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                      A Review of Celiac Disease
                      ------------4-------------
                       by Thomas Alexander, MD
                 summarized by Tom & Carolyn Sullivan

At the October 9, 2000 general meeting TCCSSG Physician Advisor Dr.
Thomas Alexander provided a layman's version of the presentation he
makes to Beaumont Hospital doctors during the year as part of the
in-house continuing education program.  Highlights of the talk follow:

Dr. Alexander noted that the modern view and knowledge of Celiac
Disease (CD) is only about 50 years old.  And although there has been
more learned in the last 10 years than in the first 40, there are
still many unknowns.

CD is a chronic disorder.  It occurs in about 1:250 Caucasians.  And
the female to male ratio is about 2:1.

There are probably at least two genes involved in CD.  Answers are
still being sought as to why in identical twins, if one has CD only
about 75% of the time does the other also have CD.  Also, among the
HLA-identical siblings of celiacs only about 30% will also have CD.
(It is thought that other, non-HLA genes may also be involved, and
perhaps one may have a protective effect; but this is only speculation
at this time.)

With earlier diagnosis of CD occurring today, there are fewer classic
presentations.  And because the blood tests and biopsy are very
specific, a second gluten challenge is not usually required any more.

The latest blood test, tTg (Tissue Transglutaminase), is considered
the most accurate and has both a sensitivity and a specificity of 95%
or greater.  However, this still means that 1 in 20 tests is wrong
with either a false positive or a false negative.  The macroscopic
(visible to the naked eye, or during endoscopy) findings of CD are
seen in approximately 88% of patients with active CD, while the
microscopic (biopsy) findings are seen in all patients with active CD.

There is no consensus as to the meaning of the term "latent CD".  It
generally includes those who have positive blood tests and normal
biopsies, but also with an increase in certain T-cells found when
studying specially-stained biopsy slides.  About 25% of this group
will be diagnosed with CD within five years.

The treatment for CD is the gluten-free (GF) diet.  In addition, Dr.
Alexander now recommends that celiacs take a daily multiple vitamin
with minerals.  Besides the fact that it generally won't be harmful,
it can serve to protect against many of the vitamin deficiencies that
are reported as being linked to CD..

The diagnosis of "classic" CD is easy.  But the frequency in which
classic symptoms are found decreases as the suspicion of CD increases.
(In other words, the more you look for CD, the more likely you are to
find it in people with the less obvious, non-classic symptoms.)  Some
of the more common non-classic presentations are iron deficiency,
osteoporosis (6% have CD), and (in children) growth retardation.

The gluten-free (GF) diet, requires support, and the best help is a
support group.

The post diagnosis medical involvement is generally not much.
Annually it would include basic blood work plus iron, folic acid, and
B12 levels.  It could include an antigliadin or other antibody test to
verify dietary compliance.  A baseline DEXA test for bone density is
advisable.  A 24-hour urine test for calcium may be indicated.  And at
one year a second biopsy may be helpful to get a new baseline, as not
all patients will heal completely.  (A second biopsy should not be
taken any earlier than one year because it takes at least four months
to get the diet down pat and another four to six months for healing of
the intestines to reach a steady point.)

Dermatitis Herpetiformis (DH) is an extremely itchy skin rash that is
relatively rare and usually appears in the teens or early twenties.
In 85-90% of DH patients, CD is also present.  The genes involved in
DH and CD are similar and both diseases have the same associated
diseases.  Dapsone is generally prescribed to help control outbreaks
of the rash associated with DH.  However, it does nothing for the CD.
Most DH patients respond to the GF diet, so they can reduce or even
eliminate the use of Dapsone and have fewer flare ups.

Dr. Alexander answered a few questions from the floor:


Q:  Is it true as one internet site stated that one should not take
    folic acid with pernicious anemia because it reduces B12?

A:  As usual, one must be careful of internet information even from
    reputable sites.  In this case, unless the patient already has a
    high level of folic acid in the body, there is no problem with
    taking folic acid.


Q:  Is wheat starch safe?

A:  Wheat starch should be avoided because commercial sources cannot
    be guaranteed to be washed clean of gliadin.  Oats should also be
    avoided because commercial sources cannot be guaranteed to be free
    of cross contamination.


Q:  Should all celiacs get a biopsy after one year on the GF diet?

A:  I still do it because it is helpful to know what the status of the
    intestinal CD was when the patient was feeling "well".  Should the
    patient later deteriorate, biopsies are often taken.  In the
    absence of post-treatment "well" biopsies for comparison, these
    later biopsies become less meaningful.

    Many are getting away from the post-treatment biopsy and are
    instead relying on the blood antibody tests to follow their
    patients' progress.  However, the cumulative cost of doing so is
    not inexpensive, and the rises and falls in the antibody levels
    are less reliable and less predictive on an individual basis.


Q:  If my hands itch, do I have DH?

A:  If one does NOT have a rash, it is NOT DH.  It could be dryness or
    a reaction to an organic or chemical product.


Q:  What symptoms would be seen in an infant with CD?

A:  There would be no symptoms until after the offending grains were
    introduced into the child's diet.  After introduction, the
    symptoms could include diarrhea, colic, weight loss, behavioral
    changes and growth retardation.


Q:  Should someone with myasthenia gravis or multiple sclerosis be put
    on a GF diet.

A:  If the disease is Type 1 Diabetes, the answer might be "yes",
    because there is a high correlation between the Type 1 Diabetes
    and CD.  However, there is only a weak correlation with multiple
    sclerosis and none with myasthenia gravis so I would recommend
    staying on a gluten-containing diet until a diagnosis of CD is
    made.  A family with many autoimmune diseases should always think
    of CD but no one should go on a GF diet until after a
    biopsy-proven diagnosis, because after you go on the GF diet it
    becomes extremely difficult to later make a diagnosis of CD.


Q:  What are the symptoms of esophageal cancer?

A:  The primary symptom of esophageal cancer is the sensation of food
    sticking in the esophagus after it is swallowed.  Unfortunately,
    the cancer is usually more advanced by the time this symptom
    occurs.  It has been suggested that certain types of esophageal
    cancer occur with greater frequency in CD, though I've not seen
    such a case myself in 16 years.


Q:  What is the prevalence of constipation with CD?

A:  About 25% of all CD patients have constipation and it does not
    necessarily go away with the GF diet.