1. Sorting Through Gluten Free
Sandy Arner, RD, LDN
Clinical Dietitian
James H. Quillen VA Medical Center
March 26, 2013

2. 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

3. Learning Objectives Describe three symptoms of celiac disease
State two conditions associated with untreated celiac disease
Identify three grain alternatives that are gluten free

4. What Is Celiac Disease (CD)
Autoimmune digestive disease
Damages villi of small intestine
Interferes with absorption of nutrients from food
Those with CD cannot tolerate gluten
Also called
Gluten-sensitive enteropathy
Sprue
Non-tropical sprue
Celiac sprue
It is NOT an allergy

5. Cause of Celiac Disease
Still unknown

6. What is Gluten?
General name for prolamins (storage proteins) in wheat, rye, barley
Toxic prolamins
Gliadin in wheat
Secalin in rye
Hordein in barley

7. 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, (October 2012)
³Nationl Foundation For Celiac Awareness, Updated Feb. 28, 2013

8. 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 celiac disease¹
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

9. Symptoms Celiac Disease
Lactose intolerance
Bone pain
Easy skin bruising
Edema of hands and feet
Joint pain
Delayed growth
Weight loss or gain
Osteoporosis
Headaches
Depression/irritability
Hair loss
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

10. 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

11. Celiac Disease Risk Factors
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

12. 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

13. Diagnosis of CD Symptoms Blood test Small bowel biopsy
Should be tested while on a gluten-containing diet

14. Serologic Tests No standardization in testing for diagnosis of CD
Anti-tissue transglutaminase antibodies (tTGA)
Anti-endomysium antibodies (EMA)
Gluten free diet should not be started before blood tests and biopsy

15. 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 in the intestine

16. What Does Celiac Disease Look Like?

17. Refractory Celiac Disease
Very 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

18. Dermatitis Herpetiformis (DH)
Another form of celiac disease
Chronic skin condition
Intense burning
Itchy and blistering rash
Often misdiagnosed as 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

19. Some Complications of Untreated CD
MalabsorptionMalnutrition
Low blood glucose or swings in blood glucose
Osteoporosis
Infertility
Neurological problems
Lactose intolerance
Cancer

20. 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

21. 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

22. 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

23. Contain Gluten (from rye)
Rye bread
Rye flour

24. Commonly Have Gluten Red Flags For Gluten “Hidden” Gluten
Processed meat
Potato chips
French fries
Breaded foods
Malt (made from barley)
Hydrolyzed Vegetable Protein (often contains wheat)
Sauces
Soy sauce (made from soy & wheat)
Marinades
Gravy
Salad dressings
Candy
Flavored coffees and teas
Nutritional supplements
Soups
In bread, cereal, pasta, crackers, baked goods
Wheat
Rye
Barley

25. 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 or certified as “gluten free”

26. 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

27. 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

28. 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

29. 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

30. Wine, Distilled Alcohol
Beer and Ale
Wine, Distilled Alcohol
Has gluten from barley malt
ONLY have gluten free beers or ale that are so labeled
And IF your healthcare provider allows
Wine and distilled alcohol are generally safe
As long as your healthcare provider allows alcohol

31. Let Food Be Thy Medicine
Incorporate whole foods into gluten free diet
Reverse nutritional deficiencies
Restore gut health

32. Nutrient-Dense Gluten Free Diet
Adhere to a total (100%) gluten free diet
Need nutrient-dense foods to regain health
Need 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

33. Cross-Contamination Concerns
Preparing foods 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
Sharing flour sifters with gluten-containing flours
Deep frying foods cooked in oil shared with breaded products containing gluten
Using knives for spreadable condiments for both gluten free and gluten-containing products

34. Label Reading A must for those with celiac disease
Carefully check the ingredient list

35. Food Allergen Labeling and Consumer Protection Act of (FALCPA) (Public Law , Title II) of the FDA
Food labels 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)

36. “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

37. Some Gluten Free Symbols

38. Eating Gluten Free Grocery Shopping Eating Out
MANY gluten free foods available now
Various stores carry gluten free foods
Must ask, ask, ask
Some restaurants do have gluten free menu items

39. 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

40. 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

41. Nutrition Intervention
Education on gluten free diet
Consumption of whole/enriched gluten- free 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 cross-contamination
Source: Academy of Nutrition and Dietetics Celiac Disease Toolkit 2011

42. Reverse Nutritional Deficiencies
Iron
Calcium
Vitamin D
Zinc
Magnesium
Vitamin K
Folate
Vitamin B6
Vitamin B12
Fiber

43. 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

44. 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

45. 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

46. 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

47. 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

48. Future Possibilities Gluten-degrading enzymes
Modified grains that lack immunogenic compounds
Zonulin inhibitors that decrease intestinal permeability
Anti-inflammatory therapy
Immunotherapy
Hookworms

49. 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

50. Helpful Web Sites Celiac Disease Foundation: Celiac Sprue Association:
Celiac Sprue Association:
National Foundation for Celiac Awareness:
NIH Celiac Disease Awareness Campaign:
National Digestive Diseases Information Clearinghouse
Celiac.com