Understanding Villi Healed but Antibodies Present

[vvicin02]

Yesterday I had an ultrasound of my esophagus (couple of cyst they want to look at) and while they were in there they took some biopsies of my small intestines to see if my villi has healed since being on a GFD. To my surprise, I was told it looked healed! That is awesome. However, I am confused. My blood work, mainly my Transglutaminase IgA, is still high. It has dropped quite a bit from 193 to 88 but is there no direct correlation with antibodies and a damaged villi? I tried to research this but I didn't find much. What I did find on line says that there may not be direct correlation. What do you all think? I guess at the rate I am going that in about 10 months I should have a more normal reading - if I don not stray. 

[cyclinglady]

Someone like me!  

I only test positive to the DGP IgA.  So, when I had a gluten exposure that would not resolve (even after months and months and on the Fasano diet), I caved in and had a repeat biopsy.  My villi had healed despite a still elevated DGP IgA.  I was diagnosed with Chronic Autoimmune Gastritis though.  My research has unveiled that the celiac antibodies tests were designed to help diagnose but not monitor the gluten-free diet.  But it is the only non-evasive “tool-in-the-toolbox”, so doctors use it.  

Be happy about your healed villi.  My GI  said he went in deep and besides the confirming pathologist’s report, he could visually see healthy villi (got the photos to prove it).  Now, I am not going to ever get any follow-up testing.  Why bother?  In my case it is not accurate.  I think that my other autoimmune and hypersensitivity issues impact those test results.  

Keep us posted about that cyst.  

Edited October 1, 2019 by cyclinglady

[vvicin02]

Well, I received my results on my biopsies. I guess the Doc was not totally accurate in his assumption that my villi has healed. The lab results indicate "Duodenal mucosa with mild to moderate villous blunting". It looks like I still have some blunting going on (3a) and getting exposed to some gluten somewhere. This sort of explains why my numbers are not totally free of antibodies. Boy - I don't know if I am getting CC or if it will just take time since my numbers are slowly going down. Little bit of a bummer. I never eat out and cook my own food. My house is not gluten-free. It's tough since I am asymptomatic.

[cyclinglady]

I am so sorry. 

It sounds like your GI does not have the latest in scopes.  When I was diagnosed, my GI told me that everything looked good, but my biopsies revealed otherwise.  My new GI did have a scope that had very strong magnification and my repeat endoscopy and biopsies revealed complete healing (remission).  But that was five years later and after tweaking my diet beyond just gluten free.

I would suggest a few things.  

1.  Consider following the Fasano diet.  The only grain allowed is rice (which should be washed well since it is still a raw agricultural product) and is mostly non-processed.  I followed  the diet for about three months.  I did allow for coffee (I ground) and cream.  

2.  The next thing is to have your house go gluten free until you see results (e.g. TTG in the normal range).  Your spouse, kids, whoever, can live without gluten.  Let them get their gluten fix outside of the home.  Have them wash up when they return.  It is not more expensive.  No one must consume bread or they will perish.  I used to send cake mix with my kid to her friend’s homes to bake.  The kids loved it.  Parents were supportive too!  

3.  After the Fasano diet, omit grains and flours that are not certified gluten free.  Avoid processed foods that are not labeled gluten free.  This just makes it easier to avoid gluten.  It is what I do.  I pretty much am on a non-processed diet.  I do buy dairy products because I do not have a cow handy.  Other items are labeled gluten free, or I do not eat them.  I also only eat at Dedicated gluten-free restaurants.  

Some people do well in a shared household, like KarenG.  But I bet, she rules the kitchen and has clearly created  procedures and her family complies.  She most likely buys and prepares most of the food herself.  I did that for years before I was diagnosed and hubby was the only gluten-free eater.  When my kid was old enough to help in the kitchen, we went 100% gluten free.  I did not want to worry anymore.  I needed a safe place to let down my guard.  Everyone needs to figure out what is best for them and their situation.  

At least you do know that the TTG follow-up testing works for you.  It did not work for my as my DGP IgA antibodies were still really elevated when I had my repeat endoscopy.  Maybe my body refuses to let go of the memory of gluten.  Just a theory!  

I hope this helps.   Do not despair.  Just move forward!  ?

Edited October 7, 2019 by cyclinglady

[RMJ]

When the blood tests are developed they don’t try to get a correlation between the numbers and the degree of villi damage.  They basically just look for positive blood test with positive biopsy, and negative blood test with negative biopsy.

I know some tests have a weak positive range - I wish I knew the brand so I could look up their approval on the FDA and see what they claim it means, if anything.

I also am asymptomatic.  It took me several years, and finally the Fasano diet, to get my antibody levels down to normal.  I second cycling lady’s advice.