<<Disclaimer: Verify this information before applying it to your situation.>>

First I want to thank all who responded to my request for suggestions on
possible allergens.  It showed me that many of us share the same concerns
about corn, soy, tomatoes, potatoes, chocolate, peppers, lactose, casein, and
more.  On the other hand, many of us believe we are sensitive, but have not
really be tested.  This is what I learned at the Allergist:

1.  I got lucky.  He knew a little about Celiac and even told me about
Celiac.com and that since he was testing for histamine reactions, I should
still be tested for antibody reaction in the gut.  I did not react at all to
any of the allergens we tested, including WHEAT!!!!  However, with a
bloodtest of 155 for antibodies, and a positive biopsy such as I have, I am
still Celiac (damn it!).  So, even though I showed negative for corn, my gut
may feel differently.  I questioned why I was even bothering to have this
testing done if it didn't show what it was doing in my intestine and he
agreed.  Apparently, by his reckoning, I can run through a wheat field, but I
just can't eat it.  My GI doctor disagrees and tells me that even touching
gluten, it can enter the body and cause a reaction.  I agree with him,
because I have had severe reactions for face makeup containing wheat germ or
wheat protein, barley water, etc.  I have even had attacks after using
shampoos containing such ingredients.

The Allergist suggested I try and elimination diet and to add in the suspect
offenders one at a time following a few weeks of total removal.  It would
take forever, but I would surely learn which foods I couldn't tolerate.
Several of you on the list also suggested this, so I should have paid you and
saved the trip.  Many of you also suggested that I have my testing done at
Enterolab, where they are more familiar with our plight and I would get a
definitive answer.  I have just now ordered the full panel.

I was also tested for airborne allergens and tested negative to all but
trees.  I had a feeling that would come to pass, because each spring I can't
stand near the budding maples.  I also received lots of emails for those of
you who've also been to allergists who testing using this pinprick method and
still their symptoms persisted in the gut.  I would urge you to consider
getting tested at Enterolab.  Thank you Arline for providing me with the
website:  www.enterolab.com.  This is Dr. Fine's testing.

As far as lactose intolerance, as he pointed out that many celiacs are also
lactose intolerant, but so are most people. We are simply not meant to eat
all this dairy.  We are not baby calves, and we start poisoning our infants
from birth with sugar rich and milk rich formulas.  Having breast fed my son,
I knew this and he has never been big on dairy and still isn't.  We think we
need it for calcium, but this is a big lie.  Just eat some broccoli and
you'll get more than in milk, and protect your heart and gut at the same
time.

He also said that my case is difficult because I also have had Hepatitis C
for nearly 30 years, following a blood transfusion during surgery in 1973.  I
do know that Hep C patients and Celiacs share many of the same symptoms and
complaints.  Both get rashes, both can have elevated liver enzymes, both have
flattened villi, most are lactose intolerant, both get itchy, both can be
highly anemic, and worst of all, both can get lymphoma if they don't watch
their program carefully.  I know my Hep C is a light case, and I have a very
good biopsy showing no damage.  It has never given me too much trouble--a
little pain now and then and some rashes, and a few mood swings in the
Winter.  I am very interested in exploring if my Celiac was brought out
because of the Hep C.  I am interested in hearing from other Hep C people on
their experiences with Celiac.  I do know that many people have been told
they have celiac disease, only to find out later that they had Hepatitis the
entire time.  Heck, it took them only 25 years to find my celiac!!!

Bottom line is that we all need to be aware that there is a lost of testing
out there and it is very frustrating for us.  We need to make sure we are
tested by the right lab.  We need to be very proactive in our own care.  So
far, since diagnosis, the best and most reliable advice I've received comes
from YOU list members and not from the medical community.  I have learned
that we do our own research, and find the testing we need.  Now what we need
to a lobbyist to demand improved labeling, medical research and quicker
methods of detection and diagnosis.  Let's not let this become an orphan
disease.

I hope any of this is informative.  I am new to the summarizing process, so
please forgive any mistakes.  Thank you all for your continuing support.

Love and peace always,

Libby
NYC