Bloodwork still postive after 18 months

[Jenn D]

My son was diagnosed with Celiac Disease is April 2023. His ttg antibody was over 100 at the time of diagnosis. Now it is at 3 (which is considered negative), but his endomysium antibody iga is still coming up positive. There is no specific number just positive or negative so I'm not sure if he's getting better or not. I'm getting nervous that something else is going on and I was just looking for some advice or an understanding what this "postive" actually means. He gets tested every 6 months. Thank you so much for any responses😊 Attached is a picture of his bloodwork from August 2024

[RMJ]

How frustrating! The Endomysium antibody result is usually given as a titer, 1:5, or 1:10, or 1:20.  This indicates how far the serum can be diluted and still give a positive result. It could be going down but the way they show the results you can’t tell.

If you click on the “view trends” button on an electronic version of the results does it show any additional information?

[Scott Adams]

This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet:

• Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet

However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people.

According to this study:

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After an average of 11 months on a gluten-free diet, 81% of patients with celiac disease and positive tissue transglutaminase IgA (tTG-IgA) at baseline will revert to negative tTG-IgA (SOR: C, disease-oriented evidence from retrospective cohort study). The intestinal mucosa of adult patients with celiac disease will return to normal after following a gluten-free diet for 16 to 24 months in only 8% to 18%. However, in children after 2 years, 74% will have a return to normal mucosa (SOR: C, diseaseoriented evidence from longitudinal studies).

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This article explores other causes of flattened villi: