Bane, I am an infrequent poster, but I have followed this forum almost weekly (sometimes daily) for 5 years since finding out that our oldest son (now 21) has celiac. His was found with a high tTg that lead to a positive endoscopy. That single discovery began the celiac avalanche for my family. Because of the reading I did here, I knew that everyone in our family needed to get tested, and I became insistent, unwavering, almost nagging in my certainty. Here's what we have uncovered to this point:
My father: diagnosed at age 72, 1 1/2 years after my son. No blood testing, but positive endoscopy with severe intestinal scalloping and no villi. Now deceased from pancreatic cancer.
My mother: self-diagnosed in the 80's with a "wheat allergy." Has been gluten free so long that testing would be pointless. We thought she was crazy.
Sister: diagnosed with DH 3 years ago, which is a positive diagnosis for celiac.
Brother: diagnosed last summer with ALL blood tests on celiac panel being strongly positive. Endoscopy showed blunted villi.
Brother's daughter: blood work positive, though I don't know what tests were run. No endoscopy.
Another brother: Doc only ran Iga serum and tTg tests with normal results last fall. He is hypothyroid with a strong family history. Really?? No full panel?
Me: strictly gluten free for 4 years. Positive for DQ2 and DQ8 gene markers. Tried gluten challenge last year but could only endure 6 weeks. Complete panel showed normal levels. Still gluten free.
Daughter: Complete panel with only DGP IgG showing strong positive, all others normal, endoscopy was negative, positive for DQ2 gene. As a teenager, she refuses to accept that we caught it early with the DGP. Still lovin' her pizza...until I have her tested again. ;-)
2nd son: all bloods normal when tested 4 years ago, positive for DQ2 gene. Will retest if symptoms occur.
As you can see, my family alone has the full range of tests, or lack thereof, as well as results. Every test is important! It seems that some doctors don't know the difference between a full panel for TESTING and a couple of tests for SCREENING. I remember someone here posting about that, though I don't recall who it was. Also, from all my research, the tTg Iga is very accurate (as long as you are not Iga deficient) in detecting advanced damage to the intestines. The DGP can be an early detector before too much damage is done. There's a reason for each test, so get them all if you can!
I have spent a lot of time reading and researching over the last 5 years, and personally, I would not question what the moderators of this forum recommend. They have seen it, experienced it, heard it all. None claim to be doctors, but as far as educating newbies on celiac, they are tops!
Keep us posted!