Testing for celiac - should we scope?

[staceyshoe]

We are realizing there is a family history of celiac disease, and both my boys have had digestive issues from birth (different problems though).  We did genetic testing on them just to see whether celiac is a possibility.  My oldest (5 y.o.) ds tested positive for THE celiac gene and subtype most likely to result in the disorder.  Since he's eating gluten now, we just went in for the blood panel.  His symptoms are not the stereotypical celiac case.

Still waiting on the results of the blood test.  If it's negative, I may do a GF trial and see what happens.  If it's positive, the GI wants to do an endoscopy.  I'm hesitant about that test.  Ds has a scope 3 years ago, and it was emotionally traumatic for him.  The blood panel is notorious for false negatives, right?  So if it's positive, what is the likelihood that he doesn't have celiac?  I guess I don't see the point of the scope.  If he's creating antibodies to gluten, does it really matter whether they happen to find no damage, mild damage, or severe damage in his intestines?  Or does it make sense to find out what's happening in there and get an official diagnosis?  (This GI won't diagnose without the scope.)

[kjbrown92]

The only benefit I see is that if you have an actual diagnosis, you can count the difference in cost of GF food vs. the cost of regular food on your medical costs, if you're going for the 7.5% of adjusted gross income on your income taxes. The other thing is, if it's gluten intolerance, and not celiac, they might just need healing, and be able to eat gluten sometime in the future, where, if they have celiac disease, they'll never be able to eat it. My DD2 and I were both tested for it (blood test) and we're negative, but we're gluten intolerant (DS tested as gluten reactive on an ALCAT, food intolerance test). So I'm hopeful that one day, maybe, possibly, we'll be able to eat it again (but not really counting on it).

[scsigrl]

Yeah, if you want help with things down the road that need a DX, it would be easier to scope now that he's on gluten as opposed to later.  If you want to deduct $ for food, need/want a 504 you NEED a dx.  Most docs won't dx with just blood work.

So if you now or in the future think you'll need the "piece of paper" so to speak, I would scope. Having said that, the scope isn't always conclusive (as me how I know).  If you are truly opposed to the scope, I would talk to the Dr. about it and see if she/he would dx without a scope but with ttG levels and getting blood drawn to see if the ttG's go down over time (this is where we are now).

It's a tough call but a very personal one (I think).  I am so against unnecessary testing but after much deliberation, a second and third opinion and lots of research, we did scope.

[Panserbjorne]

I chose not to scope.  I also was lucky enough that our doc was happy to do a clinical diagnosis.  Blood tests all positive, dd was textbook celiac child, and all symptoms pointed to CD.