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First of all, thanks to all of you for your kind words regarding my
cousin. It was greatly appreciated. I was surprised about the
responses I got regarding the x-ray. Most people said it was the way
for diagnosis, but a few had x-rays when diagnosed. This surprised me.
This summary is rather long. I apologize for that, but I wanted to post
most of the responses for those of you who have ever questioned this.
Many people recommended Dr. Fine's study.
Summary:
1) They cannot see anything on an xray. They have to biopsy and look at
it under a microscope. Go to another GI doc. Here's some info on testing
methods: -vance
*Info was long, let me know if you're interested and I can forward
2) I know one celiac who was diagnosed by a SMALL BOWEL FOLLOW THROUGH
(essentially an X-ray). Joe Bradley
3) As to the xray - well, they did a thing on me called an
"enterocolysis" (spelling questionable, so is the term, not sure I have
it exactly) - anyhow they put a tube up the nose down thru the tummy
into the duodonum ... then they pump barium through it all the while
taking xrays. They have tilted the xray table up so that you are at
about a 45 degree angle, head up. They all go at a dead run, all the
while taking fotos - I found it interesting to watch - and my intestines
were as smooth as PVC pipe! Definitely NOT the way they are supposed
to be! Then, they finished, I threw up, and went home. I was too sick
to begin with, but it wasn't that bad a test ... with 5 grains of
vallium in me! :-)) Anyhow, this is a line of inquiry
you could pursue - that test was done on me in 1994.
*I asked her if this was how she was diagnosed and if she ever had an
endoscopy. This was her response:
It was an interesting sequence in my case: my doc sent me to get blood
drawn for yet another test, then called her gastro friend who said to do
such and such blood test, but since the draw was done, ... they decided
to send me for this enterocolysis thingie - yes, that was a positive
sign of CD - then he did the blood test, and the endoscopy - then
another endos. after 6 months GF. A bit overdone, no? They called and
told me I had sprue after the entero. Go figure on docs. I was too
sick to argue.
4) Hello. I was first given an x-ray which did show intestinal damage.
Then was sent to a gastro for more detailed study. Neil in PA
5) An X-ray was the first test on the way to diagnosing my daughter's
CD. She did have subsequent blood work and a biopsy. The x-ray showed a
swelling in the loops of her intestine. This is what lead to further
testing an is what put CD on the list of possible culprits. From the
x-ray they could not tell what had caused the swelling. Knowing what I
know now and I did not know it then, I can only assume that they could
not see any damaged villi. So, as an actual diagnostic tool, it was not
accurate for us. But, as a tool that lead us to the right tests it was
great. Francie Kelley Austin, TX
6) Many years ago a GP diagnosed celiac from my symptoms. There were
no blood tests at the time and he sent me for a small bowel series. It
was believed then that the "emptying time" was somehow diagnostic of
celiac. I do not believe anyone uses this as a diagnostic tool anymore.
If nothing else, it was useful as a method of ruling out other
growths, etc. which might have been missed as a cause of symptoms. This
GP was very astute.....didn't know to order a biopsy prior to placing me
on a GF diet, but did listen to me and made the diagnosis on the first
visit which as I have since learned was pretty amazing. Years later I
saw Dr. Green who convinced me to have a biopsy even though I had been
carefully gluten free for many years and he confirmed the diagnosis
since some of the damage had not healed completely. Since then 3 more
members of our family have been diagnosed by biopsy. Hopefully your
father can find a more up-to-date doctor.
It is very sad to feel that perhaps better management/knowledge might
have made a big difference in someone's life. I believe my father was
celiac and never diagnosed.....he ended up with major nerve problems
which caused him misery in the last years of his life.....we know today
a common occurrence in undiagnosed celiac. I wish you good luck.
Carol in NY
7) X-rays are totally useless for diagnosing CD. So is that doctor. Tom
8) My husband has seen many doctors, and not one has suggested an x-ray
for diagnosis. My son recently had three blood tests, and an x-ray was
never suggested. Hope this is helpful. Barbara
8) No, I've never heard of xray being helpful in celiac diagnosis.
Sounds like a nutty idea. The reading tells of the bloodwork and biopsy
as being the only way to be sure. My sister's doc told my neice there
WAS no blood test for celiac. He put her through stupid, unrelated tests
(which MY doc said would be negative upon hearing my frustrated tale,
and he was right) and then finally gave my niece a referral to a gastro
doc with the notation on it: Probable diagnosis of celiac disease. At
that point he didn't want to look stupid to the specialist!
9) I GAINED weight, 60 pounds, after my Celiac reared its ugly head. My
PCP knew that was a symptom, but the first gastroenterologist refused to
test me until I badgered him so badly he tested me "to prove you don't
know what you're talking about".
Yes, he did apologize. I fired him anyway :-) GI doc # 2 did a small
bowel series for transit time. You drink the barium and they time how
long it takes until you start pooping it out (like that official medical
word?;). I would be very hesitant to trust this doc if he/she simply
orders a non-contrast study (a plain old garden-variety XRay) and
pronounces your dad OK. If you want details or have questions, you can e-
mail me any time. Kathy, RN and RT (XRay Tech) Middletown, CT
10) Any Dr that thinks he can find or see celiac in a xray is so
mistaken. Uninformed or down right stupid. One can weigh 400 lbs and
have celiac disease. I have a son who when in the Air Force got sick
from the food and was discharged he went to a private dr who took an
Xray and said no celiac here . I have two daughters whose stomachs have
been stapled and the one asked for a biospy and was turned down. Both
are mentally ill now,I wonder when Drs will grow up and get with it .
Have your Dad demand a biospy or do the Dr Fine diagnosis on
Enterolab.com and do it at home Lil
11) You can't diagnose CD with an x-ray. It has to be done by blood
work or stool collection or biopsy. If you would go to
www.finerhealth.com you will find a wealth of information on all of the
autoimmune diseases that could be related to CD. Dr. Fine is the
researcher who is our medical advisor here in Dallas. Can't help with a
doctor in Memphis but maybe someone of the list will be able to help
you. If you have to look until you find a good on that will listen, keep
looking. Good luck, Ann in Dallas.
12) The gastro your father is seeing sounds like a total idiot. Xrays
are of no use whatsoever in diagnosing celiac, and ANY information, even
outdated information, should tell him that! Xrays cannot visualize the
lining of the intestine! Blood tests and/or biopsies are needed, or some
of the newer tests being done by Dr. Fine's group. His assumption that
celiacs lose weight is a more common mistake, but it is still a mistake.
Celiacs are just as likely to be overweight as underweight or normal in
weight. He's one of these medical fools who wants somebody to reach
crisis level damage before bothering to intervene. I had a doctor like
that; he literally wanted to wait until I sick enough to be hospitalized
before even testing me for my problems. This mindset makes me intensely
angry. I fired him and went to a doctor who did something for me before
I reached a state of total collapse. I'd like to get my family members
tested too, as many of them, especially my father, have chronic
digestive problems, and several also have asthma, thyroid problems, and
diabetes. They are completely resistant to the idea, because it could
mean giving up a diet of pizza, sandwiches, and junk food. My mother
actually got angry at me and said my dad had enough problems without
celiac disease! The concept that finding out if he did have it, and that
treating it could solve many of his problems if he was celiac, went
straight past her. He could enjoy what remains of his life so much more
if that could be done. All they see is the difficulty of the diet (they
really do live on junk food) when I visit from out of town; they don't
realize, as my husband and friends do, the vast improvement in my
health, although they keep telling me how good I'm looking these days.
Bobbi in Baltimore
13) Forget the doctors and visit www.finerhealth.com and
www.enterolab.com and www.intestinalhealth.org I too have silent
celiac, thyroid and now dermatomyositis and it almost cost me my life
twice. Just get tested using the new "stool" test. Also Dr. Fine can
do a celiac gene test. This will put your worries to rest. If you have
any questions, please feel free to e-mail me. Best of luck Elaine
(Areally bad case of undiagnosed celiac).
14) An x-ray as a diagnostic tool for celiac disease? What would the
x-ray? What would it tell them?? Nan Burket
15) If I were in your shoes I would have him send the stool sample to
Dr. Fine for ananlysis. THEN, if positive, I would say go back to the
strange doctor with the facts, OR find another doctor. I think it costs
about $100.00, and it would be well worth it, insurance or not... Anne
in Texas
16) Sounds like this gastro guy doesn't know much about celiac. BUT, he
may want to do an X-ray to rule out other things such as a blockage,
tumors, etc. If that was my dad, I'd go with the exrays, but I'd also
move heaven & earth to get him to do the EnteroLab tests for celiac.
They are faster, safer & much more reliable. With the EnteroLab stool
tests you will know within a few weeks if he is or isn't celiac. With
traditional medicine, it can take years. See: http://www.enterolab.com
Valerie in Tacoma,WA
17) X-rays were used to screen for celiac BEFORE blood tests were
available. The new premade barium used as contract makes this test not
so good. The barium drink in the olden days tended to settle
out/separate & give better picture than today's ready- to-use/premixed
barium. Doctor has outdated info & you are correct in looking for
another. Testing for fecal fat would be an appropriate test, however, &
this was usually ordered along w/ the x-ray. You can find more
information on "Diagnosis & treatment of celiac disease" at
www.celiac.com. Bev in Milwaukee
17) I am sorry about your cousin. I had a grandmother who died before
I was born. I found out that she died of cancer of the stomach and
intestines. My dad also remembers her being depressed a lot. I don't
know if she had celiac, but it is possible. We'll never know for sure.
Anyway, I was diagnosed with celiac in 1974. I remember my parents
telling me that they took a lot of x-rays. I don't know if that is a
good idea or not--back in 1974 the technology wasn't as up-to-date as it
is today(of course). I am also not sure what they can see from x-rays,
but I guess it must be something. They also performed 2 biopsies. The
second one was to confirm the diagnosis of celiac. Hope this helps.
All I can say is that they used to take x-rays as part of the diagnosis,
but I don't know if that is standard practice today. Just wanted to
share this with you. Good luck, Carrie
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