<<Disclaimer: Verify this information before applying it to your situation.>>
1997 CSA/USA Conference Highlights
----------------------------------
summarized by Tom & Carolyn Sullivan and Jim & Vicki Lyles
General Comments
----------------
The conference seemed less intense this year. There were no major new
items to announce or discuss. It was a catch up on whats happening
type of event.
Attendance was interesting: about 25% new (67 out of 269) with 1-2%
(4) being walk-ins. That means, as it should, that those who have
been there before heard some of the same old stuff. But thats good
because it means that everyone is then reading off the same page. It
just means that some people got there a little faster than others.
The format was primarily general sessions with only two concurrent
session times where choices had to be made. Sufficient people were in
attendance to make the choices no problem.
The sessions included the hotel chef, food vendors, bread machines and
regional meetings.
The food was excellent. The recipes used will be published in future
issues of Lifeline, CSA/USA's quarterly newsletter.
Genetics of CD--What's New in Research
--------------------------------------
Martin Kagnoff, MD, UCSD
[This section also includes comments from Bob & Jane Meehan of the
Midlands support group in Nebraska, and includes some text from Dr.
Kagnoff's talk at the 1995 CSA conference.--ed.]
Three factors contribute to celiac disease (CD): your genes, the
environment, and your immune system.
In discussing the genetic predictability of CD, Dr. Kagnoff said that
CD may be inherited from one parent with the right genetic makeup or
from both parents who together combine the necessary genes. In
families with one celiac, there is a 10% chance of additional members
developing CD. With certain DNA combinations, there is a predictable
rate of 30-40% of the family members developing CD or dermatitis
herpetiformis (DH).
Active CD, which causes damage to the digestive tract, creates a
malabsorption condition. Researchers do not know whether 1) stomach
acids change the gliadin peptide so that when it passes through, the
small intestinal molecules reject it, causing an inflammation of the
small intestine, or 2) if earlier gluten has traumatized the small
intestine, alerting the molecules to react to further invasion from
this irritant.
"Gluten" is somewhat of a misnomer, because corn and other "safe"
grains also contain a kind of gluten. However the term gluten-free
(GF) has come to mean "free of grains toxic to celiacs". The actual
proteins that are the problem for celiacs are called gliadins (wheat),
secalins (rye), hordeins (barley), and avenins (oats). [Should our
diet be called "SHAG-free" (Secalin, Hordein, Avenin, and
Gliadin-free)? How about "GASH-free" or "HAGS-free"? You think not?
It was only a suggestion--ed.]
This irritation caused by gluten produces an immune system reaction,
which increases the production of T-cells, which in turn break down
the surface projections of the small intestine.
The endomysial antibody test, which uses either monkey esophagus
tissue or human umbilical cord tissue, is very specific to CD with a
90-99% accuracy rate.
The prevalence of CD traditionally was thought to be 1:3000 or less.
Now studies indicate a prevalence of 1:350 or more, both in Europe and
in the USA. This means that for every diagnosed celiac in USA, there
are many more that are undiagnosed.
Dr. Kagnoff also discussed the "celiac iceberg". The tip includes
classic celiacs, diagnosed with extensive malabsorption. Under that
is a larger group of "silent" celiacs, with minimal malabsorption
problems and only partial villi destruction. Finally, under that is
an even larger group of "latent" celiacs, characterized by no
malabsorption and no villous atrophy, but with elevated
intraepithelial lymphocytes and elevated IgA antibodies.
Long-Term Management of CD
--------------------------
Richard Driscoll, MD, gastroenterologist, Seattle, WA
40% of treated celiacs have significant osteopenia. Osteopenia has a
higher incidence in celiacs than in any other high-risk group.
Bone mineral densitometry (BMD) is recommended for all adult celiacs.
It should be repeated yearly until bone problems are stabilized, and
also at menopause.
The incidence of asymptomatic CD is ten times greater than expected
among patients with clinical osteoporosis. A decrease in BMD of one
standard deviation (10-12% bone loss) increases fracture risk by 2 to
2.5 times.
Other disorders associated with CD include: DH, insulin dependent
(type I) diabetes mellitus, thyroid problems, selective IgA deficiency
(which causes the celiac IgA antibody, reticulin, and endomysial blood
tests to return false negatives), hyposplenism, Sjogren's syndrome,
mixed cryoglobulinemia, and neurologic disorders.
Separating the Wheat From the Chef
----------------------------------
Melanie A. Smith, Sous Chef, Sea-Tac Marriott Hotel, Seattle, WA
When eating out, nicer restaurants generally have simpler entrees.
They tend to have fresh vegetables, bag rice, fresh meat, fresh
fish-all plain. They usually make sauces themselves [so they can
generally make it with what you CAN have or leave out what you cant
have.--ed.]
Even a good restaurant with 450 degree hot oil cant kill gluten on
coated french fries.
When speaking to a chef, tell them that you are on A very strict
medical diet. Also state that you need to ELIMINATE, not just AVOID,
some items. This helps avoid miscommunication.
Staying Well with a Chronic Illness
-----------------------------------
Anne Marie Arvidson, MD, psychiatrist in Seattle; and Pamela Driscoll,
RN, BSN, nurse consultant in Seattle
Points they stress:
* Education: If I treat you, I help you today. If I teach you, I
help you for a lifetime.
* Exercise: Movement for strength, flexibility, and aerobic
conditioning.
* Stress management: Relaxation/imaging/breathing.
* Pace yourself.
* Keep a journal.
* "Clean" (untroubled) sleep: This is when growth hormones are
released; without this no growth or healing can take place.
* Talk relationships: Talking with others (support groups, etc.)
with a similar problem can be a big help.
Concentrating on Nutrition in the GF Diet
-----------------------------------------
Jean Guest, RD, CNSD, University of Nebraska
Use the RDA's (Recommended Dietary Allowances) found on food packages
as guides only, not as absolute minimum or maximum requirements.
Each RDA will soon be replaced by an RDI (Recommended Dietary Index)
or an AI (Adequate Index).
Use supplements under the direction of a doctor or dietitian. The
emphasis for celiacs should be on fat-soluble vitamins, minerals, and
trace elements; and on appropriate calcium supplements.
Don't Loaf Around: A Primer on Making Breads in Your Bread Machine
-------------------------------------------------------------------
Priscilla Brush and Valerie Norris, Gluten-Free Pantry; and Glenna
Vance, Red Star Yeast
All ingredients should be at room temperature for use in baking. To
get eggs from the refrigerator to room temperature, put them in a bowl
of warm water for a few minutes.
Recipes are based on LARGE eggs, not extra large, medium, or small.
If you don't have large eggs, then use other size eggs and measure out
1/4 cup for each egg the recipe calls for.
Notes from Other Sessions
-------------------------
Dr. Mary Lasley spoke on allergic Rhinitis. One item of note: Wash
machine water must be 130 degrees or hotter to kill dust mites. [We
have been encouraged to wash in cold water to save energy. This
unfortunately wont kill dust mites and makes allergies worse.--ed.]
It was noted in the Region I meeting (I wonder by whom) that we still
need state coordinators in five of the seven Region I states. It is
probably not a coincidence that the two states that have coordinators
(Iowa and Wisconsin) also have been holding yearly statewide meetings
for several years now.
There is a new GF seafood product coming soon; a GF imitation crab
(Surimi) developed specially for Ener-G. Look for it in the spring.
Dietary Specialties will have GF pretzels in their product line in the
spring.
According to their vice-president, Dietary Specialties' cakes are
supposed to taste better the day AFTER they are baked.
Should there be 20-30 specially-formulated "medical" GF foods, for use
in hospitals and institutions? (This would not affect the majority of
GF foods we have today.) The consensus by the audience at this
session was: "Yes".
|
