Do We Need An Endoscopy?

[Staceyshoe]

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. He's been on gluten-free diets in the past for up to 4-6 weeks, and we didn't notice any real change. But our family recently went gluten-free for a while (my youngest was diagnosed with a severe wheat allergy), and I noticed more problems with my oldest when he started eating gluten again. Nothing major. Nothing that makes me feel I can conclude that gluten is definitely an issue. Definitely not the stereotypical picture of celiac disease.

Still waiting on the results of the blood test. If it's negative, I may do a gluten-free 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. So here are my questions:

* 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.) Part of me wants to know for sure whether he has it because the diets haven't given a clear indication and because there are other family members with blatant symptoms who don't see a need to get tested or go gluten-free. But I also don't want the scope. Wouldn't the bloodwork be fairly conclusive?

I'm so thankful this forum is here! I've already learned a lot, but I am really struggling with what our next step should be.

[shopgirl]

Yes, the blood panel can show false negatives but rarely false positives. Particularly in a child who can't build up a couple decades of damage.

If he's creating antibodies, no, it doesn't matter the amount of damage. He'll heal on a careful diet.

The only thing that might make you want a scope is cooperation from his school. They may not make necessary allowances for his diet and contamination issues without a diagnosis from a doctor. And if your doctor isn't willing to give an official diagnosis without the scope, you might run into some problems. Maybe ask the school if that would be an issue?

[Skylark]

I completely agree with Shopgirl. The blood panel is 98% accurate in kids.

[Staceyshoe]

I completely trust the knowledge of those who have been on this board for a while. I am satisfied that, if his blood panel is positive, it means he has celiac. Do you happen to know of any links that give info about the reliability of the blood test on a child? (If dh or other family members question me if the dr doesn't give an official diagnosis, I'd like to have something to show them that it's reasonable to assume celiac based on the bloodwork.) TIA!

[Skylark]

Which blood test?

[divamomma]

I would like to know the answers to these questions as well! The dr we saw the other day briefly mentioned that positve blood (TTG)in the 40-100 ranges are not positive for celiac. What???? That totally confused me.

[Staceyshoe]

Which blood test?

I'm still waiting on the results, but I remember the dr mentioning that he was ordering a ttg and IgA and something to make sure ds isn't IgA deficient. There may be more also. I'll request a copy of the report so will know more after it's been processed.

[Skylark]

I would like to know the answers to these questions as well! The dr we saw the other day briefly mentioned that positve blood (TTG)in the 40-100 ranges are not positive for celiac. What???? That totally confused me.

Different labs have different "normal" ranges because the test results are in arbitrary units. Something one lab calls 10 on a scale of 1-20, another lab could call 100 on a scale of 10-200. You have to have the range that lab considers normal to interpret the test. I've seen pretty big numbers from some European labs. If your TTG was above the normal range for that diagnostic lab you should have an endoscopy and be seriously considering gluten-free.