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Update And More Questions

Momof2xy&2xx

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Momof2xy&2xx Newbie
Momof2xy&2xx
Posted

Hey again ladies! We saw the German peds GI today - here is our update:

1: The german GI dude is AWESOME. His English is great (we knew that though - another of our friends sees him), and he was laughing and joking with us. He spent more than an hour with us.

2: He agrees that obviously SOMETHING is going on. The specific things that are concerning:

a: she isn't growing

b: she has some lab values that are not normal - her liver enzymes, and alk phos is elevated, and there is fat in her stool. her total protei was low, creatinine was so low it wasn't even detectable, and her glucose was 75 about 45 minutes after burger king (um, yeah - he thought it was a fasting value at first).

c: Her stools are abnormal (extremely smelly and large, roughly the consistency of a cowpie)

3: he did an abdominal ultrasound in the office today, and all of her organs look good, and there is no obvious infection present

4: he has a game plan (finally!). first, he is having us go lactose free this week , just in case this is a lactose intolerance issue (possible, but not necessarily probable, though it is an easy fix so we're trying that first). This means I have to wean *now* - I suppose it isn't weaning if you stop cold turkey, but.... after that, he is going to check her for a milk/soy protein allergy, as that can sometimes cause the kinds of issues she's had. he's also going to recheck some of her labs (including a fasting glucose) and order the genetic testing for celiac. since she is IGA deficient, the original test they ran isn't going to tell us anything (it came back negative, but was an IGA test apparently?). if all of that leads us nowhere, she will be having an endoscopy to try to figure out what is going on. we go again next friday, after the week's trial of lactose free. he said that once we get this figured out, she should grow normally and catch up an be normal size! YAY!

SO, on to the questions: what does it mean that she is IGA deficient? Does the whole "she's IGA deficient so the IGA testing for celiac isn't going to tell us anything" make sense?

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Roda Rising Star
Roda
Posted

Yep the total Iga validates the testing. Why not ask the doctor to the Igg versions before you start gluten free?

Momof2xy&2xx Newbie
Momof2xy&2xx
Posted
  • Author

She is not currently gluten free - right now, the doc wants her *lactose* free, to rule lactose issues out. The doc mentioned the IGG test, but said it wasn't very good, so wants to do a genetic test instead, and then a scope.

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