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

12) I so understand your desire to get to the bottom of your problem
and "prove" your illness, but here is our experience with intentional
gluten challenge.  Please rethink your options.

Our daughter, a 22 year old A honors nursing student, actually got hurt
because we did not know that there were different points of view regarding
gluten intolerance versus celiac disease.  We tried to fit her into the
celiac box with a gluten challenge when actually she probably is in a
different subset of gluten intolerance.  (We already knew she can't
tolerate gluten from 8 years previous experience, but she wanted a
diagnosis and thought for sure she'd get it if she just did a gluten
challenge.  She had been of major wheats for 8 years, and then another 6
months strictly GF after she found out about the strictness of the diet.
Then she ate gluten about 4 times a day for 4-6 weeks. She not only was
miserable digestively, but she went into what looked too much like bipolar
or certainly a severe depression, as a result of the challenge.  She went
back to the GFCF diet after the testing was finished, but for three months
was not herself at a! ll. She now says it was a horrible thing to do, and
those 3 months were the worst of her life.  She made a obvious positive
turnaround 3 months later only after we changed the weekly communion loaf
at church to gluten free.  And she didn't get her Celiac diagnosis after
all that.  Apparently she falls into a different type of Gluten Intolerance
than the villi damaged celiac subtype.  Frankly by the time we had the
communion loaf changed I was terrified!  She still has to be very careful.

I realize you are trying to diagnose another problem associated with gluten
intolerance and totally understand why you want to validate your need to be
on this diet, but if you have been off gluten for any longer length of
time, it might not be safe.  The final validation of the diagnosis even
after biopsy, is still positive response to the diet, and you already have
that.

I know another woman in a support group who had many classic celiac
symptoms all her life, and then had a quick and dramatic turnaround on the
GF diet.  After experiencing such a remarkable change in her health she
later went back to a doctor who scolded her for doing "an unnecessary
diet".   She felt so bad about his comments that she doubted her clear
improvement, and gradually slid back into a gluten containing diet over the
next year.  But by the end of the year, she was so sick she was
hospitalized and by her own admission, she was "crazy", meaning not
rational in her mind.  It took 6 months back on a strict GF diet  to be
able to go back to work part days.  Now she is battling miserable multiple
food sensitivities and thyroid cancer (she's had it removed).  It's such a
shame because initially she had excellent success with the GF diet.

Please, be careful.  If you challenge at all, don't let it be very long and
be on the watch for problems.  Neurological symptoms aren't always easy to
fix once they appear, and often the patient is in denial at that point and
doesn't cooperate.

I hope you can figure out your problems safely.

I've attached a 1 sheet, both sides piece I've put together explaining this
and have been in toucvh with many well known names in the gluten intolerant
community regarding it.  I have other pieces which you are welcome to ask
for if you like.

13) I saw your post on the celiac list and I have some information for
you.  I'm sure a lot of people have advised you not to intentionally
consume gluten.  It could cause further irreversible nerve damage.
Personally, I doubt that one day's consumption would show up anyway.  The
first article above is very readable and has a lot of information.  You may
get more info from the other two, and it would be a good idea to give them
to your doctor.  You can also email Dr. Hadjivassiliou.  I have a friend
who emailed him once and he did answer.  His address is:
[log in to unmask]

I also have neurological problems from gluten.  Mine is mostly sensory
nerve damage, although I had some ataxia at my worst point, so I know what
it feels like.  I also know how important it is to feel "believed" by your
doctor.  Can you tell me a little more about your history with ataxia?  Do
you have celiac disease?

14) I have been disabled because of dizziness believed to be caused by
Gluten Ataxia as I was diagnosed with Celiac 4 years ago.  I had improvement
after 2 years on the gluten free diet.  I am now working part time which I
started in June 2004.  I have had many MRI's because of a benign
ganglioglioma in the temporal lobe of the brain discovered and removed in
1999.  They have also recently found a focus on the pons of my brain which
they believe is contributing to some of my symptoms.
It is my understanding that Gluten Ataxia occurs in the cerebellum
of the brain and the damage does not enhance(show up on CT or MRI scans).
Recently, however, studies by Dr. Hadjivissiliou in England do offer hope
that the damage may show up on MR Spectroscopy which is experimental in
Rochester, New York.  I do know some other ataxia sufferers that have
lesions on the outer edges of the Cerebrum that show up on scans.  They
haven't disappeared even after going gluten free so the significance of them
is unknown.
I'm not a doctor,  but from the information I have gleaned from many
journal searches,  the Cerebellar Ataxia probably won't show up so there is
no benefit to poisoning yourself for this scan.
Good luck and I wish you good health.

15) I have a very good friend who is a neurosurgeon and I am going to call
him and ask him about that.  Maybe he will know. I got your answer from a
neurosurgeon.  The answer is no, you cannot see that on an MRI.

I hope this helps you.  Now you don't have to ingest any gluten and make
yourself bad again.

******************************
Thank you again for your wonderful replies and support.  I feel so much
stronger after hearing from others with this condition.

I'll post the results of the GF MRI as soon as I have them.

Kind regards,

Nancy in Boston

* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *