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This is part of the original post that people are responding to:

O> I want to start with the recently discovered given that many geneticists
O> nowadays believe there are genotypes for certain problems that do not quite
O> reach the level or severity of the diagnosed problem.
O>
O> For instance, they posit that if it takes 8 different genetic markers to
O> make a true schizophrenic or autistic, some people may have only 5, 6, or 7
O> of them. These incomplete schizophrenics? then manifest many of the
O> symptoms of the psychotic, but never quite get completely out of touch with
O> reality. And this may, of course, be a sliding scale of relativity from
O> severe to mild. I know a couple of people here on the faculty that seem to
O> have no awareness nor concern with anyone elses reactions to anything as if
O> they were just almost autistics. So as there can be schizotypal
O> personalities without being fully schizo, can there also be celia-typals
O> without being fully celiac?

Every paragraph from here down is from a different list member:

From a Ph.D.  in genetics:  You could on somewhat of the right track here.
There is something in genetics known as incomplete penetrance - meaning that
people carrying certain deleterious genes do not show the "full blown"
phenotype (external or visible manifestation of the gene in question) -
presumably due either to other modifying genes being present or to the
environment.  In some sense, one could say that celiacs who stick to a
gluten-free diet exhibit incomplete penetrance.  But I would also guess that
the presence or absense of other modifying genes may well affect the severity
of gluten reactions.

Then I liked this funny one: Hmmmmmm. Wonder if that's like being a little
bit pregnant!?
Interesting, Vance.

That is an interesting theory you pose. I also have multiple intolerances:
corn, dairy, eggs, and recently rice too (the last straw, making life very
difficult indeed). I have thought of myself as a "more advanced" case of
celiac, rather than an "incomplete"one. I was diagnosed through bloodwork,
positive on all 4 panels, so there is no doubt in my mind that I have CD. I
still don't understand how you could be more reactive to more gliadin protein
and be "incomplete" in the genetic markers......

There has been an undercurrent that if you arent'biopsy-proven celiac that
you weren't a fullmember of the club.  Someone posted yesterday injest that
counting flushes/toilet bowls fullshould be a diagnostic tool!  Kidding
aside, I'vehad the theory for years that medical sciencedoesn't yet have the
tools necessary to diagnose exactly what I have.  It is definitely
glutenintolerance and celiac-oid.  I don't know aboutthe anatomical changes
to the villi since I can'teat gluten to get the biopsy done.  Any glutenlays
me up in the worst of ways for a week or so(depression, joint muscle pain,
extreme fatigue,fuzzy brain, and catastrophic gi problems thatlead to
dehydration).  I can't do that to myselffor any prolonged period of time
(even a one dayaccident is hard to recover from).  So I'm notbiopsied -- not
"officially" diagnosed.  I do havesome subset of gluten intolerance!  When
medicalscience figures it out and cracks the code (eitherdiagnostically or
genetically), I'll be thrilled.Bet there are a lot of clinical presentations
thatdon't fit into current diagnostic methods.  Justlook at all the diagnoses
peole have firstreceived and how many doctors were involved fromallergists,
rheumatologists, psychiatrists, nutritionist, gastroenterologists,
endocrinologists, etc., and countless family practitioners, internists and
generalpractitioners.  If it were an easy nut to crack,we'd all have access
to affordable food, drugs totake, and the blessings of agriculture and FDA!

This makes so much sense.  And something I've been thinking about long and
hard.  Our society wants you to REALLY prove you have something before
anyone will sit up and take notice.  I've noticed this in 12-step programs.
Those giving their testimony were REALLY in the gutter before turning their
lives around.  It was almost like a game of one-upmanship.  Are you a REAL
alcoholic?  Are you "worthy" of being in this program?  If you haven't just
come from the gutter, what are you doing here?  Or, do you REALLY have an
eating disorder ("... weighed 60 pounds and they gave me up for dead...."),
or are you just playing games?

You are right that there are several genes for CD and there ave varing
degrees that people inherit this disorder due to the number of genes they
actually have.

There are many, many of us on the list that are "incomplete" Celiacs
hopefully not damaging our villi, yet having to comply completely with the
restrictions.

I am wondering too.  I am exactly like you, never biopsied yet cannot
have gluten, nor buckwheat or the other grains other celiacs can eat. I
am allergic to the protein in milk.  + many other allergies. I went to
an immunologist years back and she told me I tested false negative
because I have an IgA deficiency but still would not advise me to eat
gluten if it stops my symptoms which it does.  She also did not think
that I should have a biopsy at that point because I had been on the diet
so long, she is sure nothing would have shown up.
She is a wellknown immunologist and head of the Immune Deficiency
Foundation and told me it would be a waste of time and money and energy
to get a biopsy done because I would make myself sick again and there
was no point to it that she could see.

There was an article by a Dr. Dohan (1960s ?) in Philly I think,who did a
controlled study of schizophrenics back in the day when they could be on a
locked ward.  It has been a while since I read about this, but I believe the
results were that scizophrenics who were not ingesting gluten or dairy had a
recovery rate that was phenomenal.  Additionally, and extremely interesting
for me, was the fact that the villi of a schizophrenic who "recovered" after
abstaining from gluten/dairy,  did not have the appearance of the typical
celiac disease patient.

This is interesting to me because I am hypothesizing that I got (some)
genes for celiac from my mother (who exhibits constipation,
irritability) and some from my father (more classic symptoms that I
won't go into).  I am really waiting for more information about the
various genetic pieces to this puzzle.  Have passed the problem on to
one of my three children (so far).  I don't doubt that most of us with
Irish genes have at least some of the genes.

Your hypothesis is interesting. I think a better hypothesis is: biopsy is a
lousy test.
I strongly suspect that the probability of false negative is higher than
doctors admit.  There are 2 confirmed celiacs in our family, and one
brother with almost exactly the same symptoms and reactions as me who
did not pass the biopsy test.  Yet the GF diet fixes his problem, and
accidental or deliberate trials give him the same IBS symptoms as I
get.  Various other tests indicate he had a problem with malabsorption.
It's interesting that his biopsy was done in the States, whereas the
two confirmed ones were done in Canada.

I like your genetic theory hypothesis. I guess that I too am a
"psuedoceliac".  I now know that I was tested incorrectly for celiac and
the results are not valid.  I refuse to eat gluten foods again to be
tested "properly".  I guess I am permanently on a gluten and dairy free
diet.  When people ask why I'm on this diet,  I just say I'm allergic so
I  don't have to explain and answer annoying questions!!

-vance