THANKS! Gene testing and Dr. Gray

[Guest guest]

Just to add my thoughts, the gene test is most useful when used

to rule out CD in cases where the diagnosis is uncertain. 1/3 of

the US population tests positive for the gene, and while I have often suspected

that that population would all do better to be off gluten, they do not all test

positive for CD, so obviously there is more to actually developing CD than just

those genes and wheat. I think it is possible to be in an early

stage of celiac damage where gut damage is minimal and antibodies are low but

symptoms are present; this makes diagnosis very difficult when it is at that

stage. We see this in people with DH who take Dapsone to control skin

symptoms and continue to eat wheat, then develop gut symptoms years later. I

have also heard of people with celiac family members who were tested for CD,

came up negative, then, after some stressful experience, developed symptoms and

tested positive. Keep in mind that everyone is affected differently by CD,

and no gut damage now may only mean they didn’t biopsy the right spot or

it may mean that your body has been able to cope with the damage so far, but

any set back could tip the balance to full gut damage.

Pam

Thanks for all the responses on gene testing,

it really helped clear up the confusion I had!

ORIGINAL QUESTION: if a gene test can determine with 100% accuracy if you have

CD or not,

why is it not the first test run?

[Guest guest]

Wow--I thought maybe they didn't have any gut damage at all until the stressful event happened whatever that might be.What you are suggesting is that slow degeneration is occurring in any case whether the villi are obviously hurt or not. Is there confirmation on this?All I can think of is that various authors suggest that many of the degenerative ailments of western culture are exacerbated and some think brought on by eating sugar and gluten etc. Is this what you mean?BeaPam Newbury <pknewbury@...> wrote: Just to add my thoughts, the gene test is most useful when used to rule out CD in cases where the diagnosis is uncertain. 1/3 of the US population tests positive for the gene, and while I have often suspected that that population would all do better to be off gluten, they do not all test positive for CD, so obviously there is more to actually developing CD than just those genes and wheat. I think it is possible to be in an early stage of celiac damage where gut damage is minimal and antibodies are low but symptoms are present; this makes diagnosis very difficult when it is at that stage. We see this in people with DH who take Dapsone to control skin symptoms and continue to eat wheat, then develop gut symptoms years later. I have also heard of people with celiac family members who were tested for CD, came up negative, then, after some

stressful experience, developed symptoms and tested positive. Keep in mind that everyone is affected differently by CD, and no gut damage now may only mean they didn’t biopsy the right spot or it may mean that your body has been able to cope with the damage so far, but any set back could tip the balance to full gut damage. Pam Thanks for all the responses on gene testing, it really helped clear up the confusion I had! ORIGINAL QUESTION: if a gene test can determine with 100% accuracy if you have CD or not, why is it not the first test run?