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To the whole list:  The responses from this LIST have been coming in
at a great pace.  I have been sending individual responses, and will
now just forward the important parts of each message, as I do not
have time to edit and clip and fuss over each one a second time.  I
hope you will find this thought provoking and worth while.  The whole
purpose of my original message was to try to ask a couple of open
ended questions and start us thinking in a new direction.

[log in to unmask]

I remember your name.....  You are good at asking questions with no easy
answers, and then other list readers interpret your comments and musings
into all kinds of theories.  I remember the posting about the
acupuncture.  Since I have used acupuncture successfully for 3 or 4
problems, and know a good acupuncturist, that posting caught my eye.
The easiest guess is that she has never had a biopsy, so it is not as
clear if she really has celiac disease, or perhaps a serious wheat
allergy.  I still am not sure that any one doctor has it all 100%
correct in being able to diagnose any cd problems.  One thing for sure,
I have less overall confidence in all my doctors when it comes to cd, no
matter what their specialty.

And least of all in the gastroenterologist that I have settled for.  So,
if your ideas turned out to be right in some cases (all cases would be
too much to expect) you can be sure there won't be any medical
authorities jumping on this band wagon.

So sit back and let it rock and roll.  I suspect we are in for a few
outspoken opinions to start erupting.  I look forward to your summary.
As usual, your letter

[log in to unmask]

I am keeping your email.  I really believe this needs to be looked at
more in depth and I know there is someone near me that can help.  I get
DH as well as CD and have had a lot of relief from from Asian medicine
as far as the skin goes.  The most important thing with any disease is
keeping an open mind and exploring anything that can help.  I am so
thankful for this forum where we can do just that.

[log in to unmask]

  I certainly would not argue that you did not have celiac, but there
doesn't seem to be any real evidence of this from your post. From
your symptoms you could easily be just wheat intolerant, which is not
celiac. Certainly I would agree that anyone who becomes sick when
they eat wheat or gluten should not eat it. We do not need any doc's
permission to eat GF if it helps us. On the other hand, absent any
reliable testing, I would hesitate to say you were celiac and "cured"
by NAET accupuncture treatments. However, I do believe your
experience might be a valuable one for others on the list, especially
those who may be wheat intolerant or allergic rather than celiac --
which I think a substantial percentage of the list members may be. Or
not :)  Still, I'm not convinced that a true celiac should begin
eating gluten again simply because they no longer have reactions to
gluten.

I'm certainly not suggesting what you should do in any way, but
unless I had tested positive for celiac I would certainly hesitate to
tell other celiacs that the treatment had cured celiac, or "turned
off the trigger." Though I'm a great believer in the value of
traditional accupuncture for those things it is good at (which would
not include NAET, however). I would also hesitate to argue that such
a thing is impossible. I'd just want much more substantial evidence.
Best wishes, and I hope you continue to fare well.

[log in to unmask]

This is certainly worth a try!  I now receive acupuncture treatments
every week and would like to apply the specific therapy you received.
  Can you give me the details of your treatment?

[My treatments are called NAET - there's a web site.]


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Very thought provoking letter......you reawakened some interest I had when I
read the first posting.

Do you know in fact that you carry the genes thought responsible for celiac?
That would be most interesting to know and you might begin an overhaul of
celiac thought.

Though my blood has been drawn for many studies because in our family we
are 4 celiacs out of 7 (mother, 2 daughters and 1 grandchild--and all
female), no one has ever given us any results of genetic testing.  I
have thought of trying Dr.  Fine's test since I read recently that some
researchers believe it is sometimes a combination of different (not
identified) genes that result in celiac.  Are there not biopsy-confirmed
celiacs that do not carry the common genes believed responsible for
celiac?  I thought I heard this at a conference.

Years ago (pre-celiac awareness) I went for acupuncture because I had
problems with diarrhea and also menopause.  I felt I had good results with
the menopause but not with the diarrhea symptoms.  The diarrhea is is still
a problem that comes in cycles and I believe now unrelated to my diet.  The
last time I had this problem I had lost considerable weight and was
re-biopsied.  The biopsy showed no increased damage to the small intestine.
So, I am left with no answer.

Interestingly, the acupuncture doctor was from China and she told me in
China she had practiced western medicine but here she was now practicing
eastern medicine, though she had used acupuncture alone for pain relief when
delivering babies!  I found that amazing.

I believe we will see many advances in the next years regarding cause and
effect of CD.  I don't mind the deprevations of the diet so much, but I
would like to feel well.

[log in to unmask]

Very interesting. It makes sense to me that a trigger that can be
turned on can also be turned off. And how would you know you were not
celiac anymore if you just stayed on a gf diet and did not challenge
and re-test.

You didn't mention whether you'd had a biopsy or bloodwork since you
resumed a gluten diet. I would love to know (and I'm probably not the
only one, so feel free to post to the list, not to me) how you were
originally diagnosed and what testing (if any) you've done to confirm
your new status as a healthy gluten eater.

Thanks for a thought-provoking post. I'm sure you'll get plenty of
negative feedback, and I personally will take the conservative
approach, but I wanted to send you some positive feedback as well.

[I have had bloodwork since returning to a gluten containing diet.
Very slight elevation in only one test.  As my symptoms before going
gluten free and anytime I accidentally ate something that contained
gluten - before the acupuncture treatment -  included something that
can only be called schizophrenia, I have never been willing to return
to a gluten-containing diet in order to have a biopsy, and as I have
no physical nor mental symptoms now, after acupuncture, I see no
reason to put myself through the test.  My doctor is in complete
agreement. GK]

[log in to unmask]

I found your post fascinating.  I agree that more research needs to
be done -- though I don't think celiacs should use their own bodies
as guinea pigs.

I'm curious about your statement that you don't have active cd.  Has
this been documented with serial biopsies and blood work or is it
merely a lack of symptoms?

[I'm in my 70's, and tried acupuncture to eliminate other allergies,
but the acupuncturist eventually said she could also eliminate my
celiac problems - and I let her give it a try - I was (and am) amazed
by the result.  I realize the dangers of being a guinea pig, but at
this age - why not?  My son, who has a young family, is now NOT
reacting to gluten after similar treatment, but has chosen to still
eat gluten-free. I agree with his choice completely. However,it does
make that once-in-a-while accidental ingestion a whole lot easier!
GK]

The reason I'm asking is that my husband had "full blown" celiac
disease in that he had total villous atrophy and never had any
symptoms.  He also had sky high blood values.  But not a single
symptom.  The only reason he was diagnosed was because we did the
family screening after my youngest daughter was diagnosed.  My older
two girls also had positive blood tests but inconclusive biopsies.
They were completely asymptomatic as well.  Since such a thing can
happen (intestinal damage with no symptoms) is it realistic to feel
that you can escape the threat of cancer and malabsorption issues
without any real proof (as in biopsies and blood work)?  I don't know
if my husband would have eventually developed symptoms or not.  Maybe
he would have just developed lymphoma from having untreated cd like
his grandfather did.  I know there are people out there that have
symptoms but no demonstrable damage -- sort of the other side of the
same coin.  I wonder if those second twins went on to develop cd at a
later point....

Anyway, I did enjoy your post.  You have raised some intriguing
ideas.  If you get a chance to respond to my e-mail, that'd be great.

[log in to unmask]

I do not think it is possible to reverse the trigger.  First, I've heard that
one of these triggers seems to be HOW EARLY A CHILD IS FIRST EXPOSED to
gluten.  Infants who are breastfed longer and given their first wheat later
seem to be less at risk of developing the symptoms of CD even if they have
the HLA (genetic) factors which predispose.

CD is an autoimmune disease which means that the gluten protein (gliadin)
triggers B cells to "accidentally" make antibodies against the villi because
the villi and gliadin have similar chemical structures--the body can't tell
the difference between self (the villi) and non-self (the gliadin).  The
antibody is directed against the part of these two structures which is
similar.  Once you have these memory B cells against gliadin & the part of
the villi that "reminds them of gliadin", you can't get rid of them.  They
stay in your body for life.  I don't think acupuncture could solve the
problem.

[There seems to be evidence that if a woman is nursing a baby and the
mother is eating gluten, the infant with gluten-sensitivity
(celiac/allergy...) will have a negative response.   With regard to
the second paragraph, my memory B cells seem to be hiding - I hope
they stay hidden! GK]