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          1997 American Celiac Society Conference Highlights
          --------------------------------------------------
          summarized by Tom & Carolyn Sullivan and Jim Lyles


General Comments
----------------

This was more of a doctor/teaching conference than a public/learning
conference like the CSA conference.  This made the form of
presentation and technicality of the sessions far more
medically-oriented than public-oriented.

Doctors educated in other countries seem to be made more aware of
celiac disease (CD) in their training.  This is one area we need to
improve on in this country.  We also need to support the doctors who
are doing celiac studies and seeing celiac patients.  And we need to
work together with other celiac groups.


CD in Children
--------------
John Udall, MD, PhD, Louisiana Medical School, New Orleans

Removing gluten from the diet of a celiac child will result in an
improvement in their behavior.  [Note from the Sullivans--In a hallway
conversation Dr.  Udall stated that the first and most emphatic
comment from parents of CD children when put on a GF diet was
invariably that their childrens behavior improved so dramatically.  In
a later session Dr.  Fasano said that he also hears that behavior
improvement is common when children go on a GF diet.]

Because the diagnosis of CD is a lifetime treatment, both the doctor
and the pathologist should review a biopsy to ensure it is correctly
interpreted.


Medical Conditions Associated with CD and Affected by GF Living
---------------------------------------------------------------
Nancy Patin Falini, MA, RD, nutritional advisor to the Greater
Philadelphia Celiac Support Group

GF living means that medications and supplements MUST be GF also.

Hidden ingredients include colorings such as caramel color, yeast,
natural and artificial flavors, malt and malt flavoring, natural
seasonings, spices, texturized vegetable protein, flour and cereal
products, vegetable protein, brown rice syrup, vanilla powder, MSG,
vegetable gum, soy sauce, mono- and diglycerides, modified (food)
starch, food starch, dextrin, dextri-maltose, maltodextrin and starch.
The latter two, maltodextrin and starch, when listed on FOOD sold in
the USA MUST BE GF.  However, in the case of supplements and
medications, maltodextrin and starch may be derived from a gluten
source.  Additionally, in the case of medications, dextrin, dextrate
and cyclodextrins may be from a gluten source while dextri-maltose is
from barley malt.

Dextri-maltose, maltodextrin, starch, dextrin, dextrate, and
cyclodextrin are the ingredients most likely to contain gluten in
medication.

[Note from the Sullivans:
  -- "Starch" is defined in the Compliance Policy Guides, Chapter 5-
        Foods, Sug Chapter 578, Processed Grains, Sec. 578.100
        Starches-Common or Usual Names (CPG 7104.01).
  -- "Maltodextrin" is defined in the Code of Federal Regulations,
        Title 21, Citation 21CFR 184.1444.
Both can be accessed on the internet at <http://www.fda.gov>.  Click
on the Index, items C-F, and then either Compliance Guides or Code of
Federal Regulations.]

As of August 1997, the following supplements are GF:

  1. Puritan's Pride (800) 654-1030:  Calcium Carbonate 600 mg.  is GF
     and lactose-free (LF); Oyster Calcium is GF but not LF.

  2. Shaklee (703) 780-5901 or (215) 672-5541:  Calcium-Magnesium is
     GF and LF.

  3. Freeda Vitamins (800) 777-3737 or (212) 685-4980:  All of their
     supplements are GF and LF.

  4. Theragran (800) 247-7893:  All Theragran products are GF.
     Regular Theragran comes in liquid and tablet form; the liquid
     form is also LF.  The new formulation of Theragran-M (with 18 mg.
     iron, not 27 mg.) is also LF.

  5. Poly-Vi-Sol, Poly-Vi-Flor, Tri-Vi-Sol with and without iron, and
     Tri-Vi-Flor (800) 222-9123:  All tablets and drops are GF.

  6. Astra USA (800) 262-0460:  Aquasol A and E drops and capsules are
     water miscible and GF.

  7. Nature's Bounty (800) 433-2990:  Vitamin E 400 in a water soluble
     base is GF.


Serological Testing for CD
--------------------------
Alessio Fasano, MD, Director of Gastroenterology & Nutrition,
University of Maryland, Baltimore

There are three blood tests commonly used to screen for CD:
  -- IgG antigliadin test:  high sensitivity, low specificity
  -- IgA antigliadin test:  low sensitivity, high specificity
  -- IgA endomysium test:  high sensitivity, high specificity
        (best choice overall)

The endomysium test has two drawbacks:  It misses patients with
selective IgA deficiency (more common in celiacs) and it is not
accurate for children under age two.

There can be many complications of unrecognized CD:
   short stature
   high-grade T-cell lymphoma of the small intestine
   carcinoma of the pharynx and esophagus
   adenocarcinoma of the small intestine
   fibrosing lung disease
   bilateral brain calcification
   splenic atrophy

Diagnosing and treating CD is important.  Overall, untreated celiacs
have a two times greater mortality rate than the general population.
On the other hand, celiacs on a strict GF diet have no increase in
mortality when compared to the general population.

There are several patient groups with a greater risk of CD:
   Type I diabetes mellitus
   Asymptomatic relatives
   Children with recurrent abdominal pain
   Adults with irritable bowel syndrome
   Chronic diarrhea
   Children with Growth failure
   Children with Down's syndrome
   Iron-deficient anemia


Crohn's Disease and CD
----------------------
Sheila Crowe, MD, associate professor, University of Texas; medical
advisor to the Houston Celiac Support Group

Dr.  Crowe compared the two conditions in her talk, showing ways in
which the two conditions are similar and ways in which they differ.

The prevalence of Crohn's disease in the US is 1:2500; for CD it is
about 1:4762 [diagnosed cases only-ed.]

The treatment and prognosis of Crohn's disease is usually less
satisfactory than CD.  Diet changes don't help in managing the
disease, though nutritional therapies are used to supplement nutrients
and calories to allow more normal growth and maintenance.  Various
medications and sometimes surgery are used to treat Crohn's disease,
depending on its severity.

Both Crohn's disease and CD have similar clinical pictures in some
cases, but there are significant differences that should allow for the
correct diagnosis.

For CD the small intestine biopsy followed by response to the diet is
the gold standard for diagnosis.  For Crohn's disease diagnosis
incorporates clinical, laboratory, radiological, endoscopic, and
histological findings.

Both are autoimmune disorders, and have a genetic basis.  Crohn's
disease is less well defined.  It is a type of inflammatory bowel
disease (IBD).  For IBD patients, 15-20% of family members will also
have IBD.

Crohn's disease can involve any part of the gastrointestinal tract.
About 75% of the time it is in the small intestine, usually in the
portion nearest to the large intestine (and therefore not usually in
the area most affected by CD).

Due to the malabsorption problems either condition can cause, anemia
and bone disease can occur in both Crohn's disease and CD.  Vitamin
B-12 deficiency is more common in Crohn's disease than in CD.


Lactose Intolerance and CD
--------------------------
Sheila Crowe, MD, associate professor, University of Texas; medical
advisor to the Houston Celiac Support Group

Lactose intolerance is caused by a deficiency in lactase, an enzyme
needed to digest lactose.  It occurs in over 90% of African blacks and
Asians; 70-90% of native North, Central, and South Americans; 60-90%
of those of Mediterranean or Jewish descent; 5% of those of Northern
European descent; and up to 25% of other non-Mediterranean Europeans.

In most species, the ability to digest milk is only needed by the very
young; therefore losing the ability to digest milk sugars might be
considered normal.  Given the normal course of evolution, those who
CAN digest milk as adults could be considered the exceptions.

If you are lactose intolerant, consuming milk products does NOT cause
villi damage; it just makes you feel uncomfortable.

Lactase is produced on the brush border of absorptive cells in the
villi.  When the villi are damaged, much less lactase is produced.
Once the villi heal, lactase is produced again (unless you are
naturally lactose intolerant anyway).

If you are naturally intolerant, then you'll always need to either
watch your lactose intake or take lactase supplements.  Otherwise the
lactose intolerance should be a temporary condition in a
newly-diagnosed celiac.

According to Nancy Patin Falini, nutrition advisor to the Philadelphia
support group, Lactaid drops are NOT GF.  Lactaid caplets appear to be
okay, but there may be some cross-contamination problems.  Nancy
indicated that Dairi-Ease products are GF.