What Next?

[cmc811]

Hello!

 

I have a 5 year old son that I believe is showing a lot of celiac signs. I talked to his doctor about it and she ordered a CBC, Metabolic Panel, Tissue Transglutaminase Antibody and IgA, Serum. All were normal. Specifically the Tissue Transglutaminase Antibody was <1 and the IgA Serum was 120 (24-300 is normal).

 

I also am having symptoms so I was tested as well but my doctor only ordered the Tissue Transglutaminase Antibody which was 7 and considered a weak positive (anything over 4 is positive).

 

We both have appointments next week but what should I ask for? Obviously I want to persue more testing for myself since there were antibodies detected, but should I go right for the biopsy or would other bloodwork be beneficial?

 

For my son, I know false negatives are common in young kids but at 5 would he fall into that category? What else, short of going gluten free and seeing if he improves, should I ask for?

 

Thanks!

[NoGlutenCooties]

Just wanted to mention that I don't trust the "weak positive" thing.  When I was tested, the lab that did my bloodwork considered anything 11 and under as negative (different labs have different numbers).  I was a 13.  So I could have been considered a "weak positive".  But when I got my biopsy, I had moderate to severe villi damage.

 

This leads me to believe that positive is positive.  There doesn't seem to be much of a correlation between the actual number and the extent of the damage.

[cmc811]

Just wanted to mention that I don't trust the "weak positive" thing.  When I was tested, the lab that did my bloodwork considered anything 11 and under as negative (different labs have different numbers).  I was a 13.  So I could have been considered a "weak positive".  But when I got my biopsy, I had moderate to severe villi damage.

 

This leads me to believe that positive is positive.  There doesn't seem to be much of a correlation between the actual number and the extent of the damage.

I agree that a weak positive definitely needs to be considered positive and further testing needs to be done, but what specifically should I ask for? Straight to a biopsy?

 

And for my son, should I demand the DGP since it is typically better for kids since his tTG was negative?

[NoGlutenCooties]

I agree that a weak positive definitely needs to be considered positive and further testing needs to be done, but what specifically should I ask for? Straight to a biopsy?

 

And for my son, should I demand the DGP since it is typically better for kids since his tTG was negative?

 

If it were me, I'd request the biopsy - as long as your insurance will pay for it with what the doctor classifies as a "weak positive".  You may want to beef-up your gluten intake for about 2 weeks prior to the biopsy - just to make sure there's plenty of inflammation in there for a firm diagnosis.  If your insurance company won't pay for the biopsy, or if your doctor won't order it for you, you could do the equivalent of a gluten-challenge and eat 2 pieces of bread every day for a couple of months and then redo the bloodwork.  It may be enough to raise it to your doctor's liking for a biopsy.  Depending on how bad gluten affects you, this may or may not be an option for you.

 

I have no experience with kids - and I know things are a bit different with young kids, so hopefully someone else can give you some advice on that front.

[cmc811]

Thanks for your advice. Anyone want to weigh in on what to ask for in regards to my son?