Negative or positive tTg, IgA??

[stayathomah]

I'm so confused. I've researched online and have been getting mixed results. My 13 year old has been getting persistent symptoms since he was a toddler such as: headaches, GERD, anxiety, recently dx with depression, rashes to armpits, neck, groin, off/on canker sores, chronically low Vit D (11), ongoing foul-smelling stools alternating from loose to constipation, tingling fingertips (resolved for now). I had him tested for Celiac in 2013...it is now 2016. In 2013 I was told he did not have Celiac based on the results from the lab company this hospital used. Online info (Mayo Clinic) states that he is. These are his values:

tTg, Iga 9.2 units/ml

IgA- 434 (High) 

Those were the only tests taken. Any advice/input welcome. Thank you.

[kareng]

Are you saying that the doctors at Mayo Clinic diagnosed him with Celiac but didn't tell you?  You just saw it when looking at his records?  If that is the case, I would call them back and make a big fuss.

[cyclinglady]

What were the lab ranges?  Each lab varies and you can not compare results from a lab online.  

He did not get the full panel, just the screening.  If you think he has celiac and doctors are perplexed, ask for the  DGP and EMA antibody tests.  You could also ask for the genetic test to rule out celiac disease.  30% of the population carries the genes, but only a tiny few actually ever develop celiac disease.   Go to the university of Chicago's celiac website to learn more about the complete tests.  For some reason I can not link this morning!  

 

[stayathomah]

For this particulat lab, a positive value is if it's greater than 19. Most labs, from what I see in the posts and from Mayo clinic, is below 4 is negative, 4 to 10 is a weak positive, and above 10 is positive. Why such a a big difference b/w different labs? If I go with this  hospitals lab values then he is negative because his is 9.2 units/ml  but flagged abnormal because of the high Ig A of 434. What is causing that to be so high then? My peds said that maybe he was getting over a cold or something but he wasn't at the time ill. Our appt with GI is not til mid April when I can request other tests you mentioned. Meanwhile I'm trying to find answers on my own. 

Thanks for your input.

[cyclinglady]

Doctor Google is amazing.  Here is one link explaining why lab ranges vary.  You can google more.  

Open Original Shared Link

He is just out of range on the IGA test.  It could be from:

Open Original Shared Link

The danger of Dr. Google is that folks tend to freak out and think they only of the worst outcomes (e.g. Cancer).  That is why MD's are not happy when their patients Google and try to diagnose themselves.  You can use the Internet as a tool.  My neighbor ER doc uses it regularly BUT HE IS A MEDICAL DOCTOR WITH YEARS Of TRAINING and can interpret his findings.  

So, in this case, you need to research celiac disease more and learn all about it.  If you think he has celiac disease, have him continue to consume gluten until that GI visit and request a full celiac disease panel.  Do not settle for just the TTG again (or you will continue to be stuck in diagnostic ........).  

Honestly, your PED could have been right about a minor infection.  My IGA was way higher than your son's result (over 700).    But I did not worry.  I have another autoimmune disorder, plus bad allergies, and my endoscopy ruled out a bacterial infection (but did find celiac damage).  They run the IGA deficieny test (a control test) for celiac disease to see if the celiac disease TTG or DGP  IGA tests are valid.  If the result is low, then the doctor has to run the IGg (TTG and DGP) versions.  It would be nice if doctors ran all the celiac disease tests at the same time (thankfully mine did), but it comes down to money/insurance.  

My kid is 14 and does not have celiac disease so far.  So, I can empathize with you.  We hate for our kids to be sick!  

 

 

 

 

[stayathomah]

Thank you! I appreciate your suggestions and input ?