Sandy Arner, RD, LDN Clinical Dietitian James H. Quillen VA Medical Center March 26, 2013

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Sorting Through Gluten Free

Sandy Arner, RD, LDNClinical Dietitian

James H. Quillen VA Medical CenterMarch 26, 2013

Disclosure Slides

Financial InterestI, 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

DrugsI, Sandra Arner, DO NOT anticipate discussing any unapproved/ investigative use of a commercial product/device during this activity or presentation

Describe three symptoms of celiac disease State two conditions associated with

untreated celiac disease Identify three grain alternatives that are

gluten free

Learning Objectives

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

What Is Celiac Disease (CD)

Still unknown

Cause of Celiac Disease

General name for prolamins (storage proteins)

in wheat, rye, barley Toxic prolamins

Gliadin in wheat Secalin in rye Hordein in barley

What is Gluten?

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

Some CD Statistics

³Nationl Foundation For Celiac Awareness, Updated Feb. 28, 2013

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)

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

Statistics (cont’d)

¹National Foundation for Celiac Awareness, Updated Feb. 28, 2013²Source: Daniel Leffler, MD, MS, The Celiac Center at Beth Israel Deaconness Medical Center

Symptoms Celiac Disease

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

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

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

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

Celiac Disease Risk Factors

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

Symptoms Blood test Small bowel biopsy

Should be tested while on a gluten-containing diet

Diagnosis of CD

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

Serologic Tests

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

Diagnosis—The Biopsy

What Does Celiac Disease Look Like?

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

Refractory Celiac Disease

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

Dermatitis Herpetiformis (DH)

MalabsorptionMalnutrition Low blood glucose or swings in blood glucose Osteoporosis Infertility Neurological problems Lactose intolerance Cancer

Some Complications of Untreated 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

Treatment for CD

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

Rye bread Rye flour

Contain Gluten (from rye)

Commonly Have GlutenRed 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 Soy sauce (made from soy & wheat) Marinades Gravy Salad dressings Candy Flavored coffees and teas Nutritional supplements Soups

Controversial 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”

Oatmeal Oat bran Oat flour Oats

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

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

Using Gluten Free Flours

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 and Ale

Has gluten from barley malt

ONLY have gluten free beers or ale that are so labeled And IF your

healthcare provider allows

Wine, Distilled Alcohol

Wine and distilled alcohol are generally safe As long as your

healthcare provider allows alcohol

Incorporate whole foods into

gluten free diet Reverse nutritional deficiencies Restore gut health

Let Food Be Thy Medicine

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

Nutrient-Dense Gluten Free Diet

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

Cross-Contamination Concerns

A must for those with celiac

disease Carefully check the ingredient list

Label Reading

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)

Food Allergen Labeling and Consumer Protection Act of 2004 (FALCPA)

(Public Law 108-282, Title II) of the FDA

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”

Some 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

Iron Folate Niacin Vitamin B12 Calcium Phosphorus Zinc Fiber

GF Diet Potentially Low in Nutrients

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 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

Reverse Nutritional Deficiencies

Iron Calcium Vitamin D Zinc Magnesium

Vitamin K Folate Vitamin B6 Vitamin B12 Fiber

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

Reverse Nutrition Deficiencies (cont’d)

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

Restore Gut Health

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

Remember

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

Who Is Buying Gluten Free

Gluten-degrading enzymes Modified grains that lack immunogenic

compounds Zonulin inhibitors that decrease intestinal

permeability Anti-inflammatory therapy Immunotherapy Hookworms

Future Possibilities

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

Tax Deductions

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 Celiac.com http://www.celiac.com

Helpful Web Sites