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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 EndoscopyDuring 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.