Blood results

[nataliet24]

I just had the results of my repeated blood test results. Is it normal for my level to still be positive after 8 months gluten free. My level to start with was over 200 and now down to 16 and I’m still having belly pain everyday and some other symptoms 

[cyclinglady]

The celiac disease blood tests were developed to help diagnose celiac disease and not really to be used to determine dietary compliance.  But it is the only non-evasive “tool-in-the-toolbox”, so doctors use them.

My DGP IgA was very elevated after a tooth infection, flu, gluten exposure.  My symptoms (some new) did not improve.  Finally, I had a repeat endoscopy which revealed a healed small intestine, but found that I had autoimmune gastritis.  

You should go back to the GI.   Ask for the DGP tests as they are considered better than the TTG for dietary compliance.  It might be another illness (like SIBO or Crohn’s) or you could still be getting gluten into your diet.  Do you ever eat out?  Eat food prepared by anyone else?  Consider the Fasano diet.  I trialed that for three months without success, which indicated that I really needed that repeat endoscopy.  

It really can take a year for the antibodies to normalize.  You might need more time, but with daily symptoms, something is not right.  It is either glutenexposures or something else.  

Edited November 29, 2019 by cyclinglady

[NNowak]

I would agree with keeping your gastro in the loop. I can also tell you that my initial “recovery” once diagnosed took well over a year. My energy level was the first remarkable difference so I chose not to be bothered by the GI issues I’ve had since birth. In 1995, the years I was diagnosed, docs knew very little about celiac. My GI actually told me I could eat gluten after a few months - I chose not to because of the significant improvement in my health on a gluten-free diet. 24 years later, after years of unknown deficiencies and adequate medical care, I was diagnosed with pernicious anemia requiring B12 injections. Only after the B12 loading was I finally free of the more extreme GI symptoms. I am scheduled for both scopes in a few weeks to follow through completely with my chronic symptoms. 
 

A side note, as someone with an autoimmune disease, your immunities for other autoimmune diseases will be abnormal from time to time. Depending on the health of your body, you will produce antibodies detectable in other screening. For a period of time I tested positive for RA and lupus. I was in a very difficult home environment and in the midst of pregnancies and miscarriages. Once I resolved the home situation and some time went by, the RA and Lupus antibodies disappeared. That is the nature of our challenges. 
 

You can look at the FODMAP diet and see if that interests you as a possible solution to your GI symptoms. Unknowingly, I had implemented this over the years in an effort to function. It does help to know where your commonly ingested foods fall on the FODMAP diet so you can have a little more control over your symptoms. Bone broth is very healing as well. 
 

Feel better soon!