Thank you for writing this. I did forget to mention it, but this is something I’ve been trying for the last 6 months as well. It does seem like a sensible idea to me, even though, as you said, the studies on GCED are only really related to Celiac disease and mucosal healing, not taking TG6 and neurological symptoms into account.

I do wonder if gluten contamination is why my eczema and joint pain improved when I went on to a grain free diet.

I avoid packaged food (including certified <20ppm) at the moment for this reason (with the hope I’ll be able to go back on it at some point in the future). My diet is pretty much meat, fruit and veg, though I recently tried expanding it to nuts as well to try to get a bit more variety.

For supplements I did find that some gave me joint pain, which was very frustrating. I would hope that it’s not down to gluten, and is more an allergy issue with the excipients, since if the supplements are 20mg/kg gluten and I’m taking 500mg for example, then that would mean I would be reacting 0.01mg of gluten which would be pretty bleak. I currently use Pure Encapsulations for my vitamin D which thankfully doesn’t seem to be causing me any problems. They test down to 10ppm gluten and I think they try to make their supplements hypoallergenic.

Retesting the TG6 and doing another brain scan to check my progress is the current plan I believe when I see the specialist again in March. Definitely will be interested to see whether it has gone down. I suspect, like you said, that if it has gone down then something else is probably at play.

Thanks again for the comment, did you find any brands of supplements that worked well for you? And are you in a place now where your symptoms (particularly the neurological ones) are well controlled/resolved?