THE SPRUE-NIK PRESS
Published by the Tri-County Celiac Sprue Support Group,
a chapter of CSA/USA, Inc. serving southeastern Michigan
Volume 9, Number 7 October/November 2000
**********************************************************************
...........................................
: What's Inside :
: ------------- :
: Miscellaneous Notes :
: How a Support Group Thrives :
: A Review of Celiac Disease :
: The Osteoporosis Revolution :
: A New Organization for CD Research :
: Newsletter Roundup :
: Information for the Celiac Child :
: Cooking with Lucy :
: Product Information :
: Market Day :
: Camp Sealth :
: Kids with Celiac Disease :
: Back to School (or Work) :
: More Product Information :
:.........................................:
References
Disclaimer
Miscellaneous Notes
-------------------
Single copies of the "Journal of Pediatric Gastroenterology and
Nutrition", volume 31, supplement 3, September 2000, "Ninth
International Symposium on Celiac Disease", are available at the cost
of $64 per copy from Lippincott, Williams, and Wilkins, Inc., 12107
Insurance Way, Hagerstown, MD 21740. This 35-page publication
contains the 106 abstracts (medically technical briefs of recent
research results) that were accepted for the symposium.--Janet Armil
-=-=- -=-=-
GI Lymphoma and CD<1>: The association of gastrointestinal lymphoma
and celiac disease (CD) is the topic of a paper in the June issue of
the European Journal of Gastroenterology and Hepatology (Eur J
Gastroenterol Hepatol 2000;12:645-648). A team of researchers from
Royal Victoria Hospital in Belfast, Northern Ireland, studied 69
patients with small-bowel adenocarcinoma and 69 patients with
small-bowel lymphoma. Among the lymphoma patients, 13 had villous
atrophy (a sign of CD). One of these 13 patients was known to have
CD, but in the other 12, the disease had not been previously
recognized. (None of the adenoma patients had villous atrophy.)
When the researchers compared the 69 patients with small-bowel
lymphoma to a random sample of the general Northern Ireland
population, they found that patients with small-bowel lymphoma had a
15-times-higher risk of unrecognized CD.
In the conclusion to their paper, they point out that since a
gluten-free diet is known to be protective, "every effort should be
made to diagnose coeliac disease at every opportunity." They also
suggest that perhaps "population screening for coeliac disease should
be carried out."
-=-=- -=-=-
Boston Market: We recently received a letter regarding gluten-free
items at Boston Market from TCCSSG member J. McNally. The letter,
dated April 7, 2000, lists these items as being free of gluten:
black beans and rice
broccoli with red peppers
butternut squash
coyote bean salad
cranberry relish
creamed spinach
fruit salad
hot cinnamon apples
jumpin' juice squares (flavored gelatin cubes)
mashed potatoes
new potatoes
rotisserie chicken
rotisserie turkey breast
steamed vegetables
tossed salad (no dressing or croutons)
whole kernel corn
zucchini marinara
However, be alert when eating there. Gluten-free and
gluten-containing items are often right next to each other, making it
all too easy for cross-contamination. Look the food pans over
carefully. Don't be afraid to ask to be served from fresh containers
of foods, to minimize the risk of contamination. For more
information, you can call Boston Market at 800-365-7000.
-=-=- -=-=-
Reading Food Labels: The following was gleaned from the CSA
Conference held a few months ago. This information comes from the CFR
(Code of Federal Regulations), updated as of April l, 2000:
1. Maltodextrin can be derived from corn starch, potato starch, or
RICE starch. (Title 21, Sec. 184.1444, Mar. 26, 1998.)
2. The single word STARCH is considered the common or usual name for
starch made from corn; or the word cornstarch may be used. (Title
21, Sec. 578.100 Starches, Oct. 1, 1980)
3. Vinegar, Cider Vinegar, Apple Vinegar: These must be made from
apples. (Title 21, Sec. 525.825, revised March 1995.)--Carolyn
Sullivan
Return to the Table of Contents
How a Support Group Thrives
---------------------------
[Editor's note: Normally I remove information specific to our local
group from the online editions of this newsletter. However, I did not
remove this article because I felt that, while the individual
suggestions were specific to our group, the overall theme might be of
value to other support groups.]
TCCSSG is a great celiac support group. The meetings are interesting
and well attended. New celiacs join routinely and are welcomed. The
newsletter informs members both near and far. The Shopping Guide is a
welcome aid to many people across the country. An accident? Luck?
No, it's much simpler than that. It's a small group of dedicated
officers, board members, and workers who see that things get done to
make it happen.
But things happen when a small dedicated group is good. The group
grows. Numbers increase. Each little job becomes just a bit bigger
to properly serve the greater number of members. At the same time,
this small dedicated group is changing. Age and health creep in.
Family, school, and church activities take up more time. Life gets
more complicated.
So how does the group grow? More members contribute a little bit.
The jobs get done and everyone's life is just a little easier and a
little better. For example, at last month's meeting, Jim Lyles, our
newsletter editor, explained the various activities that are involved
with putting out the newsletter each month and asked for some help.
Several people contacted him and that "group" project is moving
forward. Are there other "committee" functions like that to help
TCCSSG stay active?
How about a "Pop Committee"? Are there 2, 3, or 4 members who, among
themselves, could see that the bottles of pop and the plastic cups are
available at each meeting during the year? Each "committee" member
would in actuality be responsible for only one or two meetings a year.
If someone is out of town for the winter, they could take the
September and May meetings and make their contribution. No ONE
individual would be responsible for everything every month. Whoever
replaces the cups and/or bottles of pop turns in their receipts to the
treasurer at the meeting and receives a check right back. A few of
the members take care of one little thing and all the membership
benefits.
Or how about a "Coffee Committee"? Again, 2, 3, or 4 members, among
themselves, see that the coffee, cream, sugar, cups, and swizzle
sticks are available at each meeting during the year. And again, each
"committee" member would in actuality be responsible for only one or
two meetings a year. Timing is again the choice of the group.
Expense receipts are reimbursed when turned in at the meeting. And
another few of the members take care of one little thing and all the
membership benefits.
Can everyone hear at the meetings? Does the speaker system help?
Well, that speaker system has to be carried in, unboxed, the amplifier
wired to the speakers, the microphone(s) plugged in and the system
tested BEFORE each meeting. After the meeting the system must be
unplugged, reboxed and carried home until the next meeting. Are there
2 or 3 members comfortable with handling an amplifier/speaker system,
that could form an "Audio Committee" and see that each meeting gets
"wired for sound"? A few benefiting all.
How many have stayed around after a meeting to help with the mailing
of the newsletters? If truth be known, it's a lot of fun. But the
reality is that it is the ONLY way we can possibly mail 900+ letters
each month. And with the line set up, it doesn't take that long and
it's DONE. But where do the staplers and spare staples come from?
Where do the stamps and post office mailing boxes appear from? Well,
if we had a "Stapler or Mailing Committee" of 3 or 4 members, it would
be a simple matter: Each committee member would see that the proper
equipment was at the meeting only once or twice a year. Cooperation
of a few for the benefit of all.
At the end of each meeting we get a fantastic response when we ask for
help in taking down the chairs and tables and putting them away. The
cooperation is exceptional. Does anyone wonder how the room got set
up in the first place? Would 10 or 12 members want to make up the
"Setup Committee" and arrange, among themselves, to have a few of them
at the church BEFORE each meeting to handle the set up for the
meeting? It's just the reverse of what happens at the end of the
meeting and it has to happen for the meetings to run smoothly. A few
can make such a difference.
Just as it's the little things that make life pleasant, it's the
little things that make a support group thrive. So gather yourselves
together in groups of 3 or 4 and decide how you can do a little to
make it so much better for all. Just let any one of the officers know
how you want to help (they're listed on the inside back page of the
newsletter) and we'll give you all the support and assistance you
need. We WANT to be as helpful to as many as we can. As we attract
more members, we also NEED to be "Celiacs Helping Celiacs". Let's
hear from you.--The TCCSSG Board
Return to the Table of Contents
A Review of Celiac Disease
--------------------------
by Thomas Alexander, MD
summarized by Tom & Carolyn Sullivan
At the October 9, 2000 general meeting TCCSSG Physician Advisor Dr.
Thomas Alexander provided a layman's version of the presentation he
makes to Beaumont Hospital doctors during the year as part of the
in-house continuing education program. Highlights of the talk follow:
Dr. Alexander noted that the modern view and knowledge of Celiac
Disease (CD) is only about 50 years old. And although there has been
more learned in the last 10 years than in the first 40, there are
still many unknowns.
CD is a chronic disorder. It occurs in about 1:250 Caucasians. And
the female to male ratio is about 2:1.
There are probably at least two genes involved in CD. Answers are
still being sought as to why in identical twins, if one has CD only
about 75% of the time does the other also have CD. Also, among the
HLA-identical siblings of celiacs only about 30% will also have CD.
(It is thought that other, non-HLA genes may also be involved, and
perhaps one may have a protective effect; but this is only speculation
at this time.)
With earlier diagnosis of CD occurring today, there are fewer classic
presentations. And because the blood tests and biopsy are very
specific, a second gluten challenge is not usually required any more.
The latest blood test, tTg (Tissue Transglutaminase), is considered
the most accurate and has both a sensitivity and a specificity of 95%
or greater. However, this still means that 1 in 20 tests is wrong
with either a false positive or a false negative. The macroscopic
(visible to the naked eye, or during endoscopy) findings of CD are
seen in approximately 88% of patients with active CD, while the
microscopic (biopsy) findings are seen in all patients with active CD.
There is no consensus as to the meaning of the term "latent CD". It
generally includes those who have positive blood tests and normal
biopsies, but also with an increase in certain T-cells found when
studying specially-stained biopsy slides. About 25% of this group
will be diagnosed with CD within five years.
The treatment for CD is the gluten-free (GF) diet. In addition, Dr.
Alexander now recommends that celiacs take a daily multiple vitamin
with minerals. Besides the fact that it generally won't be harmful,
it can serve to protect against many of the vitamin deficiencies that
are reported as being linked to CD..
The diagnosis of "classic" CD is easy. But the frequency in which
classic symptoms are found decreases as the suspicion of CD increases.
(In other words, the more you look for CD, the more likely you are to
find it in people with the less obvious, non-classic symptoms.) Some
of the more common non-classic presentations are iron deficiency,
osteoporosis (6% have CD), and (in children) growth retardation.
The gluten-free (GF) diet, requires support, and the best help is a
support group.
The post diagnosis medical involvement is generally not much.
Annually it would include basic blood work plus iron, folic acid, and
B12 levels. It could include an antigliadin or other antibody test to
verify dietary compliance. A baseline DEXA test for bone density is
advisable. A 24-hour urine test for calcium may be indicated. And at
one year a second biopsy may be helpful to get a new baseline, as not
all patients will heal completely. (A second biopsy should not be
taken any earlier than one year because it takes at least four months
to get the diet down pat and another four to six months for healing of
the intestines to reach a steady point.)
Dermatitis Herpetiformis (DH) is an extremely itchy skin rash that is
relatively rare and usually appears in the teens or early twenties.
In 85-90% of DH patients, CD is also present. The genes involved in
DH and CD are similar and both diseases have the same associated
diseases. Dapsone is generally prescribed to help control outbreaks
of the rash associated with DH. However, it does nothing for the CD.
Most DH patients respond to the GF diet, so they can reduce or even
eliminate the use of Dapsone and have fewer flare ups.
Dr. Alexander answered a few questions from the floor:
Q: Is it true as one internet site stated that one should not take
folic acid with pernicious anemia because it reduces B12?
A: As usual, one must be careful of internet information even from
reputable sites. In this case, unless the patient already has a
high level of folic acid in the body, there is no problem with
taking folic acid.
Q: Is wheat starch safe?
A: Wheat starch should be avoided because commercial sources cannot
be guaranteed to be washed clean of gliadin. Oats should also be
avoided because commercial sources cannot be guaranteed to be free
of cross contamination.
Q: Should all celiacs get a biopsy after one year on the GF diet?
A: I still do it because it is helpful to know what the status of the
intestinal CD was when the patient was feeling "well". Should the
patient later deteriorate, biopsies are often taken. In the
absence of post-treatment "well" biopsies for comparison, these
later biopsies become less meaningful.
Many are getting away from the post-treatment biopsy and are
instead relying on the blood antibody tests to follow their
patients' progress. However, the cumulative cost of doing so is
not inexpensive, and the rises and falls in the antibody levels
are less reliable and less predictive on an individual basis.
Q: If my hands itch, do I have DH?
A: If one does NOT have a rash, it is NOT DH. It could be dryness or
a reaction to an organic or chemical product.
Q: What symptoms would be seen in an infant with CD?
A: There would be no symptoms until after the offending grains were
introduced into the child's diet. After introduction, the
symptoms could include diarrhea, colic, weight loss, behavioral
changes and growth retardation.
Q: Should someone with myasthenia gravis or multiple sclerosis be put
on a GF diet.
A: If the disease is Type 1 Diabetes, the answer might be "yes",
because there is a high correlation between the Type 1 Diabetes
and CD. However, there is only a weak correlation with multiple
sclerosis and none with myasthenia gravis so I would recommend
staying on a gluten-containing diet until a diagnosis of CD is
made. A family with many autoimmune diseases should always think
of CD but no one should go on a GF diet until after a
biopsy-proven diagnosis, because after you go on the GF diet it
becomes extremely difficult to later make a diagnosis of CD.
Q: What are the symptoms of esophageal cancer?
A: The primary symptom of esophageal cancer is the sensation of food
sticking in the esophagus after it is swallowed. Unfortunately,
the cancer is usually more advanced by the time this symptom
occurs. It has been suggested that certain types of esophageal
cancer occur with greater frequency in CD, though I've not seen
such a case myself in 16 years.
Q: What is the prevalence of constipation with CD?
A: About 25% of all CD patients have constipation and it does not
necessarily go away with the GF diet.
Return to the Table of Contents
The Osteoporosis Revolution
---------------------------
by E. Michael Lewiecki, MD
summarized by Carolyn and Tom Sullivan
The following is summarized from a presentation on Sep. 29, 2000 by
E. Michael Lewiecki, MD, FACP, Osteoporosis Director, New Mexico
Clinical Research & Osteoporosis Center, Inc., Albuquerque, NM at the
CSA Annual Conference.
Dr. Lewiecki noted:
* Anyone with Celiac Disease is at a higher risk for osteoporosis.
* Osteoporosis is a common disease.
* Osteoporosis is a very serious disease.
* It is easy to determine if one has osteoporosis.
* Osteoporosis can be prevented and treated.
* Osteoporosis is NOT an inevitable part of aging.
Progressive spinal deformity occurs in osteoporosis. This shortens
the spine, lowers the rib cage, puts pressure on the intestines, and
causes the belly to distend. The normal 55 year old adult will have
4-5 inches between the bottom of the rib cage and the pelvis. If,
while standing, one cannot get their fingers between the rib cage and
the pelvis, it may indicate trouble.
The impact of osteoporosis is not small:
* 28 million adults have osteoporosis or bone loss that can lead to
fractures.
* There are 1.5 million osteoporosis fractures annually. 700,000
are vertebral fractures (only 30% of which are clinically
apparent), 300,000 are hip fractures, and 200,000 are wrist
fractures.
* The annual health care cost is $15 billion.
A form of osteoporosis that can occur due to inactivity is called
Disuse Osteoporosis. Astronauts, for example, are concerned and
exercise regularly to avoid it.
There are several common risk factors for osteoporosis:
* Family history
* Being Caucasian
* Advanced age
* Being female
* Having hormone deficiencies
* Low body weight (less than 127 lbs.-relatively few overweight
individuals have osteoporosis problems)
* Poor nutrition
* Malabsorption
* Smoking
* Medications
In addition, there are several common risk factors for bone fractures:
* Low bone density
* Previous fractures
* Advanced age
* Frequent falling
* Rate of bone turnover
* Frailty
* Difficulty rising from a chair
* Being sedentary
* Having muscle weakness
"Lewiecki's Rules", or the six rules of osteoporosis are:
1. Don't fall. Make yourself "fall proof". Use common sense:
eliminate wires across the floor; eliminate loose rugs on the
floor; eliminate wet floors; use grab bars; use a walker; use night
lights; don't wear spike heels.
Kids fall on the chin or nose. If adults fall forward it is not
bad even if a wrist is broken. As we age, however, we tend to fall
sideways. Hip protector pads are available for people who fall.
(Popularity is low because they make the hips look bigger.)
2. Exercise. Weight bearing exercise is best. Walking is fine. The
use of small weights such as a can of Campbell's soup in each hand
is fine. But exercise alone is not sufficient--enough calcium and
vitamin D are also required.
3. Calcium. Calcium intake should be 1200-1500 mg/day. (The average
American gets 500-600 mg/day.) It is best to get calcium in the
diet. If a supplement is taken, no more than 600 mg should be
taken at the same time. The least expensive supplements are
calcium carbonate found in Tums or Caltrates. (NOTE: Vivactin
contains vitamin K and should be avoided if one is also taking
cumidin.)
4. Vitamin D. Vitamin D intake should be 400-800 IU/day. Vitamin D
opens the door for calcium to work. Sunlight plus skin equals
vitamin D. As we age, the skin is less efficient and we get less
vitamin D. A blood test can show the vitamin D level. However,
the lab values given for normal (some use >5) , are often totally
wrong. Look for a value of 30 or higher.
5. Medication. Medicines are available to increase bone density. The
FDA has approved estrogen replacement therapy, Fosamax (Aldronate),
Risedronate Actonel, Calcitonin-Salmon (Miacalcin), and Raloxifene
(Evista). All have proven to improve spine bone density. All
except Miacalcin and Evista have also proven to improve hip bone
density. The bone density improvement is a maximum of 8% but there
is a 50% reduction in bone fractures.
6. Don't get osteoporosis. Prevention is far easier than treatment.
The traditional treatment for spinal fractures of osteoporosis is
vertebroplasty. This procedure injects bone cement into the fracture
which relieves pain in 90-95% of the cases and stabilizes the fracture
zone. However, it does not correct the structural abnormality.
A treatment now being tried for spinal fractures of osteoporosis is
kyphoplasty. This procedure blows up a balloon in the fracture zone
like angioplasty does in an artery. Bone cement is then injected into
the fracture. This relieves the pain, reduces and stabilizes the
fracture, restores the vertebral height, and reduces the spinal
deformity.
During the Q&A period, Dr. Lewiecki cautioned anyone taking Fosamax
that it must be taken correctly to avoid complications, that is, it
must be taken on an empty stomach with 8 ounces of water and then wait
30 minutes, with the upper body in a vertical position, before
consuming anything else.
He noted that if one is malabsorbing, the Fosamax may not be absorbed.
For people with GI symptoms, IV injections can be taken once every 3
months.
Dr. Lewiecki also noted that for those at high risk for breast
cancer, Evista is the medicine of choice.
Return to the Table of Contents
New Organization for CD Research and Education<2>
-------------------------------------------------
Friends of Celiac Disease Research, Inc. (FCDR) is a non-profit
charitable corporation devoted to assisting people with celiac disease
(CD) and dermatitis herpetiformis (DH), primarily by supporting
efforts in CD research and education. It is headquartered in
Milwaukee, Wisconsin.
FCDR is working with the University of Maryland Center for Celiac
Research to launch a nationwide public service and awareness campaign.
Its first collaborative effort to increase awareness of CD is to
distribute a public service announcement for television featuring
Oakland Raiders Pro Bowl quarterback Rich Gannon and his
three-year-old daughter Danielle, who was diagnosed with CD in 1998.
FCDR is helping to fund the awareness campaign and paid for the
production of the announcement. Gannon is now the national
spokesperson for CD. He kicked off the campaign on July 6, 2000 with
a press conference at the University of Maryland School of Medicine in
Baltimore
FCDR was founded in 1999 by Ellen Mechanic-Schlossmann and Michael
Schlossmann. Their son, Benjamin, began experiencing digestive
problems shortly after gluten was added to his diet. He was tested
extensively for various ailments but his CD was not diagnosed until he
was 3-1/2 years old. Proper diagnosis and aid from the local support
group have enabled Benjamin to grow into the energetic youth he is
today.
The absence of CD information, education, and research delayed
Benjamin's diagnosis and continues to do the same to others. Through
FCDR the Mechanic and Schlossmann families hope to aid in CD education
and research, and improve the lives of celiacs.
For further information regarding FCDR, including how to become a
volunteer, dates of upcoming fundraising events, or how to make a
donation, contact:
Friends of Celiac Disease, Inc.
Ellen Mechanic-Schlossmann, Founder & President
Dana Tehako-Esser, Executive Director
8832 North Port Washington Road, #204
Milwaukee, WI 53217
Phone: 414-540-6679
Facsimile: 414-352-1734
E-mail: friends@aero.net
Return to the Table of Contents
Newsletter Roundup
------------------
Compiled by Janet Armil and Jim Lyles
This section contains articles and excerpts from newsletters produced
by other celiac groups.
.......................................................
: :
: Excerpts from the CSA Southern New Jersey Chapter :
: ------------------------------------------------- :
: newsletter: Fall 2000 Cindy Fisher, chairperson :
: 377 Crawford Ave. :
: Maple Shade, NJ 08052 :
:.....................................................:
Information for the Celiac Child/Parent
---------------------------------------
Booklet--"Me and the Right Food Choices", for ages 5-7 years, is a
coloring activity book about food choices for celiac disease (CD).
For more information, call the Gluten Intolerance Group at
206-325-6980.
Book--The No-Gluten Solution's Children's Cookbook, by Pat Cassady
Redjou. For more information, write to No-Gluten Children's
Cookbook, PO Box 731, Brush Prairie, WA 98606.
Support Group--"Raising Our Celiac Kids" (R.O.C.K.) is a support
group for parents and families of kids with CD. Feel free to
e-mail R.O.C.K. with questions, comments, concerns, advice, or
just to tell your story. There are no dues and no newsletter, just
friendly advice to keep the celiac child happy, healthy, and
gluten-free. Contact Danna Korn at danna@celiackids.com, or
visit their web page at http://www.celiackids.com.
E-mail List--CEL-KIDS is an e-mail list for celiac children and their
parents. To subscribe, send an e-mail message to
listserv@maelstrom.stjohns.edu. In the body of the message put
this line (substituting your own name, of course):
SUBSCRIBE CEL-KIDS Firstname Lastname
-=-=- -=-=-
The Gluten Free Kitchen presents _Cooking with Lucy, in her Gluten
Free Kitchen_. Topics include:
Tips for the newly-diagnosed celiac
Substitution chart
Guide to buying gluten-free (GF) flours
GF recipes
Safe and unsafe food additives
List of GF manufacturers and how to contact them.
This book may be found in your local bookstore, or visit
http://gfkitchen.server101.com on the internet.
-=-=- -=-=-
Product Information:
Gravy Master, Inc., Branford, CT, 203-481-2276, Nov. 2, 1999
Richard Accola writes, "We put no wheat gluten directly into Gravy
Master. The hydrolyzed corn and soy protein used in Gravy Master
is not wheat based. The vinegar used is apple cider vinegar. The
caramelized sugar is derived from pure cane sugar,. The caramel
color is derived from corn syrup."
To make a brown gravy, use the directions on a box of Argo corn
starch, add water as directed, and add Gravy Master (dark brown
liquid) to the desired color. Add salt and pepper to taste.
Natural juices from a beef roast also help, but are not necessary.
Harmony Farms Soy and Rice Drinks, 800-260-2424
The Light Soy Soymilk (original enriched vanilla and enriched
original) and Lowfat Rice Drink (enriched vanilla, enriched
original, and vanilla) are both gluten-free.
Lactaid Products, 800-522-8343
Lactaid 90% Lactose Reduced Ice Cream is NOT gluten-free. However,
a letter from the McNeil Pharmaceutical company states that Lactaid
milk IS gluten-free.
Return to the Table of Contents
...................................................
: :
: Excerpts from _Chicago Celiac_ :
: ------------------------------ :
: Sep. 2000 Pam Pucelk, editor :
: CS Association of Greater Chicago :
: 314 Anchor Dr. :
: Carpentersville, IL 60110 :
:.................................................:
Market Day does not publish a "gluten-free" list as such, but when
they get a request about a specific product, they research it and
respond. The lady I spoke with was aware of celiac disease and the
gluten-free (GF) diet, and understood that it was important for us to
know the status of their foods. From previous questions they have
had, she told me that the following products are GF:
chicken breast filets
southwest chicken steaks
A-one steak burgers
spiral ham and the glaze mix
classic smoked salmon
deluxe ham slices
chicken Italian sausage
regular Italian sausage
broccoli and cheese soup
cooked barbecue ribs with sauce
Their web site http://www.marketday.com gives a complete ingredient
list, which would be helpful in determining if there was a possibility
of gluten in any product. For specific inquiries, or to verify the
above, call Luann Conroy at 630-285-3381 during normal business hours.
She was very helpful and understanding.--Betty Lockwood, Membership,
CSA/GC
-=-=- -=-=-
Camp Sealth: This summer I had the ultimate camp experience. I
attended Camp Sealth, located on Vashon Island. in Washington State.
Not only is this camp filled with neat people and fun activities; but
it serves Gluten Free Food!
First off, I arrived at camp by ferry, the "Goodtime 2". Throughout
the two-hour boat ride music plays, prizes are given out, and kids
everywhere are doing the limbo. Once I arrived at the island, I was
immediately greeted by friendly staff members and counselors. Right
away I felt at home and comfortable. I was in the Arts & Crafts
session at Camp Sealth; so once or twice a day my whole cabin (all
five of us) made crafts. Our projects varied from glass etching and
candle making, to making hemp necklaces and learning to batik.
Besides arts and crafts, Camp Sealth offered many other activities for
kids. There were volleyball, nature walks, beach fires, and
"all-camp" events such as the Color Wars and Prey and Predator.
For me; the best part of camp was the food! We had three homestyle,
full course meals each day, which made me feel right at home. We had
waffles, soup, grilled cheese sandwiches, chicken nuggets, spaghetti,
French bread, strawberry cheesecake a la mode, and so many other
delicious foods. All our meals were prepared and checked by people
from the Gluten Intolerance Group in Seattle who volunteered their
time. The next best thing about camp was making all kinds of new
friends. After ten days with my cabin mates; it was really hard to
leave them on "Boatta Day" (last day). We are keeping in touch with
each other by e-mail and letters and can't wait to return to Camp
Sealth.
All in all; Camp Sealth was a great experience for me and all kids
should get the opportunity to go. Make Camp Sealth part of your
summer next year!--Sarah L.
-=-=- -=-=-
_Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy
Gluten-Free Kids_, by Danna Korn, published by WoodbineHouse, is
intended to include everything you need to know in an upbeat,
humorous, and informative format. It can be ordered through
http://www.amazon.com. Proceeds from the book will be donated to
celiac research. It will be available in January.
Return to the Table of Contents
..............................................................
: :
: Excerpts from the Washington Area CS Support Group :
: -------------------------------------------------- :
: newsletter: Spring 2000 Joany Janicki, editor :
: 5410 Connecticut Ave., NW #408 :
: Washington, DC 20015 :
:............................................................:
Back to School (or Work)
------------------------
With children, it is important to try to duplicate what other kids in
school are eating. The following are fun school (or work) lunch box
suggestions compiled from the CELIAC E-mail list<3>:
Box It: Use an insulated lunchbox with those soft reusable ice
packets that can be purchased at the drug store. Small plastic
containers and Ziploc snack-size bags are great for packing up a
variety of small amounts of foods.
Sandwich Alternatives: For obvious reasons, sandwiches are very
difficult to pack. Try packing sandwich items in separate baggies and
assemble the sandwich at school or work. Or try these variations
instead:
* Roll up sliced turkey or ham with mayo and a lettuce leaf and
fasten with colorful toothpicks.
* Tuna or egg salad with gf crackers.
* Hot dog roll ups - hot dogs and melted cheese rolled in a corn
tortilla (wrapped in plastic or foil to hold together prior to
eating.
* Rice cakes and cold cuts and cheese.
* Cheese quesidillas with corn tortillas.
* Peanut butter and jelly rolled in a corn tortilla.
* Pizza crackers - pepperoni slices (Hormel), cheese and sauce on
rice crackers.
* Slivers of meat and cheese in a taco shell.
* Baked potatoes stuffed with meat and cheese.
* Roll ups of Ham, cream cheese and a pickle in the middle.
Pint Size: Often little bits of lots of choices are better than large
helpings of only a couple of foods:
* Cut up veggies--baby sized carrots, sweet red peppers, cucumber
slices--and pack a tiny Morton's salt shaker.
* Fruit--preferably bite size. Grapes, strawberries (slice them
and include a little container of sugar or yogurt for dipping),
banana slices, pineapple bits, and other berries.
* Celery and peanut butter.
* Apple slices and peanut butter. (Coat the apples with lemon juice
so they won't turn brown)
Odds and Ends:
* Little cans of fruit cocktail.
* Thermos of soup or chili.
* String cheese. Wrap a piece of lunch meat around it.
* Trail mix--M&M's, miniature candy bars.
* Cheese cubes and GF crackers.
* Individual packages of applesauce.
* Baggies of cereal.
* Cold pizza--homemade, of course.
* Glutano, EnerG, or Dietary Specialties pretzels.
* Pudding or Jell-O cups with miniature marshmallows and chocolate
chips bagged on the side to mix in.
* Leftovers such as spaghetti or macaroni and cheese in a thermos.
-=-=- -=-=-
Product Information:
Bayer no longer guarantees any of their products to be gluten-free
(GF), as they get too many ingredients from a variety of suppliers.
800-800-4793
All Log Cabin and all Mrs. Butterworth syrups are GF. 888-349-1998
The following Genisoy products are GF: Protein Shake Powder, Protein
Bars, and ONLY the unsalted and salted Soy Nuts. (Other flavors
contain barley malt.) 888-436-4769.
All Centrum vitamins are GF. 877-236-8786
Campbell's V-8 Splash is GF. 800-257-8443
Saz's BBQ sauce is GF. It must be ordered via mail. 414-256-8778;
http://www.sazbbq.com/sauceorder.htm
Pez candies are GF. 203-795-0531
Return to the Table of Contents
......................................................................
: :
: Excerpts from the Westchester CS Support Group :
: ---------------------------------------------- :
: newsletter: Sep. 2000 Leslie Elsner and Sue Goldstein, editors :
: 9 Salem Place :
: White Plains, NY 10605 :
:....................................................................:
Working With Celiac Children: "Gluten-Free Living" publishes a
pamphlet entitled, "A Quick Look at Celiac Disease for Those Who Work
with Children". Copies may be purchased by writing to: Gluten-Free
Living, PO Box 105, Hastings-on-Hudson, NY 10706.
Return to the Table of Contents
References
----------
<1> "More publicity about celiac disease", by Nancy R. Ehrlich, from
the CELIAC Listserv archives on the Internet, posted July 13,
2000. To obtain a copy on the internet, go to
http://maelstrom.stjohns.edu/archives/celiac.html and click on
"July 2000, week 2".
<2> "New Organization Supports Celiac Disease Research & Education",
by friends@AERO.NET, from the CELIAC Listserv archives on the
Internet, posted July 12, 2000. To obtain a copy on the internet,
go to http://maelstrom.stjohns.edu/archives/celiac.html and
click on "July 2000, week 2".
<3> For subscription information, or to view the CELIAC list archives,
visit http://maelstrom.stjohns.edu/archives/celiac.html.
Return to the Table of Contents
Tri-County Celiac Sprue Support Group Officials:
------------------------------------------------
Physician Advisor: Thomas Alexander, M.D.
Pediatric Advisor: Robert Truding, M.D.
Dietitian Advisor: Dorothy Vaughan, R.D.
President: Mary Guerriero
Vice President: Sue Gentilia
Past President: Diane Morof
Finance Committee: Tom Sullivan
Sue Gentilia
Secretaries: Marilynn Ponto
Pat Michael
Web Page Editor: Pam Murphy
Newsletter Editor: Jim Lyles
Contributing Editors: Tom & Carolyn Sullivan
Group E-mail address: tccssg@yahoo.com
Group web page: http://community.mlive.com/cc/celiac
Disclaimer:
-----------
All recommendations, information, dietary suggestions, menus, shopping
guide suggestions, medical updates, miscellaneous articles, and
recipes in this newsletter are intended for the benefit of our
members, readers, and the general public. No liability is assumed by
the Tri-County Celiac Sprue Support Group or any of its members.
Information in The Sprue-nik Press has been approved by our
physician and dietitian advisors. Individuals should consult with
their physicians and dietitians before following any medical or
dietary recommendations in The Sprue-nik Press.
Original material used in The Sprue-nik Press is placed in the
public domain for the benefit of all celiacs. The information is not
copyrighted to facilitate the easy exchange of celiac information.
Feel free to reproduce any portion of this newsletter, unless it
specifically states otherwise. All we ask is that you indicate where
the information came from.
The Sprue-nik Press is published by the Tri-County Celiac Sprue
Support Group (TCCSSG), a local chapter of CSA/USA located in
southeast Michigan. Members receive printed copies of this newsletter
(8+ issues per year), a shopping guide, and a new member packet full
of articles and useful information. Out of area subscriptions are
welcome. For subscription information, send a note to
tccssg@yahoo.com.
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