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Hi All--

I apologize for the delay in getting Part 1 of this summary out before or in
conjunction with Part 2. The problem has been corrected and it is as
follows:
____
 I don't know how I can possibly thank everyone enough for all of the
kindness and support and information I received on this issue. I will write
to everyone individually, so if I've not responded to you yet, it's because
I ran out of time yesterday (and today). There are still a few replies
coming in, so I may need to do a third summary.

My original question was this: A new GI doc I saw on Monday made the comment
that one cannot have celiac disease without antibodies. There was something
about the way he phrased it that made me question what I knew about celiac.
Thus, the question...celiac without antibodies - how is this possible? And
if there are no antibodies found in serologic testing, what is it that
damages the small intestine? I requested specific medical articles to
substantiate claims, if possible. Below are some of the responses I received
that directly speak to the issue I'm researching. If your reply is not
included, it certainly isn't because it wasn't useful - many of you brought
up disease processes that I'd not considered, but decided not to summarize
here. My comments are in [  ].
_____
[See Dig Dis Sci. 2004 Apr;49(4)"546-50Celiac.com 08/27/2004  False Negative
Serological Results Increase with Less Severe Villous Atrophy
Copyright (c) 1995-2004Scott Adams.]

There is also an interesting flow chart for dxing celiac at:
 http://www.aafp.org/afp/20021215/2259.html
_____
has anyone ever checked your total IgA? If you produce little or no IgA -
and a significant number of people with CD are IgA deficient - then you'll
not get a positive response for CD antibodies. (Technically if you produce a
little IgA you may get a positive response to bloodwork but it won't be an
accurate reflection.) The antibodies are not the whole picture re what
causes the damage however. Even if you're not IgA deficient, I've never seen
a study that says the CD blood tests are 100% accurate so I'd think there
are individual things the doctors just don't know about yet. (My GP - the
only doc we've found who "gets it" re my son's troubles - would say that
about immunology in general, BTW)  [I am not IgA deficient, but I my IgG is
consistently very low]

Your doctor may be correct that you have another autoimmune condition - as
well as at least being gluten intolerant. If some of your symtpoms have
improved with GF diet than it seems reasonable at least to consider yourself
as gluten-intolerant. I suppose the way to test that would be to do a gluten
challenge but given what you've been through already, it would seem "saner"
to just stick to the GF diet for now:-)

Oh, and has anyone ever suggested you try bovine colostrum? I have to say
it's the one thing other than all my son's dietary changes, that has had any
impact on his immune function. He takes two 500MG capsules twice a day on an
empty stomach. (He is casein intolerant but he's OK on the colostrum - I
know others have found they can handle it as well.) Colostrum is becoming
the focus of a considerable amount of research, even within the traditional
medical community - you might want to google for it.
_____
I was impressed with your grasp of the science behind your problems up to
the last paragraph. Gluten, in a normal person, is digested in the small
intestine. This means it is broken down to its most basic building blocks
(amino acids), then these smaller pieces are absorbed, transported in the
blood stream and metabolized by the liver.  Because of the digestion
process, when done correctly and completely as in a normal person, the liver
cannot tell if the amino acids are from gluten or a steak. Now in a person
with celiac, things go differently.  The gluten is not broken down
completely, setting off the autoimmune cascade you
seem to understand.  This is likely where the liver damage is coming from in
someone with celiac.

I had a vet school lesson that has really stuck with me. Someone asked a
pathologist why sometimes things in development went so terribly wrong, we
were looking at a calf that was hard to determine was a calf without being
told, it was so horribly deformed.  The pathologist told us that most
individuals are pretty close to genetically perfect, or have multiple big
genetic and developmental defects.  He warned us firmly, that if you find
one bigdefect you better go looking for others before you try to be a hero
and fix the obvious one--or you will be disappointed when the patient dies
or does poorly. Well, I made it well past 30 before I was diagnosed with
Celiac.  And I thought of that professor's words at the time.  I thought he
was wrong, I had no other major genetic/developmental defects.  In the end
he was right again!  I am not yet  40, and more are turning up already.

My thought for you is that you might have Celiac, and some other disease. I
am not going to guess what that would be--something autoimmune? some liver
disease?  I think you and your doctor are simultaneously both on the right
track.

And now for the disclaimer, I am only a veterinarian, acting only as another
member of the support group, I am not offering anything like a professional
opinion here.

End of Part 1

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