equivocal celiac results- weak positive

[dahlj]

to clear up some misinformation:

Every test has a cutoff. some labs have different cutoffs.  suppose one lab has a cutoff for 3 and another has a cutoff for 4. It means that there's some leeway in judging results based on studies OR that they are using different measurements. My son once had a lab that was positive. He was retested by a doctor whose lab had a different cutoff he was comfortable with.  Who's right? Well, this is about SYMPTOMS. The ONLY test that will confirm celiac is an ENDOSCOPY or positive culture for dermatitis herpetiformis if you have it (-relatively- rare among celiacs even).  If someone has an equivocal TTG test and other tests are negative, the doctor may advise against an endoscopy.  You can still ask for one. An equivocal test, or weak positive is NOT a positive test or it'd just be called positive!  It means it's elevated but not enough to confirm a celiac diagnosis (this is based on standards). Now, of course some people with equivocal results have celiac. Some don't. What are the numbers? I don't know but clearly if 90% of people with equivocal results that got tested had celiac confirmed by endoscopy, they'd rearrange the standard.  Many people don't want to try the gluten free diet for a month to see if it improves symptoms.  This is about symptoms. If they are that bad, you would get an endoscopy anyway. An endoscopy isn't nothing but I don't consider it a highly invasive procedure. 

[Jmg]

Welcome to the forum Dahlj! 

I gave to disagree on this:

3 hours ago, dahlj said:

weak positive is NOT a positive test

A weak positive is exactly as it sounds. Positive, but only just over the line. Positive nonetheless. Sure any diagnostic process may require further corroboration, via further testing, endoscopy, symptoms, response to gluten-free diet, but the test is what it is. 

3 hours ago, dahlj said:

if 90% of people with equivocal results that got tested had celiac confirmed by endoscopy, they'd rearrange the standard.

Maybe, but if 90% of people with equivocal results aren't subjected to further testing how would they know? The point is that am lot of people with weak positives posting here are saying that the doctor won't look any further and has told them they're not celiac and can eat gluten without an issue. Leaving aside the incidence of NCGS that could lead to a lot of celiacs going undiagnosed. 

As to where the standard is set, that could be a clinical decision, but it could also have a commercial, or logistical resource allocation dimension...

I think endoscopy comes under the 'minimally invasive' heading btw

Anyway, just my view. Once again welcome