Low ttg iga, high total iga

[Doggburg]

I won’t be going to a doctor anytime soon so I’m looking for some input here. My teenage daughter was diagnosed via endoscopy with celiac this year. I have no symptoms but as recommended for all immediate family, I got tested during my physical. They found my ttg iga was a 1 but my total iga was 1290. I was sent to an oncologist. His fear was possible start of multiple myeloma but bone scans didn’t find any problems. He says multiple myeloma iga totals would be on the 3000-4000 range so it isn’t that (at least not yet) and his plan is to monitor me every few months to see if there are any changes. None of the doctors seems to think it is celiac due to the ttg iga number. I asked if I should try going gluten free and he said it couldn’t hurt so I have been gluten free for a month now. I think it helps my daughter to have someone else in the family to bond with over the whole gluten-free diet so I’m happy to do it. I’m curious if anyone else has had low ttg iga and high iga total that eventually turned into a celiac diagnosis. With coronavirus I’m not sure when my next appointment and blood test will be so I figured I would check here to see if anyone else has had a similar experience. Thank you for any replies. 

[cyclinglady]

Hi!  

How nice that you are supporting your daughter.  ?

I do not think you can eliminate a celiac disease diagnosis without having the entire panel.  That includes the DGP and EMA tests.  Why?  Because I personally have never had a positive on the TTG or EMA which has been done many times over the last six years.  I test positive to only the DGP IgA (biopsy-confirmed celiac disease).     Know too, that some celiacs are seronegative, yet have small intestinal damage.  

Given the fact that COVID-19 is a huge issue right now, perhaps you should consider just remaining gluten free and consider  a gluten challenge later to get tested, if you want.   I am not sure I would even want to go to a lab over the next few weeks.  

Your elevated Immunoglobulin A?  Mine is elevated too.  It can be due to MGUS, a precursor to Multiple Myeloma or autoimmune.  

My doctor keeps an eye on my Immunoglobulins levels (all of them).  My IgA has been steady for the last six years.  Because I have three Autoimmune disorders, we think my elevation is due to that instead of MGUS.  

More MGUS is being diagnosed because doctors are running the IGA test to validate say, the celiac disease tests.  If you are very low in IGA, all celiac disease IgA Type tests would be invalid.  MGUS progressives very slowly.  Like 1 or 2% a year for developing cancer.  I am not worried about it.  At least I have a heads up.  

My doctors (several) have never sent me to an oncologist, because they are pretty sure it is autoimmune related.  Still they keep a watchful eye.

You might have celiac disease or maybe a different autoimmune issue brewing.  In any case, a gluten-free diet could be beneficial.  

I hope this helps.  

[Doggburg]

Thanks for the reply. They only tested ttg and iga level so I guess I didn’t get the full celiac panel. I have never had any noticeable issues that my daughter experienced. I’m going to stick with the gluten free diet for now. If it helps my iga count, then I’ll probably just stick with it unless the dr wants me to go back on gluten for testing purposes.