Trying my best to summarize what’s been a long process – for years I believed my energy, mood, well-being, etc. were dramatically impacted by what I ate. I concluded sugar really hit me hard for many days after I ate it (and I love sugar) but the longer I went without sugar, the progressively better I felt. But it wasn’t long that even avoiding sugar alone didn’t seem to be working as well, so I started limiting wheat and gluten too, but not complete exclusion.
I then had blood work done for a physical (I didn’t even know they included a celiac panel until I got results – so it’s not something I was looking for) and ended up being positive on 1 of the 4 tests.
The positive test is labeled as DGP IgA (it was 21 with a normal range of <6.1); the negative tests were DGP IgG, TTG IgA, and EMA IgA. The summary on the results says that ‘results may support a diagnosis of celiac disease’.
The hematologist is very highly regarded but not a celiac expert and he told me he thought the DGP IgA test was new and highly specific and nearly conclusive if not entirely conclusive, but that I should see a GI specialist. We both reasoned the other 3 tests were likely negative because I had been probably 80% or more gluten free for the preceding 6 months and my understanding is that those tests are sensitive to if you are currently ingesting gluten.
I immediately went 100% gluten free and basically immediately felt like a million bucks. But a couple weeks into this I started eating gluten-free junk food because I thought – yay – sugar wasn’t the issue – it was gluten – so I started eating more sugar so long as it was gluten-free. I very quickly nosedived in to feeling mostly like crap again despite being gluten-free (although I still felt moderately better without gluten).
After 2 months being 100% gluten-free but not feeling very good (but still eating too much sugar and gluten-free junk food) I finally got to see a GI specialist. He saw the negative tests and thought that I didn’t have celiac (he thought it might be small intestine bacterial overgrowth – SIBO – which has many of the same symptoms) – but he didn’t think the DGP IgA positive by itself meant I had celiac. He offered doing the genetic test on the outside chance we could rule out celiac – and lo and behold I just found out it did rule it out! I don’t have any of the necessary genes.
So I am wondering if anyone knows why I would have a positive DGP IgA test when I basically conclusively cannot have celiac disease? I thought the DGP IgA test measured only antibodies that would be present if you had an issue with gluten.
And if the answer is I’m clearly gluten sensitive in a bad way, but don’t have celiac, then I wonder why the establishment is resisting that diagnosis if someone like me can be positive on the DPG IgA test but not have the genes that allow for celiac.
Thank you so much for any insight at all – I know most here have or have had similar troubling issues and I really appreciate any help in getting to the bottom of mine.