In a message dated 8/21/02 11:09:36 PM, Susan Carmack <[log in to unmask]
writes:

Hi Paleopals,
>but studies find an incidence of
>around 1:150.

Dr. Mercola suggests that incidences of celiac may be closer to 1 in 10:
http://www.mercola.com/2000/mar/5/wheat_intolerance.htm

Paleobest,
Susan
--------------------
Paleolistmates,

Quite a variety of numbers about the incidence of Celiac Disease has been
batted about here on this list in the last few days. I think that this number
is going to be very dependent on one's definition of Celiac Disease, and the
criteria one uses to establish a diagnosis.

As recently as only 10 or 15 years ago, there were no blood tests for CD, and
few people ever would have had an invasive intestinal biopsy done routinely.
Now, we have a series of 5 blood tests, and most doctors feel they are very
accurate. Despite this, it is still estimated by some that up to 20% of those
tested will be negative on all blood tests, and still test positive on
biopsy, which is still considered the "gold standard" for diagnosis. Now we
arrive at the very gray area! What is the difference between Celiac Disease
and gluten intolerance/sensitivity? That is the $64 K question!

I had years of mild irritable bowel syndrome, outbreaks of what appeared to
be Dermatitis Herpetiformis, (an intensely itchy, blistery skin rash,
considered a definitive marker for CD), Fibromyalgia, CFS, and worst of all,
more than 13 years of bipolar disorder that was so profoundly severe, no
words could come close to describing its horror. When I had bloodwork done
for Celiac, 4 out of the 5 tests came back negative. I had an intestinal
biopsy done, which was also negative. I did not test positive for any
nutrient deficiencies (except Vitamin D) which are so common in Celiacs, due
to malapsorbtion. I was seeing a Celiac specialist, and I asked him, "Do I
have this damn disease or not?" His answer was, "Do you feel better on a
gluten free diet? Then don't eat gluten!"

So, as I've mentioned many times before on this list, I have recovered 100%
from bipolar disorder, which is virtually unheard of in the medical
community. I have not had even the slightest hint of an "episode", nor taken
a single psychiatric drug for 3 1/2 years. I think I would nearly starve to
death before I would eat gluten again.

Now, to return to the original discussion, (missing periods), my research has
indicated that there can definitely be a connection between CD and
hormonal/fertility problems. I know several women personally who had
unexplained miscarriages or were unable to conceive until diagnosed and
treated for CD. And there is a Dutch physician doing research on gluten
sensitivity and neurological disorders. (Anyone interested in his articles,
write to me off list.) So CD can have many different manifestations, and its
diagnosis, very elusive.

The availability of simple blood tests has dramatically raised the awareness
and subsequent frequency of diagnosis for CD, for which I am very glad, but
this is also turning out to be a double edged sword. I can only imagine the
suffering of those who test negative, and go on blithely consuming grains in
the mistaken notion that their symptoms are not gluten related.

My mother was finally tested, at my insistence, including a biopsy, (because
she suffers from such severe heartburn) and was totally negative on all counts
. But she knows, as many do on this list, that when she stops eating grains,
her symptoms vanish. So does she, or doesn't she have. . .

Maddy Mason
Hudson Valley, NY