I think that one day they are going to find a missing link for celiac testing. I think there is another antibody or a whole different substance in the body that they haven't discovered yet that will point to celiac.
There are too many of us on this board who were deathly ill and debilitated yet we were either only positive on one or two of the tests in the panel or we were barely over the limit positive. Or negative which is just shameful. If someone is that sick, it's not logical that their antibodies will be that low. Something is missing.
Or there is some sort of inverse relationship that they are missing.
Celiac testing is one of my biggest sources of anger about this disease. I HATE seeing all the hell people go through on here who are clearly sicker than sick and yet their tests come up negative and they don't know what to do. I hate and loathe even more when they have a big reversal of symptoms when they try gluten free but they doubt themselves or feel like the celiac stepchild for not being "real" bonafide celiacs.
I hate the gluten intolerance label with a purple passion. It lowers people's expectations of what the disease can do to you. It makes them feel like it's not as serious even though in their heart they know it is. And I think the majority of intolerant people are celiacs who have been failed by the crap garbage that passes for testing. If you say you are intolerant there is not a waiter or restaurant manager in the world who is going to take you serious and good luck getting most docs to take that seriously too.
The most discouraging thing I have seen in a long time was that article about how bad endoscopies are. Dr. Green or whatever his name is (Is it Green? I forget)insists it's the "gold standard." He's not far from me and he refused to take me as a patient because I refused endo. I got a positive blood test and I wasn't consenting to invasive procedures and eating gluten any longer. I was going to die if I kept eating gluten as far as I could tell.
The stats on endo were abysmal. Most doctors not performing them correctly, reading the results wrong. People's lives are at stake.
Long time since I have been hanging around here. I miss everyone and all the passion and support that got me through the darkest times in all of this. I agree with so much of what you are saying. I hate to hear the old standby suggestion to "make sure you keep eating gluten (uh.. poison) until after all the testing is done" garbage. I tested negative but the evidence was so overwhelming that the doctor did the scope anyway. Thing is, I was fortunate to have a good gastro who did it right.. or maybe was lucky. The damage can be very spotty and the samples they take from random locations might miss it altogether thus giving the appearance of no atrophy. It didn't matter in the long run whether I got the ok from the doctors or not. There was no way anyone was going to get me to "challenge" by eating anymore poison. I was dying and when the light bulb went on, there was no turning back. I knew and that was all that really mattered. It's nobody elses' business as to what my official DX was (even though I did get a positive DX for celiac.) oOf course, that's a lot easier for me to say now than it was back then. It was brutal at first. All I know is that when I went rigorously gluten free that I went from dying to recovery and from recovery to living and from living to thriving. Granted, I still have a ways to go but just this past fall I was talking to some rheumatoid arthritis researchers about how, after my celiac diagnosis and switch to a very low carb gluten free diet and strategies to restore my gut flora, that my supposedly irreversible joint damage sort of kind of began to reverse. My hands, which used to be claws are almost completely back to normal. My elbows, which I could no longer fully straighten to within about 15 degrees of straight, are now capable of full range of motion. I have no gel time when it used to take two plus hours to get past shuffling. Thing is, according to the initial blood work, I shouldn't have received the scope. Even with all that Fasano is doing and that others have contributed to the field, I don't think we're anywhere close to putting it all together in a way that is truly helpful. I think that the commercialization of the celiac diet has messed things up so severely that many are no better off than pre diagnosis because of it. I live and eat on the lunatic fringe now but do so happily because I have my life back. The perfect storm, the confluence of so many food and environmental and medical (pharmaceutical) changes that have happened over the last fifty years are wreaking havoc with our genetic expression and we are the proverbial canaries in the cage.. but the cage is getting mighty crowded. Anyway... rant over. I have way too much catching up to do here and I hope I see some old friends.