countrygal Posted April 12, 2014 Share Posted April 12, 2014 I'm going to keep this short. DD6 had a biopsy of her small intestine and has deficient digestive enzymes (all except lactase, which was borderline normal.) She 'apparently' is not celiac, so what else causes this? Google is not helping! (I think it's celiac personally.) Her GI (who I'm not happy with!!) said she doesn't know what causes it and gave me a FODMAP diet for her to follow saying it'll probably help her 'feel better.' I'm going to call her back Monday with a TON of questions and DD's regular ped. is going to refer her to a bigger facility if this GI doesn't know why her enzymes are this way (she is not growing or eating well at all.) I'm just too antsy to wait and y'all are so smart I'm sure someone has answers :) Thanks. Quote Link to comment Share on other sites More sharing options...
Mrs Mungo Posted April 12, 2014 Share Posted April 12, 2014 Cystic Fibrosis can cause it, that is probably the most common thing in kids. Have they done a sweat test? Quote Link to comment Share on other sites More sharing options...
kbutton Posted April 12, 2014 Share Posted April 12, 2014 Assuming some other testing (like the CF stuff) isn't in order or comes back okay... Celiac testing isn't that reliable. Digestive enzyme supplements are inexpensive, and I'm told, effective. I believe certain foods help with enzymes as well (pineapple comes to mind). If you want to do a gluten free trial and have had the bloodwork for celiac done, I think you've done your due diligence for the experts and are free to try it. Quote Link to comment Share on other sites More sharing options...
BlueTaelon Posted April 12, 2014 Share Posted April 12, 2014 Do you mean exocrine pancreatic insufficiency? Its treated with Creon, which is high dose digestive enzymes. You take one before every meal, not a major thing imo but eating makes you miserable without them. Fwiw I have it, dr believes it was caused by them taking 24yrs to dx my celiac which damaged my pancreas. You start feeling a whole lot better about 2 weeks after starting the creon but I still have to take vitamin supps. It has nothing to do with the fodmap diet. Quote Link to comment Share on other sites More sharing options...
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