Confused.. Could use your help.

[emily18]

Hello, hoping someone can help because at this point the doctors are not helping make me understand. My son has taken 5 Celiac Screen's over the past two years (he's now 12), in each and every one the "Transglutaminase_IgA" is normal range but the CELIAC SCREEN" is always positive (ranging from as high as 300 to as low as 50... the highest normal range is 24). Well the Dr's and the Gastro Dr don't have an explanation. They said without both being positive its not Celiac, so what is it and why is the screen so high? I will say he doesn't complain of symptoms but then again hardly eats (always been that way). Any ideas, suggestions would be great! Thanks!

[cyclinglady]

Welcome!  

I do not understand what you mean by "Celiac Screen".  I think it means the following:

TTG IgA and an IgA Total Serum deficiency test

That is a typical screening test for celiac disease and it is very sensitive.  The deficiency test used with the TTG IgA lets the doctor know if the TTG is working (control test).  This screening is the least expensive.  It is not the entire celiac panel which consists of:

TTG (Tissue Transglutaminase) IgA and IgG

DGP (Deamidated Gliadin Peptide) IgA and IgG

EMA

If one just one is positive an endoscopy is ordered to obtain four to six biopsies. 

Now, let me tell you my personal experience.  My GI ordered a the entire celiac panel.  I ONLY tested positive on the DGP IgA.  My biopsies revealed a Marsh Stage IIIB which is moderate to severe damage.  My symptom at the time of my diagnosis was anemia.  I had no tummy issues that were plaguing me.  I have been re-tested after a glutening and my TTG was still negative.  It is the way I test along with small children and infants.  My doctors are perplexed too.  

The celiac panel is not perfect for everyone.  It is pretty good, but that's why an endoscopy is needed to confirm a diagnosis.  

Before giving up (and don't if you think he is ill).  Ask for the complete panel.  By the way, celiac disease is genetic.  My now 14 year old is tested every two years even without symptoms.  She gets the entire panel.  Luckily, she is negative so far.  

Your son might not have celiac disease.  He may not need much food.  My brother was like that.  I ate a ton and was a tiny kid.  My brother was little too and my mother begged him to eat.  Finally, she gave up and just offered good wholesome food.  Some kids are picky eaters.  

I hope this helps!