21 replies to this topic

[Ninja]

There is quite a bit of research out there on Celiac's who do not have DQ2 or DQ8, considering the supposed "rarity" of them. Seems to be somewhere between 3-5% of people who ARE celiac and have tested positive blood and biopsy do not have ANY of the associated alleles. I do not have the beta units of DQ2 or DQ8, did not have biopsy (or endoscopy for that matter) because I refused to gluten challenge. My GI still wants to call it "probable celiac" (due to incredible symptom resolution) even though he "shouldn't" because I do not meet diagnostic criteria. It is possible, and just like many other things, it is most likely more common than we think.  

[mommida]

Ok genetic testing is not 98% accurate, like it is stated.

 

We had conflicting results in that I was not matching my biological daughter (at least enough that from test results could not show mother-daughter relation)

So we talked to a representative from Prometheus Labs that did the testing.  (I figured obvious mistake, do the test again, because we definately paid a crapload of cash for this)

The response...  Will not do the test again

Could have been the 2% known miss of the test

every blood test has at least a 30% HUMAN error rate.  (lab tech. contaminated sample, imprper storage of sample, misread test result, and on and on......) So maybe error rate is even higher than 30%

and genes mutate (because of the issue non matching mother - daughter)  Didn't bother testing my husband as I am the symptomatic to gluten parent.

 

So genetic testing *can* be a tool.

[frieze]

Mommida, is it possible that you are a chimera?

Ok genetic testing is not 98% accurate, like it is stated.

 

We had conflicting results in that I was not matching my biological daughter (at least enough that from test results could not show mother-daughter relation)

So we talked to a representative from Prometheus Labs that did the testing.  (I figured obvious mistake, do the test again, because we definately paid a crapload of cash for this)

The response...  Will not do the test again

Could have been the 2% known miss of the test

every blood test has at least a 30% HUMAN error rate.  (lab tech. contaminated sample, imprper storage of sample, misread test result, and on and on......) So maybe error rate is even higher than 30%

and genes mutate (because of the issue non matching mother - daughter)  Didn't bother testing my husband as I am the symptomatic to gluten parent.

 

So genetic testing *can* be a tool.

[VeggieGal]

Well I got my hla tests back and are positive!

Since back in January, (well actually last october but i wouldnt do biopsy) I was dx positive based on celiac blood panel, symptoms and other auto immune disease (doctor said i was 98% chance of celiac)....its amazing how my close family have for the past few months have totally gone into denial about getting tested themselves but as soon as my gene test comes bac positive they now believe its possible and arrange to see their doctor . Maybe more gene testing should be done ? I know it doesnt mean they have celiac but my family seem to be taking it more seriously now

[Gemini]

Well I got my hla tests back and are positive!

Since back in January, (well actually last october but i wouldnt do biopsy) I was dx positive based on celiac blood panel, symptoms and other auto immune disease (doctor said i was 98% chance of celiac)....its amazing how my close family have for the past few months have totally gone into denial about getting tested themselves but as soon as my gene test comes bac positive they now believe its possible and arrange to see their doctor . Maybe more gene testing should be done ? I know it doesnt mean they have celiac but my family seem to be taking it more seriously now

Ok...let's not keep us in suspense here!  Which ones ya got? 

[VeggieGal]

Ok...let's not keep us in suspense here! Which ones ya got?

oh i dont know? the dietician just said it was positive. I'll try and get exact results, would be good if they can be interpreted.

Was just thinking, that if i'd gone through with biopsy and they took insufficient samples or it was patchy...then I could've had a completely different result...its kinda scary that so many people could be incorrectly un-diagnosed because endoscopy is classed as the 'gold standard'. I realise endoscopy is worthwhile for seeing how much damage there is though.

Anyway, i'll get back with results

[Celiac Mindwarp]

Great you got your results.

Glad the family is taking notice too. Should make it easier if your son runs into any issues later.

I agree on the scary bit. If it wasn't for this board I'd be out there eating gluten now with no clue about NCGI.