Dealing Your Clients a Winning Hand.. Know the Facts About Celiac Disease & the Gluten Free Diet

1. Dealing Your Clients a Winning Hand.. Know the Facts About Celiac Disease & the Gluten Free Diet

2. Pam Cureton, RD, LDN • Center for Celiac Research • University of Maryland School of Medicine • 22 S. Penn Street • Baltimore, MD 21201 • Phone: 410-706-4140 • pcureton@peds.umaryland.edu • www.celiaccenter.org

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

4. + Pathogenesis =

5. Normal small bowel Celiac disease Gluten Gluten-free diet

6. 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).

7. 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 Getting the rightdiagnosis

8. Diarrhea Constipation Gas, bloating Abdominal pain Nausea & Vomiting Reflux Symptoms:Intestinal Adult Onset

9. Anemia Bone and joint pain Osteoporosis Liver and biliary tract disease Pancreatitis Arthritis Hyposplenism Kidney stones Mouth ulcers Symptoms:Extra-Intestinal Adult Onset

10. Neurological problems Ataxia Peripheral neuropathy Epilepsy Psychiatric Disorders Women Sub-In-fertility Miscarriages Low birth weight babies Extra-Intestinal Adult Onset

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

12. No symptoms but positive blood test and positive biopsies Associated Autoimmune disorders: Type 1 diabetes Rheumatoid Arthritis Thyroid disease Other Down’s Syndrome, IBD, Crohns Disease Silent Celiac Disease

13. Blood test are positive but normal biopsy. No symptoms but may develop symptoms and or intestinal damage later. Latent Celiac Disease

14. Failure to Thrive Short Stature Diarrhea/constipation Delayed puberty Difficulty in learning Dental enamel defects Symptoms in Children

17. Serological testing

18. 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 Serological Screening

19. 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 Genetic testing?

20. General population of the US HLA-DQ2 or HLA-DQ8 Individuals with Celiac Disease

21. Gold Standard: EGD Normal Partial atrophy I Partial atrophy II Partial atrophy III Subtotal atrophy Total atrophy

22. 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. Correct Diagnosis? Never start the GFD before proper testing is completed!

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

24. 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. 2006;332(7535):213-4. Stool testing

25. 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” Allergy testing

26. 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. Intolerance/sensitivity

27. Improvement of symptoms while on a GFD

28. 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 Serology back to normal

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

30. 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 Challenge?

31. 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 Gluten challenge

32. Treatment of celiac disease: The Gluten Free Diet

33. 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 Bulgur Couscous Durum Triticale Filler

34. What about oats?

35. Thompson T, NEJM;2004

36. 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 Bob’s Red Mill Oats: If you must…

37. Broth Candy Communion wafers Imitation bacon Imitation seafood Marinades Processed meats Roux Sauces Self-basting turkey Soup base Soy sauce Thickeners Frequently Overlooked Foods That May Contain Gluten

38. 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” Labeling101

39. 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) Example of FALCPA

40. 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 Page 40

41. 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 Part Two of FALCPA

42. READ FOOD LABELS!!!!!!

43. 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. Is this Gluten Free?

44. How much is too much? 10 mg gluten~ 250 mg wheat flour (< 1/8 teaspoon flour)

45. 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! Page 45

46. What can your patient eat?

47. Rice Corn Amaranth Buckwheat Flax Quinoa Sorghum Teff Millet Montina Arrowroot Potato Tapioca Flours made from nuts, beans and seeds Gluten-Free Grains

48. Fruits and Vegetables All fresh produce Most canned and frozen (without added sauces) Dairy Milk Cheese Yogurt* Pudding* Cottage cheese *read labels carefully Naturally GF Foods

49. 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 Naturally GF Foods

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