Dealing Your Clients a Winning Hand..

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Dealing Your Clients a Winning Hand.. Know the
Facts About Celiac Disease the Gluten Free Diet
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• Pam Cureton, RD, LDN
• Center for Celiac Research
• University of Maryland School of Medicine
• 22 S. Penn Street
• Baltimore, MD 21201
• Phone [phone]
• pcureton_at_peds.umaryland.edu
• www.celiaccenter.org

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Definition
Celiac disease is an immune-mediated disease
triggered by the ingestion of gluten-containing
grains (wheat, rye, barley) in genetically
susceptible individuals.
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Pathogenesis

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Normal small bowel
Celiac disease
Gluten
Gluten-free diet
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Prevalence of CD in the US

• NIH Consensus Numbers indicate that there are 2.5
  to 3 million in the US that have CD.
• but
• Only 90,000 to 100,000 have been diagnosed (Less
  than 5 of the affected population).

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Getting the right diagnosis

• Clinical symptoms
• Serological testing
• While on a regular diet
• Intestinal biopsy Gold Standard
• While on a regular diet
• Improvement of symptoms
• While on a GFD

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SymptomsIntestinal Adult Onset

• Diarrhea
• Constipation
• Gas, bloating
• Abdominal pain
• Nausea Vomiting
• Reflux

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SymptomsExtra-Intestinal Adult Onset

• Anemia
• Bone and joint pain
• Osteoporosis
• Liver and biliary tract disease
• Pancreatitis
• Arthritis
• Hyposplenism
• Kidney stones
• Mouth ulcers

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Extra-Intestinal Adult Onset

• Neurological problems
• Ataxia
• Peripheral neuropathy
• Epilepsy
• Psychiatric Disorders
• Women Sub-In-fertility
• Miscarriages
• Low birth weight babies

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The Celiac Iceberg
Symptomatic Celiac Disease
Manifest mucosal lesion
Silent Celiac Disease
Normal Mucosa
Latent Celiac Disease
Genetic susceptibility - DQ2, DQ8
Positive serology
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Silent Celiac Disease

• No symptoms but positive blood test and positive
  biopsies
• Associated Autoimmune disorders
• Type 1 diabetes
• Rheumatoid Arthritis
• Thyroid disease
• Other
• Downs Syndrome, IBD, Crohns
• Disease

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Latent Celiac Disease

• Blood test are positive but normal biopsy.
• No symptoms but may develop symptoms and or
  intestinal damage later.

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Symptoms in Children

• Failure to Thrive
• Short Stature
• Diarrhea/constipation
• Delayed puberty
• Difficulty in learning
• Dental enamel defects

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• Serological testing

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Serological Screening

• Due to high sensitivity and specificity, the
  best available tests are
• IgA endomysial antibody immunofluorescence (EMA)
• Tissue Transglutaminase
• (tTG)
• Total IgA
• HLA haplotypes DQ2 and DQ8

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Genetic testing?

• Must have the genes to have the disease
• Testing can rule out CD, not diagnose as 30 of
  the population has HLA DQ2 and 8
• Cost of the test may not be covered by insurance

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General population of the US
HLA-DQ2 or HLA-DQ8
Individuals with Celiac Disease
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Gold Standard EGD
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Correct Diagnosis?
Never start the GFD before proper testing is
completed!

• After 4-6 months of a GFD, serology levels may
  return to normal.
• 1 week on the GFD can change the result of the
  biopsy.

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Other testing?

• Stool testing?
• Allergy testing?
• Celiac disease vs.
• gluten intolerance/sensitivity?

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Stool testing

• Stool testing has not been validated for testing
  for CD. A peer-reviewed article by Kappler et
  al. concluded that No stool test was suitable
  for screening for celiac disease in children with
  symptoms.
• Kappler M, et al. Detection of secretory IgA
  antibodies against gliadin and human tissue
  transglutaminase in stool to screen for coeliac
  disease in children Validation study. BMJ.
  2006332(7535)213-4.

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Allergy testing

• CD is an autoimmune disease, not an allergy
• Immunoglobulin E, IgE, is the main type of
  antibody involved in an allergic reaction.
• IgE circulating throughout the bloodstream causes
  an immediate immune
• response or allergic reaction

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Intolerance/sensitivity

• It is possible to be gluten intolerant and not
  have CD. Symptoms occur but no villous atrophy
  is seen on biopsy.
• Non-allergic, non-autoimmune reaction to gluten
  that can cause symptoms similar to those
  experienced by people with celiac disease.
• The diagnosis is based on exclusion criteria.

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• Improvement of symptoms
• while on a GFD

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Serology back to normal

• Follow up lab testing
• 4-6 months after starting the GFD
• If positive repeat in 3 months after review of
  the GFD
• If negative repeat annually

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What do you do if

• What to do if your patient has already been on a
  GFD but no proper testing?
• Challenge?
• Continue to follow GFD?
• HLA testing?

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Challenge?

• The gold standard for diagnosing CD is the
  intestinal biopsy but is a challenge necessary
  for everyone?
• Severity of symptoms when gluten ingested
• Age of patient pre-pubescent, pregnancy
• Current compliance level
• Commitment to the GF lifestyle
• Reason for getting the right diagnosis

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Gluten challenge

• There are no guidelines regarding duration of the
  gluten challenge, gluten dose, or monitoring
  parameters.
• Michael Marsh, M.D. recommends
• 4 slices of bread/day
• 1 month duration but if tolerating gluten
  exposer, 3 month duration preferred before EGD

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• Treatment of celiac disease
• The Gluten Free Diet

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Gluten-Containing Ingredients to Avoid
Wheat Bran Wheat Starch Wheat Germ
Wheat Barley Rye
Barley Malt /Extract
Other Types of Wheat
Spelt Kamut Emmer
Einkorn Semolina Faro
Triticale Filler
Bulgur Couscous Durum
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What about oats?
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Thompson T, NEJM2004
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Oats If you must

• All antibodies must be normal
• All symptoms must be resolved
• Return for recheck of antibodies 4-6 months after
  starting oats
• Find a pure source of oats such as
  www.creamhillestates.com or Bobs Red Mill

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Frequently Overlooked Foods That May Contain
Gluten

• Broth
• Candy
• Communion wafers
• Imitation bacon
• Imitation seafood
• Marinades
• Processed meats

• Roux
• Sauces
• Self-basting turkey
• Soup base
• Soy sauce
• Thickeners

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Labeling101

• In 2006, the Food Allergen Labeling and Consumer
  Protection Act (FALCPA) requires that companies
  identify in plain English the eight most
  prevalent food allergens egg, fish, milk,
  peanuts, shell fish, soybean, tree nuts and WHEAT
• Does not cover Barley (malt), Rye or Oat
• FDA must define the term GF

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Example of FALCPA

• Including the ingredient list with parentheses
• Ingredients Enriched flour (wheat flour, malt
  flavoring, niacin, reduced iron, thiamin
  mononitrate, riboflavin, folic acid), sugar,
  partially hydrogenated soybean oil, and/or
  cottonseed oil, high fructose corn syrup, whey
  (milk), eggs, vanilla, natural and artificial
  flavoring) salt, leavening (sodium acid
  pyrophosphate, monocalcium phosphate), lecithin
  (soy), mono-and diglycerides (emulsifier)

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Or

• Use a contains statement
• Ingredients Enriched flour (wheat flour, malt
  flavoring, niacin, reduced iron, thiamin
  mononitrate, riboflavin, folic acid), sugar,
  partially hydrogenated soybean oil, and/or
  cottonseed oil, high fructose corn syrup, whey
  (milk), eggs, vanilla, natural and artificial
  flavoring) salt, leavening (sodium acid
  pyrophosphate, monocalcium phosphate), lecithin
  (soy), mono-and diglycerides (emulsifier)
• Contains Wheat, Milk, Egg, and Soy

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Part Two of FALCPA

• A product may be defined as Gluten Free if all
  of the following conditions are met
• 1. The food does not contain a prohibited grain,
  such as wheat, barley, rye, and triticale.
• 2. The food does not contain an ingredient
  derived from a prohibited grain that has not been
  processed to remove gluten, such as farina,
  hydrolyzed wheat protein, and barley malt
  flavoring.
• 3. If the food contains an ingredient derived
  from a prohibited grain that has been processed
  to remove gluten, such as wheat starch or
  modified food starch, use of that ingredient in
  the food product may not result in the food
  product containing 20 parts per million or more
  gluten.
• 4. The food product contains less than 20 parts
  per million gluten

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READ FOOD LABELS!!!!!!
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Is this Gluten Free?

• Ingredients
• RICE, SUGAR, SALT, MALT FLAVORING, HIGH FRUCTOSE
  CORN SYRUP,
• VITAMINS AND IRON IRON, ASCORBIC ACID (VITAMIN
  C), NIACINAMIDE, PYRIDOXINE HYDROCHLORIDE
  (VITAMIN B6), RIBOFLAVIN (VITAMIN B2), THIAMIN
  HYDROCHLORIDE (VITAMIN B1), VITAMIN A PALMITATE,
  FOLIC ACID, VITAMIN D AND VITAMIN B12.

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How much is too much?
10 mg gluten 250 mg wheat flour (lt 1/8 teaspoon
flour)
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Frequently asked questions about food labels

• Manufactured in a plant that contains wheat
• Voluntary statement, not required by FDA
• Good Manufacturing Practice to avoid
  contamination
• Does not provide enough information to make a
  decision about gluten content/contamination
• Type of product dry vs. wet
• Contact the manufacture directly
• When in doubt, leave it out!

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What can your patient eat?
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Gluten-Free Grains

• Rice
• Corn
• Amaranth
• Buckwheat
• Flax
• Quinoa
• Sorghum
• Teff

• Millet
• Montina
• Arrowroot
• Potato
• Tapioca
• Flours made from nuts, beans and seeds

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Naturally GF Foods

• Fruits and Vegetables
• All fresh produce
• Most canned and frozen (without added sauces)
• Dairy
• Milk
• Cheese
• Yogurt
• Pudding
• Cottage cheese
• read labels carefully

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Naturally GF Foods

• Protein
• Fresh beef, pork , poultry
• Check labels carefully for additives on processed
  meat products such as hot dogs
• Eggs
• Peanut butter
• Canned tuna
• Dried beans, lentils, peas

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More GF Foods

• Cereals and grains
• Rice
• Corn tortillas
• Chex cereals (exception wheat/multigrain)
• Quinoa
• Flours made from
• Amaranth, buckwheat, millet
• Nuts, beans, tapioca
• Teff, flax, montina

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More GF Foods

• Condiments, misc.
• Jams, jellies
• Honey
• Sugar, spices and herbs
• Pickles, olives
• Ketchup, mustard, vinegar (no malt)
• Vegetable oils, margarine, butter
• Fruit juices
• Most chocolate

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Look- a- like foods

• Pasta
• Annies GF rice pasta and cheese
• Chicken nuggets
• Bell Evan
• Ians
• Pizza
• Foods by George
• Whole Foods pizza crust
• Cookies by Kinnikinnick
• Oreos
• Graham cracker
• Animal crackers

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Where to purchase GF foods

• Local grocery store
• Ethnic food section
• Organic or health food section
• Frozen food section
• Local health food store
• Wal-Mart, Costco
• Amazon.com

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• Avoiding Cross Contamination

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Avoiding Cross Contamination

• Label GF Containers and Foods
• Stickers, marker, separate shelf in pantry
• Use Squeeze Bottles
• Mayo, Mustard, Ketchup
• Buy separate containers of condiments
• Peanut Butter, Jam, Butter

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Avoiding Contamination

• Use Separate Items When Needed
• Toaster, Cutting Board, Butter Dish
• Thoroughly Clean Prep Items
• Counter Tops, Pots, Utensils

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Eating Away from Home Restaurants

• Always identify the person needing GF
• Try to avoid peak dining hours
• Do some homework before going to the restaurant
• On-line search for menu
• Call ahead and talk to Chef
• Bring some items with you

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Restaurants

• Beware of Fried Foods Cooked in Undedicated
  Fryers
• Ask Chef/Cook to Use a
• Clean Grill and utensils
• Beware of Buffet Spoons
• Restaurant cards

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Other nutritional concerns

• Infant and children
• Vitamin/mineral deficiencies
• Fiber/constipation
• Whole grains
• Weight loss/gain
• Lactose intolerance
• Diabetes

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Special consideration for children

• Breastfeeding
• Breast feeding may provide a protective role
  against CD.
• Some evidence that introducing gluten gradually
  while breastfeeding reduces risk of CD in early
  childhood and probably also during subsequent
  childhood period.
• Am. J Clin Nutr 200275914-921

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Introduction of Solids

• In infants that were introduced to gluten in the
  first 3 months of life had a 5 fold increase risk
  compared to those that were not introduced until
  4-6 months.
• Introduction of large amounts of gluten
  increases the risk CD.

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UNIVERSITY OF MARYLAND CENTER FOR CELIAC
RESEARCH Are you, your spouse or your child
already diagnosed with Celiac disease? Are you
pregnant or planning to get pregnant?
The risk of Celiac disease in your newborn is increased (8-15) when they have a first-degree relative diagnosed with celiac disease. The Center for Celiac Research is actively recruiting infants for a multicenter project in United States.
For more information, please email
glutenproject_at_peds.umaryland.edu
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Start young

• Role play with children
• Identify gf foods vs. gluten containing food so
  child knows the difference
• Learn to identify the word wheat on a label
  early
• Give ownership of the disease to the child a
  little at a time until they are fully responsible

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Eating at School

• Inform teachers, administration, school nurse,
  room mother
• Provide a list of GF foods
• Provide GF goodies for class parties
• Ask to be notified of any activities
• involving food
• Packed lunch vs school lunch
• USDA regulations 7 CFR Part 15b
  http//www.fns.usda.gov/cnd/Guidance/Special_Dieta
  ry_Needs.pdf

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Schools

• Education of the Handicapped Act, now the
  Individuals with Disabilities Education Act, and
  Americans with Disabilities Act protects rights
  of Americans with disabilities.
• The USDA nondiscrimination regulation(7 CFR 15b)
  as well as the National School Lunch Program and
  School Breakfast Program.
• Accommodating Children with Special Dietary
  Needs in the School Nutrition Programs
• Guidance for School Food Service staff
• www.fns.usda.gov/cnd/Guidance/Special_Dieta
  ry_Needs.pdf

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Common Nutritional Deficiencies
At DX GFD GF Products Long-term GFD
Calorie/protein
Fiber X X X
Iron X X
Calcium X
Vitamin D X
Magnesium X
Zinc
Folate, Niacin, B12, Riboflavin X X X
Thompson, 1999 2000 Hallert, 2002
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Iron

• Iron deficiency anemia is common in newly
  diagnosed celiac disease
• GFD allows gut to heal and increased iron
  absorption from foods and/or supplement
• Emphasize iron rich foods

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B Vitamins

• Folic Acid deficiency can also lead to anemia
• Folic Acid of concern in celiac disease/pregnancy
  planning
• - asparagus, broccoli, spinach, orange juice
• - liver, dried beans, peas and lentils
• - bean flours, enriched cornmeal, enriched
  
• rice, flax
• - peanuts, seeds

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B Vitamins

• B12 deficiency not as common but can also occur
• Concern for Vegans
• Good sources of B12
• -meat, chicken, fish, eggs, milk,
• cheese, yogurt, enriched soy
• beverages

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Calcium Vitamin D

• Low bone mineral density and osteoporosis are
  common in celiac disease
• Calcium Vitamin D are key nutrients for healthy
  bones
• Calcium rich foods
• - milk, yogurt, cheese
• - calcium fortified juice, soy, rice, potato
  nut
• beverages
• - canned salmon or sardines with the bones
• - amaranth, flax, soy, almonds, navy and
  white
• beans

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Constipation

• Initial presentation in some patients
• May develop after going on a GFD
• Increase fluid intake
• Gradually introduce GF dietary fiber sources
• - e.g., fruits, nuts, seeds, legumes, bean
  
• flours, corn bran, rice bran, amaranth,
• flax, quinoa, Indian ricegrass, teff,
• brown rice, wild rice

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Fiber Content of Flour Starches - 1 Cup
Mesquite Flour 46
Montina Flour 36
Flax Seed Meal (Ground Flax) 36
Garbanzo Bean (Chick Pea) Flour 21
Almond Flour (Almond Meal) 15
(Whole wheat flour) Amaranth Flour 14 13
GF Oat Flour (Cream Hill Estates) 12
Garfava Flour 12
Sorghum Flour 9
Teff Flour 9
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Fiber Content of Flour Starches - 1 Cup
Quinoa Flour 7
Brown Rice Flour 7
Arrowroot Starch Flour 4
White Rice Flour (White wheat flour, all purpose) 4 3
Cornstarch 1
Potato Starch 0
Tapioca Starch 0
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Nutritional Concernswhat about whole grains?
Surveys have found that adults with CD on a GFD
consume less than recommended amounts of
Fiber Calcium Iron Folate B vitamins
Buckwheat Brown rice Amaranth Amaranth Quinoa Teff Quinoa Amaranth Teff Millet Amaranth Millet Teff Quinoa
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Weight gain

• Damage in the small intestine prior to diagnosis
  may result in decreased absorption leading to
  weight loss. Once the GFD is started, damage
  repairs and absorption returns to normal, result
  may be (at times, unwanted) weight gain
• Gluten free foods can be higher in calories, fat
  and sugar than gluten counterpart
• Eating no longer painful

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Lactose Intolerance

• Secondary Lactase Deficiency
• Incidence Varies
• Estimates of 30-60
• Depends on length of time from
• development of symptoms until diagnosis
• of CD

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Other Nutritional Concerns

• Increased risk (2-3 times the normal) of certain
  types of cancer, especially gastrointestinal
  malignancies in untreated CD

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Cost comparison of wheat vs. gluten-free product
Product Wheat flour Cost 0.34/lb Product Brown Rice flour Cost 1.89/lb Comparison X 5.5
Wheat bread 1.09/loaf Gluten free bread 6.00/loaf X 5.5
Wheat pasta 0.87/lb Gluten free pasta 3.69/lb X 4.2
Wheat cookies 2.69/lb Gluten free cookies 12.83/lb X 4.8
Wheat crackers 1.63/lb Gluten free crackers 9.12/lb X 5.6
Based on US Department of Labor, Bureau of Labor
Consumer Price Index
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Follow-Up Care
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Elevated tTG

• Take a closer look at diet
• Cross contamination
• Eating away from home
• Communion wafer
• Medications both OTC and RX
• Further restrict the GFD to remove processed
  foods

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HELPFUL TOOLS

• Where to go for
• Teaching tools for patient education
• Useful website
• answers to difficult questions
• Tools to avoid!

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Tool EAL
www.eatright.org
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www.mnprdpg.org

• Medical Nutrition Practice Group
• DIGID Dietitians in Gluten Intolerance Diseases
• GFD handouts
• Fiber
• Dining out
• Resource guide

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www.celiac.nih.gov
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Resources Web Sites

• National Institutes of Health
  http//consensus.nih.gov or 1.800.358.9292
• NIH Consensus Development Conference on Celiac
  Disease 
• National Institutes of Health
• Consensus Development Conference Statement
• June 2830, 2004

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Tool ACDA
American Celiac Disease Alliance
The American Celiac Disease Alliance (ACDA)
realized the need for an advocacy organization
and formed a 501(c)(3) non-profit organization
that represents and advocates on behalf of the
entire celiac community -- patients, physicians,
researchers, and food manufacturers, and other
service providers.
www.americanceliac.org
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www.celiachealth.org
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www.glutenfreediet.ca
 
                                
                                

 
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www.glutenfreediet.ca
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ToolWebsites

• www.glutenfreedietitian.com

Tricia Thompson, MS, RD
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Resources

• Gluten Intolerance Group
• 15110 10 Ave SW
• Suite A
• Seattle, WA 98166
• 206.246.665
• www.gluten.net

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Tools to avoid!

• Advocacy groups that do not have a dietitian on
  staff
• National support groups that do not base
  recommendation on science but member anecdotal
  reports
• Books based on broad belief that wheat is evil
  to all
• Outdated materials (prior to FALCPA)

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Not a good resource
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Got Questions??
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Visit our new website
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Please stay tuned

• University of Maryland
• Center for Celiac Research
• WWW.CELIACCENTER.ORG

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• Thank you!