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How very interesting, Gayle!  Do you know if damage is occurring, even though
you are eating normal food?  How did you learn about the Chinese acupuncture
and it's relationship to Celiac Disease?  I'd be interested to learn more or
resources I could investigate.  I'm 72, diagnosed 12 years ago, after
misdiagnoses and unnecessary hysterectomy to cure severe anemia (which it
didn't, of course).

Have you had a follow-up biopsy?

Interesting message.

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  I don't take those twin studies (about one being celiac & the
other not) very seriously because:

(1) even "healthy" biopsy positive celiacs can be asymtomatic for years &
years on a general diet while the disease quietly & secretly destroys
organs

(2) biopsies are a hit & miss proposition with many false negatives.

[Both very important points - and ones that I considered long and
hard before sending the original message...and before returning to
some gluten in my diet.  The possible inaccuracy of biopsies is
sometimes forgotten. GK]

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I am 1 year cd diagnosed after five years of symptoms,
34 years with thyroid disease (hyper, then hypo from
partial thyroidectomy). I come from a long line of
family with autoimmune-related diseases (my father
died from type 1 diabetes, his sister from lupus), and
this year I have had vitiligo and psoraisis appearing
on my skin. I am just 45, and my almost 11 year old
daughter has just been diagnosed with hyperthyroidism,
and I suspect an atypically presenting cd as well.

I'm responding to Gayle's email on accupuncture for
two reasons, really.

One, I would love it if accupuncture could cure me and
mine. I use acupressure all the time to control my
neck and back problems. It would be great if
acupuncture would keep my daughter off heavy duty
thyroid-suppressant drugs with scary side effects (I
have an adult friend trying acupuncture for
hyperthyroidism).

  Two, I've been looking at all of these related
diseases in a more sinister way. What if diabetes and
thyroid disease were related to wheat eating? They are
closely linked to celiac disease. If gliadin can
affect skin (DH), and it may be affecting people who
are testing negative for cd in biopsies, and cd shows
up with atrophied villi in people with no symptoms,
could gluten also affect other organs (the pancreas,
the thyroid) as well? Scientific research is not over,
new discoveries are always happening, and our
pill-based medical establishment is so blind to new
thinking.

Or, what if eating gluten, gliadin, or some smaller
bit of undiscovered wheat-based molecule is what
causes our immune systems to go haywire and attack us?

Or what if it isn't? So many of us become
hyper-sensitive to other things after going gf. I have
never had allergies; this month I've had three intense
bouts of puffy, itchy red facial and arm skin. My hand
has white vitiligo patches that seem to grow
overnight, then do nothing for months. (My observation
is that when I have a gluten accident, the patches get
bigger, but I haven't actually drawn lines on them to
test it!)

     Is my immune system, hyped to attack, looking for
new enemies now that I am gf? How did it get hyped in
the first place?

     What if accupuncture is a way to calm down the
immune system? Does it really help? Does it help
people with diabetes, lupus, thyroid disease?

     Gayle, did it really help you? Or is it masking
your symptoms only, with other, silent damage
happening as you eat wheat?

I admit, I'm scared. All my adult life I knew my
lifespan may be shortened from genetic inheritance, I
am inured to the idea. But my baby girl? What am I
supposed to do to help her, and who am I to believe?

Do I take her off wheat (miserable for a kid entering
puberty, when she does not have a definite diagnosis).

Would taking her off wheat help, or heighten her
sensitivities? Do I take her to an acupuncturist (she
is afraid of needles!) Do I put her on medicine that
has been known to destroy liver function? Do I leave
her mildly hyperthyroid, since she shows no outward
symptoms? Do I just stay in bed tomorrow morning? Do I
apply for med school (sometimes I know more than they
do!)

By the way, this listserv is wonderful, thank you to
this whole community for the daily support you give.


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I was wondering if you had ever been trained in the scientific method?
I think what you did was admirable.

However, I do have some questions about your process.

Before you tried accupuncture, did you try a gluten- challenge and
verify it with a serum antibody panel?

Before you started accupuncture did you verify your gluten-free
compliant status at that time with a another serum antibody panel?
Have you has a serum antibody panel performed since your recovery from
CD due to accupuncture and after a two week period of gluten ingestion?

I think that data would have added a little credence to your report.

[I've never had any scientific training.  A degree in philosophy of
art is hardly a qualification for looking at medical problems!
Teaching junior high school English for ten years taught me to be
patient. ( Perhaps that was the stress trigger that brought celiac
disease to the surface...only kidding...)  Maybe my good education at
Cornell taught me to reason.  I hope so.  It never occurred to me to
do a pre-test or a post test.  I did not expect acupuncture to work
on my celiac problem. And I did not expect to be a guinea pig...
This is not scientific - it's just empirical evidence.  GK]