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

Listmates,

Included are some responses to my question: how long should a gluten challenge
be in order to be effective?

Most said that two weeks wasn't long enough, and frustrated the biopsy.  Also,
it seems to depend upon your individual reaction and your sensitivity.

I also asked about not eating wheat on my challenge, and some felt that it may
be less effective due to the lesser amount of gluten in the other grains.  I
think I may have a wheat intolerance, as I tested negative for a wheat
allergy.  A new question: can celiac symptoms mimic a wheat intolerance
reaction, or do I just probably have a wheat intolerance?  I my case the
reaction includes throat constriction hours later, turning red during
consumption, enlarged belly and puffy skin, brain-in-the-bag, blurry vision
etc. etc.

I emailed a great letter with some snippets of responses as well as a question
about using the rectal challenge to my GI.  He only responded by saying I
could eat gluten for longer than his firm belief in the two to three week
challenge period, if I wanted to.

If you have questions, or more to contribute to this discussion, please email
me!   Below are some replies, the last one of which especially touched me. I
think because the advice to listen to your body's intuition is ultimately what
one needs to do to feel better, an affirmation which is sometimes confused in
the process of emotionally and physically draining challenges that so many of
us find our courage and will to live in.
Best wishes for good health!

Saskia

>>I was gluten free for two years and then had a gluten challenge for 9 days
before my biopsy.  The biopsy indicated subclinical celiac sprue.  The reason
I was gluten free was I was originally diagnosed with DH and just wanted to
know if I also had the internal damage, which I did.
By the way, the only intestinal symptoms I had were nausea and constipation.
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I have just seen the doctor and he wants to do a biopsy. I had returned to a
(YUCKY) gluten-containing diet for two weeks. He told me that he shouldn't
do the biopsy now because of the risk for an inconclusive or false negative
result. He told me to eat (a lot of) gluten for another four weeks (a total
of 6 weeks) before the biopsy. 5 slices of bread a day and pasta twice a
week. This way you will be sure that the result will be accurate.
BTW I dont' think barley or rye contains as much gluten as wheat, so this
might not be so effective. Oats won't be effective at all.
I would do as much as possible to ensure a reliable result. Two weeks gluten
is a little short. It might be possible to diagnose you this way, but there
is a risk of a false negative result (according to my doctor).
////////////////////////
My wife is an undiagnosed Coeliac. She will be doing a gluten challenge
in the summer as part of a study being done at Guy's and Thomas's Hospital
in London. She has been told to eat gluten for 6 to 8 weeks before the biopsy,
depending on how quickly the symptoms appear and how bad they are.

Some background: The lining of the gut, where the villi are, is constantly
renewing itself as a result of the food continually passing through. That's
why it's reckoned to take about 2 weeks to recover once you stop eating
gluten. How long it takes for the damage to show when you start on gluten
again must depend on how sensitive you are.

I suspect that your doctor might be confusing the 2-week recovery period
with the time taken to show damage. Perhaps you should suggest checking
with a specialist about this. I know it can be difficult to suggest things
to doctors!
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2 weeks is not long enough. my son's challenge was 6 weeks, and he had
overt symptoms but the biopsy was "inconclusive." why do you want to do a
biopsy? if you are not willing to make yourself sick enough to have a
valid biopsy, you should consider remaining GF without the test...in the
end, response to the diet is all that matters.
///////////////////
I always thought you needed a minimum of 4 weeks to get a proper test; in my
case I will have been eating gluten 8 weeks when i have the biopsy next month.
///////////////////
Both my enterologist and information I have read indicate that the villi can
restore themselves in about two months if there is not too much scar tissue
and if not subjected to gluten again.  This is what the biopsy is for - to see
the condition of the villi.  Flattened villie means celiac disease.  If you
have been gluten-free for a few months before the test, your villi may be
restored and the biopsy might read negative.   Your doctor's advice sounds
appropriate to me.  Good luck to you
//////////////////////
 my GI doc told me I should be on gluten for six weeks before biopsy. So I
never had the biopsy done. But then he'd already told me through other
testing I had only a two percent chance of being pure celiac, but that I
was gluten and lactose intolerant. He'd also told me it was not imperative
that I take the biopsy if I were going to live GF anyway. I'll be curious
as to what others say because I really don't know.
////////////////////
Well, everyone is different ... but, yes, I do think that it takes a while
to re-damage those poor little villi ... In my case, I was GF 3 months ...
did a 6-day challenge, barely got in 3-4 servings of gluten a day ...
[the gluten causes me to have seizures, so I was busy seizing
and/or post-seizure napping ... ]  And my biopsy was inconclusive.
My GI's words were "they were bent, strange looking villi ... but no
pattern of pure villi flattening" .... He's sent my snippets off to some
guru in NYCity ... so we'll see ...
In europe, I think the challenge standard is closer to 6 weeks ...
both my GI buy and I discovered this after the biopsy was
disappointingly neutral/weird ...
The other other thing that i've noticed, as has a friend of mine
who also went GF and then challenged, is that the recovery
didn't seem as zippy as it did the first go-round. Maybe because
it was more dramatic the first time ... I dunno ... I just know
that my butt really dragged for a good 3-4 weeks after the
challenge and the diarrhea, while intermittent, did persist for
about 6 weeks. .
//////////////////////
it depends on how bad the symptoms are. my son had a severe reaction after
only two days and even with that it had a severe destuction. you do have to be
exytremley careful of how sick you get.
//////////////////////
I was gf for 3 months before my first biopsy. Dr told me to eat 4 slices of
bread for 2 weeks before the biopsy. I didn't even feel sick after 2 weeks
- biopsy came back negative. Went to another dr, and asked for another
biopsy. Ate gluten in ever shape and form for 3 months. I felt very sick,
no colour in my face, multiple trips to the toilet etc... Second biopsy
came back negative also. the dr said I only had an intolerance to gluten. I
also had blood work done that was negative. Now, I'm sure I don't have
celiac disease. I just don't react well to gluten. Have been gf for 4
months and am almost  better. Have been following a diet by a dr about
eating right for your blood type. I am a type "O" blood type, and the first
thing it says for type Os is, avoid gluten and dairy.  Go figure.
/////////////////////////
Sometimes it takes longer for the challenge to work. Don`t be dissapointed if
the doctor tells you you don`t have Celiac Disease. It`s a shame that you have
been gluten-free for awhile ,as it does cloud the diagnosis. If you feel
better on the diet I would follow my own feelings whatever the results of the
testing.
//////////////////////>>