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

There have been a few questions on the poll.

If you were initially diagnosed as an infant, please use that response
in the poll, even if you appeared to go into remission and years later
were rediagnosed.

A few people wrote to tell me that the poll wouldn't let them vote
twice. I have fixed the program so that it will allow this.  HOWEVER,
for everyone that wrote me and told me the ages for others in their
families with celiac, I submitted the information on poll.  So please do
not record it again.

Also, one person asked about what consistitutes diagnosis. At this point
I am asking for data from people who have been diagnosed from   either
individual or family medical history, biopsy, or blood tests as being
"gluten sensitive."  This also includes people with DH.  I understand
that this may not meet everyone's personal criteria.

There are many people who develop latent celiac disease.  In 1997 heard
from some people who tested negative (biopsy negative) while younger
even though symptomatic; but later in life, in their 50's, they tested
positive by biopsy. (i.e. There are stages of this disease. )

I personally do not discount people who believe they have celiac when
doctors have ruled out all other possible causes and if the diet
relieves them of typical celiac symptoms while on a gluten diet.
(At a later date, I will put out a poll on how people were diagnosed.
At that point we can review those figures.)

There are many pathologists who will claim it is not celiac even if the
villi are blunted or clumped, which would certainly be abnormal and
possibly in a developmental stage of the disease--either due to the
early part of the illness or from recovery after a gf diet).

My villi were completely clumped together.  However, you could see that
they were fully formed.  They looked like sardines packed together in a
can.  My pathologist described in his report that they were fully
formed, but never mentioned that they were clumped together.  I had to
get a second opinion on my own biopsy.  The second opinion came from a
pathologist at mayo clinic.  His report said that the biopsy was
inconclusive.  However, when I spoke to him personally on the phone
about my medical history and symptoms upon eating gluten, he told me
that I must be celiac and that I should consider myself celiac even
though it isn't in his written report.

According to my local pathologist and also the mayo one, a negative
biopsy to almost all pathologists, is one that isn't completely flat.
Therefore, I believe that there a many people out there.... either in
early stages of disease or in recovery who have been told their biopsies
are negative, even though the pathologist has not reported that they are
abnormal in some way.  I only found out about my biopsy slides because I
insisted on viewing the slides myself and met with the pathologist in
person.  It was quite enlightening to say the least.

Because of these observations, I do not want to exclude people who
believe they have celiac.  They are not crazy.  The gluten free diet
helps them.  If they remained on gluten they might well have flat villi
in 20 years. There is no reason why people should be opposed to one
another.  If anything, we need to unite everyone.

If people would admit that people with negative tests might be celiac,
it shows the need for more effective testing. I would like to see the
invitro testing process become more common practice.  (The biopsy could
be cultured in a dish of gliadin to see if it becomes damaged--damage
only occurs on tissue taken from celiacs according to various research
studies.  This could be the test of the future.  There is power in
numbers.  Every time we try to exclude others, we diminish our numbers.

So, unite together.  There isn't the biopsy people, the medical history
people, the blood test people, and the self diagnosed people.  We are
celiacs.  Do not diminish our numbers by belittling the diagnosis
process of others.  Instead unite to obtain a more reliable test.  One
that doesn't depend on how much gluten you are eating at the time of
testing.

Abigail, St Paul, MN
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