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Hello All,

I am very suspicious of anyone who claims to be able to cure something which
is genetic in nature. Whenever I read of people doing gluten challenges,
desensitizing methods, etc. I am reminded of those who are former addicts and
think that it is OK to sometimes drink or use drugs because they are cured.
I view such promises are not just snake oil, but downright cruel and
insensitive, and perhaps dangerous.

It is hard to accept being Celiac.  It took me an entire year to accept that
I could never again have an Oreo, and that regular bagels would never again
be on my menu. I felt sorry for myself, and sometimes still do.  When I feel
depressed, my Celiac disease takes a real beating and I rant and rave and it
is not a pretty sight. Then I realize that I am eating healthier now than
before.  I am having less sugar because I am denied all those easy to grab
snack foods and cookies.  In a very spiritual sense, this disease has been a
guru or teacher for me.  It has taught me more about how I am as a person and
to develop strengths I never knew I had.

All this talk of Elisa.  What I know of Elisa testing is that it is blood
testing to see all the substances that a person is allergic to.  It does not
mention anything about a cure.  It is just a blood test.  It is used for
detection of other diseases as well. In fact, some medical plans in many
states won't even cover them and they can be expensive.  The gold standard
for testing of Celiac is still the blood test for the gliaden antigen and
confirmation by biopsy of the small bowel.

This past week I visited a friend in Florida who has Multiple Sclerosis.  She
had a flare up during my visit and it was so hard for her to even keep her
head up.  We discussed how very little money is spent on some diseases
because they are not embraced by politicians and movie stars in order to
raise money.  I wonder if there are any famous Celiacs out there who might be
convinced to do a pro bono spot to bring recognition of Celiac Disease.  I
would rather see real money spent on a cure than to pin my hopes on snake
oil.  Celiac Disease is becoming more recognizable.  In Florida I went to a
Flea Market and we stopped to have breakfast.  Everyone ordered eggs, bacon
and toast. I had a mixed vegetable salad with a can of water packed tuna.
When the server went to give me a delicious 7-grain roll, I turned it down
and he said "Celiac, huh?"  I was blown away.

Everyone have a great weekend.

Love and peace,

Libby
NYC

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