Positive Blood Work, Negative Biopsy in 4 year old?

[SLPRunner]

My almost 4 year old son had positive TTG IGG/IGA, and DGP IGA antibodies on his blood work.  Endoscopy revealed some 'mild scalloping to the small intestines.'  However, the endoscopy came back negative.  Has anyone experienced results like this?  We are going to repeat the bloodwork in 6 months and go from there.  However, we trialed our son on a gluten free diet after the endoscopy to see if it would help his constipation and it seemed to improve his stools.  But I know in order to get a correct diagnosis he would need to be on gluten.  We are thinking of limiting his gluten consumption but not totally eliminate it.  Like no bagels or bread, but treats at a party okay, don't worry about cross contamination.  Has anyone been in this situation and had the diagnosis change over time?  

[cyclinglady]

19 hours ago, SLPRunner said:

My almost 4 year old son had positive TTG IGG/IGA, and DGP IGA antibodies on his blood work.  Endoscopy revealed some 'mild scalloping to the small intestines.'  However, the endoscopy came back negative.  Has anyone experienced results like this?  We are going to repeat the bloodwork in 6 months and go from there.  However, we trialed our son on a gluten free diet after the endoscopy to see if it would help his constipation and it seemed to improve his stools.  But I know in order to get a correct diagnosis he would need to be on gluten.  We are thinking of limiting his gluten consumption but not totally eliminate it.  Like no bagels or bread, but treats at a party okay, don't worry about cross contamination.  Has anyone been in this situation and had the diagnosis change over time?  

Welcome!

Your son may just have some early damage.   The surface area of the small intestine is larger than a tennis court!  Did you get a copy of the pathologist’s report?  Your GI may have missed damaged areas, especially if he only took less than four tissue samples.  

If he has celiac disease, just limiting his gluten consumption is not going to stop the autoimmune process.  The cure is no gluten at all!  So either you are on it or not. 

Please consider getting all the reports and get a second medical opinion.  

[SLPRunner]

Thank you.  Yes we do have all reports.  Including pictures from the procedure.  They were given to us at the time of the procedure.  And I received a copy of the biopsy results at our follow up appointment a week later.  Also have blood work as well.  They did take 4 samples from the dudodeum bulb.  Doc said after procedure to be prepared for an inconclusive report, but he was surprised that it was totally negative.   The doctor said that biopsy is standard for diagnosis so they can't diagnosis now.  He suggested following up in 6 months with repeat blood work and see if numbers change.  However, he said a new endoscopy would probably be necessary in future.  

I guess I'm wondering if anyone went through similar situation and came out with a positive biopsy in future and diagnosis.  

[cyclinglady]

Start browsing through the children’s section of the forum.  Not one lately has presented with comparable diagnostic issues like your son, but past members probably have.  

How positive were his blood tests?  Some doctors will diagnose based on that and the genetic test , especially if they are very high.  Some will have you trial the diet and check to see if those very elevated antibodies go down in six months.  

I think your GI is being very cautious.  No one wants to diagnose a small child with a life long illness if he does have solid results to back up the diagnosis.  

Keep on  researching!