<<Disclaimer: Verify this information before applying it to your situation.>>
Tenth Annual Gluten Free Gang Celiac Workshop
---------------------------------------------
summarized by Marcia Campbell, Sue Gentilia, and Mary Guerriero
This report contains some highlights from the Eleventh Annual Celiac
Workshop, held November 6, 1999, at Children's Hospital, in Columbus,
Ohio.
Common Sense for the Next Century, by Ann Whelan
---------------------------------
The keynote speaker was Ann Whelan, editor and publisher of
Gluten-Free Living, a bi-monthly newsletter. Subscriptions are $29
for one year and $49 for two years. Write to Gluten-Free Living, PO
Box 105, Hastings-on-Hudson, New York, NY 10706.
The happiest diagnosis of your life, Ann says, is to be diagnosed as a
bona fide, gold-standard-certified, biopsied celiac.
Ann feels that celiac disease (CD) will be the disease of the 21st
century (as awareness increases). The best time to be diagnosed is in
childhood. Early diagnosis helps you avoid complications such as
osteoporosis, some forms of cancer, and possibly other
autoimmune-related diseases. If diagnosed during your older years,
more damage is likely to be done to your system; and it is harder to
cope with the diet and to make changes in eating habits. Also, some
older people are reluctant to become involved in a support group.
(Support groups can be extremely important in the process of learning
to cope and adjust to being a celiac.)
The gluten-free (GF) diet does not need to be as difficult as we
sometimes make it. Some celiacs give up because of the perceived
complexity of the diet. If handled well, a balanced diet can contain
adequate amounts of calcium and fiber, as well as the necessary
vitamins and nutrients needed for healthy living.
Ann commented that you shouldn't believe all you read and hear. Look
for answers on your own. Evaluate the source of the information. You
need valid evidence that something is harmful before you eliminate it
from your diet. Examples of this are distilled vinegar, quinoa,
canola oil, and buckwheat. (There is no evidence that canola oil is
not GF. Quinoa and buckwheat could be contaminated, but in and of
themselves, they are GF. Distilled vinegar can come from a number of
different grains, including corn and wheat; but even when it comes
from wheat the distillation process eliminates all traces of gluten.)
It is hard to change your thinking from gluten to GF, but we should
take advantage of the evidence being presented on these products.
[This is Ann's position, which is shared by many, but not all celiac
groups and experts.--ed.]
CD is the disease of the 21st century because of the growing number of
diagnoses being made. The prevalence of CD in the U.S. is the focus
of a study being conducted in Maryland by Dr. Alessio Fasano. The
next International Celiac Symposium is being held in August in the
U.S. for the first time. For these reasons celiacs are being brought
together as a unified group. Many support groups are involved in
assisting Dr. Fasano. To prove the prevalence of CD, groups are
providing centers for blood testing first and second degree relatives.
[Information about our own group's participation appears earlier in
this newsletter. PLEASE make an effort to get your relatives to come
for the screening.--ed.]
Adjust your attitude from "half-empty" to "half-full". For some there
is a paranoia that makes us work against ourselves in the GF diet. We
work against ourselves when we obsess about CD. (However we should
still be as careful as we can be about maintaining a GF diet.)
Ann stressed strongly the need for all CD support groups in the U.S.
to present a unified front. This could bring about a basic,
nationally-agreed-upon diet that would be in line with the rest of the
world. A national celiac diet would preclude cheating, make following
the diet easier, and eliminate confusion about what is and is not GF
in the celiac community.
Ann Whelan's presentation could seem controversial to some, but she
would like celiacs to think about and question what has been accepted
as "tried and true"; some of it may not be "true" after all. We need
to be willing to investigate new trends, new ideas, and new theories
in order to expand our knowledge of CD.
Pharmaceuticals, Steve Plogsted, Pharmacist
---------------
Steve Plogsted is a clinical pharmacy specialist at Children's
Hospital in Columbus, Ohio. He recommended Stoke's GF Pharmaceutical
Guide as a reference. The cost is $20. For more information, call
800-754-5222; fax 609-654-5899; write to Stokes Medical Arts Pharmacy,
Inc., 639 Stokes Road, Medford, NJ 08055; e-mail
<[log in to unmask]>; or visit their web page at
<http://www.stokesrx.com>. Stokes also has the ability to make and
compound medications.
Steve recommends having your doctor write "DAW (Dispense as Written)"
on your prescriptions. Generic brands may change as often as once a
year. Most mail-order pharmaceutical companies supply a toll-free
phone number or you can check their internet web sites.
Very few medications these days have dyes, starches, sugars, or
lactose in them.
Medications are regulated in the US with rigorous testing and quality
control. There are approximately 250 new generic brands per year, of
which 40-60% are rejected within the first 30 days due to lack of
sufficient information, etc.
360 million dollars are spent on new products each year. The patent
life is 17 years, but it takes up to 12 years from discovery to market
a new pharmaceutical. That leaves only 5 years to recover the
research costs in developing a new drug.
If you have exhausted all other avenues for getting information for a
medication, you can contact Steve at his internet web page:
<http://www.geocities.com/gluten_Rx/gluten.html>. (Steve will be
leaving Children's Hospital, so we don't have a phone number for him.)
Osteoporosis, Nancy Stevens, MS, RD, LD
------------
Risk factors for osteoporosis include a family history of
osteoporosis, small frame and weight, hormonal factors, and late onset
of menses (15 years and older) in female patients, prolonged
amenorrhea, and early or surgical menopause. Caucasion women have a
higher risk factor then other population groups.
Your lifestyle can play a part in low calcium absorption. Risk
factors include smoking, alcoholism, eating disorders, and a low level
of physical activity. Salt, the tannins in tea, and fiber in large
amounts can also hinder calcium absorption.
Medical factors to consider include hypo- and hyperthyroidism,
malabsorption disorders [including untreated celiac disease], liver
problems, rheumatoid arthritis, and depression. Children building
bone and older people losing bone mass have the highest risk factor
for fractures.
The dual-energy X-ray absorptometry (DEXA) is the most accurate test
for detecting bone loss. A plain X-ray will not detect bone loss
until 30% of the bone mass is gone. The DEXA has a very low radiation
level, about 10% of the amount of a chest X-ray.
There are no referenced standards for anyone under the age of 20.
Bone density reaches its peak around age 18-20. It starts to decline
around age 40. Between those ages it is at a plateau; it is at that
time that we should begin to increase calcium intake.
Osteoporosis in relation to [untreated] celiac disease can cause
insufficient bone formation and excessive bone loss if not watched, as
more bone is broken down than is built up.
Of the calcium in our body, 99% is for bone and teeth. Bone formation
and strength is the number one use. Other uses include blood
clotting, hormonal function, and muscle contraction.
30% of calcium absorption occurs in the small intestines. Good
calcium sources include milk, cheese, and yogurt. Other sources
include tofu, pudding, ice cream, shell fish, canned sardines and
canned salmon with bones, broccoli, spinach, bok choy, collard greens,
and turnip greens.
The guidelines for daily calcium intake are:
children ages 4-8 ........ 800 mg
pre-teens and teens ..... 1300 mg
adults 19-50 ............ 1000 mg
adults 51 and up ... 1200-1500 mg
Vitamin D is also important in regulating the body's absorption of
calcium. You need about 200 IU of Vitamin D for each 500 mg of
calcium you take in a supplement. An effective calcium supplement
should dissolve in about 30 minutes when placed in 6 oz. of distilled
vinegar.
It is also recommended that you put some form of weight-bearing
exercise into your routine, such as walking or jogging for 30 minutes,
3-4 times per week.
|
