait. But all the while she is still on a plateau on her weight and I just want to make sure we are not overlooking something. _._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 Maureen, What is refractory sprue? At this point everyone is not in a hurry to do much more in the way of testing. They all tell me that we will wait and wait. But all the while she is still on a plateau on her weight and I just want to make sure we are not overlooking something. _._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 Maureen, What is refractory sprue? At this point everyone is not in a hurry to do much more in the way of testing. They all tell me that we will wait and wait. But all the while she is still on a plateau on her weight and I just want to make sure we are not overlooking something. _._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 I am *not* an expert, but I'll tell you what I know from hearing experts speak. " Refractory sprue " is a type of celiac that does not improve with just a GF diet and needs further intervention. Exactly what that is, I'm not sure. I think I remember hearing that sometimes steroids are used to treat it. Recently I heard Dr. Grey (Stanford Celiac Clinic) speak about malabsorption, and how underrecognized it is even though it is fairly prevalent in celiacs, even by celiac aware doctors. There are tests for it that can measure how much of what goes in comes out undigested/unabsorbed (poop tests!). Fat is frequently malabsorbed, as a certain vitamins and iron (my son's case) - these things can effect growth. To try to compensate for my son's malabsorption, we've learned to make every calorie count - his breakfast is usually homemade pancakes or waffles that we've fortified (we do big batches on the weekend and freeze) then we add nut butter or maybe ham/sausage with it and Pediasure. Lunches and dinners we also try to cram in the nutrition. Plus he gets iron twice a day, vitamins, probiotics, and allergy meds - poor kid gets about 9 pills a day! Maureen > > Maureen, > > What is refractory sprue? At this point everyone is not in a hurry to do > much more in the way of testing. They all tell me that we will wait and > wait. But all the while she is still on a plateau on her weight and I just > want to make sure we are not overlooking something. > > > _._,___ > Quote Link to comment Share on other sites More sharing options...
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