IgG still high after 5 years!

[kabons]

Hey everyone! I've been gluten free for 5 years after getting a very positive Deamidated Gliadin IgG (66.7). Long story short, I only recently started getting follow-up support for my Celiac because the first gastro I saw was very unhelpful. For the first time in 5y, I took the blood test again, and the number isn't much lower: 41.5 

How should I interpret this number? I'll be following up with my new gastro, but probably not for a few weeks. Should I be encouraged that it's lower? Or, am I doing something seriously wrong? 

[RMJ]

I saw from other posts that you never had an endoscopy.  I hope your new gastro recommends an endoscopy, to see if the antibodies correlate with some damage.  If no damage though, you won’t know if you healed or never had it.  Do you feel better without gluten?

[kabons]

47 minutes ago, RMJ said:

I saw from other posts that you never had an endoscopy.  I hope your new gastro recommends an endoscopy, to see if the antibodies correlate with some damage.  If no damage though, you won’t know if you healed or never had it.  Do you feel better without gluten?

Well, I did have an endoscopy 1yr after being gluten-free because I couldn't tolerate gluten at all (still can't - makes me extremely sick). I didn't hear back about the results so I assume they didn't show anything. I'm a million times better gluten free. As I said, I can't even tolerate it in small amounts without severe pain and vomiting. However, I've never been careful about contamination, especially since I didn't even have a diagnosis until now. My new gastro thought the blood test and my past history was sufficient for a diagnosis. 

[RMJ]

I’m glad you have an official diagnosis - that can make it easier to convince family, other doctors, etc.  

I would suggest trying to get the official results, especially the pathology report, from your previous endoscopy.  If in the US they have to give them to you.  Nurses have been known to forget to phone patients.  Antibody tests aren’t perfect, and actually aren’t approved by FDA for followup, just for diagnosis.  Hopefully your recent results is now a false positive.  However, another potential reason is refractory celiac and it would be good to rule that out.