tests to rule celiac IN, not to rule celiac OUT - Re: DD is NOT celiac!

[Guest guest]

>

> Someone else mentioned on here a while back that you can

> only use these tests to rule Celiac in, not out!

>

>

, thanks for mentioning that. It's a quote from Dr. Fine.

Here:

http://www.celiac.com/st_prod.html?p_prodid=946

While I don't know if I " buy " everything Dr. Fine has to say,

he is definitely on the mark with that one line.

The tests can only rule something IN, not out.

Same goes for ALL diseases, really, if you think about it.

Just because the values of the tests for disease X are still

low, so low that it's yet undetectable, that doesn't mean you

aren't sick with disease X. It just means you aren't sick enough

to meet the definition of having disease X yet. Doesn't mean you

don't have disease X; it just means they can't " see " disease X.

Personally, I'd already been down that road with another disease,

so the concept wasn't foreign to me when I encountered it with

celiac.

In particular, diabetes. The most strict definition of diabetes

is any two tests of blood glucose over 200 mg/dl, separated by

time and occasion. That equals Diabetes Mellitus, even if fasting

is OK and even if most post-prandials are OK. To ward off damage

and to prevent the disease from getting worse, a person who meets

this most strict definition of diabetes has to start eating right

and exercising for optimal health despite diabetes. That's the

way to prevent blindness, circulation problems, kidney damage and

the like. But, unless a person or his/her doctor is willing to

do more than one test, such a case of diabetes isn't likely to be

found until it has progressed much farther! So, if a doctor only

runs one test or two tests today and doesn't " see " diabetes at

first glance, it doesn't mean the person isn't running post-prandials

of 250 mg/dl on other occasions!

Same with lots of other diseases. Just because this particular

" snapshot " of your health is OK, it doesn't mean that you aren't

feeling poorly on the whole, aren't needing treatment for

disease Y, aren't sick with Z.

It takes lots of investigation sometimes to find the problem.

And sometimes we have to get a whole lot sicker before the disease

can be found.

And poor Celiac Disease. Our culture tells us to eat wheat! We get

really sick before Celiac is found! Gosh, I was on a whole wheat

diet before I finally got diagnosed! Feeling sick? Having the runs?

Have the BRAT diet... with whole WHEAT toast! Have whole wheat

noodles in that chicken soup. Have whole wheat pasta for supper...

It's no wonder, then, that it's so hard to find celiac. It all seems

so obvious in hindsight - celiac can explain so many of our long-

standing problems. But the finding it is tricky, indeed.

I like to remember that quip about " tests can't rule a disease OUT,

only IN " . When my daughter was sent to the pedi GI, the doc said

something about " she doesn't have it 'coz this test is low... " I

said the quip about ruling out versus ruling in. The doctor looked

at me, stunned. Then she smiled and agreed that Dr. Fine is right.

On the next visit, the Dr gave me the same line back... " You know,

the tests can only rule the disease IN, not out. But so far, the

tests are all low value so we can't use these tests to rule celiac

IN. We'll just have to keep an eye on her and see if symptoms

progress. " That's a far far wiser stance than dismissing the

possibility outright and never considering it again.

Esther in RI