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NTGIG’s Tips to New Celiacs
North Texas
GIG Support Group – Fort Worth/Metroplex Area
NEW MEMBER
RESOURCES
NTGIG’s role as a support group is
to provide a wealth of helpful tips to newly diagnosed
celiacs so that they might get a jump start on living
the gluten-free life. A quick start to eating
gluten-free is critical because a celiac immediately
benefits from improved health plus realizes a decreased
risk of suffering future additional autoimmune or other
severe health problems.
NTGIG and Lone Star GIG compiled
this collection of many useful hints on dealing with
celiac disease gathered by members over recent years.
However, the packet is obviously not intended to be a
formal or complete document on every aspect of the
disease. Many comprehensive books and publications are
available covering all the necessary details about
celiac disease, and we try to point you in the direction
of these wonderful resources. In addition to tips from
our local group, we include copies of information sheets
shared by national GIG. All of this should provide a
good, brief overview and set you on your own path of
self-discovery. In the end, you must search out and
utilize the resources that make the most sense to you
and to your lifestyle.
LIMITS OF
THIS DOCUMENT
In your research, you will be
exposed to many opinions on aspects of celiac disease,
nutrition, and eating gluten-free. Some opinions are
well-founded while others may be strictly anecdotal or
less grounded in fact. All of us must learn to sift
through the information to discern its value. This
document is simply one more resource to be considered as
you make your final decisions on how to address your
health problems based on recommendations from your
health care providers and on your increasing knowledge
of celiac disease. (Individuals must consult with
their own doctors for advice and please realize that no
liability is assumed by NTGIG.)
CELIAC
DISEASE AND DERMATITIS HERPETIFORMIS
Included later in the packet are
several information sheets on celiac disease. You will
also find information on dermatitis herpetiformis, the
“skin version” of celiac disease. DH individuals seem
to get short shrift as we are always referring to the
“celiac” without making clear we are including DH
sufferers in the umbrella. For purposes of this
document, please know that we DO include those with DH
when we talk about the celiac.
As Dr. Peter Green says, dermatitis
herpetiformis
is celiac disease of the skin. Dermatitis
herpetiformis as a manifestation of celiac disease
occurs in about 10% of celiacs. A person may suffer
with itchy patches and skin lesions for years, going
through misdiagnosis after misdiagnosis, before
receiving the correct diagnosis. DH sufferers also
experience gastrointestinal damage. As with CD, the
only cure for DH is a gluten-free diet. A dermatologist
is the specialist who normally performs a skin biopsy
when DH is suspected. Don’t be surprised when the
doctor removes skin cells adjacent to the lesion rather
than a section of the lesion itself. This is the proper
biopsy method for DH. An information pamphlet on DH is
included in the second half of this packet.
DOCTORS,
SYMPTOMS, SILENT CD, BLOOD & ENDOSCOPY TESTS, DIAGNOSIS
It is important to work with your
doctor and possibly a dietitian as you proceed through
diagnosis and as you devise your personal plan for
returning to good health. They will be able to help you
in the information sifting process. It is well to
remember that some doctors are very knowledgeable of the
major aspects of celiac disease. However, some doctors,
especially if they are not specialists, may be less
informed of the most recent news on the complexity and
prevalence of celiac disease. If you feel uneasy about
answers you are getting, it is ok to check around and
switch providers. Uninformed doctors may fail to
realize that many celiacs fall under the category of “silent
celiac disease.” They suffer few or almost no
“typical” symptoms and yet they are undergoing
malabsorption, intestinal damage, and long-term risk of
developing other serious health problems, including
additional autoimmune diseases, osteoporosis, anemia,
and higher risk of intestinal lymphoma.
Symptoms preceding diagnosis of
celiac disease are widely and wildly varied. Most of
our listed resource books offer good discussions of the
symptoms. As many members reveal, they have been told
that they can’t possibly have CD because they are
overweight or because they have constipation or because
they do not have anemia . . . and on and on. We now
know that while some celiacs do fall under the outdated
textbook description of underweight, failure to thrive,
or diarrhea, many more celiacs exhibit other symptoms
with only an occasional nod to “typical”
gastrointestinal problems. This disease has complex
manifestations and provides a little more insight as to
why doctors may sometimes run into diagnostic problems.
Lab Testing and Endoscopy. During the
diagnostic process, you will learn that while blood and
lab tests are becoming extremely dependable and
accurate, the endoscopy is currently still considered
the “gold standard” for diagnosis. Discussions of these
topics are available at the official GIG site and in
books such as Celiac Disease: A Hidden Epidemic
by Peter H. R. Green, MD. The professionals and the
labs interpreting the various blood tests should have
specific experience on the celiac blood test protocols
since they have changed in recent years. New and more
sophisticated tests have become available. The doctor
performing the endoscopy should know that at least 10 –
15 tissue samples must be obtained to insure an accurate
picture of the intestinal health. Background reading
about these procedures in the sources we have provided
will give you more confidence as you go through
diagnosis.
Follow-Up Testing and Refractory Sprue.
Improvement of symptoms and general health should result
from following the gluten-free diet. After a diagnosis
of CD, recommendations for follow-up testing to confirm
healing may vary. Some GI doctors prefer a yearly
work-up, perhaps only the blood tests or perhaps
including endoscopy. Other doctors feel that follow-up
on a more occasional basis is sufficient to be sure the
celiac patient is not unknowingly ingesting gluten.
Your doctor best knows your individual medical
condition. As mentioned above, blood testing has
progressed and you must be sure you read the most recent
publications in order to keep up on the preferred
testing. The type of tests performed for follow-up may
vary from the diagnostic type of tests. Of course, if
you are having symptoms, don’t hesitate to inform your
doctor. Also, keep in mind that a small percentage of
celiacs have refractory sprue. The villi does
not heal properly, even though the patient is following
the gluten-free diet. These celiacs must sometimes
receive special medical attention, including treatments
with steroids or cyclosporins. Other problems must also
be ruled out.
Are Relatives likely to have celiac disease?
Celiac disease is an autoimmune disease with a
genetic component which must be “triggered.” Anywhere
from 10% to 20% of an affected person’s first-degree and
second-degree relatives will have CD. Certainly, any
relative with symptoms should undergo testing. Even if
initial tests are negative, they need to be repeated at
3 to 5 year intervals because the onset of celiac
disease could occur at a later date. Testing for
children may be unreliable before the age of 5. Of
course, some children develop severe symptoms before
that time and a pediatric gastroenterologist must be
consulted in order to proceed with appropriate testing.
In addition, genetic testing is available for the
specific genes required to express the disease through
the molecules HLA-DQ2 and HLA-DQ8. If this test is
negative for both genes involved, the potential celiac
does not ever have to be re-tested. However, a
positive gene test is not conclusive for a positive
celiac diagnosis since a large percentage of the
population tests positive for the gene(s) but never
develops CD.
WHY GET A
MEDICAL DIAGNOSIS IF I FEEL BETTER ON A GLUTEN-FREE
DIET?
In this age of information, many
people learn about celiac disease on their own and may
feel their symptoms seem to be a match-up. They begin
eating gluten-free and their symptoms disappear. Thus,
they diagnose themselves or family members as celiacs
and see no reason to pursue a medical diagnosis.
This approach is understandable
because no one wants to go back to suffering if they
believe they have found a cure. However, it is
important to get a medical diagnosis for some of the
following reasons: 1) Insurance may cover more
associated health costs, medical procedures, and
laboratory tests with a medical diagnosis of CD. 2)
Self-diagnosed individuals are more likely to cheat if
they do not have the “proven” diagnosis. 3) Celiacs
may or may not have symptoms and these symptoms may come
and go. That is one reason CD is not on the radar
screen of many physicians. If the individual does not
have CD, it is important to discover what else may be
causing these symptoms. Thus, making a self-diagnosis
based only on symptoms is not a sound approach. 4) If
an individual has a wheat allergy and not the autoimmune
disease CD, then that person can enjoy a much broader
diet of grains. 5) If a person does indeed have CD,
then the doctor knows to be on the look-out for other
potential complications. The longer a celiac goes
undiagnosed, the more likely he/she is to have another
autoimmune disease. In addition, it appears that people
with celiac disease and dermatitis herpetiformis who
have not begun a gluten-free diet are at an increased
risk for intestinal lymphoma. This risk is reduced
almost to the same as the general population after a
period (usually marked by 5 years) of gluten-free
eating. 6) If a person has medically diagnosed CD,
relatives should certainly consider testing regardless
of the presence or absence of symptoms.
WHAT IS THE
GLUTEN CHALLENGE?
If you are one of those who
self-diagnosed and started eating gluten-free and then
decided it would be a good idea to get a medical
diagnosis (maybe for one or more of the reasons listed
above), be forewarned that the test results may be
skewed. Your blood tests may not reflect levels
indicating CD and your gut and villi may have healed
enough to preclude an endoscopic diagnosis of CD. Your
system is no longer undergoing the autoimmune reaction.
In this situation, a return to eating gluten - the
GLUTEN CHALLENGE – may be necessary to insure that your
autoimmune reactions will start up again (unfortunately)
before testing. It would be best to consult a doctor
before following this course. The doctor can advise on
how long you should eat gluten again before you are
tested.
LACTOSE
INTOLERANCE
Many celiacs also find they have
lactose intolerance secondary to celiac disease. In
fact, some are first diagnosed with lactose intolerance
and only later with CD. Lactose is digested in the
small intestine by the enzyme lactase. If something
such as celiac disease interferes with this process and
lactose is not absorbed, the sugars are broken down in
the colon, producing gas, bloating, and diarrhea. Once
a celiac is on a GF diet and the villi heal, a celiac
may be able to once again ingest and absorb lactose
without problems. However, some celiacs have a primary
lactose intolerance problem (as do some non-celiacs)
which is a genetic lack of the lactase normally present
in the brush border of the small intestine. This
condition is independent of CD and may be treated with
lactase pills. Some people can tolerate a certain limit
of lactose per day.
FOR THE
KIDS
We have learned that diagnosing a
celiac child can be a real challenge. Once a diagnosis
is made, life changes for the family. All members must
learn to adjust and, as parents of celiac children will
attest, it is difficult to help that child overcome
feelings of deprivation adhering to a gluten-free diet
while watching peers eat a more typical American diet.
While Lone Star is not specifically geared toward
children’s needs, we can point you in the right
direction to receiving the help you need.
A preeminent author on the needs of
celiac children is Danna Korn. Her national
organization, Raising our Celiac Kids, R.O.C.K., is a
wealth of information on addressing the needs of celiac
families and small children – Raising our Celiac Kids -
R.O.C.K., 3527 Fortuna Ranch Rd., Encinitas, CA 92024,
1-858-395-5421. Visit Danna’s R.O.C.K. website at:
www.celiackids.com.
Through the efforts of a small
group of celiac parents and some dedicated Gold Award
Girl Scouts in this area, North Texas is lucky and
privileged to offer one of the few summer gluten-free
camps available in the United States for children with
gluten sensitivities. Please visit the website below to
begin investigating this camp as a possibility for
youthful celiacs.
►Great Gluten Escape 2007!
Children’s GF Summer Camp◄ Live in a gluten-free world
for 5 nights and 6 days, June 17-22, 2007. Designed to
accommodate kids ages 7 – 14, with siblings also welcome
(even if they are not affected). Camp Gilmont, 2 hrs.
east of Dallas, is a week-long resident camp for kids
with dietary restrictions related to Celiac Disease,
Dermatitis Herpetiformis, and/or Gluten
Sensitivity/Intolerance. Website at:
www.dallasrock.org/gge.htm.
Also, please visit the national GIG
site, www.gluten.net,
for information on other kids’ gluten-free camps – click
on GIG Events and then Kids Camps.
North Texas GIG,
www.northtexasgig.com, has a KIDS group (North
Texas GIG KIDS Club) listed under Contact Information at
its site. Contact Melissa Thompson at
kids@northtexasgig.com.
SO . . .
WELCOME . . . and DO NOT CHEAT!
So, welcome to “our world” of
celiac disease and learning to live without gluten. We
understand the confusion and the temptations you will
feel. Many members devise tricks to help them through
hard times, such as eating a bite of chocolate bar
instead of giving into that desire for that “real”
cupcake. You will learn to deal with feeling “deprived”
of favorite foods. Just keep reminding yourself of the
way you felt before you started GF eating, and remember
the long-term damage being done to your gut, even if it
is sometimes “silent.” We know that a celiac not in
compliance with a gluten-free diet is at a significantly
higher risk of other autoimmune diseases as well as
intestinal lymphoma. We only hope these tips help a
little as you find your way to healthy eating. Food
manufacturers have become aware of the gluten-free
market and thus we see huge growth in the availability
of gluten-free products. At least with this disease,
unlike so many others, you are presented with a
legitimate treatment approach that works. A great deal
of money is currently being dedicated to celiac
research, not only to help the celiac but to help others
with related autoimmune diseases. Because CD has a
known trigger of gluten, research in this area may be a
gateway to breakthroughs in many disease treatments. It
is estimated that 1 in every 133 people in the United
States has celiac disease. Remember, only about 3% of
the estimated 1.5 to 3 million celiacs in the U.S. have
been diagnosed. In a sense, you are one of the lucky
ones because you now know a major reason for some of
your health problems.
Alert!!
You may be susceptible to a surprise weight gain
since you are likely to absorb and retain more calories
on the gluten-free diet. Be forewarned!
A COLLECTION OF RESOURCES
First, please note a word
about web and other resources:
Many of the information items
listed in the following pages contain a website
address. Our group recognizes that not all members have
access to the internet. In some ways this is a drawback
because so many organizations have top-flight
informational sites. However, it is not an
insurmountable problem. All organizations have
telephone and address contact information. The
reference books we list generally contain a resources
section at the back with all the pertinent contact and
organizational information. It may take the
non-computer user a bit longer to find the answers and
information, but it is still easily obtainable in the
old-fashioned ways. Call on other Lone Star members to
assist you.
Our own group website,
www.northtexasgig.com, provides helpful local
information and recipes at your fingertips. You can
become a member of NTGIG, renew your membership or
purchase a Restaurant Guide through PayPal on our
website homepage.
The following pages contain a
hodgepodge of information and resources that various
members have found useful. We urge you to look at each
resource with a discerning eye and make your own
determinations on its value. We provide the resources
as a tool to understanding and perhaps as a link to
other tools, but we do not present this packet as the
official word on the topic of celiac disease.
Legislation - Food Labeling
Laws – Parts Per Million
Celiacs must become inveterate
label readers to ferret out foods containing gluten. We
have received some help from recent legislation. FALCPA
(the Food Allergen Labeling and Consumer Protection Act)
went into effect January 1, 2006, requiring that the top
eight allergens be listed on any food product label.
Those eight are: milk, eggs, fish, crustacean
shellfish, tree nuts, peanuts, wheat, soybeans.
However, food may remain on the shelf with old labels
for some time, and testing for cross-contamination is
still to be addressed. Also, the label does not go far
enough for celiacs in revealing other potential sources
of gluten besides wheat.
But, more help is yet to come.
Section 206 of the new Food Labeling Law requires that
additional requirements be instituted in January 2008 to
define the use of the term “gluten-free” on a label.
Guidelines on allowable gluten will be established. The
FDA will adopt a standard. We usually hear about these
guidelines of “parts per million” in conjunction with
wheat flour or wheat starch. In Europe, wheat starch is
rendered GF with 200 ppm. In the United States, the FDA
has not made a ruling on the level of ppm of gluten
considered safe. The number which comes up most often
is 20 ppm because current tests are reliable down to
this amount and therefore food scientists currently
designate a food to have “no discernable amount” of
gluten below that level. A study referenced by the FDA
and recently published in the American Journal of
Clinical Nutrition concludes celiacs can safely tolerate
up to 20 ppm of gluten per day.
So what is a “safe” amount in terms
we can understand? As it turns out, somewhere between
1/16 and 1/8 tsp per day. At the International
Symposium in November 2006 sponsored by Columbia
University, Dr. Carol Semrad explained the following:
In consuming gluten, 10 mg of gliadin produces a normal
biopsy; 25 mg of gliadin is when symptoms start
occurring; 100 mg of gliadin produces minimal changes in
the biopsy; 500 mg of gliadin produces changes causing
the villi to flatten. 10 mg of gliadin = 20 mg of
gluten = 250 mg of wheat flour = less than an 1/8 tsp of
flour. This amount is based on daily ingestion. So, in
other words, a celiac would ideally ingest no gluten,
but can probably “safely” ingest approximately 1/16 tsp
per day. Many labeled GF flours have been found to have
some gluten in them. Again, Dr. Peter Green’s book
presents a discussion of reading labels and the new
label laws in Chapter 19.
To further investigate current
legislative progress, the American Celiac Disease
Alliance headed by Andrea Levario is the best
source. Visit
www.americanceliac.org, 703-622-3331. The
American Celiac Disease Alliance (ACDA) was established
in March 2003 to provide leadership on political issues
affecting those with celiac disease. Our national GIG
organization was one of the founding supporters.
Gluten Free Certification
Organization
This program is sponsored by GIG,
the Gluten Intolerance Group, and is governed by an
independent volunteer board including physicians, food
scientists and consumers. See the GFCO website to
understand its review process. The site contains lists
of food companies that produce GF foods under the
guidelines of GFCO. With the additional restrictions
and laws going into effect January 1, 2008, more
companies may be motivated to pursue gluten-free
certification for their marketing approach.
Visit:
www.gfco.org
Prescriptions and Medications
You may work very hard to remove
gluten from your food intake while forgetting a critical
problem area – prescriptions and over-the-counter
medications! Many times the drug’s active ingredient is
gluten-free but is mixed with a gluten-containing
“excipient” in the final formulation of the tablet.
This component may be added for suspension purposes or
coating purposes. Whatever the reason, it renders the
drug unusable by the celiac. Sometimes the same drug
may be manufactured by different companies, perhaps one
a brand name and one a generic medication. One pill may
be made with corn starch as an excipient and thus
perfectly fine while the other pill is made with wheat
starch as the excipient and may not be taken. Certain
guides listed below are helpful in researching your
medications. Often, you must personally call or go
online to determine whether or not a particular pill
contains gluten. Your pharmacist can be of assistance
in tracking down needed information. Just do not ignore
this real problem area.
GF Medication Guides
Celiac Disease: A Guide
through the Medicine Cabinet by Marcia Milazzo,
updated every year. Cost is approximately $35- $40.
Website:
www.celiacmeds.com or contact at e-mail,
info@celiacmeds.com,
phone 1-609-953-5815
Danna Korn recommends a
website: www.glutenfreedrugs.com.
This site contains general information plus downloadable
alpha lists in pdf format. The information is
researched by Steve Plogsted, Ph.D. in pharmacology.
List of gluten-free medications
at
http://homepage.mac.com/sholland/celiac/ List
was begun by Dr. Stephen Holland; Naperville
Gastroenterology.
Hidden Sources of Gluten and
Cross-Contamination
Gluten is often disguised in
seemingly safe food items. With the new labeling law of
January 1, 2006, the term “wheat” should be listed if it
is included as a component of some other major
ingredient. However, improvements in the labeling law
will take effect in 2008 providing more detailed
labeling and restrictions on allowable gluten amounts
for a product to be labeled “gluten-free.” Until then,
it is a good idea to question those ingredients that
have been suspect in the past: gums, artificial
coloring or flavorings, modified food starch, food
starch, emulsifiers, stabilizers, hydrolyzed vegetable
protein (HVP), TVP, hydrolyzed plant protein (HPP),
malt, dextrin, maltodextrin, caramel flavor, vanilla and
other extracts, and artificial/natural flavorings, etc.
See our many reference sources for more information on
hidden gluten.
“Gluten-free” foods may sometimes
be produced in factories which also manufacture products
containing gluten. If shared machines and equipment are
not cleaned properly, gluten may contaminate the
gluten-free products. Cross contamination may occur in
the fields where non-gluten grains are grown near gluten
grains or in fields previously used for gluten grains.
Cross contamination may occur in your own home or in a
restaurant through shared toasters or preparation bowls
and utensils.
Oats
Many celiacs can eat oats if they
are not contaminated with gluten protein. A percentage
of celiacs are sensitive or have an immune reaction to
avenin, a protein in oats. Dr. Peter Green, in
Celiac Disease: a Hidden Epidemic states that most
celiacs can safely tolerate oats. Absent a reaction or
contra-indications, he recommends using oats because
science supports the approach and because oats add fiber
and variety. Some vendors producing oats consistently
testing as having less than 3 parts per million
contamination are:
Cream Hill Estates, Montreal,
Quebec,
www.creamhillestates.com,
info@creamhillestates.com. This brand is sold
at several stores in our area.
Great Northern Growers in Montana,
www.greatnortherngrowers.com
Gluten-Free Oats in Wyoming,
www.glutenfreeoats.com
Xanthan Gum
Xanthan gum is an effective
substitute for gluten in yeast breads. It has the
ability to hold particles of food together well, acting
as a good stabilizer. It is also added to salad
dressings, canned gravies, sauces, and even ice cream to
give these foods a smoother texture. The national GIG
sells Xanthan Gum in ½ and 1 lb. lots. ½ lb. is enough
to make 24 loaves of bread. It can be purchased locally
from some stores listed above or ordered through GIG,
where you can download a complete information sheet and
bread recipes,
www.gluten.net.
Toaster – Reusable Toaster
Bag
Purchase reusable toaster bags so
that you may prepare your gf toast safely in any shared
toaster.
“No-Stik
Toast-it” toaster bags are imported (Pampered Chef no
longer carries them).
Order
through a supplier, Ronni Alicea RD,
rdronni@optionline.net or check the Connie
Sarros website,
www.gfbooks.homestead.com. Cost is about $5.00
for a set of 2 reusable pouches, plus postage.
NOTE: GF breads usually require 2 times through the
toaster!
Breadmaker
Many celiacs use a breadmaker at
home to make bread from scratch or GF mixes.
Apparently, gluten-free mixing works better with a
double paddle breadmaker as the mixture is thicker than
the average wheat-based mix. A sturdy single paddle
will also work. Some use a heavy-duty standing mixer
and then bake their loaves in the oven. Many of the
recommended cookbooks carry recommendations on
breadmakers and breadmaking.
Bread Baker by Cuisinart –
Convection bread baker with a button for gluten-free
bread. Sells for about $100. Carried at
Williams-Sonoma. Recently recommended by a member.
Zojirushi is supposed to make a
very good model, but it is apparently rather complicated
to operate. Other breadbaking machines are made by
Welbilt and Toastmaster.
Beer, Wine, Alcohol
According to Dr. Peter Green and
other sources, the distilling process eliminates the
gliadin fragment from spirits made from wheat, rye, and
barley (e.g. bourbon, vodka, scotch). If spirits
contain flavoring that is added in after the alcohol is
distilled, it is not necessarily safe. Some wine may
have added grain alcohol also. Pure wine is
gluten-free but some wineries may use additives (p. 17,
Jax Peters Lowell). Beer is brewed, not distilled, and
is therefore typically not safe unless it is
manufactured as a gluten-free beer – see list below.
(p. 276, Dr. Peter Green). It appears that most red and
white wines are safe, excluding any with additives.
Please exclude malt beverages.
Gluten-Free Beer on the
market!
Hambleton Ales out of England
has begun to set up distribution in the United States.
Visit the company website at:
www.hambletonales.co.uk/gfa.htm or see press
release at
www.yorkpress.co.uk/misc/print.php?artid=916429.
Another gf beer is manufactured by Ramapo Valley; visit
www.rvbrewery.com.
The home page contains a note about its gluten-free beer
and its kosher certified beer. Bard’s Tale Beer has had
a gf beer on the market and is a supporter of Dr.
Green’s symposium in New York. Check it out at
www.bardsbeer.com.
A new sorghum based beer on the market from Anheuser
Busch is Redbridge. Check out New Grist, a gluten-free
beer from Lakefront Brewer in Milwaukee,
www.newgrist.com.
Wine and other liquors
listed as gluten-free by Danna Korn
Considered gluten-free are
wines, bourbon, brandy, cider (unless it contains
barley), cognac, gin, rum, schnapps, tequila, vodka,
whiskey (such as Crown Royal and Jack Daniels). See p.
72 of Living Gluten-Free for Dummies by Danna
Korn.
Vinegar
Vinegar produced in the
United States undergoes a distillation process which
eliminates the gliadin and is therefore gluten-free.
Anyway, U.S. vinegar is produced strictly from apples
undergoing a fermentation process. It is always a good
idea to check for other additives such as you might find
in a vinegar based dressing. Malt vinegar
contains malt and is not gluten-free.
Holiday Baking
If you are worried about your
preparation of a delicious yet gluten-free holiday menu,
hurry to Glutenfreeda’s website for menus,
recipes, and all sorts of tips. Many of you are
familiar with the great resource but those who are not
must quickly become initiated. Find all the information
you need at
www.glutenfreeda.com. The site contains a
vast array of readily available menus and recipes as
well as some “subscriber only” content.
Altar Breads for Celiacs
For Celiacs
who wish to partake in traditional Holy Communion:
See
www.benedictinesisters.org, e-mail
altarbreads@benedictinesisters.org or
call1-800-223-2772 or 816-944-2227; Benedictine Sisters
Altar Bread Department, 31970 State Hwy P, Clyde, MO.
The gluten content of these breads is 0.01%. According
to Gluten Free Living, Vol. 9, No. 1a, experts
from the Center for Celiac Research at the U of Maryland
call the hosts “perfectly safe.” However, the flyer
from the Sisters indicates it is still a good idea to
check with your doctor.
Grain Choice
Celiacs are lucky to have more
grain choices than the standard of past years – rice
flour. We can incorporate grains made from such
ingredients as Montina flour, Chickpea flour, bean
flours, potato flour, buckwheat, flax, quinoa, millet,
arrowroot, corn, soy, teff, sorghum, and amaranth.
Cosmetics, creams, toiletries, personal care
According to Danna Korn, experts
assert that the gluten molecule is too large to pass
through skin; so, lotions, shampoos, conditioners, and
other external products should not be a problem unless
you have open sores, rashes, or Dermatitis Herpetiformis.
However, Danna points out that she has heard from
hundreds of people that they do have a reaction to
external products containing gluten. In addition, you
may transfer gluten from your hands to food during
eating or preparation. So, this is an area you will
have to investigate and decide for yourself. If you are
concerned, one approach would be to use the reference
books we have provided which contain manufacturing lists
and simply check on some of your favorite products. You
can contact companies such as Revlon, Neutrogena, Avon
and others directly about creams and make-up. If you
need a list of GF Avon products, please let our
president know.
National Celiac Organizations
Gluten Intolerance Group of
North America (GIG), Cynthia Kupper, CD, RD,
Executive Director and Celiac
31214 124th
Ave. SE, Auburn, WA 98092-3667; 1-253-833-6655.
Support groups in various parts of the country.
www.gluten.net,
info@gluten.net
Publishes excellent quarterly
newsletter magazine, included with membership.
Celiac Disease Foundation,
Elaine Monarch
13251
Ventura Blvd., Suite 1, Studio City, CA 91604-1838.
Support groups in various parts of the country.
818-990-2354; email:
cdf@celiac.org; website: www.celiac.org
Publishes excellent,
substantive, quarterly newsletter. Also publishes a
succinct reference tool, Guidelines For A Gluten-Free
Lifestyle (4th edition).
Included with membership.
National Foundation for Celiac
Awareness
124 So.
Maple Street, Ambler, PA 19002; 1-215-325-1306
A United
Way Agency founded in 2003 by Alice Bast after her
diagnosis of Celiac Disease. Dedicated to finding a
cure for CD.
www.celiacawareness.org or
www.celiaccentral.org
American Celiac Society’s
Dietary Support Coalition, a non-profit organization
P. O. Box
23455
New
Orleans, LA 70183
1-504-737-3293
www.americanceliacsociety.org
Celiac Sprue Association/USA,
Inc., Mary Schlucklebier
P. O. Box 31700, Omaha, NE
68131-0700
1-877-272-4272. Support groups in various parts of the
country.
www.csaceliacs.org
Publishes quarterly newsletter,
Lifeline, included in membership fee.
Raising our Celiac Kids, R.O.C.K.,
founded by Danna Korn in 1991 after her son, Tyler, was
diagnosed with celiac disease. Local groups throughout
the country.
www.celiackids.com;
858-395-5421
Canadian Celiac Association
www.celiac.ca
Tri-County Celiac Support Group,
TCCSG
www.tccsg.com
Serves Southeastern Michigan but
has gained recognition due to its comprehensive shopping
guide and aids for newly diagnosed celiacs.
Other Local Celiac
Organization
Lone Star Celiac GIG
Our sister
group in Dallas County, is a branch of National GIG,
headed by Sandy Klein RN and Kay Turner RN.
www.dfwceliac.org
Research Organizations, Trade
Organizations, Reports and Research Information
Columbia University, Peter
H.R. Green, MD, Director
Celiac
Disease Center,
www.celiacdiseasecenter.columbia.edu,
1-212-305-5590
University of Maryland,
Alessio Fasano, MD, Medical Director
Center for
Celiac Research (CFCR),
www.celiaccenter.org, 410-706-3734
University of Chicago,
Stefano Guandalini, MD, Medical Director
Celiac
Disease Program,
www.celiacdisease.net, 1-773-702-7593
Dermatitis Herpetiformis,
American Academy of Dermatology
www.aad.org,
1-847-330-0230
National Institute of Health,
NIH News and Celiac Disease Awareness
www.celiac.nih.gov
NIH Consensus Development
Conference on Celiac Disease. Official Conference
Statement from June 28-30, 2004 conference.
www.consensus.nih.gov/2004/2004CeliacDisease118html.htm
National Digestive Diseases
Information Clearing House/NDDIC
Sponsors
“Celiac Disease Awareness Campaign”
www.digestive.niddk.nih.gov, 1-301-654-3810
National Institute of Diabetes
and Digestive and Kidney Diseases (NIDDK) (part of
NIH)
http://www.digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm
The Children’s Digestive Health
and Nutrition Foundation (CDHNF), 1-215-233-0808,
with the North American Society for Pediatric
Gastroenterology, Hepatology and Nutrition (NASPGHAN),
1-215-233-3918.
Public education on celiac disease
in children,
www.celiachealth.org,
www.cdhnf.org,
www.naspghan.org,
general website is
www.celiachealth.org
National Association for the
Specialty Food Trade, NASFT, a not for profit
international organization established in 1952 to foster
trade, commerce and interest in the specialty food
industry. 212-482-6440, http://www.nasft.org
Book Resources and Reading
Materials
Note that NTGIG orders bulk
copies of some titles so that we can offer them at a
member reduced price. Check with our group bookseller.
Celiac Disease: A Hidden
Epidemic by Peter H. R. Green, M.D. (Director of
the Celiac Disease Center at Columbia University). A
favorite among many Lone Star members. In addition to
being a comprehensive medical guide, this book is an
understandable and practical everyday guide on CD.
Living Gluten-Free for
Dummies by Danna Korn (available at Wal-Mart as
well as bookstores and Amazon)
Kids with Celiac Disease: A
Family Guide to Raising Happy, Healthy, Gluten-Free
Children by Danna Korn, who founded R.O.C.K.
Best early book on raising kids with celiac disease.
Wheat-Free, Worry-Free: the
Art of Happy, Healthy, Gluten-Free Living by
Danna Korn
Recipes but much, much more in this
comprehensive book on living the gluten-free life.
Wheat-Free, Gluten-Free
Cookbook for Kids and Busy Adults by Connie
Sarros
Waiter, Is There Wheat In My
Soup: the Official Guide on Dining Out, Shopping, and
Traveling Gluten-Free and Allergen-Free by Lynn
Rae Ries. Many good reports on this useful tool for
those who do not want to give up eating out and
traveling after a CD diagnosis.
Wheat-Free Recipes & Menus
by Carol Fenster, Ph.D., a favorite resource for
cooking gluten-free among many experts in the field such
as Cynthia Kupper, Danna Korn, Cynthia Rudert, and Ann
Whelan.
Gluten-Free Diet: A
Comprehensive Resource Guide by Dietitian Shelly
Case, a popular speaker on CD. This is a particularly
good tool for the newly diagnosed celiac.
Bette Hagman cookbooks – perennial
favorites. Bette was a true trailblazer in formulating
flours and workable recipes for use by celiacs. Without
her, we might all still be using mainly rice flour.
Some of her standards are: The Gluten-Free
Gourmet; The Gluten-Free Gourmet Cooks Fast and Healthy
and More from the Gluten-Free Gourmet.
Subscriptions and
Publications
Gluten Free Living,
Ann Whelan, ed., 19A Broadway, Hawthorne, NY 10532
www.glutenfreeliving.com, 914-741-5420. Good
perspective on everyday battles.
Guidelines For A Gluten-Free
Lifestyle (4th edition),
published by the Celiac Disease Foundation. A pamphlet
style publication which is an excellent succinct
overview of CD. Contact through website or e-mail:
www.celiac.org;
cdf@celiac.org.
This is a free publication if you join the Celiac
Disease Foundation. Otherwise, it’s $10.00 or $6.00 if
10 or more purchased.
Living Without,
excellent magazine for people with allergies and food
sensitivities
www.livingwithout.com, 847-480-8810
Listserv
St.John’s Listserv – Web URL for
list archives:
http://listserv.icors.org/archives/celiac.html
No fees to search for a city and
what its gluten-free offerings are. If you post your
own e-mail, you must join but there are no fees. Site
has been in existence over 7 years with thousands of
members from all over the world. Use the search box to
locate a city. To subscribe directly:
Celiac-subscribe-request@listserv.icors.org.
Delphi Forums On-Line Celiac
Support Chat Site
http://forums.delphiforums.com/celiac/start
Scott
Adams’ Message board at
www.celiac.com
“Our” LOCAL talent resources
- authors and chefs
Jennifer Cinquepalmi,
a local Wylie, TX resident, has published The
Complete Book of Gluten-Free Cooking. Foreword by
Patricia A. D. Braun, MD. Purchase her book at
www.aidantbooks.com,
972-429-9810. Contact her about cooking classes at:
jennifercinquepalmi@yahoo.com.
Annalise G. Roberts,
sister of local chef/teacher Claudia Pillow,
published Gluten-Free Baking Classics. Foreword
by Peter H. R. Green, MD. Available at Amazon. Contact
Claudia about cooking classes:
cgpillow@verizon.net
Plano Gluten-Free Restaurant
and Store
Delicious-N-Fit or Laura’s
Bistro
Owner,
Laura Strain,
strain256@verizon.net
Laura
carries gf products, provides homemade take-out dishes,
and offers a gourmet onsite restaurant with the food
prepared by chef Jim Olson easily matching the best
Dallas has to offer. Jim’s experience includes years at
Mustang Café, Patrizio’s and City Café.
930 W. Park
Blvd, #420, Plano, TX
www.delicious-n-fit.com, 972-599-1018
LOCAL Stores, Restaurants,
Vendors
Abundant Life Health Foods
1128 W.
Main St., Lewisville, TX
972-221-1210
Better Health Market
4780 Little
Road, Arlington, TX 76017
Lucy
Wagner, 817-483-2212
Carole’s Health Foods
401 North
Highway 77, Suite 1, Waxahachie, TX
972-935-0333, stocks Kinnikinnick products
Central Market – Division
office – 214-252-5900
(Some
locations offer gluten-free cooking classes)
Fort Worth
- 4651 West Fwy, Fort Worth,
76107 - (817) 989-4700, cooking school 817-989-4700
Dallas –5750
E Lovers Ln, Dallas, 75206, 214-234-7000, cooking
school 214-361-5754
Plano –
320 Coit Rd, Plano, 75075,
469-241-8300
Cheese Cake Affair – Delicious
GF cheesecakes baked by Lone Star member Phyllis Chinn.
Contact her at 972-231-9969 or
snowfeet1@aol.com.
Cupboard Natural Foods & Café,
Paul Tavis
200 W.
Congress St., Denton, TX 76201, 940-387-5386
Family Health Market * (Will
take requests and follow-up for you)
4971
Preston Rd, Frisco TX 75034, 972-668-7088
Carries an
excellent variety of frozen, packaged and canned GF
products
FM Specialty Foods, (located
in The Atrium) 1001 Cross Timbers Rd., Suite 1060,
Flower
Mound, TX 75028, owner is Mary Hunt, a celiac,
972-724-3388
www.fmspecialtyfoods.com
Good Health Place
2503 S.
Cooper St.
Arlington,
TX 76015, 817-265-5261
Great Health Food Store
2420 Hwy
I-35E, Lewsiville
972-315-0042
Healthy Approach Market
5100 Hwy.
121, Colleyville, TX 76034
817-399-9100 (Very extensive gluten-free selection)
HerbMart
www.herbmarttx.com
Mesquite,
3330 N. Galloway, Suite 150, 972-270-6521
Plano, 4010
W. 15th St., Suite 120, 972-758-1805
Dallas -
Lakewood, 6434 E. Mockingbird, Lane, Suite 113,
214-370-8120
Market Street Colleyville
5605
Colleyville Blvd, Hwy. 26 & Hall Johnson Rd,
Colleyville, TX 76034; 817-577-5020, 817-577-5047.
Announcements will be sent out by email on cooking
classes held here.
Market Street McKinney
6100 West
Eldorado Parkway (at Ridge Road), McKinney, TX 75070;
972-548-5140. Announcements will be sent out by email
on cooking classes held here.
Roy’s Nutrition Center
130 Preston
Royal Shopping Center (NE Corner), Dallas, TX
214-987-0213 (open Sun-Fri, *closed Sat)
Sprouts Markets
www.sprouts.com
Sprouts
Farmers Market corporate nutritionist, Patti Tveit
Milligan, M.S., R.D., D.N.S.
contact her
at 480-814-8016,
pattililligan@sprouts.com
Sunflower Shoppe, 5817
Curzon at Camp Bowie Blvd., Fort Worth, TX
817-738-9051. Carries many of the same products as
Healthy Approach, its sister shop.
Whole Foods Markets
*Check with markets on gluten-free
cooking classes at various metroplex locations in
Dallas, Richardson, Plano, Highland Park and Arlington.
They have an excellent variety of GF products throughout
store. Whole Foods GlutenFree Bakehouse Products – gf
baked goods produced in dedicated gluten free facility
built in North Carolina by Whole Foods.
Note: Bette Hagman flours
are carried at almost all our local health stores – call
to verify.
Note 2: Many Asian and
Indian grocers in the area stock rice flour and other
gluten free flours for use in cooking and baking.
Travel & Restaurant
Information
Bob & Ruth’s Gluten-Free Dining
& Travel Club
www.bobandruths.com
Gluten-Free Restaurant Awareness
Program (GFRAP), GIG-sponsored
restaurant information site. This website attempts to
hook up the needs of the gluten intolerant with the
willingness of some restaurants to work those needs.
www.glutenfreerestaurants.org
Celiac Travel.com – offers
free restaurant dining cards
www.celiactravel.com/celiac-travel.html
GlutenFree Passport, Kim
Koeller, founder and owner. Guidebooks for the GF/allergic
traveler. Kim Koeller and Robert LaFrance have
published a well-researched, comprehensive compendium
for living, dining, and traveling gluten and allergy
free: Let’s Eat Out! Your Passport to Living
Gluten and Allergy Free
www.glutenfreepassport.com 312-375-9883
Wildwood Art Café, Austin,
TX, GF Baked Goods, 3663 Bee Caves Road, #4A, Austin, TX
info@wildwoodartcafe.com,
http://www.wildwoodartcafe.com/café.php,
800-420-4207, 512-327-9660
Triumph - Gluten-Free Restaurant
Guide and Dining Cards
www.triumphdining.com, 1-609-563-0445
North Texas GIG offers a
Restaurant Guide for $20 which lists over 70 restaurants
in the DFW area. The guide offers suggestions for
ordering gluten-free. Visit
www.northtexasgig.com and click on “Restaurant
Guide.”
Texas GF B&B’s
Chicken Paradise, Anne
Barfield’s Celiac Bed and Breakfast in San Antonio.
Wonderful facility – The Paradise Suite with
mini-kitchen and separate entrance. Beautiful garden;
call 210-340-0648;
www.chickenparadise.com,
annebarfield@satx.rr.com
Hoffman Haus,
Fredericksburg, TX
Leslie
Washburne’s charming Bed & Breakfast, phone
800-899-1672, 830-997-6739
www.hoffmanhaus.com,
info@hoffmanhaus.com
Some Favorite All-Purpose
Websites
Glutenfreeda
Online gluten-free cooking
magazine. Co-founded by Jessica Hale after mother,
Yvonne Gifford, was diagnosed with celiac disease in
1999. The website is noted for great gourmet recipes,
great links, and wonderful holiday suggestions. Much
information is available free at the site, but it is
also a subscription site. Check out all the offerings.
www.glutenfreeda.com
Montina gluten-free grain, a
cereal grain developed by Dr. David Sands (Ph.D from
UCBerkeley) at Montana State University. Dr. Sands is
also developing a testing stick or dipstick to detect
gluten in everyday products.
www.amazinggrains.com,
dsands@montana.edu
Celiac.com - Scott Adams’
all purpose celiac resource website, Celiac Disease and
Gluten Free Diet Support Center; lots of links, message
board: www.celiac.com
Clan Thompson all purpose
celiac resource website;
www.clanthompson.com
Claudia Pillow and Annalise
Roberts site (Claudia is local chef/teacher; her
sister is author, Annalise Roberts – see our book
recommendations)
www.foodphilosopher.com
Carol Fenster Ph.D recipes
(see our book recommendations list)
www.savorypalate.com or
www.carolfenster.com
More Danna Korn sites
(author, see our book recommendations)
www.glutenfreecookingclub.com
www.glutenfreedom.net
LynnRae Ries site (author of
Waiter, is there Wheat in my Soup – see our book
recommendation)
www.lynnrae.com
Connie Sarros (author of
Wheat-Free, Gluten-Free Cookbook for Kids and Busy
Adults – see our book section) Connie is a popular
speaker and has earned the nickname of “The Gluten-Free
Guru.”
www.gfbooks.homestead.com/
Vendor sites offering many of
the best GF products
1-2-3 Gluten Free, Southern
Glory Bread Mix, pizza crust mix, other mixes
www.123glutenfree.com
404-816-7000
Aidells Sausage GF
sold at
Costco – recommended by several members
www.aidells.com
Alpsnack
www.alpsnack.com
760-743-2211
Amy’s soups, frozen dinners,
pizzas and pizza crusts-very popular items carried at
many stores.
www.amyskitchen.com
Arrowhead Mills dry cereals
(not all are GF)
www.arrowheadmills.com
Aunt Candice Foods, snacks,
bars
www.auntcandicefoods.com
Authentic Foods
www.authenticfoods.com
(Packages
the super fine brown rice flour recommended by chef
sisters Annalise Roberts and Claudia Pillow – see our
book recommendations list) carried by Healthy Approach
Blue Chip Group, Inc. –
provides gf foods in bulk at lower prices
www.GlutenFreeBulkFoods.com
Blue Diamond Nut Thins
www.bluediamond.com
Bob’s Red Mill Gluten Free
Grains, Milwaukie, OR
www.bobsredmill.com
Butterball
1-800-Butterball, supposedly no gluten in basting
ingredients
www.butterball.com
‘Cause You’re Special,
Gourmet Gluten Free Foods
www.causeyourespecial.com
Chébé Bread, Newport, VT
www.chebe.com
Cream Hill Estates,
Montreal, Quebec, (GF oats)
www.creamhillestates.com
info@creamhillestates.com
Dowd & Rogers cake mixes
(especially chocolate and lemon)
www.dowdandrogers.com
Eating Gluten Free – recipe
site
www.eatingglutenfree.com
Ener-G Foods, Inc.
www.ener-g.com
Enjoy Life Foods, granola,
cookies, snack bars
www.enjoylifefoods.com
Erewhon 213-937-0777
www.erewhonmarket.com
Food Allergy Anaphylaxis Network
www.foodallergy.org
Glutano’s makes good products, many
good snack items and some new Sesame Crackers
www.glutano.com
Gluten Free Info Web containing
information about gluten free status of brand name food
products
www.glutenfreeinfo.com
Gluten Free Casein Free Diet,
Dietary Intervention for Autistic Spectrum Disorders
www.gfcfdiet.com
Gluten Free Kneads,
ready-to-bake cookie and brownie dough
www.glutenfreekneads.com
512-706-1775
Gluten-Free Oats in Wyoming
www.glutenfreeoats.com
The Gluten-Free Pantry
www.glutenfree.com
Gluten Free Pantry Mixes recipes
– these are downloadable recipes using a variety of GF
Pantry mixes
www.foodchoices.com
Glutino’s baked, imported
products, including Schar cookies
www.glutino.com
Gimbal’s Candy
www.gimbalscandy.com
Great Northern Growers in
Montana (GF Oats)
www.greatnortherngrowers.com
Honeysuckle White turkey,
supposed to be GF
www.honeysucklewhite.com
Jennie-O Meats 800-621-3505
www.jennieoturkeystore.com
Many
products are GF
Kinnikinnick Baked Goods,
Canada, 877-503-4466
overnight
delivery on day baked, life-savers for beginners
www.kinnikinnick.com
Listserv recipe sharing:
www.enabling.org/ia/celiac/#recipes
Made by Mona’s, Mona’s
breads, multi-mix, Pita/Pizza Flip
www.madebymona.com
Manna from Anna bread mix
www.glutenevolution.com
Marlene’s Mixes, Marlene &
Jim Glass, Whitehouse, TX
903-839-3494 or 3892
www.marlenesmixes.com
Mary’s Gone Crackers,
founded in 2000 by Mary Waldner, a celiac, company
produces award-winning crackers and cookies
www.marysgonecrackers.com
Midwest Bakery LLC, Iowa.
Mfer of soy & chocolate peanut bars, many cookies
888-566-5431,
www.midwestbakery.com
Miss Roben’s, Your Allergy
Grocer, 1-800-891-0083
www.allergygrocer.com
Mrs. Leeper’s boxed pasta
dinner mixes (mix with a meat, similar to Hamburger
Helper mixes)
www.mrsleeperspasta.com
Namaste Foods, “The Spirit
Within Me Honors and Respects the Spirit Within You.”
www.namastefoods.com
Nana’s Cookie Company (not
all products are GF)
www.healthycrowd.com 800-836-7534
Nature’s Path - many gf
products, dry cereals
www.naturespath.com
Nu-World Foods, Amaranth
based mixes, flat bread products
www.nuworldfoods.com
Orgran, rice porridge,
muesli, pastas, fruit bars, canned spaghetti
www.orgran.com
Pamela’s Products, Inc. –
sold at many local stores, including Whole Foods and
Central Market
www.pamelasproducts.com
Pilgrim’s Pride
800-824-1159, supposed to be GF
www.pilgrimspride.com
PR Chefs, Inc., Denver, CO
Suzanne
Bowland, 303-368-9990
www.theglutenfreelifestyle.com
PurFoods Gluten-Free,
ready-to-eat gluten-free prepared meals delivered FRESH
to your door. Meals keep up to 2 weeks in your
refrigerator.
866-942-7873
www.GlutenFreeMeals.com
Really Great Food Company
mixes 800-593-5377
www.reallygreatfood.com
Recipe Goldmine, Wheat and
Gluten-Free recipes
www.recipegoldmine.com
Republic of Tea, teas of
every flavor
www.republicoftea.com
Road’s End Organics, Vermont
– Pkg gravies, cheese mixes, jar dips, gf pasta
802-888-4130, 877-247-3373
www.roadsendorganics.com
The Ruby Range Mixes, Golden, CO
www.therubyrange.com
877-787-1552
San-J International,
manufacturer of premium Tamari Soy Sauce, first mfer to
certify its soy sauce as GF with GFCO
www.san-j.com
Skinney’s Food Solutions LLC,
Denison, IA (thin crust pizza)
www.skinneysfood.com
Sunstart Bakery
www.sunstartbakery.com 630-518-6006 Sold at
Wal-Mart
Sylvan Border Farm
www.sylvanborderfarm.com
Tinkyada Rice
Pasta
www.tinkyada.com,
www.ricepasta.com
Van’s Waffles
www.vansintl.com
310-320-8611
Wheatless in Seattle
www.wheatlessinseattle.com, 206-440-4147
Other Local Celiac
Organization
Lone Star Celiac GIG
Our sister group in Dallas County, is a branch of
National GIG, headed by Frank Fuller
www.dfwceliac.org.
Email:
president@dfwceliac.org
Note from editor on Tips packet, Vicki Lamb of Lone Star
GIG (with edits from Betty Barfield of NTGIG):
I hope
this “tips” document and the other sections of the
Welcome Packet are helpful in getting you started down
the path to better health. I prepared it in February,
2007. However, it may be embellished or improved by me
or others as time goes along. Since it is out in the
“public domain,” I will not necessarily have control
over future changes. Along these lines, please remember
that this is not an officially sanctioned document but
simply a record of one support group’s collective
knowledge and experience as its members attempt to live
gluten-free. We hope to help newly diagnosed celiacs
ease into a different way of living and eating. We
recommend you use this guide as one of many resources.
We have all learned that we must do our own independent
reading and research to understand complex issues such
as cross-contamination, diagnostic and testing
procedures, and decisions about wine and alcohol.
Please do not hesitate to let me know about glaring
errors and to make suggestions for inclusion of items
when the packet is periodically updated. And as the
requisite disclaimer: Individuals must consult with
their own doctors and health team for advice. No
liability is assumed by the Lone Star Celiac GIG or
North Texas GIG.
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