Elevated blood-work, negative biopsy for Celiac DX bile reflux

[FrostyJeep1]

DD (age 16) has been having issues gradually of vomiting all of the food she has eaten for the day at the end of the day and getting severe stomach pains after eating.  It started a few years back once a week - 10 days, she never really mentioned anything until now since it was happening at least 3-4x a week after a severe case of mono. She thought is was after eating meat, gave that up and dairy and it wasn't better. We went to her pediatrician who ordered a blood-work for food allergies and other issues, blood work came back slightly elevated for Celiac. Went to a GI who do an endoscopy, 2 weeks ago, it showed bile reflux, acid reflux and possible Barrett's esophagus, he took biopsies for the bile and esophagus and of the small intestine . When asked if he saw anything for Celiac, he said he didn't think she had it, gave her a bunch of reflux medicine and told her they do not know why bile reflux happens, meds for life and scheduled a follow up to go over the biospy results. The reflux medicine is nasty, she has to mix a gross powder 2x a day and she hasn't been able to stomach it so she hasn't been great about taking it consistently. 

DD decides to try and be gluten free during the waiting period for the biospy results. For the first time in a year and a half she has not thrown up after eating normal size meals with meat and dairy at the end of the day, her anxiety is slightly better and she hasn't had stomach pain. 

So here are my question, can someone have a negative biopsy but an elevated blood panel and not have celiac? Could the bile reflux be caused by something else and being gluten-free and feeling better is just a coincidence? Can you have bile reflux and celiac?

Are there questions I should ask the GI doc on Thursday when we go in for the test results if it comes back negative on the biospy for Celiac?

[GFinDC]

Hi,

Welcome to the forum!

Celiac testing is crappy, to be blunt.  They just don't have perfect tests for it right now.  Even the best tests, DGP IgA and DPG IgG have an error possibilty.  Plus all bodies are not equal and can have varying levels of antibodies and damage.  There is a small percentage of celiacs that don't produce IgA antibodies at all.  So the IgA tests are useless for them.

The endoscopy is not perfect either.  The small intestine is about 22 feet long and they can only reach a few feet of the beginning part.  So what if the damage is right around the corner they can't reach?

The upchucking is probably caused by gastroparesis.  Inability of the stomach to pass food on to the gut for digestion.  Gastroparesis is a symptom in celiac disease.  Actually, there are several hundred symptoms possible with celiac disease.  Since it can affect any part of the body and does when malabsorption occurs.

Not eating gluten should not make a change to a non-celiac person's body.  So her improving after going gluten-free means she probably has celiac disease or NCGS (non-celiac gluten sensitivity).

I had gastroparesis last week from eating something and upchucked my food.  I used to have it regularly before going gluten-free.  Some things that might help her are peppermint Altoids and Pepto Bismol.

[cyclinglady]

I agree with GFinDC!  My endoscopy revealed nothing, but my biopsies showed significant damage.  Let’s hope he took enough samples in the small intestine.  

I would seek another opinion if the pathologist’s report does not find celiac disease.  Something is wrong!  My niece had celiac disease firmly ruled out.  Her 4th GI ordered a pill camera.  It caught her Crohn’s Disease located beyond the reach of both scopes and countless other tests.  She did not present with standard Crohn’s symptoms either.

Not saying your DD has Crohn’s, but again, something is wrong.   Keep advocating for her health!