<<Disclaimer: Verify this information before applying it to your situation.>>

I'll start with my usual warning:  I am not a medical professional, I
am a parent with two celiac children.  So take what I say with a grain
(er crystal) of salt...

First and formost:  You cannot get a diagnosis of celiac disease if
you have been on a gluten-free diet for a while.  How long?  It varies
from person to person and depends just how much damage there is in the
villi of the small intestine.  For some people, even a few weeks on a
gluten-free diet might be long enough to "mess up" the tests.  To
diagnose celiac disease you have to do a biopsy and find damaged villi;
if your villi have already healed due to a gluten-free diet then no
damage will be found.

So if you want to get an "official" diagnosis of celiac disease (which
I STRONGLY recommend; see Nancy Lilly's post of Oct. 21, 1996 for a
long list of good reasons), then you should NOT start a gluten-free
diet first.  Keep eating gluten until after the biopsy (at least), or
preferably after the biopsy results have come back and you are told
that you do have celiac disease.

Dr. Joseph Murray had this to say in a post to the list in March: "I
believe (based on seeing many people with suspected celiac disease)
that it is really important to get tested for CD BEFORE going on a
[gluten-free diet].  It is hard to interpret the biopsy, the blood
tests are unreliable, and the patients are often faced with the very
unpleasant task of a prolonged gluten challenge to verify diagnosis."

So why am I bringing all this up?  Here are some excerpts from recent
posts to the list:

1> ...I am unsure whether to re-consult my doctor....try the 3 (6?)
1> week exclusion diet suggested for Celiacs...

2> ...The dermatologists that have examined me diagnosed granuloma
2> annularis - without any testing....I have just learned about DH/CD
2> and started to maintain a gluten free diet.  However, I am in
2> desperate need of a knowledgable and sympathetic physician capable
2> of proper diagnosis.

3> ...I keep reading that I will need to be on a gluten diet for a
3> month to get good results.  Unfortunately, I have been following
3> the GF diet for 20 days, with 2 relapses....I am wondering what the
3> blood test will show?...I found some canned gluten in the Chinese
3> grocery....and I was wondering if I were to eat a few cans of this
3> on Saturday/Sunday if I would have the IG-response by Monday (to
3> assure a good test)

4> ...In the meantime I am pursuing a GF diet and feel marvellous as a
4> result.  I know I will have to go back on to a normal diet before
4> having the biopsy but can't face it at the moment.

Everything I've read indicates that when you go on a gluten challenge,
it takes a lot longer than just a few weeks.  Dr. Peter Green, while
speaking to the Westchester (New York) Celiac Sprue Support Group last
September, indicated that it can take three to six MONTHS or longer on
a gluten-containing diet to secure a biopsy-proven diagnosis.  In a
post to the list on May 8, 1996, Dr. Murray wrote:  "There have been a
number of attempts to put Celiacs in remission back on a gluten
containing diet (also known as challenge).  The length of time to
relapse varies enormously from weeks to years and may or may not be
associated with the same or even [any] symptoms."

If you only go on a gluten diet for a few weeks and then get tested,
you really can't be sure of what negative test results mean.  It could
mean that you are not a celiac.  It could also mean that you ARE a
celiac that is not yet showing the effects of the gluten.  If the
doctor performing the tests is unaware of how short your gluten-
challenge was, or doesn't realize how long a gluten-challenge should
take, then he/she may incorrectly conclude that you are not a celiac
when in fact you might be.

Here are some excerpts on this issue from a post made by Dr. Murray in
Sept. 1995:

--===----===----===----===----===----===----===----===----===----===--
Date:         Wed, 13 Sep 1995 10:30:18 -0500
From:         "J. Murray" <[log in to unmask]>

Not medical advice

There are not hard data on this and [there are] differing views.
I usually practise the following in adults.

Have the patient take a small test dose like one wheat cracker for 2 days
or so.  Then if there has not been a horrible or dangerous reaction have
the patient gradully increase the intake of gluten over several days to
get to a dose of 3-4 wholemeal slices of bread a day.  This is continued
for 2-3 wekks if the patient has developed classic GI symptoms Diarrhea,
bloating etc.

If the patient has not developed any symptoms at all then I continue the
diet for 3 months and check the antibody levels.  If these are positive
then I biopsy.  If the patient is asymptomatic I continue the diet for a
further 3-6 months and repeat the antibodies.

The tricky bit is where the patient developes atypical symptoms.  This
situation needs to tailored to the individual case.

A challenge must be discussed in advance with the doctor who must be kept
updated on the advent of any symptoms.

Too short a challenge or too little gluten may make it difficult to
confirm the diagnosis.
--===----===----===----===----===----===----===----===----===----===--

If you are awaiting tests for celiac disease, my advice is:  DON'T
start a gluten-free diet.  If you have already been on a gluten-free
diet for more than a few weeks, and have tests for diagnosing celiac
disease scheduled, I think you should get them postponed.  In the
meantime, go back on a gluten diet.  Wait until you have symptoms
reappearing or until six months have passed, and then schedule tests
for diagnosing celiac disease.  That way you'll have a good chance of
getting a correct diagnosis.

Remember, I am only a layperson.  Pay more attention to the quotes
from Drs. Murray and Green than to my own opinions.

Jim Lyles ........ <[log in to unmask]> ........ Holly, Michigan, USA