Positive Igg and HLA for 6 year old- next steps? Endoscopy?

[ajduerr]

My 6 year old daughter has had heartburn off and on for 3 years.  She goes through phases with it where she is fine or she's throwing up and doubled over in pain and complaining of heartburn daily, to the point of not eating meals.  My sister's dr has given her an unofficial diagnosis of Celiac (when off gluten, she's fine, when on it, has all kinds of symptoms). 

2 years ago my daughter had TTG Iga and Igg tests.  The Igg came back positive (10, with normal being below 6, weak positive at 6-9 and 10 and up positive).  A couple weeks ago, she had another panel, the Iga was negative (didn't do Igg again, not sure why) and one HLA came back positive.  Having read through internet material, I understand the next step could be an endoscopy.  Would you put a child through the process, or just assume she has it and go gluten free.  What are the pros and cons to either way?  We have a GI appt next month.

TIA!

[StephanieL]

I would 100% do the scope.  You have slides to 1) confirm and 2) compare incase the gluten-free diet doesn't seem to be working.  It's not fun for Mama but it really is best to have all the info!

[mommida]

To go for a Celiac diagnoses she has to eat gluten. 

If she is still having problems, like a gluten reaction when she hasn't had gluten that you are aware of- get the endoscopy.  She may have another disease/ disorder that may have a connection to Celiac.  H. Ployri., congenital defect, hernia, parasitic infection, and Eosinophilic Esophagitus all have similar symptoms in pediatric patients.

My daughter was diagnosed with "probable" Celiac with some positives on the Celiac panel and positive for 2 Celiac genes when she was about 17 months old without the endoscopy.  (She was too ill to have the endoscopy after eating gluten for 2 weeks for the blood panel.  She was hospitalized for dehydration,)  Things went so much better on a gluten free diet for years, but she would just get a lot sicker than most kids.  Her symptoms seemed like she had ingested gluten, but got much worse.  When she was 6 (right after Halloween) she just started vomiting on a daily basis like severe GERD acid reflux.  She went in for a endoscopy and was diagnosed with Eosinophilic Esophagitus.

Stupid, stupid, stupid ped gastro Undiagnosed  the Celiac diagnoses at that time because there was no damage in her intestine -she had not eaten gluten for 5 years!  So you better have a great doctor to work with and know what results to expect from current diet.