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

The overwhelming response to my post was positive:  people are getting tired
of singular opinions being posted as fact.

I did not intend to single out any individual with my original post .. some
are indeed very careful about what they write, so apologies to vance for
anyone who might have interpreted my comments as being directed toward him.

There was one post which was medium-rude and told me to shut up.  But a
number of other posts which concurred with my opinion stated they didn't
post themselves because they were fearful of being "flamed".  The listowners
need to address this issue in the near future, in my opinion.

Here's a sample:

in my case my father and my son is evidence. Is good to know what is going
on in our comunity without doctor's blessing.

My advice: Shut up and get some more evidence by yourself. There is tons of
them on internet.
** my response to this:  just because it's on the net, doesn't mean it's
correct - I am a journalist, and want to find the correct source of
information so I can verify its value.  This is why I posted in the first
place. so sorry to this person, but your father and son simply aren't good
enough evidence for me.

You're right - people post things without citing and that can be very
alarming to people. I think it's just that there are a lot of parents on
this list who are watching their children suffer unspeakable pain and we
feel a need to find answers where the medical community isn't necessarily
offering. We want to be on the leading edge of the research/learning curve
as our children grow up so quickly.

In the future, I will cite references - I agree with you


I simply don't understand why people use this list to attempt to justify
their completely unfounded 'ideas' about celiac disease and other medical
problems.  I don't think it is useful to expound completely unfounded
amateur theories about all the supposed connections between celiac disease
and other maladies.  I don't think this serves any purpose here and if it
denegrates a particular group of people I think it is very wrongheaded.

It's very intersting to me that people on the list are either calling
doctors stupid and uninformed or they are using out of context statements by
doctors to justify what they already believe to be true.  It is plain that
some of these people are trying to motivate doctors to say things they want
them to say.

I'm glad we posted similar comments at the same time!

Those unsubstantiated claims should be of great concern to everyone. I
especially thought that schizophrenia comment uncalled for and completely
irrelevant to anything.

Good for you - I feel the exact same way, but did not have enough nerve to
speak up. I'm Irish


Thank you.  I've never posted to the list, but read carefully and sort out
in my head what's legit and what isn't.  I have celiac disease, period. No
lactose intolerance, no allergies, autism, etc.  And I'm grateful for that.
I've also been diagnosed for nearly 7 years and have some experience to help
me separate fact from fiction.  I really don't know how a newbie would cope.

Your post is a blast of fresh air and common sense.

I don't think that the people making the posts are trying to be alarmist
and while the point about putting your sources in is a valid one, is not the
point of this forum, to educate, to find knowledge.  One way to do that is
to put a comment up, and the watch the debate that unfolds.  I believe that
to have been the purpose of the comments of the original post, the woman had
heard something from her doctor and was looking for information to
in/validate those comments.

Well said.  Thank you.  I get sick and tired of these posts also.  I also
get sick of the studies that use 20 people and declare that since most of
them didn't react to something, that it is safe for all celiacs.

Thank you for a good post-messages like the one you were referring to make
me crazy-it's the "if my Dr. said it, it must be true" syndrome.  Can be
fatal.

******
I guess what can be learnt from all of the above is that the list is a
shared, democratic resource, and perhaps we all need to be very careful in
HOW we word posts, so that it leaves no room for confusion, especially when
making claims about medical evidence.