Second Biospy Negative :/ At A Loss!

[mmcc54]

My Daughters second biopsy was negative! My self and her peditrictian don't understand how shes getting such high igg blood levels but neg biopsy :/ her GI doctor told us yesterday she has no evidence of celiacs and she can eat gluten! That she needed to be tested for other automimmune disorders?!? Her pedi said he would do some research and figre out the next step...whatever that means! Gah so aggravating I don't know what to think or do! Her igg was greater then 100...anyone have any ideas whats in store as far as more testing

[kareng]

Tell the ped to contact the univ of Chicago celiac Center. They have an email on the site? Or call.the head is a ped GI. Let him fax them your info to look at. I think they would help.

[nvsmom]

All I can say is, it happens.  There are a bunch of people on this board alone who are positive in one test and not in another when it comes to celiac disease. It hits everyone different with different test results and different symptoms. Some have nerves affected, some have skin affected, some have growth affected, some have intestines badly damaged and some don't...It's just the way it is.

 

Have her go gluten-free. It can't hurt except for the extra hassle it will cause you in food preparation. Gluten isn't good for anyone. It's just a food of convenience with a tasty texture. She's so young now that if you switched her over now, she'll never develop a taste for it. Make her gluten-free now. Keep a journal of food and symptoms. By all means keep looking into other causes, like the high TSH, but treat her for the positive tests that she's had.... The doctors don't know everything - in my experience they are correct barely half of the time.

 

Best wishes.