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This is a message I just sent to Deborah - whose message responding
to my Identical Twins letter went to the whole list.  As I am getting
many messages expressing interest, but also anger and frustration, I
guess I'd better forward this to the whole LISTSERV, as it may slow
down the flood of mail that is filling my screen.

Deborah,

Thanks so much for taking the time to write the long and thoughtful
letter to the LIST, in response to my message about twins, triggers,
and acupuncture.

You say you have been diagnosed since October.  I went to a
completely gluten-free diet in 1982.  And I've been very careful
about food intake and interesting menus all those years since then.
My loving and patient husband has eaten gluten-free at home since
that time, and I don't think I've ever heard a complaint about our
meals. We dine well, and always have. When we have eaten out, he has
frequently ordered something that I could eat -  on the outside
chance that my restaurant meal might turn out to be cooked in a way
that would be questionable re: gluten content.  When he is on a
business trip or at Rotary, etc., then he eats anything that appeals
to his tastes and ignores the gluten. During the 19 years
gluten-free, we have managed to travel all over the USA, Europe, and
even Central Asia.  I find travel in the South of the USA the most
difficult of all!  The slightest slip-up made me really ill, and also
caused my mind to go fuzzy and my personality to change.  I was very,
very careful the whole time.

All that being said, I had NO INTENTION of ever adding gluten back
into my diet.  I felt it was poison for me, and probably not healthy
for anyone else. I looked at other people's grocery carts and then at
their obese bodies or pallid faces and felt that they were
inadvertently poisoning themselves with gluten.  I still think there
is much truth in that.

When the opportunity to try eating gluten again came along, I spent
three months deciding whether or not I dared try to eat it.

Acupuncture had removed many problems that were allergies - to paint
fumes and formaldehyde fumes in fabric and carpets, to  perfumes,
mold spores, the out-gassing from newly tanned leather, etc. etc. All
those things became history.  But I still refused to try to eat
things containing gluten.  Finally a friend who had also had
acupuncture and was able to eat all the things that had caused her
problems convinced me that I should give it a try.  I was astonished
to find that there were NO symptoms - no reaction.  I still stay
away, most of the time, from wheat bread and cakes and cookies and
most things containing wheat, barley, and rye, but I am no longer
fearful of accidental ingestion.  Yesterday, I splurged and had part
of a baguette, but that was an exception and not the rule.

You, and many others who have responded, have made an assumption that
the celiac trigger was emotional.  It is interesting for me to
remember that most of the celiacs with whom I have talked over the
years have looked back to physical problems (surgery, amoebic
dysentery, pregnancy, very powerful prescription drugs, and  other
illnesses) that have been triggers leading to their celiac problems.
Stress entered in, but was surely not the only trigger that was
discussed.

I have had a pretty calm and uneventful life - except for happy
events - for the last 15 or more years, until this past year, when
neighbors have caused us untold grief in a dispute over land rights.
Sleepless nights, loss of appetite, stress headaches and stiff necks,
many $ spent on lawyer fees, etc. Yet that stress has not in any way
caused my celiac symptoms to return.

I'm not sure the original message said anything about my age, but I'm
71.  My celiac son is 48.  He, too, has had acupuncture treatments
and can eat gluten without any symptoms, but as he is working and
raising a family he has chosen to be even more careful than I, and
still avoids all gluten.  I think he has made the right choice.  For
me, at my age, I'm a little more relaxed - something will eventually
kill me, and I'm willing to take a chance - knowing that it IS a
chance.

The message I wrote to the LIST was not intended to focus on my cure,
it was intended to open the thinking patterns that seem so closed for
many on the LIST.  Just as diabetes research is now taking a second
look at insulin, and wondering if perhaps removing all carbohydrate
might be a better choice, there are other things that may well come
along regarding celiac disease that might not even be considered by
the medical community if the mind set continues to say, "Once a
celiac, always a celiac."  "Gluten free for life."  I simply looked
for another way to approach the subject, and the earlier message
about acupuncture success in Chicago, and my memories about twin
research led me to the message I sent to the LIST.

There is one more thing that is not - lucky you - currently in your
thinking.  The day is around the corner when I may need to live in a
senior citizen community where meals are eaten in a common dining
room.  If I continue to need gluten-free food, that will be
impossible - I might die from the food rather than from old age or
some other illness.  There are no homes for senior celiacs!  Until
something has been done about hospital food so that celiacs don't
feel they need to take their own food to the hospital or have food
brought in, I see no chance of gluten free food in institutional
cooking.

In answer to my comment, "It is so easy to simply believe that we, as
celiacs, have a life-threatening condition that is irreversible and not
dangerous as long as we avoid gluten for the rest of our lives.  But
that concept may make us blind to the possibility that we can reverse
the process... undo the trigger, and " ....you wrote:  "I disagree
completely...it is anything but easy to accept Celiac as non-reversable.
In fact I see and hear a myriad of folks trying to believe it is not."

It is NOT easy to accept celiac as non-reversible for the first few
years, but after ten or more years, it becomes just a normal way of
thinking.  You haven't been at it long enough to realize that.  But I
realized recently that I had completely accepted the "non-reversible"
concept and was no longer expecting the medical community to do
anything more, in a creative and original way, to try to find a way
to reverse the disease, and I think that was a mistake on my part -
and on the part of most of the celiac community.

You said your friend loved your gluten-free cake and asked you to
make one for her birthday, even though she is not a celiac. Why
didn't you give your friend your gluten-free recipe so that she could
eventually make a cake for you???  We need to educate the world that
gluten-free cooking is not so very complicated.

I was lactose and casein intolerant, too - and that, too, is a thing
of the past. The same is true of all forms of sugar except pure maple
syrup - which has never caused a problem.  I have always had problems
with MSG - but no more.

Your last line made my day. "Best of luck in your healing and thanks
for inspiring  us to think!"   Thanks for realizing that I really was
trying to make us think.  Playing the gadfly is a dangerous job, but
someone has to keep this group on the cutting edge - even if it
ruffles a few feathers.

Have a lovely day,  Gayle K

PS  More summaries coming...