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                   Miscellaneous Highlights from
            the 1994 American Celiac Society Conference
            -------------------------------------------
                     summarized by Jim Lyles

The American Celiac Society held a conference on June 10-11, 1994.
Three of the sessions have been summarized in separate articles.
This article highlights the remaining sessions of the conference.

I've grouped the comments by speaker.  In some cases I've grouped
comments from different times and settings.  For instance, some of
the information came from presentations, some from a question and
answer session on Saturday, and some from informal conversations
during lunch or dinner.


Glen Gelber, Digestive Disease Coalition, on current legislation
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There is a lot of value in contacting your congressman.  Form
letters, where you place a check by your opinion, are usually
ignored.  However, letters that you write yourself will get some
attention.  They will be read and responded to, at the least.

A unified approach by a single national organization, with four or
five specific goals or issues, gives you a better chance of getting
the type of legislative action you want from the federal government.


Mary Louise Endriecht, Pharmacia (a Swedish pharmaceutical company)
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The incidence of celiac disease amongst children in Sweden appears to
be 10 times as frequent as in Denmark, a neighboring country.  The
two populations probably have a similar genetic makeup.  The
difference may be that in Sweden, they go looking for celiac disease;
whereas in Denmark, they wait until they find it.  In Sweden, they
take a more aggressive strategy; they look for celiac disease as a
possible explanation of many symptoms.  In Denmark and countries like
the United State these same symptoms are unlikely to raise suspicions
of celiac disease.  This implies that in the United States there may
be a large number of undiagnosed celiacs, because we don't go looking
for the problem, and in many cases the symptoms aren't severe enough
to be recognized.

One-year-old celiacs in Sweden are healthy, chubby, cute kids.  They
don't have any symptoms of the celiac disease because it is detected
before it becomes a problem.


Annette Bentley, American Celiac Society Dietary Support Coalition
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Untreated celiacs suffering from malabsorption often have
psychological problems.  These can be due, in part, to the effects of
malnutrition on the brain.  Most children and many adults return to a
healthy mental state after responding to a gluten-free diet.
However, after years of suffering from untreated celiac disease, some
adults suffer lasting psychological effects even after the gut is
healed and they are getting proper nutrition.  Misinformation and
conflicting information about what you can and can't eat is
psychologically stressful for a celiac.  This is compounded by the
lack of knowledge that you doctor and/or nutritionist might have
about the disease.

For some celiacs, there can be problems getting health insurance.  In
some cases, celiac disease is considered a pre-existing condition,
and any expenses related to celiac disease are not covered.  One of
the conference attendees involved in the insurance industry spoke on
this point.  He said that in New York and New Jersey this is not a
problem.  He could not speak about anywhere else, other than to state
that he believed the trend was going to be similar all across the
country, so that this should not be an issue for long.

Annette encouraged involvement in a support group.  A support group
can be a group of local celiacs that meet regularly, or if you live
in a remote area it can be a number of other celiacs that you call on
the phone regularly.  Use the support group; lean on each other and
help each other; share moods and ideas.


Dr. Joseph Murray, University of Iowa
-------------------------------------
Duodenal ulcers occur in the same area of the small intestine where
celiac damage occurs.  This type of ulcer occurs more frequently in
untreated celiacs than in the general population.  This may be
because the area is already damaged and more vulnerable to the
bacteria that Dr.  Murray believes is related to ulcers.  Many
patients with undiagnosed celiac disease are incorrectly labelled as
having peptic ulcer disease.

Question: Is there a connection between high cholesterol and celiac
disease?  The short answer is no.  Many untreated celiacs tend to
have low cholesterol because their damaged intestine doesn't absorb
anything well, including cholesterol.  As the gut heals, cholesterol
levels tend to go up into the normal range.  For some celiacs, just
as with some non-celiacs, the cholesterol will continue to rise until
it reaches an unsafe level.  However, this does not happen any more
often with celiacs as with non-celiacs.

Untreated celiac women often have low estrogen levels and an erratic
or non-existent menstrual cycle.  In both men and women fertility can
be affected and rarely is the major manifestation of celiac disease.
For young untreated celiac girls, the onset of menarche can be
delayed.  Like so many other symptoms, these problems are caused by
malabsorption.  Once the gut heals, these problems are usually
eliminated.  Note: Women with a long history of malabsorption will
sometimes reach menopause at a younger age; in some cases as early as
in their late twenty's.

The bloating and stomach distention associated with untreated celiac
disease is probably being caused by poor digestion.  Milk sugars are
not being broken down, along with other sugars.  Bacteria then
convert these sugars to gas and liquid.  If you are experiencing
thisas a diagnosed celiac, then the first concern is: Are you really
gluten-free?  Most celiacs are lactose-intolerant when they are first
diagnosed.  However, about 95% are able to drink milk once the gut
has healed.  The remaining 5% represent those who would have had
lactose intolerance even without the celiac disease.

Celiac patients should be followed by a gastroenterologist or
pediatric gastroenterologist with an interest in celiac disease.
These may be hard to find.  Check with a local celiac support group
to get some suggestions.  If you can't find a gastroenterologist
interested in celiac disease, then you may be better off with an
internist or general practitioner that has the disease, has a family
member with the disease, or has at least shown an interest in
learning more about the disease and is willing to talk about it.
There is nothing better than a doctor that will listen to you with an
open mind.

For celiac-related blood tests, how important is the selection of the
lab that does the testing?  Results can vary from one lab to another.
A person that has symptoms of the disease should not let negative
test results convince him that he does not have celiac disease.  He
should consider a biopsy, to be sure of the results.


Dr. Alessio Fasano, University of Maryland
------------------------------------------
A question was raised: Can a baby receive gluten through breast milk?
Dr. Fasano stated that it has never been described that gluten can go
through breast glands.  A related question was raised: Can we get
gluten by drinking milk from a cow that has eaten wheat?  The answer
is no.  Nor can you get gluten by eating meat from an animal that has
eaten wheat.

Question: Is there an association between celiac disease and
attention deficit or hyperactivity in children?  Yes, but only for
untreated celiacs.  Once the child goes on a gluten-free diet, these
problems tend to disappear.  A related question: Is there a link
between behavioral problems and celiac disease in children?  Once
again, the answer is yes, but only for untreated celiacs.  It is the
malnutrition that leads to the problem.


Dr. J. Chopra, FDA, speaking on the new labeling laws.
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One of the goals of the new labeling law was to highlight the more
important nutrients.  For example, in a healthy diet you get no more
than 30% of your calories from fat.  In this country, the average is
about 37%.  Therefore, the new labels stress fat content and break
down the types of fat.

Serving sizes have been standardized, to make comparison shopping
easier.  For example, carbonated beverage containers previously
listed six, eight, and twelve ounces as serving sizes.  Under the new
law, the standardized serving size is eight ounces.

Many of the vitamins and minerals listed on the old labels are no
longer listed.  Nutrients such as thiamin and riboflavin do not
appear on the new label because most people get adequate amounts of
these; they aren't a concern in this country.

The daily percentages on the label are based on a daily intake of
2,000 calories.  The average adult leading a sedentary lifestyle
normally would maintain their current weight with 2,000 calories per
day.

The new law requires all ingredients to be listed.  In the past,
small amounts of an ingredient did not have to be listed.  The new
law states that any ingredient present in quantities of 10 parts per
million or higher must be listed on the label.  This should be a big
help in eliminating unknown gluten contamination in processed foods.

If fresh fruits and vegetables are coated with anything, then the
coating must be listed as an ingredient on the packaging or on a
placard posted with the produce in the store.  These coatings are
usually petroleum-based waxes, which do not cause celiacs any
trouble.

The new law requires manufacturers to immediately update the label
whenever the ingredients of a product change.