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

The Hows and Whys of Celiac Disease
-----------------------------------
Friday, Oct. 30, 1998, 2:00 PM, Concurrent Session, Z. Myron Falchuk,
M.D., Gastroenterologist, Harvard Medical School and Chief, Clinical
Gastroenterology, Beth Israel Deaconess Medical Center

Dr. Falchuk believes that CD exists in an individual from birth but
only manifests itself with the ingestion of gluten.  To diagnose it
requires someone to think of it as a possibility.

The causes of treatment failure are either poor adherence to the GF
diet or it is not CD.  If it is not CD, it could be tropical sprue,
immune deficiency, starvation, giardia, or an allergy to soy protein
or cows milk.  Other considerations could be lymphoma, poor
gallbladder emptying, refractory sprue or DH.

It has been demonstrated in the laboratory that CD tissues can be
grown in vitro, that is, in solution, and that cortisol, an immune
suppressant, blocks the gluten effect on the tissues.

The disease mechanism for CD is a specific immune cell reaction in a
genetically-susceptible host.  The HLA B8 and HLA DR3 genes are
present in 75 to 90% of CD patients while only being observed in 20 to
30% of normal individuals.


Neurological Complications Associated with Celiac Disease
---------------------------------------------------------
Friday, Oct. 30, 1998, 3:15 PM, General Session, Walter R. Thayer,
M.D., Gastroenterologist, Private Practice

One study of 16 patients with flat biopsies indicated various
neurological diseases, some of which had developed while on the GF
diet.  A second study published in the Feb. 1996 _Lancet_ described
unexplained neuropathy in which half the patients had CD.  If
neurologic diseases are diagnosed, CD should also be suspected.

The Q&A session provided the following responses:

  *  There is nothing in the literature to indicate a relationship
     between myasthenia gravis and autism.

  *  Besides the link between CD and diabetes, CD also affects the
     pancreas by preventing the release of the CCK hormone in the
     intestine.  Taking pancreatic enzymes may be required.

  *  There is no relationship between CD and heart disease.

  *  The studies have shown mixed results with neuropathy and the GF
     diet.  Some improve, many don't and some develop the neuropathy
     with the diet.

  *  The CD gene could be either dominant or recessive but is probably
     multi-factorial.  What is inherited is the RISK, not the DISEASE.
     And it can be transmitted by only one parent.

  *  All post menopausal women should have a bone density test.

  *  There is no connection between CD and reflux disease.  A full
     stomach with constipation could be the reason.

  *  There is no connection between CD and pancreatic cancer but there
     is between CD and duodenal and esophageal cancers because the
     damage occurs right at the junction of the pancreas and the
     duodenum.


Partnering for Gluten-Free Medications
--------------------------------------
Saturday, Oct. 31, 1998, 9:00 AM, General Session, Steve W.
Plogsted, Pharm. D., Clinical Pharmacist, Nutrition and Support
Services, Columbus Children's Hospital

Cross-contamination in drugs is highly unusual because of the
stringent sterile conditions of manufacture and the fact that a single
line manufactures a single product.

A local, independent pharmacist is the best, particularly if the
pharmacy also does other wellness activities like blood pressure
testing, flu shots, compounding, or selling durable medical equipment.

BEFORE a doctor visit, discuss your condition with your pharmacist and
obtain a list of GF products that you can take with you to the doctor
for him to choose an acceptable one if needed.

When you know that a product is GF, have your doctor write DAW
(Dispense As Written) on the prescription to insure that no
substitution is made.

When ordering prescriptions by mail, write DAW on each mail order AND
call the mail order house customer service department to discuss your
condition and have them put DAW on your patient profile so that it
appears on every order they fill for you.  This should be done with
each and every mail order firm you use, particularly new ones.

To obtain information on any prescription capsule used in the USA,
call 1-800-CAPSULE.

One study at Duke University (1994) showed some positive reactions for
gluten in some products.  Those results have NEVER been duplicated and
the companies have stated that their products are GF.  (Perhaps these
were false positives?)

The chances of changing the starch in prescriptions from a corn base
to a wheat base is very, very low because the price of corn is so low.

Talc is a mineral and contains no gluten.

One website for information on gluten in medications is
<http://www.geocities.com/HotSprings/Spa/2679>.


Psychological Aspects of Living With a Chronic Illness
------------------------------------------------------
Saturday, Oct. 31, 1998, 10:00 AM, Concurrent Session, Lauren Jacobs
Komack, Clinical Social Worker, Private Practice and a Celiac

Ms. Komack highly recommends Jax Peters Lowell's book, _Against The
Grain_, as the basic information resource.

She strongly urges every celiac to Ask, Ask, Ask.  No one knows any
more about the disease than the celiac themselves.

Celiac Disease is a PERMANENT new way of life.

As a celiac, be sure you understand who has the illness.  Only the one
who has it, has it.  All others must let go since they can't live
another persons life.

CD is different for a child before or after they acquire language.
Before language a child simply grows up in a GF world and doesn't know
any different.  After language, it is a take away in their life.


Ten Miracles of CSA
-------------------
Saturday, Oct. 31, 1998, Noon, Leon Rottmann, Executive Director

The ten miracles of CSA include the support provided by everyone,
members, professionals and contacts but most particularly by the
celiacs themselves for both self managing their own lives and disease
and still helping other celiacs.