Help Understanding Results Please

[OliviaFW]

Hi everyone,

I was diagnosed with celiac disease in December of 2016. My symptoms did pretty much go away after being on the gluten free diet, but sometimes I still feel a little sick. At the time of my endoscopy my transglutaminase level was at 71. After six months it had dropped to 35. I just recently got my blood tested again, about nine months since my last one, and it has jumped back up to 53. We have a doctors appointment in a few weeks, but we were wondering if anyone had any ideas as to why it could have gone up.

I live with my parents and siblings who do eat gluten, so the environment is not completely gluten free. However, we are very, very careful to avoid cross contamination. I have my own toaster and cutting board, and we wash all pots and pans well when cooking. I have my own butter and peanut butter to avoid cross contamination, and my family is careful to keep all food we share gluten free. We read labels very closely and do research when we are unsure. All of which is to say, we are confused as to why it is not only not getting better, but getting worse.

Is there another reason, besides gluten damage, that my TTG level could be up? Is it true that the longer you are on the gluten free diet, the more a small amount of gluten throws your body off course? Could accidentally ingesting a small amount of gluten before my test have made it increase so much?

Any help is appreciated!

 

Edited August 19, 2018 by OliviaFW

[tessa25]

You could be sensitive to less than 20ppm gluten. You can get a Nima sensor and test all the food you eat to find the hidden gluten. It can take weeks for the antibodies to go up after gluten ingestion and months for them to come back down.

[Zedd]

To monitor dietary compliance, DGP is the preferred test rather than TTG.

Other conditions can impact TTG levels and sometimes antibody levels can wax and wane without reason.

[cyclinglady]

Great suggestions.  

There is a chunk of those who have celiac disease who are non-responsive.   Most often it is due to hidden gluten (some can not handle 20 ppm).    Read this study and consider the “Fasano” gluten-free diet for a few months.  The diet restricts processed foods, even Certified gluten-free foods.  Then get retested.  Talk to your GI.  

I did this diet after I could not get my DGP IgA number down (I only test positive to this celiac antibodies test) with my GI’s approval.  Did it work for me?  Sort of.....A repeat endoscopy revealed a new autoimmune issue (Autoimmune Gastritis) and healed villi!  So, I was adhering to the gluten-free diet and for whatever reason my blood tests were elevated.  But ALL my antibodies (e.g. thyroid antibodies) were very elevated.  

The celiac antibodies testing was developed to help screen for celiac disease (biopsies confirm).  But they are the “only tool in the toolbox” for monitoring without doing another endoscopy.  

If your antibodies still do not come down after the Fasano diet (no eating out!), ask your doctor (depending on your symptoms) for further testing.  It might not have to do with celiac disease at all!  

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Edited August 19, 2018 by cyclinglady

[TrainInVain]

11 hours ago, OliviaFW said:

I have my own toaster and cutting board, and we wash all pots and pans well when cooking.

I've read you should have separate nonstick pots and pans, and separate plastic and wooden utensils. #5
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