Follow Up Biopsy

[RoseMG]

Hey everyone,

Did a gluten challenge and had a biopsy done which showed Marsh 3B/C despite only faintly positive bloodwork. 

Have since been gluten free for one year. I had a follow up biopsy at the one year mark - no more villi damage, but still increased lymphocytes (inflammation). Lots of reports online seem to indicate Celiac's rarely have complete healing.

Have any of you ever had normal biopsies on gluten-free diets?

Thanks!

[cyclinglady]

Yes!  I had a normal biopsy on a repeat biopsy endoscopy, but it was done five years later (never had one done earlier).  I had it done because a year earlier, I had a tooth infection, a cold, the flu, and a gluten exposure within a month of each other.  I had three courses of antibiotics and have no idea how I was exposed to gluten (maybe that antibiotic but who knows?).  My antibodies for DGP IgA were elevated as they were when I was diagnosed and afterwards when I suspected a gluten exposure  (never the TTG or EMA).  They were off the charts.  I developed a case of chronic autoimmune hives (six months)  and my thyroid antibodies were also extremely elevated.  My GI wanted to rescope me by summer, but I resisted.  Instead he approved my going on the Fasano diet.  But it did not work.  Although my intestinal issues, (like trying to digest anything after a glutening resolved within a few months), I developed GERD like symptoms and oddly stomach pinching.  Finally, I caved in and had the endoscopy which revealed a healed small intestine but chronic autoimmune Gastritis (biopsy confirmed).  

My GI and I learned that the antibodies tests for celiac disease might be impacted by my other autoimmune disorders or that they just are not that accurate.  Hence, I strongly believe that biopsies are still the gold standard in diagnosing celiac disease.  However, I do know that not all people have access to endoscopies for a variety of reasons.  

 I attribute the lack of healing from celiac disease based on people trying to be gluten free but making mistakes or getting exposed to hidden gluten.  My hubby had already been gluten free 12 years (no formal celiac disease diagnosis) prior to my diagnosis, so I knew the gluten-free diet pretty well and could read labels.  However, I found that I had many different intolerances that made consuming gluten free processed foods almost impossible.  I chose to eat real single ingredient foods and to avoid processed foods.  I also do not eat out except at dedicated gluten free restaurants (except for plain coffee, etc).      Because I am also diabetic, I avoid grains (never any oats)  and legumes as well as these really impact my blood sugar, but whe I do eat them, I sort and cook them myself as the USDA allows a portion of raw agricultural materials to be included like rocks, but it could be wheat. 

Am I perfect?   No.  I do fall off the Whole Foods wagon, but when I do, I make sure those chips are at least certified gluten free.  Is this really necessary?  Some would say know, but I think that piece of mind is worth it.  That is strictly my personal opinion.  

Congratulations on doing a great job!    You just might need more time to heal a bit or look to little hidden gluten exposures as a cause for lingering lymphocytes.  Know that you can develop other AI issues.  It may not always be celiac disease as the cause of your symptoms.  

[RoseMG]

Thanks so much for your response! Interestingly, I only had elevated DGP IgA too! Nothing else, even on a gluten challenge.

I am sooo extremely careful with my eating habits, eating only naturally gluten free foods like vegetables, potatoes, etc. and certified gluten free products. I never eat out because I'm too afraid. I won't even take medicine for fear it's hidden in there! So it was a bit disappointing to still have the increased lymphocytes.

Hopefully my body just needs more time to heal.

Anyone else with a follow up biopsy?