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Sandy Arner, RD, LDN Clinical Dietitian James H. Quillen VA Medical Center March 26, 2013 Disclosure Slides Financial Interest I, Sandra Arner, DO NOT have a financial interest/arrangement or affiliation with one or more organizations that could be perceived as a real or apparent conflict of interest in the context of the subject of this presentation Drugs I, Sandra Arner, DO NOT anticipate discussing any unapproved/ investigative use of a commercial product/device during this activity or presentation Learning Objectives Describe three symptoms of celiac disease State two conditions associated with untreated celiac disease Identify three grain alternatives that are gluten free What Is Celiac Disease (CD) Autoimmune digestive disease Damages villi of small intestine Interferes with absorption of nutrients from food Also called Gluten-sensitive enteropathy Sprue Non-tropical sprue Celiac sprue It is NOT an allergy Cause of Celiac Disease Still unknown What is Gluten? General name for prolamins (storage proteins) in wheat, rye, barley Toxic prolamins Gliadin in wheat Secalin in rye Hordein in barley Some CD Statistics 1 in 133 or 1% of American population has Celiac Disease or CD (about 3 million people)¹ 1 in 141 or 0.71% of Americans have CD² In 70% of identical twin pairs, both twins have the disease³ Family members who have an autoimmune disease are at a 25% increased risk of having celiac disease³ ¹Prevalence of Celiac Disease in At-risk and Not-at-risk Groups in the United States. Arch Int. Med. (2003) 163:286 ²The American Journal of Gastroenterology 107, 1538-1544 (October 2012) ³Nationl Foundation For Celiac Awareness, Updated Feb. 28, 2013 Statistics (cont’d) Estimated 85% of Americans who have celiac disease are undiagnosed or misdiagnosed with other conditions¹ 6-10 years is the average time a person waits to be correctly diagnosed² 5-22% of celiac patients have an immediate family member (1st degree relative) who also has celiac¹ Burden of disease over four-year period per patient: Celiac-free males: $4,019 Males with CD: $14,191¹ May is Celiac Awareness Month ¹National Foundation for Celiac Awareness, Updated Feb. 28, 2013 ²Source: Daniel Leffler, MD, MS, The Celiac Center at Beth Israel Deaconness Medical Center Symptoms Celiac Disease Lactose intolerance Abdominal pain Bloating/gas Diarrhea and/or constipation Indigestion/reflux (“heartburn”) Nausea and vomiting Fatigue/lethargy Muscle weakness Itchy skin rash Tingling/numbness Mouth sores Bone pain Easy skin bruising Edema of hands and feet Joint pain Delayed growth Weight loss or gain Osteoporosis Headaches Depression/irritability Hair loss Symptoms of CD (cont’d) Iron, folate and/or vitamin B12 deficiency Other vitamin and mineral deficiencies (A,D, E, K, calcium) Elevated liver enzymes Discolored teeth Migraine headaches Depression Menstrual irregularities Infertility in both women and men Recurrent miscarriages Celiac Disease Risk Factors These place one at greater risk An immediate family member with CD Presence of HLA-DQ2 and HLA-DQ8 genes About 95% of people with celiac disease have the HLA-DQ2 gene Most of the remaining 5% have the HLA-DQ8 gene Major life event, emotional stress, pregnancy, or surgery in those who are genetically predisposed Those with other autoimmune disease Those with another genetic disorder Infants—exposure to gluten before 3 months of age Some Disorders/Conditions Associated More Frequently with CD Type I diabetes Thyroid disease Liver disease Sjögren’s syndrome Lupus Addison’s disease Scleroderma Alopecia areata Rheumatoid arthritis Turner syndrome Raynaud’s syndrome Diagnosis of CD Symptoms Blood test Small bowel biopsy Should be tested while on a gluten-containing diet Serologic Tests No standardization in testing for diagnosis of CD Some of these may be done: • AGA (antigliadin antibodies)-IgA • AGA-IgG • tTG (anti-tissue transglutaminase)-IgA • EMA (anti-endomysial antibodies)-IgA • Total serum IgA Gluten free diet should not be started before blood tests and biopsy Diagnosis—The Biopsy Diagnosis: Intestinal Biopsy A biopsy of the small intestine can confirm the findings of the blood test. Celiac disease damages or destroys the villi—the small, hairlike protrusions in the intestine What Does Celiac Disease Look Like? Refractory Celiac Disease Small percentage of people with celiac disease do not respond to a gluten-free diet. May be prescribed glucocorticoids or at times immunosuppressants are indicated to induce remission Dermatitis Herpetiformis (DH) Another form of celiac disease Chronic skin condition Intense burning Itchy and blistering rash Often misdiagnosed with eczema, contact dermatitis, allergies, hives, herpes, or psoriasis Many with DH have varying degrees of small intestinal villous atrophy Diagnosis– skin biopsy from unaffected skin adjacent to blisters or erosions Treatment is a strict gluten free diet for life Some Complications of Untreated CD MalabsorptionMalnutrition Low blood glucose or swings in blood glucose Osteoporosis Infertility Neurological problems Lactose intolerance Lymphoma of small intestine Cancer Treatment for CD Only known treatment is strict gluten free diet for life! Additional vitamin and mineral supplements may be needed to correct malnutrition Some may also need to eliminate lactose until damaged bowel is healed Contain Gluten (from wheat) Atta Bulgur Couscous Durum Einkorn Emmer Farina Graham flour Hydrolyzed wheat protein Kamut Motzoh, Matzoh meal Modified wheat starch Seitan Semolina Spelt (a form of wheat) Dinkel Farro or Faro Triticale Wheat Wheat bran Wheat flour Wheat germ Wheat starch Contain Gluten (from barley) Ale Barley (flakes, flour, pearl) Beer Brewer’s yeast Lager Malt Malt extract, malt syrup, malt flavoring Malt vinegar Malted milk Contain Gluten (from rye) Rye bread Rye flour Commonly Have Gluten Red Flags For Gluten In bread, cereal, pasta, crackers, baked goods Wheat Rye Barley “Hidden” Gluten Processed meat Potato chips French fries Breaded foods Malt (made from barley) Hydrolyzed Vegetable Protein (often contains wheat) Sauces Marinades Gravy Salad dressings Candy Flavored coffees and teas Nutritional supplements Soups Controversial Oats Oatmeal Oat bran Oat flour Oats Safety of oats much debated Barley often contaminates oats Wheat contaminates oats Only consume pure, uncontaminated oats Best to be labeled “gluten free” Gluten Free Grains/Flours/Starches Rice Corn (maize) Soy flour Potato flour Tapioca Bean flour Garfava flour Sorguhm Quinoa Potato flour/starch Millet Buckwheat Arrowroot flour Amaranth Teff Montina® (Indian ice grass) Flax Nut flours Cornmeal Cornstarch Using Gluten Free Flours Buy items made with whole grain flour and bean flour to get healthier nutrients GF often lower in fiber Purchase products with added vitamins and minerals Refined carbohydrates often in GF products generally make baked goods higher in calories and total carbohydrate than regular versions Replacing regular bread, muffins, baked goods for GF products without regards to calories weight gain MAY Contain Gluten •Brown rice syrup •Breading & coating mixes •Croutons •Energy Bars •Flour or cereal products •Imitation bacon •Imitation seafood •Marinades •Panko (Japanese bread crumbs) •Pastas •Processed luncheon meats •Sauces, gravies •Self-basting poultry •Soy sauce or soy sauce solids MAY Contain Gluten •Soup bases •Stuffings, dressing •Thickeners (Roux) •Communion wafers •Herbal supplements •Prescription drugs & over-the-counter medications Lipstick •Nutritional supplements •Vitamins & mineral supplements •Play dough: a potential problem if hands are put on or in the mouth while playing with play dough Hands should be washed immediately after use Alcohol Beer Has gluten from barley malt ONLY have gluten free beers that are so labeled And your healthcare provider allows Wine, Distilled Alcohol Wine and distilled alcohol are generally safe As long as your healthcare provider allows alcohol Let Food Be Thy Medicine Incorporate whole foods into gluten free diet Reverse nutritional deficiencies Restore gut health Nutrient-Dense Gluten Free Diet Adhere to a total (100%) gluten free diet Stress importance of nutrient-dense foods to regain health Stress importance of proper nutrition to restore gut health Focus on whole foods vs. highly processed gluten free packaged foods (& prepare without ingredients that contain gluten) Meat Fish Eggs Rice Beans Fruits Vegetables Cross-Contamination Concerns Foods prepared on common surfaces with gluten items Using utensils that are not thoroughly cleaned after preparing gluten-containing foods. Using a common toaster for GF bread and regular bread is a major source of contamination Flour sifters should not be shared with gluten-containing flours Deep fried foods cooked in oil shared with breaded products containing gluten Knives for spreadable condiments used for both gluten free and gluten containing products Label Reading A must for those with celiac disease Carefully check the ingredient list Food Allergen Labeling and Consumer Protection Act of 2004 (FALCPA) (Public Law 108-282, Title II) of the FDA Food label to clearly identify wheat and other common food allergens in list of ingredients Eight major foods or food groups— Milk Eggs Fish (e.g., bass, cod, flounder) Crustacean shellfish (e.g., crab, lobster, shrimp) Tree nuts (e.g., almonds, walnuts, pecans) Peanuts Wheat Soybeans Develop and finalize rules for term “gluten free” on product labels (not done yet) “Gluten Free” FDA gluten free labeling to be voluntary FDA proposing to define the food labeling term "gluten-free" to mean a food bearing this claim does not contain any of the following: An ingredient that is a "prohibited grain," which refers to any species of wheat (e.g., durum wheat, spelt wheat, or kamut), rye, barley, or their crossbred hybrids An ingredient (e.g., wheat flour) that is derived from a "prohibited grain" and that has not been processed to remove gluten An ingredient (e.g., wheat starch) that is derived from a "prohibited grain" that has been processed to remove gluten, if the use of that ingredient results in the presence of 20 micrograms or more gluten per gram of food (i.e., 20 ppm) Or 20 micrograms or more gluten per gram of food Gluten Free Symbols Eating Gluten Free Grocery Shopping Many gluten free foods available now Various stores carry gluten free foods Eating out Must ask, ask, ask Some restaurants do have gluten free menu items GF Diet Potentially Low in Nutrients Iron Folate Niacin Vitamin B12 Calcium Phosphorus Zinc Fiber Source: Academy of Nutrition and Dietetics Celiac Disease Toolkit 2011 Assess Biochemical Data & Results of Medical Procedures Gastrointestinal profile Intestinal biopsy Or skin biopsy for DH Celiac antibodies IgA-tTG IgA-EMA IgA/IgG-DGP Total IgA Nutritional anemia profile Hemoglobin Hematocrit Folate Ferritin Vitamin B12 Vitamin profile Thiamin Vitamin B6 25-hydroxy vitamin D Mineral profile Copper Zinc Lipid profile Electrolyte profile Renal profile Bone density screening Source: Academy of Nutrition and Dietetics Celiac Disease Toolkit 2011 Nutrition Intervention Education on gluten free diet Consumption of whole/enriched glutenfree grains & other products Consideration of MV and mineral supplement Inclusion of gluten free oats as tolerated Calcium/vitamin D for reduced bone density Iron supplementation for iron deficiency anemia Education on food crosscontamination Source: Academy of Nutrition and Dietetics Celiac Disease Toolkit 2011 Reverse Nutritional Deficiencies Common nutrition deficiencies Iron Calcium Vitamin D Vitamin K Folate Vitamin B12 Zinc Magnesium Reverse Nutrition Deficiencies (cont’d) Foods first Supplements as necessary Nutrients often cannot be absorbed until intestinal site of absorption heals Improvement in nutrient stores important Indicates intestines are healing Indicates adherence to gluten free diet Follow up blood to test antibodies and nutrient levels is important Reverse Nutrition Deficiencies (cont’d) Ensure medications and supplements are gluten free Be aware of physiological reasons someone may not be absorbing certain nutrients Then make recommendations and monitor Provide tips for maximizing nutrient uptake Restore Gut Health Number one way to improve gut health is removing gluten from diet May take longer to restore gut health for some Some may need steps beyond gluten free diet Digestive health and integrity of gut lining play important roles in immune health Remember Wheat free is not gluten free When in doubt, go without May be contamination in food preparation Stay symptom free with gluten free Eating gluten free is work Who Is Buying Gluten Free Those who suffer from celiac disease Those who are sensitive to gluten Those who think gluten free products are healthier Those who follow a trend in the news Future Possibilities Gluten-degrading enzymes Modified grains that lack immunogenic compounds Zonulin inhibitors that decrease intestinal permeability Anti-inflammatory therapy Immunotherapy Hookworms Tax Deductions The cost of gluten-free (GF) food that is in EXCESS of the cost of the gluten containing food that you are replacing The full cost of special items needed for a GF diet may be deducted If you make a special trip to a store to purchase GF foods, the actual cost of your transportation to and from the store is deductible The full cost of postage or other delivery expenses for GF foods made by mail order are deductible Helpful Web Sites Celiac Disease Foundation: http://www.celiac.org Celiac Sprue Association: http://www.csaceliacs.info National Foundation for Celiac Awareness: http://www.celiaccentral.org NIH Celiac Disease Awareness Campaign: http://celiac.nih.gov National Digestive Diseases Information Clearinghouse: http://digestive.niddk.nih.gov What Is Celiac Disease (CD) Autoimmune digestive disease Damages villi of small intestine Interferes with absorption of nutrients from food Also called Gluten-sensitive enteropathy Sprue Non-tropical sprue Celiac sprue It is NOT an allergy Some Complications of Untreated CD MalabsorptionMalnutrition Low blood glucose or swings in blood glucose Osteoporosis Infertility Neurological problems Lactose intolerance Cancer Nutrient-Dense Gluten Free Diet Adhere to a total (100%) gluten free diet Stress importance of nutrient-dense foods to regain health Stress importance of proper nutrition to restore gut health Focus on whole foods vs. highly processed gluten free packaged foods (& prepare without ingredients that contain gluten) Meat Fish Eggs Rice Beans Fruits Vegetables Cause of CD Gluten Free Starches Potatoes Rice Corn Soy Flax Buckwheat Naturally Gluten Free Flours Flours made from the following: Brown rice Fava beans White beans Amaranth Potatoes Oats—BUT MAKE SURE IT IS CERTIFIED GLUTEN FREE Gluten Free Grains/Flours Rice Corn (maize) Soy Potato Tapioca Beans Garfava Sorguhm Quinoa Millet Buckwheat Arrowroot Amaranth Teff Montina® (Indian Rice grass) Flax Nut flours Nutrient-Dense Gluten Free Diet Reinforce Nutrient-dense alternative ingredients Culinary skills for cooking gluten free foods Gluten free foods are often not fortified similarly to their gluten containing counterparts Grocery Shopping LOTS of gluten free foods available now Eating Out Must ask, ask, ask Some restaurants do have gluten free menu items Leaky Gut Syndrome What it is—increased permeability of intestine lining Less able to protect body from bacteria, toxins, and undigested proteins and fats that leak into intestines and blood stream Consider leaky gut as potential cause if still experience with strict adherence to gluten free diet Pain in multiple joints Chronic skin condition Chronic diarrhea Chronic abdominal pain Chronic fatigue/malaise Chronic depression Connectedness Nutritional Concerns Anemia Iron Folate Vitamin B12 Bone disease Vitamin D Lactose intolerance Dietary fiber Adhere To Diet; Autism Gluten-Free Diet and Autism Some parents believe a gluten-free diet can help children with autism, although the idea is controversial. The theory suggests children with autism are sensitive to gluten, and avoiding the protein can improve certain symptoms, such as speech or social behavior. At present, there is not enough research to confirm or refute the effectiveness of gluten-free diets in people with autism. Terminology Wheat—one of several grains made up of gluten, albumin, and globulin proteins Gluten—protein complex found in wheat, rye, barley , spelt, triticale??? Gliadin—one of two main protein groups in gluten Glutenins—other protein group in gluten Terminology Wheat—one of several grains made up of gluten, albumin, and globulin proteins Gluten—protein complex found in wheat, rye, barley, spelt, triticale Gliadin—one of two main protein groups in gluten Glutenins—other protein group in gluten Further Information There are NO pharmaceutical cures for celiac disease. A 100% gluten-free diet is the only existing treatment for celiac today A positive attitude, 100% of the time, helps celiacs create a gluten-free lifestyle for themselves and their affected family members. The celiac disease diagnosis rate may reach 50-60% by 2019, thanks to efforts to raise public awareness of celiac disease. (Source: Datamonitor Group, 2009) Gluten-free sales reached more than $2.6 billion by the end of 2010 and are now expected to exceed more than $5 billion by 2015. (Source: Packaged Facts, 2011) Gluten Free Kitchen Toolbox Gluten Free Baked bread Tortillas Pie crust Pizza crust Quinoa Whole grain sorghum Millet Gluten Free Wild and brown rice Whole grain pastas Beans (legumes) Whole grain gluten free flour blend Other Autoimmune Disorders/Conditions Associated More Frequently with CD Autoimmune thyroid disease— Hashimoto’s Thyroiditis Liver diseases Lupus (SLE) Addison’s Disease Chronic active hepatitis Rheumatoid arthritis Turner Syndrome Sjögren’s Syndrome Raynaud’s Syndrome Alopecia areata Scleroderma Some Disorders/Conditions Associated More Frequently with CD Type I diabetes Other autoimmune disorders Autoimmune thyroid disease Autoimmune liver disease Sjögren’s syndrome Addison’s disease Alopecia areata Osteoporosis Down syndrome Turner syndrome Selective IgA deficiency Conditions Associated With Untreated Celiac Disease Malnutrition Anemia Osteoporosis and osteopenia Delayed growth Failure to thrive in children Infertility and reproductive health problems Migraines Neurological conditions Cancer Diagnosis of CD Symptoms Blood test Intestinal biopsy Testing Diagnosis: Blood Tests Because the symptoms of celiac disease can be varied, it is often undiagnosed or misdiagnosed. A blood test can detect high levels of certain antibodies that suggest that you have celiac disease. If the results are negative, your doctor may order additional testing, possibly including an analysis of your DNA to help get an accurate diagnosis. Genetic Tests for CD Genetic testing offers another important piece of information. About onethird of Americans have the DQ2 or DQ8 genes that are considered necessary for a person to develop the disease. If you don't have those genes, your doctor can rule out celiac disease as a cause of your symptoms, but many people have the genes and don't develop CD. Additional Symptoms CD in Children Irritability Behavioral changes Concentration and learning difficulties Failure to thrive Delayed puberty Dental enamel abnormalities Comparison Gluten Sensitivity Wheat Allergy Similar symptoms, such as abdominal pain, fatigue, or headaches Not intestinal damage or more severe consequences of celiac disease Gluten-free diet eliminates symptoms Adverse reaction to one or more proteins in wheat Symptoms—skin, GI tract, respiratory tract Avoidance of wheat and wheat-containing foods Gluten Sensitivity Some overlap of celiac disease symptoms—pain, fatigue, headaches, tingling, numbness, “foggy brain” Non-intestinal symptoms often continue Antibodies and intestinal damage (seen in celiac disease) are not present If there is intestinal damage, it is minimal and goes away with gluten free diet Currently no laboratory or histological tests diagnose gluten sensitivity Other Prolamins These prolamins NOT toxic to those with CD Rice prolamin orzenin Corn prolamin zein Sometimes erroneously labeled “corn gluten” To Decrease Intestinal Permeability Eat an anti-inflammatory diet (more on this) Limit alcohol consumption Stop aspirin and NSAIDS if doctor recommends Some nutrients may play role in restoring functional integrity of gut lining L-glutamine—beets, cabbage, chicken, fish, beef, beans, dairy Zinc—beef, lamb, mushrooms, green leafy vegetables, scallops, shrimp, turkey, pumpkin and sesame seeds Supplementation may be recommended
