East Central Wisconsin Gluten Free Group Background Information About Celiac Disease and Related Conditions Updated 08/06/2011 Page #: 1 East Central Wisconsin Gluten Free Group's mission is to educate, motivate & advocate. The main objective of this document is to provide a basic overview of Celiac Disease (CD), Dermatitis Herpetiformis (DH), Non Celiac Gluten Sensitivity (NCGS), and the Gluten-Free diet (GFD). Not too long ago, the medical community thought that CD was rare – only 1 in 5000. In a 2003 groundbreaking study, Dr. Alessio Fasano determined that roughly 1% of the average, healthy US population [1 in 133] is affected by celiac disease . Sadly, 97% of them go undiagnosed. Often times medical professionals will only look for CD in patients that present with classic [gastrological] symptoms. In fact, 60% of diagnosed children and 41% of diagnosed adults , are asymptomatic. Research also shows that only one third of diagnosed adults experience diarrhea. The most common sign of CD in adults is iron deficiency anemia that won't respond to iron therapy. Dr. Peter Green - Director of The Celiac Disease Center at Columbia University states two different values for average length of time to diagnosis: 4.4 years and 11 years. . Other trusted sources state the length of time is 10 – 11 years . Regardless of the actual number, it takes far too long for diagnosis. Keep in mind, many never do get a proper diagnosis. Overview What is Celiac Disease (CD)? An inherited autoimmune multi-system disorder that not only affects the digestive process of the small intestine, but other systems as well. When consuming gluten, a protein found in wheat, rye and barley, the individual’s immune system responds by attacking and damaging the small intestine thus inhibiting the absorption of important nutrients into the body. Neurological symptoms are often present, but not always recognized as a symptom of CD. Undiagnosed and untreated, celiac disease can lead to the development of other autoimmune disorders and in rare cases, cancer. Detecting Celiac Disease in Your Patients (1998) by Harold T. Pruessner, MD - http://www.aafp.org/afp/980301ap/pruessn.html Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than You Think (2002) by David A Nelsen, MD, MS - http://www.aafp.org/afp/20021215/2259.html Gluten Sensitivity as a neurological illness - http://www.pubmedcentral.nih.gov/picrender.fcgi? artid=1737870&blobtype=pdf National Digestive Diseases Information Clearinghouse: Celiac Disease - http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/ Gluten Intolerance Group (GIG) - http://gluten.net/pdf/CD%2002-2011.pdf GIG's Handouts (a lot of great information here!) - http://gluten.net/learn/downloads.aspx University of Chicago Celiac Disease Center - http://www.celiacdisease.net/assets/pdf/CDCFactSheetsOverview1.pdf ADA's Celiac Disease Evidence Analysis Project - http://www.adaevidencelibrary.com/topic.cfm?cat=2826 Last updated: 08/06/2011
Transcript
East Central Wisconsin Gluten Free Group
Background Information About Celiac Disease and Related ConditionsUpdated 08/06/2011
Page #: 1
East Central Wisconsin Gluten Free Group's mission is to educate, motivate & advocate.
The main objective of this document is to provide a basic overview of Celiac Disease (CD), Dermatitis Herpetiformis (DH), Non Celiac Gluten Sensitivity (NCGS), and the Gluten-Free diet (GFD).
Not too long ago, the medical community thought that CD was rare – only 1 in 5000. In a 2003 groundbreaking study, Dr. Alessio Fasano determined that roughly 1% of the average, healthy US population [1 in 133] is affected by celiac disease. Sadly, 97% of them go undiagnosed.
Often times medical professionals will only look for CD in patients that present with classic [gastrological] symptoms. In fact, 60% of diagnosed children and 41% of diagnosed adults, are asymptomatic. Research also shows that only one third of diagnosed adults experience diarrhea. The most common sign of CD in adults is iron deficiency anemia that won't respond to iron therapy.
Dr. Peter Green - Director of The Celiac Disease Center at Columbia University states two different values for average length of time to diagnosis: 4.4 years and 11 years.. Other trusted sources state the length of time is 10 – 11 years. Regardless of the actual number, it takes far too long for diagnosis. Keep in mind, many never do get a proper diagnosis.
Overview
What is Celiac Disease (CD)? An inherited autoimmune multi-system disorder that not only affects the digestive process of the small intestine, but other systems as well. When consuming gluten, a protein found in wheat, rye and barley, the individual’s immune system responds by attacking and damaging the small intestine thus inhibiting the absorption of important nutrients into the body. Neurological symptoms are often present, but not always recognized as a symptom of CD. Undiagnosed and untreated, celiac disease can lead to the development of other autoimmune disorders and in rare cases, cancer.
Detecting Celiac Disease in Your Patients (1998) by Harold T. Pruessner, MD - http://www.aafp.org/afp/980301ap/pruessn.html
Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than You Think (2002) by David A Nelsen, MD, MS - http://www.aafp.org/afp/20021215/2259.html
Gluten Sensitivity as a neurological illness - http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1737870&blobtype=pdf
National Digestive Diseases Information Clearinghouse: Celiac Disease - http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/
Gluten Intolerance Group (GIG) - http://gluten.net/pdf/CD%2002-2011.pdfGIG's Handouts (a lot of great information here!) - http://gluten.net/learn/downloads.aspx
University of Chicago Celiac Disease Center - http://www.celiacdisease.net/assets/pdf/CDCFactSheetsOverview1.pdf
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What is Celiac Continued
Celiac Disease Foundation's – Are you the one?http://www.celiac.org/images/stories/PDF/are-you-the-one.pdf
National Foundation for Celiac Awareness: Celiac Disease Symptom Check list - http://www.celiaccentral.org/About-Celiac-Disease/Diagnosis-Treatment/Celiac-Symptoms-Checklist/138/
Who's at Risk for Celiac Disease - http://celiacdisease.about.com/od/diagnosingceliacdisease/a/GroupsAtRisk.htm
What is Dermatitis Herpetiformis (DH)? Is a hereditary autoimmune condition that is the skin manifestation [instead of gut manifestation] of celiac disease. DH presents with groups of watery, itchy blisters. The ingestion of gluten (a protein found in wheat, barley, rye) triggers the body's immune system – this deposits IgA Antibodies under the top layer of skin. In order to diagnose DH, a biopsy of normal skin adjacent to a lesion is tested. Often times DH will not present with any intestinal damage.
National Digestive Diseases Information Clearinghouse: Dermatitis Herpetiformis - http://digestive.niddk.nih.gov/ddiseases/pubs/dh/index.htm
Celiac Sprue Association – Dermatitis Herpetiformis -http://www.csaceliacs.org/dh_defined.php
Gluten Intolerance Group (GIG) - http://gluten.net/pdf/Dermatitis%20Herp%2002-2011.pdf
What is Non Celiac Gluten Sensitivity (NCGS) or The Gluten Syndrome? Is a condition that is still evolving in the eyes of mainstream medicine. NCGS will present with many of the same symptoms of CD, however it does not present with intestinal damage. Because testing is focused on intestinal damage, the results in those with NCGS generally come back negative or inconclusive. This makes diagnosing NCGS even harder than CD. This means patients can often suffer longer because the condition is generally overlooked once celiac disease testing comes back negative. Dr. Alessio Fasano [medical director of Univ. of Maryland's School of Medicine – Center for Celiac Research], reports seeing 60-70% of his patients fitting his criteria for gluten sensitivity. This means they test negative for CD and wheat allergy, but experience resolution of symptoms on a gluten-free diet. There's a growing number of doctors that say NCGS effects 10 – 30% of the population.
Neurological involvement is often seen in NCGS as well as CD.
Gluten sensitivity is best defined as a state of heightened immunological responsiveness in genetically susceptible people. This definition does not imply bowel involvement. That gluten sensitivity is regarded as principally a disease of the small bowel is a historical misconception. Gluten sensitivity can be primarily and at times exclusively a neurological disease. The absence of an enteropathy should not preclude patients from treatment with a gluten-free diet.
~ Dr. Marios Hadjivassiliou Gluten Sensitivity as a Neurological Illness (2002)
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What is Non Celiac Gluten Sensitivity Continued
Gastroenterology & Endoscopy News - Vol. 61, Number 10, Oct. 2010 Gluten Sensitivity Baffles Celiac Disease Specialists PDF
The Gluten File's [a massive collection of gluten related research articles] CD vs NCGS -http://jccglutenfree.googlepages.com/glutensensitivityvsceliacdisease
Gluten Intolerance Group - http://gluten.net/pdf/GlutenSensitivity%2002-2011.pdf http://gluten.net/pdf/Allergies%20and%20intol%2002-2011.pdf
Dr. Rodney Ford – The Gluten Syndrome Video: http://www.youtube.com/watch?v=cBTyZtpHOno
Dr. Rodney Ford – Who Needs a Gluten Test Video: http://www.youtube.com/watch?v=FtxfV49YYZM&
Dr. Scot Lewey - http://thefooddoc.blogspot.com/2007/07/gluten-sensitivity-confirmed-by.html
Dr. Stephen Wangen - http://www.ibstreatmentcenter.com/3_c.htm
HealthNow Medical Center - http://www.healthnowmedical.com/am-i-gluten-sensitive/
Dr. Marios Hadjivassiliou - Gluten Sensitivity as a neurological illnesshttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC1737870/pdf/v072p00560.pdf
Stacy Astor Shaul, MA - Gluten Intolerance: A paradigm of an epidemichttp://findarticles.com/p/articles/mi_m0ISW/is_2002_Dec/ai_94538644/?tag=content;col1
Dr. Thomas O'Bryan - http://www.blogtalkradio.com/drshawn1/2010/09/10/gluten-sensitivity-and-celiac-disease-with-dr-thom
Dr. Kenneth Fine: Early Diagnosis Of Gluten Sensitivity: Before the Villi are Gone -https://www.enterolab.com/StaticPages/EarlyDiagnosis.aspx
Tricia Thompson's Celiac vs Gluten Sensitivity - http://www.glutenfreedietitian.com/newsletter/dietcom-blog-celiac-disease-vs-gluten-sensitivity/
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What is a Gluten-free Diet (GFD)? Regardless of which gluten related condition one has, the treatment is the same – complete removal of gluten. A gluten-free diet (GFD) must be strictly followed for life. Currently it's the only treatment for gluten related conditions. As discussed above, gluten is a generic term for the proteins found in wheat, barley, rye, and oats* as well as their derivatives. Each of these foods have a specific toxic prolamin: wheat contains gliadin & glutenin, barley contains hordein, rye contains secalin.
Determining the gluten-free status of foods is not always easy. In 2006 the FDA passed The Food Allergen Labeling and Consumer Protection Act (FALCPA). This act requires food manufacturers to disclose the top 8 allergens. These allergens are eggs, dairy, soy, tree nuts, peanuts, fish, shellfish and wheat. Since barley, rye and oats are not covered under FALCPA, it requires gluten intolerants to do a bit of detective work in order to determine if a food is safe.
At the time of this writing, the USA has no definition of “gluten-free”. Phase II of FALCPA will define exactly what “gluten-free” actually means and how manufacturers are to voluntarily label such products. The FDA was to have enacted this ruling in August 2008, but delayed it in order to obtain more information from consumers and manufacturers. The proposed limit for gluten-free is any food containing less than 20 parts per million of gluten.
Cross contamination also plays a part in the gluten-free diet. If a gluten-free food becomes contaminated with gluten due to cross contact, it should not be eaten. Contamination can occur at any time during the storing, manufacturing, preparing, cooking of food. Dining out is extremely risky.
*While the protein found in oats [avenin] does not produce a celiac reaction, commercial oats have been shown to contain unacceptable levels [greater than 20 parts per million] of gluten due to cross contamination. Harvesting, storing and processing are the typical sources of cross contamination. Pure, uncontaminated oats have been deemed acceptable for those that follow a gluten free diet.
GIG's Gluten-free Diet & Drug Instruction - http://www.gluten.net/2GIG%20Diet%20Instruction%2006-2011.pdf
GIG's Easy to Find, Easy to Fix GF Foods - http://www.gluten.net/Easy%20to%20Find%20Snacks%2006-2011.pdf
Going Gluten-free: A Primer for Clinicians - http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/nutrition-articles/dennisarticleapril.pdf
The Gluten-Free Diet: An Update for Health Professionals - http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/nutrition-articles/Sept0601.pdf
FDA's Food Allergen Labeling And Consumer Protection Act of 2004 - http://www.fda.gov/food/labelingnutrition/FoodAllergensLabeling/GuidanceComplianceRegulatoryInformation/ucm106187.htm
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Dietitian Related Information
Celiac Diet Series Articles from the Journal Practical Gastroenterology
Note: Because these articles are several years old, any products that are stated as gluten-free, should not be assumed to be gluten-free today. Products need to re-verified by ingredient label or by contacting the manufacturer.
The Celiac Diet: Introduction to a New Series from PRACTICAL GASTROENTEROLOGY • SEPTEMBER 2006
“As the number of patients diagnosed with celiac disease continues to grow, patients are clamoring for timely, reliable information that allows them to individualize their diet for their particular needs and lifestyle. Knowledgeable dietitians who are adept in the complexities of the gluten free diet and translating it to meet different lifestyles, budgets, and concomitant disease processes have contributed to this new mini-series. The series will run September 2006–May 2007”
The Celiac Diet #1 - The Gluten-Free Diet: An Update for Health Professionals – September 2006
By Nixie Raymond, MS, RD, LDN, CSP, Clinical DietitianJenny Heap, MS, RD, LN, Clinical DietitianShelley Case, B. Sc.,RD,Consulting Dietitian, Case Nutrition Consulting
“A strict, lifelong gluten-free (GF) diet is currently the only treatment for celiac disease. The diet requires the elimination of all forms of wheat, barley and rye and their derivatives. This article reviews the specifics of the diet, including recommendations regarding the use of pure, uncontaminated oats. The GF diet may be lacking in B vitamins, fiber, calcium and other nutrients, but these may be obtained from nutrient dense GF foods and supplements if needed. To successfully implement and adhere to the diet, individuals need to learn how to avoid gluten contamination and manage the diet while eating out. They must become skilled in label reading and should benefit from the new food allergen labeling laws. Gluten-free cookbooks and a wide variety of GF specialty foods make meal preparation easier. Comprehensive diet education and follow-up from an experienced registered dietitian is a key element in the successful management of celiac disease.”
“Recent attention to whole grains has increased with the Dietary Guidelines for Americans 2005 recommendation to eat at least three servings of whole grains daily. This new emphasis follows research linking whole grains to reduction of chronic disease risk. The American population in general is not meeting this recommendation. For a person diagnosed with celiac disease, a gluten-free diet and the elimination of one of the most common grains in the U.S. makes meeting those recommendations even more challenging. Many gluten-free whole grain options are available and several are exceptionally nutrient dense. Familiarity with these grains, however, is limited. Educating patients on gluten-free whole grains and helping them to incorporate these foods can improve the nutrient profile and add fiber to a gluten-free diet.”
The Celiac Diet #3 - Gluten-Free Dining Out: Is it Safe? - October 2006
by Pam Cureton, RD, LDN, Center for Celiac Research,Growth and Nutrition Clinic, Baltimore, MD.
“Dining out is one of life’s simple pleasures that most of us take for granted. However, foryour patient with celiac disease, it can be an overwhelming task. The simple act of ordering off the menu becomes a complex challenge to achieve a safe, gluten-free meal. Some individuals on the gluten-free diet are fearful of dining occasions and worry that the outing may leave them ill with reoccurring celiac symptoms. Some dread the
challenge of communicating their dietary restriction to the waiter, manager, or chef. Patients do not feel confident in their abilities to detect sources of gluten in restaurant food and sources of possible contamination. Given the right tools and educational support, their health care providers can turn dread into delight. Giving the patient confidence to eat away from home will increase his or her quality of life and improve compliance with the gluten-free diet.”
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Celiac Diet Series Continued
The Celiac Diet #4 - Heart Health and Celiac Disease – December 2006
by Mark Dinga, MEd, RD, LDN, Outpatient Dietitian University of Pittsburgh Medical Center, and Andrea Dinga, MEd, RD, LDN, Clinical Studies Dietitian, University of Pittsburgh, both in Pittsburgh, PA.
“Following diagnosis of celiac disease, the focus of dietary modification is on gluten elimination. A person with celiac disease may feel entitled to eat anything gluten-free, even if high in fat, sugar, and calories, in an attempt to compensate for the restrictions of a gluten-free diet. Unfortunately, being gluten-free does not guarantee nutrition principles recommended to protect the heart. Prudent advice for individuals with celiac disease follows public policy initiatives and programs such as the National Cholesterol Education Program and the Dietary Guidelines for Healthy Americans. Considering the focus toward prevention and recognition of multiple risk conditions such as metabolic syndrome, early assessment and intervention is critical to cardiovascular health promotion. Individualized assessment of cardiovascular risk, maintenance of gluten-free diet principles and appropriate addition of heart healthy diet recommendations are critical to successful nutrition intervention, often requiring consultation with a registered dietitian.”
The Celiac Diet #5 - Medications and Celiac Disease - Tips From a Pharmacist – January 2007
by Steven Plogsted, Pharm.D, BCNSP, Clinical Pharmacist, Nutrition Support Service, Columbus Children’s Hospital, Clinical Assistant Professor of Pharmacy, Raabe College of Pharmacy, Ohio Northern University, Columbus, OH
“Celiac disease is a chronic, generically linked, autoimmune disorder that is also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy. Although celiac disease primarily affects the small intestine, deleterious effects can occur throughout the entire body. Patients with celiac disease are unable to tolerate the ingestion of gluten. Gluten is an insoluble protein found in all cereal grains. The gluten that is found in wheat, rye, and barley is the offending culprit for celiac disease patients. The prevalence in the United States is estimated to effect 1% of the population. The following article is designed to help identify medications that may contain gluten.”
“The gluten-free diet presents unique challenges for children with celiac disease and their families. Prior to diagnosis, children may be quite ill, suffering from poor growth and developmental delay. Upon accurate diagnosis and treatment, children usually improve quickly; however despite rapid improvement of symptoms, compliance with diet may be less than optimal, putting the child once again at risk for the complications of untreated celiac disease. Because children may feel uncomfortable being singled out as “different,” a diet that calls attention to their condition, and thus their differences, presents a unique challenge to parents and caregivers trying to meet the treatment guidelines. Frequent follow-up and monitoring, along with educational resources and support groups can aid families in maintaining a gluten-free diet and provide creative ways to deal with the challenges inherent in a gluten-free lifestyle.”
The Celiac Diet #7 - Combining Diabetes and Gluten-Free Dietary Management Guidelines – March 2007
by Cynthia Kupper, R.D., C.D., Executive Director, Gluten Intolerance Group of North America, Auburn WA.
Laurie A. Higgins, M.S., R.D., L.D.N., C.D.E., Pediatric Nutrition and Diabetes Educator, Pediatric Adolescent and Young Adult Section, Joslin Diabetes Center, Boston, MA.
“The association of celiac disease and type 1 diabetes is well documented in the literature. Type 1 diabetes, celiac and thyroid diseases are a triad of autoimmune conditions with a significant co-morbidity. However, very little is written about the management of celiac disease and type 1 diabetes and clear guidelines are not available. This article reviews nutrition recommendations for diabetes management by the American Diabetes Association (ADA) for healthy meal planning, carbohydrate counting, and potential use of glycemic index/glycemic load, as well as practical tips and suggestions for transitioning to a gluten-free, diabetes meal plan.”
“Currently, the only treatment for celiac disease (CD) is a strict gluten-free diet (GFD) for life. This means the elimination of products containing wheat, rye and barley. Following a GFD presents significant challenges and many barriers to compliance. One of the most significant challenges patients face is the cost of certain components of the diet. Great tasting gluten-free alternatives are essential to help patients comply with the diet, but come at a much higher cost than their gluten containing counterparts. Helping patients manage the cost of the diet is as important as understanding the basic concepts of the GFD.”
The Celiac Diet #9 - The Gluten Free Vegetarian – May 2007
by Amy E. Pagano, M.S., R.D., Outpatient Nutritionist,University of Virginia Health System, Charlottesville, VA.
“It is estimated that approximately 1% of the U.S. population has celiac disease. Currently the only treatment for celiac disease is a strict gluten-free diet, requiring the elimination of many staple grains. For a vegetarian, who has already eliminated meat, poultry, fish, seafood and possibly eggs and/or dairy products, further limitations may be particularly unwelcome. A plant-based vegetarian diet may rely more heavily on grains to provide both macro- and micronutrients, so the elimination of wheat and other gluten-containing foods may seem especially restrictive. However, with thought and planning, a vegetarian gluten-free diet can be a healthful way to meet one’s nutrient needs.”
“Although rare, celiac and kidney disease have been reported in the same individual. Because of its rare occurrence (or underdiagnosis), there are no written guidelines for managing these combined diseases. Celiac disease is characterized by inflammation of the small intestine, and in some, malabsorption, after the ingestion of gluten in susceptible individuals. It is managed by life-long avoidance of gluten in the diet. Kidney disease is manifested by fluid and electrolyte imbalance, which also involves life long dietary restrictions. This article reviews the renal dietary guidelines and provides suggestions on how to combine this with managing celiac disease.”
Today's Dietitian's Articles
August 2011 Issue
Safe Gluten-Free Travel — Good Preparation Makes All the DifferenceBy Maura KellerToday’s DietitianVol. 13 No. 8 P. 14
For many people with celiac disease, finding good restaurants that cater to gluten-free consumers can be challenging. And traveling to far-off destinations with unknown gluten-free options can be even more difficult. One of the most important things your gluten-free clients can do before they saunter through Spain or set their sights on Denmark is thoroughly research venues that offer gluten-free options and explore travel companies that can meet their needs.
Background Information About Celiac Disease and Related ConditionsUpdated 08/06/2011
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July 2011 Issue
Go Nuts! — Almond and Other Flours Make Great Additions to GF Baking Tool KitBy Juliann SchaefferToday’s DietitianVol. 13 No. 7 P. 42
To the untrained and time-constrained eye, home cooking a meal can sometimes seem a vast and daring venture. For people with gluten sensitivities (or a parent of someone with celiac disease), cross-contamination and other anxieties can quickly turn such an undertaking into a downright daunting experiment.
Prepared gluten-free (GF) baked good offerings have become more widely available in recent years, yet these options “are usually frozen and almost always shrink wrapped for ‘sell by’ dates months in advance. But the worst part is that no matter what, they are always expensive,” wrote cookbook author Annalise Roberts in Gluten-Free Baking Classics.
Roberts says the time investment that goes into GF home-baked goodness is well worth it, in no small way: “Time and effort aside, if you are going to eat cake or muffins, you’re better off making them yourself. They will be fresher, cost less, and have less fat and sugar than ones you buy at the store—wheat or no wheat.”
May 2011 Issue
A Rarity No More — Science Seeks a Cause for Rise in Celiac Disease OccurrenceBy Sharon Palmer, RDToday’s DietitianVol. 13 No. 5 P. 8
Gluten free is on everyone’s radar. Eight years ago, when the news broke that one in 133 people—an occurrence rate much higher than scientists had suspected—has celiac disease (CD), the term entered into the public vernacular. And gluten-free living became more amenable, thanks to a growing variety of gluten-free products and resources that became available, even though scientists understood little about the disease’s cause.
They can have their bread and eat it, too, using suggested substitutions and other tricks from our GF cookbook authors and experts.
Whether at a fast-food eatery, chain restaurant, or mom-and-pop bistro, eating out today isn’t without its pitfalls, as any dieter can attest. Discerning the healthfulness of one restaurant’s roast chicken sandwich vs. chicken and walnut salad can be challenging. Fats hide in dressings, nuts, and cooking oils, and breads can house the majority of a meal’s calories. The circumstances get even stickier for people with celiac disease or gluten sensitivity, who are forced to pare down their menu selections even further just to steer clear of sickness.
“The biggest challenge to eating out is to find restaurants that can serve safe, uncontaminated gluten-free [GF] food,” says Annalise Roberts, who has written several GF cookbooks, including Gluten-Free Baking Classics and The Gluten-Free Good Health Cookbook. But beyond safety concerns, she says the real key to eating a healthful GF diet is in not replacing processed foods of refined wheat and sugar with GF processed foods.
Although celiac disease is manageable and treatable, a diagnosis can overwhelm patients. After all, the condition necessitates significant lifestyle changes. Simply buying gluten-free products is not enough; patients with celiac disease must practice safe food handling, preparation, and storage in their homes. While maintaining a safe kitchen involves a lot of responsibility, dietitians can arm their patients with helpful tips to make the task seem less daunting.
Flawless Food Preparation and HandlingThe gluten-free market has come a long way. Today there are more products available than ever before, and people with celiac disease are realizing they can enjoy many of their favorite foods again. But keeping food truly safe means avoiding cross-contamination with gluten-containing products, something that’s not always easy to do in a busy home kitchen.
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Today's Dietitian – Continued
November 2010 Issue
Two of a Kind — Research Connects Celiac and Thyroid Diseases and Suggests a Gluten-Free Diet Benefits Both By Cheryl Harris, MPH, RD, and Gary Kaplan, DO Today’s Dietitian Vol. 12 No. 11 P. 52
“Nature doesn’t always play fairly. Anyone with an autoimmune condition is predisposed to developing other autoimmune conditions, and there is a particularly strong connection between celiac disease and autoimmune thyroid disease (ATD), which includes Hashimoto’s and Graves’ diseases. Despite this connection, routine cross-screening is rare.
Since these conditions frequently lead to significant changes in weight, RDs are in a prime position to spot common symptoms and provide clients with potentially lifesaving referrals for further testing and diagnosis. This article will review the overlapping symptoms, examine the current research on the relationship between these diseases, explore how a gluten-free diet affects both conditions, and describe the ways in which RDs can most effectively support their clients and patients. Understanding the connection between celiac disease and thyroid disease can help dietitians design strategies for appropriate dietary management and support.
Background About one half of the approximately 27 million people with thyroid conditions have not been diagnosed1, and almost 97% of the approximately 3 million Americans with celiac disease are undiagnosed.”
Also known as celiac sprue, sprue, or nontropical sprue, celiac disease was once considered a rare childhood disease. Now it is recognized as a fairly common disease affecting an estimated 3 million to 4 million people in the United States. A similar condition, gluten sensitivity (or intolerance), may affect up to 28 million people.
In recent years, researchers and policy makers have produced evidence-based guidelines for identifying and intervening to mitigate the effects of these conditions. This article will explain the process by which those guidelines were developed and provide information to help dietitians understand and treat patients with them.
October 2010 Issue
Simple, Healthy, and Celiac Friendly — Nutritious Convenience Foods Take the Challenge Out of Gluten-Free Eating By Juliann Schaeffer Today’s Dietitian Vol. 12 No. 10 P. 52
Eating healthfully is an oft-neglected task on many busy consumers’ daily to-do lists, and the season’s shorter days likely won’t help matters much. For those with celiac disease or gluten sensitivity—who need to work that much harder just to find foods that won’t make them ill—incorporating healthful gluten-free foods into their diet can seem like one more hassle when searching the grocery store shelves.
“The world of diet and nutrition has been well documented in the blogosphere. Some of the most popular bloggers—from Julie Powell, who was immortalized in the movie Julie & Julia, to Hungry Girl, diet tip maven Lisa Lillien—have capitalized on the subject of foods and diets. So it makes perfect sense that gluten-free eating would be a thriving subject in the online journaling world. It has all the ingredients that make for a captivating blog: confusion, opinions, back story, a need for resources, and current interest.
Today’s Dietitian searched the Internet to review some of today’s hottest gluten-free blogs. There are virtually dozens of these blogs penned by a range of authors—from teenagers and moms to chefs and dietitians—and the gluten-free advice they share with thousands of followers is equally diverse. It’s important to keep your finger on the pulse of these blogs. This way, when a client quotes Gluten-Free Girl, you’ll be prepared to offer an opinion.”
For patients with celiac disease, conceiving, delivering, and nursing healthy babies are not insurmountable challenges. With careful attention to diet, mother and baby can enjoy healthy lives.
Celiac disease presents a range of concerns for affected individuals. Aside from having to scrutinize every food label, those who eliminate gluten from their diet also eliminate certain essential nutrients they must then obtain from other sources. And when patients with celiac disease decide to have children, they must not only ensure they’re getting enough nutrients to conceive and maintain a healthy pregnancy but also consider how to handle dietary issues once the child is born. Fortunately, a growing body of research is available to help patients meet these challenges.
One common misconception about celiac disease is that it affects only the gastrointestinal system. Not so, says Shelley Case, BSc, RD, a member of the medical advisory boards of the Celiac Disease Foundation and Gluten Intolerance Group in the United States and the professional advisory board of the Canadian Celiac Association and author of Gluten-Free Diet: A Comprehensive Resource Guide.
“We’ve discovered now that celiac disease is actually a multisystem, multisymptom disease that, because it’s autoimmune, the autoimmune reaction doesn’t just trigger the gut tissue. It can affect the neurological tissue, so we can see things like migraines, epilepsy, a higher incidence of seizures in undiagnosed celiac disease, neuropathies, thyroid disease, and a higher incidence of celiac in type 1 diabetes,” says Case. “We see an effect on the musculoskeletal system such as osteoporosis. It affects just about every system in the body. It also can affect the skin and cause a condition called dermatitis herpetiformis, which is a skin presentation some people think is herpes or itchy blisters, but it’s also a form of celiac disease.”
Create Awareness When first diagnosed with celiac disease and instructed to follow a restrictive gluten-free diet, the treatment may sound simple: Remove gluten from the diet. But there is much more involved, making the “simple” solution quickly appear overwhelming, and patients often feel as though they are at a loss. What will they eat? How will they dine out with friends? Can they afford the expensive substitutions?
That’s where GREAT Healthcare comes in. The program and its learning modules are designed to increase awareness about the disorder and guide healthcare professionals through the intricacies of the gluten-free diet so they can best help their patients.
“Not long ago, most people had not heard of a gluten-free lifestyle. In fact, many probably didn’t know what gluten was. Many suffered with undiagnosed celiac disease, left ill and without answers.
With all of this focus on gluten-free lifestyles, it’s no surprise that the restaurant industry has taken notice. Many restaurants are beginning to recognize the potential for attracting a whole new market. While that is fantastic news for those with celiac disease, it also raises the need for awareness of other issues—namely, that going gluten free isn’t a simple feat. Restaurants that wish to add gluten-free items to their menu have much to consider, and dietitians may have new educational opportunities as a result.
Gluten Guidance
Many restaurant owners who are interested in the gluten-free movement are turning to dietitians for help—and those who aren’t should be, according to celiac experts. “If a restaurant is going to offer a gluten-free menu or even highlight gluten-free menu options, they should ideally work with a dietitian who is well versed in celiac disease and the gluten-free diet,” says Tricia Thompson, MS, RD, an independent nutrition consultant for celiac disease and the author of The Gluten-Free Nutrition Guide. “Restaurants must know how to read labels for gluten and prevent cross-contamination in their kitchen. They also must educate all of their staff. I’ve had numerous occasions where my gluten-free sorbet was served with cookies or my gluten-free entrée or salad had a piece of bread stuck in it.”
August 2009 Issue
Double Trouble — Counseling Clients With Diabetes and Celiac DiseaseBy Maggie Moon, MS, RDVol. 11 No. 8 P. 32
“People with this dual diagnosis present a unique challenge to RDs, who must help them not only control their blood glucose but also successfully avoid gluten.”
“Celiac disease is a debilitating autoimmune disorder that affects an estimated 1% of the world’s population, including more than 3 million Americans. Only a small percentage of these people are currently diagnosed, but recent improvements in testing methods and greater public and professional awareness are expected to increase diagnoses by tenfold during the next few years.1 Because treatment is dietary, dietitians can expect to see a substantial increase in clients with celiac disease. This article will help dietitians identify the symptoms of nutrient deficiencies associated with celiac disease and provide guidance to meet their clients’ nutritional needs.”
June 2009 Issue
Free of Gluten, Full of FlavorBy Maura KellerVol. 11 No. 6 P. 28
“In an effort to meet growing demand for gluten-free products and keep competitive, manufacturers are getting creative and delivering more variety, better textures, increased nutritional value, and, most of all, bigger tastes.”
May 2008 Issue
Too Much Information? New Labeling Regulations for 2008 By Cynthia Kupper, RD, CDVol. 10 No. 5 P. 8
“Gluten-Free Labeling - The regulation of gluten-free labeling has been a hot topic of discussion for several years. Both consumers and the food industry are awaiting formal regulations from the FDA, which are expected this fall.”
“Toto, I’ve a feeling we’re not in Kansas anymore.”
— Dorothy in The Wizard of Oz
This may be how your clients with celiac disease feel—like Dorothy in The Wizard of Oz—when traveling abroad. On one hand, celiac disease knows no boundaries, so kindred spirits abound worldwide. However, the local cuisine may present a challenge: a lack of gluten-free products and labeling differences that require research and planning before a trip.”
April, 2007
Today’s CPE — Gluten-Free Labeling: Decisions and DilemmasBy Cynthia Kupper, RD, CDVol. 9 No. 4 P. 10Learning Codes: 4030, 5110, 7100, 7120; CDR Level I
“Intact storage proteins in wheat, rye, barley, and hybrids of these grains, such as kamut and triticale, are known by the generic term gluten. Gluten is the insoluble protein component of wheat and other grains. Intolerance to these proteins produces various diagnoses, including celiac disease (CD), an immune-mediated disease of malabsorption caused by inflammation that damages the microvilli and villi of the small intestine.”
“Nutrition educators instructing patients on the gluten-free diet tend to place an emphasis on a “don’t list,” often leaving out the important message of eating a nutritionally adequate and healthy diet.
It has probably caught your attention that the gluten-free (GF) diet is basking in the public glow. You’ve likely noticed a widening GF specialty section in supermarkets, a surge in products bearing GF labeling, and more restaurants displaying GF items on their menus and Web sites. And it’s hard to miss Internet information on the GF diet and products. A recent Google search for the phrase gluten-free diet yielded 1.1 million results. In fact, GF is so hot that some food manufacturers are betting it will replace the recently vacated low-carb niche, and high-profile companies such as Walt Disney World Resorts are hiring chefs to integrate GF food into their operations.”
“In my work with the Gluten Intolerance Group of North America and the American Dietetic Association (ADA), I have firsthand experience with the development of evidence analysis and evidence-based practice guidelines and have seen how this process can radically change the way dietitians think about and treat nutrition-related conditions. The current controversy about the inclusion or exclusion of oats and wheat starch in gluten-free diets (GFDs) is a prime example of how evidence evaluation can affect dietetic practice. Because it is the field with which I am most familiar, I’ll use it as an example to illustrate and explain the process.”
“Dietitians should be frontrunners leading gluten-free information seekers to the latest, most accurate sources. Stay on the information fast track.
If you’ve got an appointment on your calendar to educate a patient with celiac disease (CD) on a gluten-free (GF) diet, you may think it’s a slam dunk as you reach for your dog-eared manila file folder marked “gluten-free diet.” But if you haven’t been paying attention recently, CD has experienced a roller coaster ride of changes. Things really got rocking in 2003 with an article published in the Archives of Internal Medicine, in which it was revealed that nearly one of every 133 Americans suffers from CD, according to a large multicenter study from the University of Maryland Center for Celiac Research in Baltimore.1 “That’s 10 times higher than we previously thought. That’s news,” says Shelley Case, RD, author of Gluten-Free Diet: A Comprehensive Resource Guide (Case Nutrition Consulting, 2005).”
December 2003
A Wining Attitude Toward Living Gluten-FreeBy Kate Jackson
“Celiac disease (CD) is characterized by an inability to tolerate gluten, a protein found in rye, barley, wheat, and perhaps oats. All that’s needed to tame the disease is a diet free of gluten. It sounds simple enough, but as anyone who’s tried it will testify, coping with gluten intolerance is no easy matter. To fully escape the symptoms and consequences, affected individuals must adhere strictly—and for life—to diets that do not permit bread, cookies, crackers, cake, pasta, pizza, and a host of other foods.”
Background Information About Celiac Disease and Related ConditionsUpdated 08/06/2011
Page #: 24
Celiac/Gluten-free Savvy Dietitians
Tricia Thompson, MS, RD
http://glutenfreedietitian.com/index.php
“Tricia Thompson, MS, RD is a nutrition consultant, author, and speaker specializing in celiac disease and the gluten-free diet. She has written numerous articles for both scientific and popular readers, including those that have appeared in Gluten-Free Living magazine, The Journal of the American Dietetic Association, The Journal of Human Nutrition and Dietetics, and The New England Journal of Medicine.
She is the author of a variety of books on the gluten-free diet, including The Gluten-Free Nutrition Guide and The Complete Idiot’s Guide to Gluten-Free Eating, as well as the American Dietetic Association’s booklet Celiac Disease Nutrition Guide.
Tricia is also a contributing author to The American Dietetic Association’s Nutrition Care Manual and is a work group member of the Association’s Evidence Analysis Library project on gluten intolerance. Ms. Thompson is a member of the dietitian advisory board of Gluten-Free Living magazine and is the author of the magazine’s Neglected Nutrition series.
Tricia has a MS degree in nutrition from Tufts University in Boston, Massachusetts and a BA degree in English Literature from Middlebury College in Vermont. She completed her dietetic internship at the Frances Stern Nutrition Center at the New England Medical Center in Boston.”
Tricia has a page listing RD's that specialize in CD - http://glutenfreedietitian.com/newsletter/?page_id=14
Debra Riedesel RD/LD
Even though Debra's focus is not specifically celiac, she is very well versed in the gluten-free diet.
http://www.cyclediet.com/
“The Cycle Diet was developed by Debra Hope-Riedesel, a licensed registered dietitian (RD) specializing in women's health. The diet is based on the latest nutrition and medical research available on PMS, PMDD, and reproductive health. The original PMS diet plan has been followed by hundreds of women with very safe and satisfing results.
Due to the increasing numbers of women with gluten sensitivity, Celiac disease and PMDD a new Gluten-Free Cycle Diet plan, is now available, please contact the Cycle Diet Dietitian for more information and special requirements.”
Background Information About Celiac Disease and Related ConditionsUpdated 08/06/2011
Page #: 25
Celiac/Gluten-free Savvy Dietitians Continued
Shelley Case, RD
http://www.glutenfreediet.ca/
“A registered dietitian, Shelley Case is a leading international nutrition expert on celiac disease and the gluten-free diet. She is a member of the Medical Advisory Boards of the Celiac Disease Foundation and Gluten Intolerance Group in the United States and the Professional Advisory Board of the Canadian Celiac Association.
She is the author of many articles on celiac disease and the gluten-free diet in leading publications such as Gastroenterology, Digestive Disease Sciences, Pediatrics, Journal of Human Nutrition and Dietetics, Topics in Clinical Nutrition, and Today’s Dietitian. In addition, she co-authored the celiac section in the Manual of Clinical Dietetics (6th edition) by the American Dietetic Association and Dietitians of Canada, and has contributed to many other publications including textbooks, magazines, and other patient education resources. Shelley writes "Ask the Celiac Expert" column for Allergic Living Magazine.
Shelley earned a Bachelor of Science Degree in Nutrition and Dietetics from the University of Saskatchewan and completed her Dietetic Internship at the Health Sciences Center in Winnipeg, Manitoba. Over the past 27 years, Shelley has helped thousands of people improve their eating habits and manage a variety of disease conditions through good nutrition. Currently, she has her own nutrition consulting company specializing in celiac disease and the gluten-free diet that offers a variety of services to individuals, health organizations and the food industry.”
Shelley has some very nice handouts - http://www.glutenfreediet.ca/resources.php
Melinda Dennis, MS, RD, LDN
http://www.deletethewheat.com/
“I was diagnosed with celiac disease and Dermatitis Herpetiformis (an associated skin rash) in 1992 when celiac disease was considered to be very uncommon. Following my passion for teaching, I became a registered dietitian in order to teach the gluten-free diet and lifestyle to others. I received my Master of Science in Nutrition and Health Promotion from Simmons College in Boston, MA, completed my clinical internship at Beth Israel Deaconess Medical Center, and became an Outpatient Dietitian, specializing in celiac disease.
I am the Nutrition Coordinator of the Celiac Center at Beth Israel Deaconess and co-investigator of celiac-related research taking place in our Gastroenterology Division. I have authored several journal articles on the nutritional management of celiac disease and greatly enjoy nationwide public speaking to the celiac and medical communities. One of my greatest joys was founding and chairing the Healthy Villi Greater Boston Celiac/DH Support Group for several years. Now, I act as one of their Nutrition Advisors.“
Background Information About Celiac Disease and Related ConditionsUpdated 08/06/2011
Page #: 26
Suggested ReadingCeliac Disease: A Hidden Epidemic by Dr. Peter Green & Rory Jones
This is a great book for those looking to get a handle on the disease. It covers the medical aspect as well as some day-to-day management of the gluten-free lifestyle.
Living Gluten-Free For Dummies by Danna Korn.
Danna Korn has several books about celiac disease and how to manage day to day gluten-free living. She has a very conversational writing style. Easy & fun to read. This book is a later, updated version of Wheat Free, Worry Free: The Art of Happy, Healthy Gluten-Free Living.
The Gluten-Free Nutrition Guide by Tricia Thompson MS,RD, the Gluten-free Dietitian.
The gluten-free diet is most generally healthy if done correctly, there are some nutrition aspects that those following a gluten-free diet (GFD) must be mindful of. Fiber, iron, calcium and B vitamins can be lacking in the GFD – this book shows how to get them back.
Gluten-Free Diet: A Comprehensive Resource Guide – Expanded & Revised Edition by Shelley Case.
This is a another good resource book.
The Gluten Syndrome: Is wheat causing you harm? by Dr. Rodney Ford
This book does a great job explaining why gluten causes problems. It also explains deficits in celiac disease testing and why The Gluten Syndrome is missed by most mainstream doctors.
The Gluten Effect by Dr. Vikki Petersen & Dr. Richard Petersen.
This book goes in depth on how and why gluten affects the body negatively whether one has celiac disease or non-celiac gluten sensitivity. It's well written and very well referenced. There's 30+ pages of footnotes.
Healthier Without Wheat: A New Understanding of Wheat Allergies, Celiac Disease and Non-Celiac Gluten Intolerance by Dr. Stephen Wangen
Dr. Wangen clears up the often murky waters of celiac disease, allergies & intolerances. It explores those facts that show how wheat can be source of ill health for many – celiac or not.
Background Information About Celiac Disease and Related ConditionsUpdated 08/06/2011
Page #: 27
Suggested Reading Continued
Dangerous Grains: Why Gluten Cereal Grains May Be Hazardous To Your Health by James Braly, MD and Ron Hoggan M.A.
Dangerous Grains turns the U.S. Food Guide Pyramid upside down by exposing the myriad health risks posed by gluten grains (wheat, rye, barley, spelt, kamut, and triticale). The authors, leading experts in the field of food allergies, and celiac disease, present compelling evidence that our grain-centered diet is to blame for a host of chronic illnesses. Largely misunderstood and frequently misdiagnosed, these disorders can be prevented and reversed by the useful program outlined in this important book.
Miscellaneous Links of InterestNational Celiac Organizations:
Celiac Disease Foundation - http://www.celiac.org/Celiac Sprue Association - http://www.csaceliacs.org/CeliacDisease.phpGluten Intolerance Group (GIG) - http://gluten.net/
Celiac Disease & Diabetes Information:
Registered Dietitians have a handle on the dietary management of diabetes. Since CD and Type 1 Diabetes are both auto-immune diseases, they should also be aware of the close connection. About 10% of children & 2% of adults with Type 1 Diabetes also have CD.
All Children With Type 1 Diabetes Should Be Tested for Celiac Disease -http://www.diabetesarchive.net/diabetes-research/summaries/Hansen-type-1-children-should-be-tested-for-celiac.jsp%20
National Celiac Foundation for Celiac Awareness: Type 1 Diabetes - http://www.celiaccentral.org/About-Celiac-Disease/Related-Diseases/Type-1-Diabetes/39/
Juvenile Diabetes Research Foundation's Life with Diabetes Newsletter – Celiac & Type 1 Diabetes - http://www.jdrf.org/files/Life_with_Diabetes/lifenewsletter/032305.Celiac21.pdf
Type 1 Diabetes And Celiac Disease Linked Through Shared Genetic Markers - http://www.jdrf.org/index.cfm?fuseaction=home.viewPage&page_id=65C238A2-110A-9BB5-F8EA5A0D01E45F91
Double Diagnosis: Living with Type 1 Diabetes and Celiac Disease - http://www.jdrf.org/index.cfm?fuseaction=home.viewPage&page_id=9649DD27-1321-C844-13758238CE2122A1
The Gluten File's list of CD/Diabetes research articles - http://jccglutenfree.googlepages.com/type1diabetesandautoimmunethyroiddisease
Celiac.com's list of CD/Diabetes studies - http://www.celiac.com/categories/Celiac-Disease-Research:-Associated-Diseases-and-Disorders/Diabetes-and-Celiac-Disease/
