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 6 September 2000
**********************************************************************
...........................................
: What's Inside :
: ------------- :
: Miscellaneous Notes :
: Danielle's Story :
: Eating GF at Outback Steakhouse :
: Newsletter Roundup :
: GF Foods at Taco Bell :
: GF Food Vendor Websites :
: Increased Zonulin Levels in Celiacs :
: Pamela's Story :
: Just a Thought :
: A Study of Subclinical/Silent CD :
:.........................................:
References
Disclaimer
Miscellaneous Notes
-------------------
CSA Recipe Correction: The blueberry muffin recipe mentioned in the
news release in CSA's 23rd Conference brochure has a few errors. Both
the baking powder (1/4 tsp.) and the sugar (1 cup) amounts are
incorrect. The baking powder should be 3 tsp., and the sugar should
be 1/4 cup (with the blueberries), plus 1/4 cup in the dry
ingredients. [Thank you to Carolyn Randall for correcting this
error.]
Return to the Table of Contents
Danielle's Story
----------------
from the pages of "Gluten-Free Living"
She was a sick infant and as she grew, her illness got worse.
Danielle was saved just in time. An alert specialist suspected
celiac disease, performed the right tests, made the diagnosis
and sent the family off to follow a gluten-free lifestyle.
Now Danielle is healthy and strong. She faces a bright future.
Rich and Shelley Gannon knew their younger daughter Danielle was ill.
In fact, as she approached her first birthday, she became
progressively worse. They were frightened.
Rich and Shelley do not frighten easily. They have coped with many
things and been around high-powered people most of their lives. Rich
is quarterback for the National Football League's Oakland Raiders.
Shelley was an All-American gymnast at the University of Minnesota.
They met while Rich was playing for the Minnesota Vikings. Shelley's
dad was a running back for the Vikings.
What the concerned parents did not know was that Danielle was turning
into a classic case of celiac disease, which is also called gluten
sensitivity. Celiac disease is a gastrointestinal problem that
involves an abnormal reaction to gluten in food. When people with
celiac disease eat wheat or other grains that contain gluten, their
bodies react as if the gluten were poison. The reaction damages the
small intestine, which leads to malabsorption of vital nutrients. In
essence, celiac disease was causing Danielle to starve.
Celiac disease is difficult to diagnose because the symptoms can be
attributed to many other causes. Danielle was just an infant, so of
course she couldn't explain. But Shelley had known for some time that
something must be wrong. She describes Danielle as a sick baby. She
cried all the time, never slept and eventually became hyperactive. On
top of that, she had 10! ear infections during her first year.
"Danielle is my second child," Shelley says, "so I wasn't a paranoid
mom when I told the doctor how concerned I was about her health."
But the doctor simply didn't believe what Shelley was telling him, and
brushed it off as normal baby stuff. So she searched elsewhere. She
consulted a nurse practitioner, tried different formulas, experimented
with different foods, and talked to a holistic doctor.
Meanwhile, Danielle continued to deteriorate. "She threw up all the
time and used tons of diapers," Shelley says. Doctors said she
probably had the flu or a virus. They did every test they could think
of, and switched the failing baby from one diet to another. Nothing
worked. The "crisis" stage lasted for about two months, and
eventually the family wound up in the emergency room with a baby who
was starving to death right before their eyes, yet no one recognized
it. Testing continued to no avail. "I thought she wasn't going to
make it," Shelley says. "I prayed every minute."
Two days after Danielle was admitted to the hospital and two months
after it had become clear that something was seriously wrong, David
Ferenci, MD, a pediatric gastroenterologist, was called into the case.
He was the first physician to suspect celiac disease, which is
diagnosed by testing for gluten antibodies and then performing a small
bowel endoscopy when the blood tests are positive. The endoscopy
allows the physician to look for damage to the small intestine.
Danielle's endoscopy was positive and the Gannons heard the words
celiac disease for the first time. "We were glad to hear the
diagnosis," Shelly says. "We thanked God when Dr. Ferenci told us it
could be handled with the diet."
There is no cure for celiac disease, but a diet completely free of
gluten resolves the symptoms. As long as patients completely avoid
gluten at all times, they stay healthy and normal. It's an easy
solution that is actually very challenging.
Dr. Ferenci was honest and told Shelley and Rich that he knew very
little about the diet. The nutritionist they consulted also knew very
little. Like other celiac parents, the Gannons got their information
in bits and pieces--from other parents and support groups and from
newsletters.
They quickly discovered that the miraculous cure was amazingly
difficult to carry out. The main source of gluten is wheat, and wheat
is found in many common foods. Gluten is also found in rye, barley,
spelt, kamut, triticale, and possibly oats. So nearly all common
cakes, cookies, cereals, pastas, noodles, pretzels, etc., not to
mention pizza, bagels, and beer, contain gluten. It is also found in
many processed foods and some pharmaceuticals.
When a diagnosis of celiac disease enters a household, shopping for
food and cooking it take on enormous meaning and sense of
responsibility. Not only must Danielle's food now be totally gluten
free but Shelley also has to be careful so the food Danielle eats is
not contaminated by gluten-containing foods that might be around.
Because of Rich's job, the family has to meet the demanding needs of
the gluten-free diet in two locales. During the football season, the
Gannons live just outside of Oakland. In the off season, they return
to Minneapolis. Shelly describes coping with gluten-free living as a
lot of work, but well worth the price when she considers what the diet
does for Danielle. When properly carried out, the GF diet is
amazingly restorative and protective. No gluten. No problem.
Danielle, now 3, is still not totally able to tell her parents what's
going on inside. Shelley says she is looking forward to the day when
Danielle can accurately describe how she is feeling. Meanwhile, like
other celiac parents, Shelley worries. She says the hardest part is
when she knows Danielle is not feeling well and she has to ask
herself, "Is it gluten?"
Celiac parents also worry when their children are not at home and are
in a situation where they might be fed something that contains gluten.
They become concerned that other adults will not realize the
seriousness of the problem and figure a little bit of gluten won't
hurt.
This means every adult who might come in contact with a celiac child
must be taught about gluten and where it's found. GF snacks also need
to be available, especially when the child is young. Danielle's
nursery school has kept a supply of GF treats so there is something on
hand for her when needed. Shelley says Danielle is learning to ask
whether a food is gluten free before she accepts it.
Despite the dietary frustrations, Danielle is doing fine. She is
"right on track" in her physical and psychological development.
Shelley describes her daughter as "very active." "She doesn't like to
sit still for very long," she says, and likes climbing, water play,
swimming and her gymnastics class in California.
"We try not to look on gluten sensitivity as a disease but rather as a
condition," Rich says. "Danielle's sensitivity to gluten is not going
to go away, so we try to treat her special diet as our 'normal' and we
don't focus on it. Of course we make sure her diet is taken care of,
but we treat it as absolutely normal. Overall we try to be positive
and raise our daughters as if they are healthy young kids with a
healthy, bright future ahead of them--which, of course, they are!"
"We don't want to limit Danielle. We don't want the 'difference' in
her diet to make her feel 'different' from others. We want her to be
happy." In this respect, the Gannons are just like any other parents,
gluten-challenged or not!
Rich admits he was frustrated with the medical community during
Danielle's crisis. He says his football career means he's been
treated by world renowned specialists, which has taught him the
importance of paying attention to details, something that did not
always happen when Danielle began to get sick and as she got sicker.
He also expresses concern about the lack of food labeling that would
make it easier for those with celiac disease to stay gluten-free.
Gluten is rarely listed on a food label as gluten, but it can be
hidden in ingredients such as modified food starch, hydrolyzed
vegetable protein and a long list of other ingredients with
uninformative names.
"We care about this disease and we are trying to do a lot of things to
raise awareness," Rich says. "We would like the entire country to
know what celiac disease and gluten-free living are all about. We
don't want other parents to go through what we went through. We would
like to have doctors think 'celiac disease' when they see a child with
Danielle's symptoms. And we would like to see our daughter cured--or
at least have an easier time meeting her dietary needs."
To that end, the Gannons are telling their story and doing everything
they can to make people aware of celiac disease. Awareness and
knowledge will bring about quicker, less traumatic diagnoses.
They would also like the food processing companies and the government
to be aware of the problem and help create clearer labeling on foods
so eating gluten free is less of a challenge.
They hope the general public becomes aware of the problem, so there
are fewer problems when celiac children are away from home, in school
or visiting friends, for example, or when any celiac is traveling,
hospitalized--or hungry!
Rich and Shelley know all of the above will be much easier to attain
when the health care and food processing communities realize how many
American celiacs there really are. For this reason, they are trying
to raise money to support the Center for Celiac Research (CFCR) at the
University of Maryland. The CFCR is currently conducting a
multicenter prevalence study that will indicate the number of celiacs
in this country. Initial results are eye-opening (perhaps as common
as 1 in 150). Completion of this massive study is the key to making
everything else happen, the Gannons say.
Danielle is thriving and the gluten-free diet has become a way of life
in the Gannon household. So has activism. Shelley and Rich are
taking time from their overly busy lives so they can help make celiac
disease better known and support research that will help make life
better for those who are gluten sensitive. Celiacs across the country
are grateful for their help.
[This article was reprinted with permission from the May/June 2000
issue of "Gluten-Free Living". Subscriptions are $29 for 1 year (6
issues) or $49 for 2 years (12 issues). Send a check payable to
"Gluten-Free Living" to PO Box 105, Hastings-on-Hudson, NY 10706]
Return to the Table of Contents
Eating GF at Outback Steakhouse<1>
----------------------------------
by Barbara Hicks
I had been inquiring with Outback Steakhouse about which items on
their menu would be GF. I received an e-mail from Aviva Baker at
Outback just a couple of days ago. She worked with Cynthia Kupper, a
Registered Dietitian from the Gluten Intolerance Group [and their CEO]
and came up with the following information:
The following items are gluten-free (GF) with some substitutions, as
listed below:
Grilled Shrimp on the Barbie--seasoned and served with Outback's own
Remoulade Sauce
Queensland Salad--Seasoned chicken salad served on a bed of fresh
greens with Monterey Jack and cheddar cheese, bacon, chopped egg,
tomato and toasted almonds
***All salad dressings are GF, including the caesar.
***Be sure to request no croutons on the salads.
Brisbane Caesar Salad--Grilled shrimp on the barbie atop a caesar
salad big as the never never.
Chook-N-Caesar Salad--Grilled chicken breast served atop a Hooley
Dooley portion of Caesar Salad.
Drover's Platter--generous portion of ribs and chicken breast on the
barbie with Aussie Chips and cinnamon apples.
***Barbecue sauce IS GF.
***Aussie chips are NOT GF. Substitute vegetables without
seasonings, potato, or sweet potato.
***Cinnamon apples are to be avoided.
Ribs on the Barbie--Imported baby back ribs, smoked and grilled with
Aussie chips and cinnamon apples.
***Same cautions as above concerning Aussie chips and cinnamon
apples.
Botany Bay Fish of the Day--Fresh catch, lightly seasoned and grilled,
with fresh veggies.
***Avoid the pasta and seasoned rice.
***Substitute veggies without seasonings.
Chicken on the Barbie--Seasoned and grilled breast served with BBQ
sauce and fresh veggies.
***BBQ sauce is GF.
***Substitute veggies without seasonings.
House or Caesar Salad--with any grilled on the Barbie favorite
***All salad dressings are GF, including the Caesar.
***Be sure to request no croutons on salads.
Steak & Veggie Griller--seasoned sirloin medallions.
***Steamed veggies have a seasoning mix that contains gluten.
Substitute vegetables without seasonings, potato, or sweet
potato.
Chicken & Veggie Griller
***Same cautions as above.
Alice Springs Chicken--grilled chicken breast and bacon smothered in
mushrooms, melted Monterey Jack and cheddar cheeses, with honey
mustard sauce. Served with Aussie Chips.
***Avoid Pasta and seasoned rice.
***Aussie Chips are not GF. Substitute vegetables without
seasonings potato, or sweet potato.
Jackeroo Chops--two 8 ounce center cut pork chops served with cinnamon
apples and a choice of potato.
***Avoid cinnamon apples.
House or Caesar Salad--with any Down Under Favorite for an additional
charge.
***All salad dressings are GF, including the Caesar.
***Be sure to request no croutons on the salad.
Steaks:
Rockhampton Rib-Eye--a 14-ounce rib-eye steak
Victoria's Filet--a 9-ounce tenderloin
New York Strip-- a 14-ounce New York Strip
Prime Minister's Prime Rib--a tempting 16-ounce cut oven roasted
slowly. 12-ounce cut, or 8-ounce cut also available
Outback Special--a 12-ounce center cut sirloin seasoned and seared
to perfection
The Melbourne--a 20-ounce porterhouse--it's a bonzer
Outback Rack--a 14-ounce rack of lamb served with a cabernet sauce
Add on mates--5 grilled shrimp on the barbie with any entree,
Sauteed 'Shrooms
Regarding all the above steak dinners:
***Aussie chips are NOT GF. Choose jacket potato or sweet
potato.
***If you want steamed vegetables, request them without
seasonings.
***Avoid the Sauteed 'Shrooms.
Aussie Sandwiches:
The Mad Max--a serious burger, served with bacon, American cheese,
pickles, onions, mayonnaise, lettuce, and tomato.
No Rules Burger--Choice of toppings--bacon, grilled onions, sauteed
mushrooms, Swiss cheese, lettuce and tomato, American cheese,
BBQ sauce, pickles and onions.
The Outbacker--old reliable, burger with lettuce, tomato, onion,
pickle and mustard. Add cheese, no charge.
Barbie Chook 'N Bacon--temptingly barbecued chicken breast served
with bacon, Swiss cheese, lettuce and tomato.
Sweet Chook O' Mine--tender grilled breast of chicken with Swiss
cheese, bacon, lettuce and tomato with a honey mustard sauce.
Regarding the above sandwiches:
***Aussie chips are NOT GF. Substitute veggies without
seasonings, potato, or sweet potato.
***Obviously avoid the bread. Some states and restaurants will
allow you to bring in your own bread. Do not send it to the
kitchen. Simply order your sandwich without bread and build
it at the table.
***Burgers are made from 100% beef.
***Bacon, mayonnaise, mustard, ketchup, cheeses, BBQ sauce, and
honey mustard sauce are all GF.
***Avoid the pickles.
Sydney's Sinful Sundae--Vanilla ice cream rolled in toasted coconut,
covered in chocolate sauce or homemade caramel sauce, and topped
with whipped cream.
***Both chocolate sauce and caramel sauce are GF.
Joey Menu for Kids:
Junior Ribs--GF
***Aussie chips are NOT GF. Substitute vegetables without
seasonings, potato or sweet potato.
Boomerang Cheese Burger--GF without bread
Spotted Dog Sundae--GF
-=-=- -=-=-
Outback Steakhouse "Aussie Chips": Two different and reliable sources
have checked with Outback Steakhouse about the gluten-free (GF) status
of their Aussie Chips. The sources have used reliable contacts within
the Outback Steakhouse organization but unfortunately not the same
individual contact. The results to date are one contact for GF and
one contact for NOT GF and both statements are public. Until the two
sources within Outback Steakhouse can resolve the differences so that
one official position can be upheld by the corporation, TCCSSG must
recommend that Outback Steakhouse "Aussie Chips" be considered as NOT
GF.--Tom Sullivan
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 Greater Philadelphia CS Support Group :
: ------------------------------------------------------- :
: newsletter: July 2000 Phyllis J. Brogden, chairperson :
: 6318 Farmar Lane :
: Flourtown, PA 19031 :
:...........................................................:
Gluten-Free Foods at Taco Bell: The following is a listing of Taco
Bell's gluten-free items (as listed in information sent to Bert Mugler
dated March 13, 2000):
pintos and cheese
bean tostada
nachos
nachos supreme (minus the beef)
nachos bellgrande (minus the beef)
cheese sauce
guacamole
hot or mild sauce
jalapeno peppers
nacho chips
fiesta salsa
lettuce
diced onions
green onions
tomatoes
sour cream
seasoned rice
picante sauce
red sauce
cheddar cheese
three cheese blend
For more information, write to Taco Bell Corp., 17901 Von Karman, Mail
Drop C506, Irvine, CA 92614, Attn: Consumer Inquiries; or call
1-800-TACOBEL.
-=-=- -=-=-
Zithromax is not gluten-free (GF) in tablet form, so ask for the
liquid (suspension) form. From Stokes Pharmacy, 800-754-5222, May 13,
2000.
Return to the Table of Contents
...................................................
: :
: Excerpts from the Maryland Celiac Support Group :
: ----------------------------------------------- :
: newsletter: May 2000 Mary McKenna, editor :
: 11 Tenby Court :
: Timonium, MD 21093 :
:.................................................:
Gluten-Free Food Vendor Websites, each checked out by Jackie Pontious:
Dietary Specialities http://www.menudirect.com
Ener-G Foods http://www.ener-g.com
Garden Spot Distributors http://www.gardenspotdist.com [not all
products are GF]
Gluten-Free Pantry http://www.glutenfree.com
Kinnikinnick Foods http://www.kinnikinnick.com
Authentic Foods http://www.authenticfoods.com
Miss Roben's http://www.missroben.com
Gillian's Foods http://www.gilliansfoods.com
Mr. Spice Products http://www.mrspice.com
Gluten Free Cookie Jar http://www.glutenfreecookiejar.com
Pamela's Products http://www.pamelasproducts.com
'Cause You're Special http://www.causeyourespecial.com
Liv-N-Well Distributors http://www.liv-n-well.com
Cecilia's Gluten-Free Grocery http://www.glutenfreegrocery.com
Deroma (Glutino) http://www.glutino.com
Gluten-Free Food Vendor Directory http://www.gfmall.com
Gluten-Free Mall http://www.glutenfreemall.com
Return to the Table of Contents
-=-=- -=-=-
Increased Zonulin Levels in Celiacs:<2>
---------------------------------------
Researchers at the University of Maryland School of Medicine have
found that the human protein zonulin, which regulates the permeability
of the intestine, is at increased levels during the acute phase of
celiac disease. The discovery suggests that increased levels of
zonulin are a contributing factor to the development of celiac disease
and other autoimmune disorders such as insulin-dependent diabetes,
multiple sclerosis, and rheumatoid arthritis. The findings are
published in the April 29 issue of the journal Lancet.
"Zonulin works like the traffic conductor or the gatekeeper of our
body's tissues," says lead author Alessio Fasano, M.D., professor of
pediatrics and physiology at the University of Maryland School of
Medicine, and director of Pediatric Gastroenterology and Nutrition at
the University of Maryland Hospital for Children. "Our largest
gateway is the intestine with its billions of cells. Zonulin opens
the spaces between cells allowing some substances to pass through
while keeping harmful bacteria and toxins out," explains Dr. Fasano.
With celiac disease, the body reacts to gluten by creating antibodies
that attack the intestine and cause severe damage over time. Unlike
other autoimmune disorders, scientists also know that celiac disease
is triggered by a specific antigen, which is the protein gluten.
Celiac disease is also known to cause increased permeability of the
intestine. In addition, many people who suffer from celiac disease
also suffer from other autoimmune disorders.
The research team examined the intestinal tissue of seven people with
celiac disease, and six patients without the disease. Patients with
active celiac disease showed higher levels of zonulin and anti-zonulin
antibodies compared to non-celiac patients and patients in remission,
who were eating a gluten-free diet.
"With celiac disease, we could never understand how a big protein like
gluten was getting through to the immune system. Now we have the
answer," explains Dr. Fasano. "People with celiac disease have an
increased level of zonulin, which opens the junctions between the
cells. In essence, the gateways are stuck open, allowing gluten and
other allergens to pass. Once these allergens get into the immune
system, they are attacked by the antibodies," adds Dr. Fasano.
"I believe that zonulin plays a critical role in the modulation of our
immune system. For some reason, the zonulin levels go out of whack,
and that leads to autoimmune disease," explains Fasano.
Dr. Fasano adds that more research is needed. He is currently
conducting experiments with diabetic rats. Preliminary results from
his experiments show that insulin-dependent diabetes occurs in lab
rats about three to four weeks after increased intestinal
permeability. The researchers believe the increased intestinal
permeability is associated with increased levels of zonulin.
"We are at the threshold of exciting discoveries in this field," says
Dr. Fasano. "We now have a new way of looking at our cells. Our
cells are not stacked together like bricks. They are a dynamic field,
which is constantly in flux."
Return to the Table of Contents
........................................................
: :
: Excerpts from _Celiac Connections_ :
: ---------------------------------- :
: Jan./Feb. 2000 Barbara Jordan, editor :
: The Celiac Disease Resource, Inc. :
: PO Box 621 :
: Glenmont, NY 12077 :
:......................................................:
Pamela's Story
--------------
Yes, there is a Pamela behind the cookies. But not just any
cookies--they're also wheat free and gluten-free. BUT WHY you ask???
Am I Celiac? No, simply a third generation in the Natural Food
Industry.
I grew up in the natural food business and one of my first jobs in my
family's bakery was wrapping our rice and soya cookies. I thought
they were awful and I always wondered who would want to eat them? I
also knew there was a need for wheat-free products as many people were
choosing to or finding better health when eating a wheat-free diet,
and others had to because of Celiac Sprue. I couldn't imagine never
being able to walk into a store and buy cookies, cake, bread,
crackers, pretzels, pancake mix, or brownies because they all
contained wheat! Or when you did find something, it tasted like the
cookies I was wrapping. What would you eat? Imagine being a kid and
having to eat this stuff!
I wondered if I could make products that met special dietary needs
like Celiac, but tasted great and looked normal? Wouldn't everyone
buy them if they were good? And, if I changed that drab health food
packaging, wouldn't they also be more appealing? Who would want to
eat something that looks like it tastes--bad? The challenge turned
into a business called Pamela's Products.
In 1941, my grandparents, Matthew and Amelia Giusto, bought one of the
first health food stores in San Francisco and named it Giusto's Golden
Crescent. As young boys, my dad and uncle worked everyday after
school in the small, in-store bakery. They would help bake whole
grain breads and special allergy products that Grandma sold up front
along with vitamins while my Grandfather was out peddling the bread to
other stores. My grandparents actually had gluten-free bread (if you
could call it bread) and those rice and soya cookies way back in the
1940's. Years later they sold the store and became a wholesale
supplier of natural and organic baked goods, fresh milled flours from
their own mills, and a distributor of natural and organic baking
supplies. My father and uncle eventually took over the business in
1965 and later started me in my career as a cookie packer.
As a little girl baking at home I always tried to fool my dad by
baking cakes that looked as if they came from a bakery. Later as an
adult I would try to fool him with my wheat-free products. Could I
make products that looked normal and tasted so delicious that no one,
not even Dad, would know they were wheat-free?
My father indulged my baking but expected me to marry and have kids,
not run the family business. So in 1988, I left the family bakery
with my one little pallet of belongings and my first forklift.
Pamela's Products became an independent business featuring wheat-free
and gluten-free foods on April Fool's Day.
Today I sell 19 different items: 14 cookies, 3 biscotti, and 2 baking
mixes. I continue to do the product development myself, always trying
to improve upon recipes and create additional wonderful foods that
look and taste "like the real thing". I still work closely with my
family's business as they mill all my rice flour and package my baking
mixes. And for Dad, I got married and had a baby...
Return to the Table of Contents
.................................................................
: :
: Excerpts from the Midlands Chapter 13 Support Group :
: --------------------------------------------------- :
: newsletter: July 15, 2000 Ben Crouse, editor :
: 2278 Liberty Avenue :
: Missouri Valley, IA 51555-5011 :
:...............................................................:
Product Information
-------------------
by Alma Meyer
* Knorrs Chicken and Beef Bouillon are both gluten-free (GF). You may
find them in the Mexican food section in some stores. They may be
labeled as Product of Mexico, if so, they are still GF. (Confirmed
by phone call, 800-338-8831, on Feb. 16, 2000.)
* Nature Made Cal Burst Calcium Chews in cherry and chocolate flavors
are GF. (Checked by phone call, 800-276-2878, on Mar. 29, 2000.)
Return to the Table of Contents
..............................................
: :
: Excerpts from _Alamo Celiac_ :
: ---------------------------- :
: Dec. 1999 Lynn Rainwater, editor :
: San Antonio CS Support Group :
: 1023 Cloverbrook :
: San Antonio, TX 78245-1604 :
:............................................:
Just a Thought...
-----------------
by Christie Schroeter
Social circles revolve around food. They always have and probably
always will. Never is that such a glaring fact as when you are
diagnosed with celiac sprue. Suddenly you are confronted with
explaining your dietary restrictions to old and new friends,
relatives, and business associates.
Just when you're trying to get the hang of gluten-free living, friends
call to see if a movie and pizza would be a fun evening out. Or Aunt
Bessie asks you over for one of her home cooked meals, with hidden
ingredients smothered into every morsel. And there's always the
potluck surprise at church. Who knows what mystery lurks in those
mounds of food?
My way of coping at first was to become a "closet celiac". Don't
admit there's a problem, avoid meal situations, and hope someone would
suggest an activity that didn't involve food. This never works. How
long can you hide out?
Invitations became less frequent, and finally dwindled down to
somewhere in-between rare and non-existent. After much soul
searching, I decided that I wanted to fully participate in life, and
that meant coming to terms with the food issue. No more excuses, no
more hiding.
When I'm asked out to lunch these days, I explain that I have dietary
restrictions and then suggest a restaurant that I feel can work out an
acceptable meal for me. Sometimes that means calling ahead and
talking to the chef or manager about the gluten-free items on the
menu. Pot luck suppers are easy if I bring two large contributions to
the meal that I know I can eat. Very rarely do others notice that I'm
not partaking of the other selections. If they do, I quietly explain
that I'm on a strict diet, not elaborating anymore than I have to.
Showing up with tasty dishes at a family gathering works well also.
Not only am I guaranteed food on my plate, but it helps the person out
who has no idea what to cook for me. I always try to blend my
contributions with whatever the hostess/host is serving. (Nothing
like bringing chili when the entre is filet mignon.)
It's a challenge living in a unique way in a gluten-laden world. No
doubt about it. But hiding behind my fears only serves to separate me
from enjoying the company of others. I find myself becoming more
creative as time passes. When spring arrives in the year 2000, I'm
planning on inviting friends for some short day trips in the car to
scenic areas. Doesn't a picnic lunch sound like fun?
Return to the Table of Contents
-=-=- -=-=-
A Study of Subclinical/Silent Celiac Disease
--------------------------------------------
a review by Lynn Rainwater
This is a review of "The clinical pattern of subclinical/silent celiac
disease: An analysis on 1026 cases", by G. Bottaro, F. Cataldo, N.
Rotolo, M. Spina, G. R. Corazza, The American Journal of
Gastroenterology, March 1999, Vol. 94, No. 3.
We are slowly building a better picture of celiac disease. Diagnosing
physicians have found there are many celiacs whose disease does not
fit the classical definition of a gluten-sensitive enteropathy
accompanied by gastrointestinal symptoms (diarrhea, weight loss,
abdominal pain, vomiting). In this Italian study, the authors focused
on patients diagnosed with subclinical or silent celiac disease. They
defined subclinical celiac disease as a gluten-sensitive enteropathy
with extraintestinal symptoms; silent celiac disease as a
gluten-sensitive enteropathy not accompanied by any symptoms, but
identified during screening.
Forty-two centers throughout Italy participated in the study, which
looked at all subclinical/silent celiac patients diagnosed by them
during the five-year period 1990-1994.
The table below gives some basic numbers for the study. The larger
number of children in the study was due to the fact that 30 of the 42
participating centers dealt with childhood celiac disease, 7 with
adult celiac disease, and 5 with both (children's centers who treated
adults in the absence of gastroenterologists interested in celiac
disease.)
Total Children Adults
----- -------- ------
Classical cases 2,443 2,036 407
Subclinical/silent cases 1,026 644 382
Subclinical/silent cases with
first-degree relatives
with celiac disease 192 101 91
Subclinical/silent cases as
% of total cases 29.6% 24.0% 48.4%
A breakdown of the subclinical/silent cases by number of symptoms
showed:
Total Children Adults
----- -------- ------
More than one symptom 365 234 131
One symptom 433 251 182
No symptoms 228 159 69
Primary symptoms that led to intestinal biopsy for the patients
diagnosed with subclinical celiac disease, with frequency (%) of each
symptom also shown, were as follows (percentages rounded up to nearest
whole number):
Total Children Adults
----- -------- ------
Iron-deficiency anemia 314 39 % 169 35 % 145 46 %
Short stature 153 19 % 145 30 % 8 3 %
Dermatitis herpetiformis 73 9 % 12 2 % 61 19 %
Anorexia 62 8 % 62 13 % 0 0 %
Epilepsy/cerebral calcifications 26 3 % 13 3 % 13 4 %
Neuropsychic complaints 25 3 % 18 4 % 7 2 %
Constipation 21 3 % 17 4 % 4 1 %
Osteoporosis 11 1 % 0 0 % 11 4 %
Other 112 14 % 48 10 % 64 20 %
Of the 228 patients diagnosed with silent celiac disease (all but
three identified through blood screening), 91 (39.9%) were
first-degree relatives of celiac patients, 55 (24.1%) had type 1
diabetes, 7 (3.1%) had Down's syndrome, and 5 (2.2%) had IgA
deficiency.
The most common associated diseases for all the study patients, both
those with subclinical and those with silent celiac disease, with
frequency (%) of each symptom also shown, were:
Total
Children
Adults
Total Children Adults
----- -------- ------
Type 1 diabetes 76 7.4 % 49 7.6 % 27 7.1 %
Atopy (allergy) 32 3.1 % 22 3.4 % 10 2.6 %
Down's syndrome 19 1.9 % 18 2.8 % 1 0.3 %
IgA deficiency 15 1.5 % 11 1.7 % 4 1.0 %
After diagnosis, a strict gluten-free diet was followed by all
subclinical and silent cases. The patients with subclinical celiac
disease quickly improved, with all symptoms disappearing within 12-15
months. Only 50 of the 228 patients with silent celiac disease noted
an improvement in their health.
The centers participating in this study, along with the authors, are
to be commended for establishing a knowledge base for us in the area
of subclinical and silent celiac disease.
Return to the Table of Contents
References
----------
<1> "Outback Steakhouse GF Summary", by Barbara Hicks, from the CELIAC
Listserv archives on the Internet, posted April 20, 2000. To
obtain a copy on the internet, go to
http://maelstrom.stjohns.edu/archives/celiac.html and click on
"April 2000, week 3".
<2> From a EurekAlert! press release on Dr. Alessio Fasano's work on
zonulin. Contact Tim Parsons, tparsons@umm.edu, 410-328-9260,
University of Maryland Medical Center.
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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
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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
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Original material used in The Sprue-nik Press is placed in the
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Feel free to reproduce any portion of this newsletter, unless it
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