<<Disclaimer: Verify this information before applying it to your situation.>>
I'm often asked by fibromyalgia & IBS sufferers if I think they should
get blood tests or get an intestinal biopsy to "make sure" they do or
don't have celiac disease. I've answered these questions so many times,
I finally decided to write it all down in a form I could send to all
inquirers! Saves time. Here's what I've come up with. Use it if you
like and/or send me suggestions for improvement!
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If you've been eating the traditional western diet with 5 to 9 servings
of bread or cereal products a day, do the blood tests right away. But,
if you have been on a low carb diet or avoiding wheat & pastas because
they make you sick, you probably won't get accurate results. The problem
with the blood tests are that it takes months & months for enough of the
antibodies to build up in the blood to get a positive test. So if a
person has been eating low gluten diet for quite some time, the usual 3
to 6 week gluten challenge many doctors recommend may not be enough for
celiac disease to "show up" in a blood test. Then you may erroneously
assumes you are not celiac -- a very dangerous assumption.
Then there's the small intestinal biopsy which some doctors claim is the
"gold standard" for diagnosing celiac disease. HUM BUG! There are lots
of reasons why biopsies should not be called the "gold standard" for
diagnosing celiac disease:
(1)Celiac damage is very spotty in the small intestines. If the biopsy
"catches" the exact spot & is properly interpreted by a lab technician or
pathologist, then BINGO!...you have celiac disease for sure. But, if the
biopsy misses the spot, it's inconclusive so you're right back where you
started, not sure. I've heard that it can take as many as 10 biopsies to
get one positive result.
(2) Many lab technicians & pathologists do not know what they are doing
when they try to interpret the biopsy. From my reading, there's only a
few labs in the the country that really do it right. Most of them miss
it. If you've ever looked at pictures of biopsy slides in the celiac
websites & books, you will understand what the confusion is all about.
It all looks the same! However, if you check out some of the celiac
websites, you can find recommendations for labs that do a good job
detecting celiac damage, but that still doesn't solve the problem of the
GI specialist missing the exact spot!
(3) Another problem with relying on biopsies is oft times when
uninformed doctors see a negative biopsy, they erroneously tell a patient
that they don't have celiac disease & that they don't need the GF diet.
Then the person goes on eating a little gluten here & a little gluten
there & does untold damage to their internal organs & immune system.
(4) Another reason to not rely on biopsies & is that celiac disease is
NOT the only disease caused by gluten sensitivity. There are many
diseases that are caused by gluten sensitivity without intestinal damage:
diabetes, arthritis, Lupus, MS, schizophrenia, bipolar, anemia, etc.
Please don't misunderstand me, not all cases of these diseases are caused
by gluten, but many are.
(5) Biopsies are an invasive procedure that carries certain risks. I
know of a child whose lower esophageal spincter was permanently damaged
by an edoscope. Now the child will have to suffer esophageal reflux for
years to come. Of course any GI doc will tell you the risks are very
small & that it's a very safe procedure. But, I think you know what this
child & her parents would say if someone asked them if biopsies are worth
it.
(6) Non celiac diseases can cause flattened villi. Milk allergies, soy
allergies, bacteria overgrowth, and almost any diarrheal condition will
cause flattened villi. So how did flattened damaged villi get to be the
gold standard for celiac disease?
I had all the blood tests done. I had the biopsy. My sons & I all
received negative results from traditional tests. But all three of us
are undoubtably celiac (four doctors agree on this) and our many health
problems didn't begin to resolve until we all committed ourselved to the
GF diet. Knowing what I know now, if I could start all over, I'd skip
the stupid biopsy! It's not worth the hassle & risks. (It's not
painful, though.) If I were you, I do the blood tests just to see what
you get. If your blood shows gluten sensitivity, the you need to do the
Gf diet. But, if the tests results are negative, commit to a perfect
trial of the gluten free diet. If you feel better off gluten, they you
stay off gluten. If you don't feel better, then you're probably not
gluten sensitivity or you need to give up another food such as milk, corn
or eggs to get well. I couldn't have succeeded on the GF diet without
the help & support of the St. John's celiac list.
http://www.enabling.org/ia/celiac/ (This website might be where I read
about the recommend labs.)
Of course, to add to the confusion, [is your head spinning yet?] some
people with celiac disease have no obvious symptoms. But those are the
people who probably eat the standard western diet, so blood tests will
probably confirm their gluten sensitivity. However, I doubt you are one
of those "silent celiacs" or you wouldn't be asking for this advise!
I want to clarify here that there is ONE reason to seek an official
diagnosis of celiac disease through tests. Some people will not be
convinced they need to follow the gluten free diet unless they are
ordered so by a doctor. In that case do whatever it takes to get the
positive test. One of my sons failed the traditional tests for celiac
disease, and I knew he wouldn't stick to the GF diet unless a doctor
ordered it. So I ordered the more sensitive tests from EnteroLab [
http://www.enterolab.com ] and he got a positive results that way. That
convinced him & he has experienced truly miraculous improvements in his
health by following the GF diet. ~Hugs, Valerie in Tacoma, WA
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