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

Thanks for all the in-depth info, personal stories, and encouragement
you gave!  It has helped to keep me going during a tough week.  It has
also been a challenge for me to summarize!  Please forgive the time it
has taken me to compose this summary, I will try to be concise:

A first time question will get you a tremendously broad and in depth
letter from the group.  It tells you everything from how to get an
accurate diagnosis to where to get gluten free products.  It gives
numerous essential web sites.  Ask that question that's been nagging you
and get a copy.

The essential first step for everyone:

FIND KNOWLEDGEABLE DOCTORS, SPECIALISTS AND SOURCES OF SUPPORT AND =
INFORMATION  It can save you time money and perhaps even injury!  Ask
your question here, and/or ask on one of the other on line support
groups such as the one at Delphi forums
http://forums.delphi.com/n/main.asp?webtag=celiac&nav=messages .
Contact the national Celiac support groups to find a local chapter:
Celiac Sprue Association/USA www.csaceliacs.org, Gluten Intolerance
Group of North America www.gluten.net ,Celiac Disease Foundation
www.celiac.org.  An excellent cite with lots of useful stuff is
www.celiac.com .   Contact the Center for Celiac Research at University
of Maryland at Baltimore it is only one of several groups conducting CD
studies.  Local support listings on the web seem often to be out of date
so contact national level; contact local hospitals and universities.

One marvelous lady from N. Shenandoah Valley, VA has single-handedly
started a local support group, now with 25 members.  You don't have to
do it alone!  The computer has made it possible to benefit from all who
have gone before -- give others a chance to help!

Several respondents wanted to get free blood screenings and be a part of
the study, the local support group effort here in Hampton Roads is over
but the Center for Celiac Research, UMAB testing is still on going.  You
can submit individual blood samples to them for free testing,see their
website http://www.celiaccenter.org/ , or better yet organize another
local group testing effort CCR,UMAB can help with that too. If you're
awaiting results contact Dr. Gerarduzzi for further info
[log in to unmask] for Celiac Research, UMAB,BRBRoom10-049, 655 W
Baltimore St., Baltimore MD 21201, USA Phone: 410-706-3734Fax: 410-706-1669

One person suggested, "www.finerhealth.com.
Dr. Kenneth Fine, a GI and a researcher  for over 10 years now, has a
stool and gene test that can be done by mail order. This way, you won't
have to try and find a doctor who will do the tests and your sons' will
not have to undergo an invasive procedure. The results of the tests will
come directly to you. You might want to have the tests also and you
won't have to go through an invasive procedure either."


Definitely have some non-invasive test done first, but most said It was
important to get the biopsy when indicated for these reasons:

1.  It is the current gold standard for diagnosing CD (especially for
those who are IgA AGA deficient, they have an increased risk of being
celiacs and the antibody tests are inconclusive).

2.  Get identified before you go gluten free so that tests will be
accurate(a gluten challenge is said to bring on more marked symptoms
than you had while still on a normal diet).

3.  The diet can be difficult to stick with (especially in social
situations, while traveling, even when hospitalized!) it helps to have
proof positive to support you in difficult times.

4.  A well performed and read biopsy of numerous samples will show level
of damage to the gut perhaps leading to the treatment of complications
not indicated by symptoms, or reassuring you that damage has been
limited.

5.  Biopsy proven cases will help educate the medical community and make
the way easier for those who follow.

Some wrote that they have very happily self diagnosed, prefer not to
risk an invasive procedure like a biopsy, are living gluten free and
doing fine.

EACH CASE MUST BE DECIDED ON ITS OWN MERITS as the following email
shows:

"I am a Family Physician with CD.  This is not a medical opinion, just a
friendly response; please confirm all information with your personal
physician.


EMA (or tTG) is most closely correlated with gut damage. Having a + IgA
AGA **probably** means that you have "silent" CD.  It wouldn't be a huge
surprise if the biopsy was normal or relatively so (no flat villi but
increased intraepithelial lymphocytes).  Then you'd still be uncertain.

 Also, consider that EMA is a hard test to do, technically speaking.  A
minor variance in lab technique could make it come out negative.  TTG,
OTOH, is less variable (but probably not as sensitive).

The medical literature is vague in this area--what we need is some sort
of consensus panel, like they've done with cholesterol disease, for example.

I could see several courses at this point:

1--go ahead and get biopsy after several weeks of heavy gluten intake
(gluten loading).

2--gluten load then retest for EMA, then biopsy if positive OR just
assume it's CD at that point & go GF.

3--go ahead and go GF, "assume" that you have CD.  I'd recommend regular
blood testing if that was the case.  (swallowing the big black hose is
not what most of us would call a pleasant experience)

4--do nothing and retest in 6-12 months.

BTW if you have DH and get a tissue diagnosis from the dermatologist
then, by "definition" you have CD & I would do all the regular CD stuff.
Many GIs will avoid small bowel biopsy in this case since you can just
look at the skin.

I think there are risks and benefits to each of these courses.  I THINK,
from my reading, that the experts will gradually move away from routine
GI biopsy & do it only in equivocal cases or where lymphoma, stricture,
refractory sprue, etc are considered.  That's NOT the general consensus now.

Biopsy is the general consensus now."

Most had had good luck working with their HMOs.  How the doctor writes
the referrals is  important.  You may have to provide highlighted
articles to your doctor to show the scientific literature that supports
your desired mode of treatment.  You may have to persist to let him know
you've done your homework and that what you request is reasonable.  You
may have to switch doctors(One respondent said her HMO had no problem
with that action either).  You may even have to threaten legal action.

One person related: "Not an HMO experience per se, but I have gone up
against the insurance guys when denied a claim for necessary treatment
and if you provide proof (i.e.

The blood work indicating the need  for biopsy and articles citing the
blood work as basis for biopsy) and mention that you would prefer not to
take it to the state governing agency over this issue that they
generally see reason."

Note: I am not by far the only person proven to have Celiac Disease by
the UMAB study having no previously identified blood relatives with the
disease (my sister-in-law is my brother's wife[though my brother has
Type 2 diabetes he tested negative for Celiac disease while still eating
wheat]).

Thanks to all!