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WOW. My husband and I are still trying to process all of these messages.
I hope to do a (probably rather long) summary later.
MANY people wrote about Dr. Fine and stool tests. (www.enterolab.com or
www.finerhealth.com) we are planning on going the stool test route now,
although we still have some things to sort through first.
Dr. Fine & I have been corresponding by email and he gave me permission
to share this with the list. There are some stool tests where the patient
does NOT have to be consuming gluten. Our correspondence follows:
Dear Dr. Fine,
My husband is a biopsy-diagnosed Celiac.
We plan to order tests for our 10 year old son and 6 year old daughter
soon. They eat mostly gluten free at home (because that is what is
available) but can eat whatever is offered away from home. We plan to let
them eat more gluten for two weeks before the test.
We put our 12 year old daughter on the diet a couple of years ago because
of frequent stomach aches. She has been very faithful to the diet. She
has never been formally tested. (At the time, the only test I was aware
of was the endoscopy, and we couldn't bring ourselves to do that.) So she
has totally been gluten-free for more than two years. Now she wants to be
tested too.
I read the FAQ on your website but it doesn't really address this
particular situation. Is two weeks enough? She has agreed to forgo
testing if she gets sick while off the diet.
Also, I just want to make sure I have my facts straight: I can get the
testing done without involving a doctor? I do plan on getting them all a
physical with our pediatrician, and my husband's GI is overseeing all
this, but I can't get an appointment right away so I'd like to just get
the test results beforehand and take copies of it to the pediatrician.
Dear Ms Miller, The internet info may have misled you. In fact I am
going to change it. It is much better to test people on their current
diet to see whether or not and to what extent (if so) they are reacting
to gluten on the current diet.
2 weeks is not long enough to lead to a reliable reaction and it makes
many people sick.
Please trust me to test your children on their current diet. It will lead
to much more meaningful results.
Please let me know if I can assist you further.
Yours sincerely,
Kenneth Fine, M.D.
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Thank you
Dr. Fine,
Now I am really confused!
Everything I have read on the Celiac list about testing says that you
have to have been consuming gluten to get accurate results.
My 12 year old has not consumed any gluten for more than two years.
My 6 and 10 year olds have gluten a few times a week normally, except
during extended times away from home (vacations, day camp, etc.)
I am afraid of getting back negative results and then causing damage
later by their continuing to consume gluten in small amounts.
We have all agreed that any child who gets sick while eating more gluten
prior to the test will just stop eating gluten.
Sherri Miller
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Dear Sherri, Most people speaking about the need of eating gluten during
the tests because they are referring to the less sensitive biopsies and
blood tests. The stool tests are exquisitely sensitive to even small
amounts of gluten. If you have been gluten free for more than 1-2
months, it is better to test on the current diet before adding the
unreliable variable of a two week gluten challenge. There are no
guarantees that someone will have positive tests after such a short
period of time even if they get symptoms from it.
Here are the potential scenarios.
Your children eating some or no gluten test positive because the stool
test is much more sensitive than the blood tests, and the gene tests
(which always should be done when someone has been off of gluten) likely
will support the positive results.
The other scenario is that the first test on their current low or no
gluten diet is negative (because they have limited or stopped gluten) but
the gene is positive. Then you have a choice based on a positive gene
test. If then you want to try a gluten challenge and a second, I reduce
the price of the repeat test by half ($49).
Alternatively, if you eat gluten for two weeks (with or without symptoms)
and the test is negative, it may be so because damage and antibody
production has not yet been initiated.
I have been doing this for years. I used to think the two week challenge
was the way to go but experience proved this to be wrong because you take
a stable condition and introduce a variable of confusion.
Thus, I recommend testing in the stable condition first then in the
variable condition if necessary. Gene testing is unaffected by the diet.
I hope this helps.
Let me know if I can clarify this further.
Feel free to post this on the list serve.
Yours sincerely,
Kenneth D. Fine, M.D.
Dear Dr. Fine,
Hello, it's me again. . .thank you for your time.
I just wanted to make sure we are talking about the same test here. . .my
husband's GI wanted us to get the Tissue Transglutaminase Stool Test.
Does that make a difference?
Sherri Miller
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Dear Sherri, The principle is the same. However, your doctor is basing
his request on what he is taught about blood testing where the last
antibody to form is the ttg and therefore it is the most specific, but
not the most sensitive.
If I was to recommend only one antibody it would be the antigliadin stool
test.
Yours sincerely,
Kenneth D. Fine, M.D.
Sherri Miller in Georgia, USA
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