Whats The Chance Of Finding Something On Biopsy?

[superfob]

Hey guys,

So I was tested a month ago with Quest and got a positive AGA and a negative TTG, with a normal total IGA. After reading about the many false negatives, I decided to go through private testing and ordered myself a comprehensive Celiac panel with LabCorp through privatemdlab - I got my blood drawn a couple of days ago and got the results back today. Nothing is positive: DGP IgA, IgG, TTG IgA, IgG, and EMA all negative.

I do have a biopsy scheduled in 3 weeks, but I am now wondering if I should even get it, given that all my blood is negative except for AGA. I understand that false negatives occur quite often, but given all negative results including DGP I am wondering if anything will even show up in my biopsy. While I have many neurological symptoms of celiac, which explains the positive AGA, I do have gastrointestinal symptoms/signs of malabsorption so it seemed weird to me that even the DGP would be negative.

Whats the chance of having something show up in the biopsy with only positive AGA? I know that in the end I need to make my own decision, but some feedback would help =). The reason why I want more testing is that from what I've experienced and read - AGA is not specific enough for a gluten problem. I understand that is only the current medical mode of thought and that it could change in the future with more research about gluten sensitivity. I also know that with neurological symptoms sometimes the only thing that is positive is the AGA - and I'm lucky I have that result at least. But I'm primarily thinking for the long haul right now - to get a more definite diagnosis so that Drs would recognize it, so that my family members will get tested, or for circumstances in which I need accommodation from a school/hospital.

Even when I write this I feel like I want to get tested, just to make sure that I didn't give up the chance of a biopsy before I go gluten free --> for a more definitive diagnosis. Another part of me is screaming at me to go gluten free right now to stop any possible further damage to my body. And then again I think I should just stick it out as it is only a few more weeks. I am conflicted as always

Thanks

[mushroom]

If it is only three weeks away and the gastro symptoms aren't too severe, I think I would be inclined to go through with it. It's probably the only chance you''re going to have (and they might find something else ) hope not. But anyway, you've lived this long with it, another three weeks....??? You are actually lucky to find someone willing to run it for you Take your chances and see what happens. Do you tolerate lactose? That is often an indicator of damage to the villi, although not necessarily reliable. If your damage is mainly neuro you could well be negative, but knowing what you know, that wouldn't affect how you feel about it, I'm sure

[larry mac]

My advise is if you can afford it go for it. It's the "Gold Standard" of Celiac diagnosis. If you are diagnosed by endoscopy and biopsy, then you know for sure you have Celiac Disease. Then you will know beyond any future doubt that you must adhere to a strict gluten-free diet for the rest of your life.

The only reason I can see for NOT doing the endoscopy/biopsy is if you cannot afford it. If you do not have insurance, and it will cost you thousands of dollars, and you simply do not have it, then OK, you just don't have a choice. Otherwise, in my opinion, it's foolish and misguided not to have the procedure.

You just have got to know, for sure, if you have Celiac Disease or not.

best regards, lm

[superfob]

Thanks guys. I know what you mean. There are just moments that I freak out with all the symptoms, but I can definately hang in there for a few more weeks - others have had it much worse than me.