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Thank you to everyone who wrote me.  I got MANY wonderful e-mails and I
am sorry I don't have the time to write back to everyone personally.  So
many people were so very supportive.

Altho, intellectually, we may know that celiac disease encompasses a wide
spectrum of sensitivites and reactions, it really hits home to see the
individual stories.  The responses I got fell into a few different
categories:
First, there seems to be a significant number of people who are extremely
sensitive to gluten and who also have multiple other food sensitivities.
Second, there are "regular" celiacs who do not have these problems - or
maybe to a lesser degree, but who were very supportive.
Third were the celiacs who do not have these problems and who do not
understand why just taking some probiotics, or glutamine or..... won't
make things all better - or why we can't try different restaurants til we
find some that work.

I will summarize some of the general thoughts.  I received so many
heartbreaking e-mails from other folks with extreme sensitivity and other
food issues.  Everyone in this situation spoke to how isolated they feel,
how angry they get at times - often at other celiacs who do not
understand, and how they live life never feeling  totally well.  Some
people wrote that they are lucky because they have the support of their
family - some even have entire families with the same issues and remarked
that at least they have each other, which makes it easier.  Some of the
more heartbreaking e-mails were from people in this situation who do not
have the support of their families - spouses who do not understand and
who expect them to eat out and/or travel frequently.  Suggestions I got
were to invite people to my place for dinner (which I was doing regularly
before  I moved), stick with only natural, non-processed foods (which I
have been moving in that direction), and to join the local celiac group
(I have actually gotten very involved with them).  Other suggestions were
to see a doctor (which I intend to do if I can ever get a job &/or health
insurance) or see an alternative health provider.  Some people, who
obviously did not have these severe issues questioned why I couldn't find
a couple of restaurants where I was OK most of the time, or just go for
coffee (I have - on more than one occasion - reacted to water in
restaurants, so I no longer dare try.  Those with the extreme
sensitivities did understand that eating in restaurants could not ever be
chanced.  My reactions also last from 2 - 4 weeks, so a philosophy of "if
I only get sick once out of 3 or 4 times eating out"  just will not work
for me).  Someone questioned why I could not eat at my sister's.  I do
not have a good answer to that - I assume it has to do with airborne
gluten and contamination of my food from that - all I know is that it
seems to be a crap shoot if I will or will not get sick when I eat there
- and I rinse off any dishes and silverware that I use, too.  One
interesting response was from someone who mentioned that she gets sick
every time she comes to Denver.  I actually was getting better before I
moved here - probably coincidental, but interesting.

Many people mentioned that I should take probiotics - I have tried a few
different ways of taking them and have reacted to them - I assume from
yeast as I am sensitive to that.  If anyone has a recommendation for a
GF, yeast free, dairy free probiotic, I would be happy to try it. (and
please do not suggest goat's milk as I react to that)

People wanted to know what supplements I am taking.  Here is my list:
Multivitamin/mineral
extra B vits
extra Vit C
Extra Vit E
L-glutamine
digestive enzymes
fish oil
Calcium
thyroid medicine
sudafed
fosamax
I have checked them all out to be GF, dairy free, yeast free and nut free
(the main things I react to)

Another interesting comment in response to my mentioning a recent
reaction to tomato sauce was that Hunt's has contamination issues. I was
not aware of this and it was Hunt's that I reacted to.

I spent a good portion of this past week watching the NIH celiac
consensus conference over the web.  For those of you who missed it, I
thought it was very good and I learned a lot and I thought the committee
did a great job with the report.  Anyhow, if you saw it, you probably
caught the point that there exists NO food, whether naturally gluten-free
or made to be gluten free, that is in reality, totally gluten-free.
Unfortunately for those of us with the extreme sensitivities, living in
the real world under these conditions probably means that we will
continue to live a sub-optimal existence.

Again thank you to everyone for your wonderful, heartfelt messages.  It
helps to know I am not alone, even if there is no "fix" to this problem.
Diane
Denver

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