Gluten-Free Round-Up: Non- responsive celiac disease, oats, probiotics & arsenic

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1 Gluten-Free Round-Up: Non- responsive celiac disease, oats, probiotics & arsenic Melinda Dennis, MS, RDN National Celiac Association Fall Meeting October 29, 2017

2 Disclosures Nutrition Coordinator, Celiac Center, Beth Israel Deaconess Medical Center Founder/Owner: Delete the Wheat, LLC Nutritional Consulting Senior Nutrition Consultant, National Celiac Association Co-investigator, arsenic study [pending] Co-author, article on probiotics [Journal of Academy of Nutrition and Dietetics, 2017]

3 Non- Responsive Celiac Disease (NRCD) NRCD is the blanket term for persistent or recurrent symptoms persistent signs, or laboratory abnormalities typical of celiac disease (CD) despite 6-12 months of dietary gluten avoidance NRCD is common, affecting from 7-30% of patients treated with a gluten-free diet (GFD) for CD.

5 Non-Responsive Celiac Disease Persistent or recurrent signs/symptoms occur in Others included: Peptic ulcer disease (2), Crohn s disease (1), Duodenal adenoca (1), Food allergy (1), Gastroparesis (1) ~30% of patients Leffler et al, CGH 2007; Veeraraghavan ACG 2015

6 In an FDA-regulated Food Product Not Labeled Gluten-Free Avoid the Following: Wheat Rye Barley Malt Oats Brewer s yeast Yeast extract Autolyzed yeast extract If an USDA-regulated food is not labeled gluten-free, also avoid modified food starch, dextrin and starch. If you do not see any of these words on the label of an FDA- or USDA-regulated food, the product is unlikely to include any gluten-containing ingredients. Cross- contamination is still possible (varies by product). Thompson T. ADA Pocket Guide to Gluten-Free Strategies for Clients with Multiple Diet Restriction, 2nd ed. Chicago, IL: Academy of Nutrition and Dietetics; 2016

7 Naturally gluten-free grains, flours, and products made from them may be contaminated with wheat, barley, and/or rye. Choose labeled gluten-free versions of these products. Celiac Disease Celiac Disease Toolkit. American Dietetic Association. Chicago, IL, 2011; Thompson T, Lee AR, Grace T. J Am Diet Assoc. 2010;110:

8 Top 13 Frequently Overlooked Sources of Gluten: Do you..? Periodically check medications and supplements Buy grains labeled gluten-free Understand food labeling laws Check/recheck labels Check gum, mints, candy Modify religious practices Educate family, friends, roommate, guests, schools, coworkers, camps, nursing homes Strategize dining outside the home Intentionally eat gluten Knowingly eat foods that may be contaminated with gluten Eat oats Drink gluten reduced or removed beer Think about sushi, pizza, tortillas, bakeries, hot chocolate mix Others???? This list is not comprehensive.

9 Frequently Overlooked Sources of Gluten or Potential Sources of Gluten Autolyzed yeast extract/yeast extract Beer/Ale/Lager Breading/batter Brewer s yeast Broth/Bouillon Candy Communion wafers Croutons Dressing Drink mixes Flour/grain/cereal products (not labeled gluten-free) French fries Gravy Herbal tea Imitation bacon Imitation seafood Malt/malt extract Marinades This list is not comprehensive.

10 Frequently Overlooked Sources of Gluten or Potential Sources of Gluten Matzo and matzo meal Medications / Supplements Oats (unless labeled gluten free) Panko Pasta Play-Doh Prepared meat, fish, poultry, meat alternatives Processed luncheon/deli meats Rice mixes Salad dressing Sauces Seasonings Soup bases Soy sauce Stuffing Thickeners (Roux) Vegetables in sauce Wine coolers This list is not comprehensive.

11 Oats and Celiac Disease One of the most important whole grain foods, high in fiber, B vitamins, iron and protein (2x that of rice) OATS Many controlled, short and long-term studies of adults and children indicate oats are safe for consumption by the majority of patients with CD and DH 1. Subset of CD patients exists with an exaggerated immune response to oats 2. mmn Cross contamination with gluten containing grains is a large concern. Inclusion of oats in the GFD remains a decades-long controversial topic across the globe. 3 Official recommendations vary among groups. 1. Janatuinen et al, Gut 2002; Peraaho et al, Scand J Gastroenterol 2004; Storsrud et al, Br J Nutr 2003; Storsrud et al, Eur J Clin Nutr 2003; Reunala et al, Gut 1998; Hoffenberg et al, J Pediatr 2000; Hoberg et al, Gut 2004: Kupper C, Gastroenterol 2005; Hardy et al J Autoimmunity 2014; 2. Lundin et al, Gut 2003; Peracho et al, Scand J Gastroenterol, 2004; Arentz-Hansen H. PLoS Med. 2004; 3. Fric et al, Nutr Clin Care, 2011

12 Swedish children with celiac disease comply well with a gluten-free diet, and most include oats without reporting any adverse effects: a long-term follow-up study Oats were included in the diet of 89.4% of the children for a mean of 3.4 years. Most (81.9%) ate purified oats, and 45.3% consumed oats less than once a week. Among those who did not consume oats, only 5.9% refrained because of symptoms. General compliance with the GFD was good. Most patients did not report adverse effects after long-term consumption of oats. Tapsas D, et al. Nutr Res May;34(5):

13 Oats - Did you Know? Until recently, purity protocol GF oats have been the only oats labeled gluten-free and recommended for the GF community. seed field facility Certain GF grain millers have been mechanically sorting oats and selling them to manufacturers (both large and small companies) of GF oats and oat based products since Some GF companies are using a combination of both. It is nearly impossible to distinguish purity protocol oats from mechanically sorted oats Gluten Free Watchdog. Accessed 10/9/17.

14 Kernel-based gluten contamination of gluten-free oatmeal complicates gluten assessment as it causes binary-like test outcomes International Journal of Food Science & Technology Volume 52, Issue 2, pages , 20 OCT out of 57 servings were not in compliance with the FDA GF labeling rule.

15 Gluten Free Watchdog s (GFWD) Stance on Oats Remains supportive of the use of purity protocol oats for persons with CD and gluten-related disorders who tolerate oats. However, in light of the study findings from Quaker we ask all suppliers of purity protocol oats to re-evaluate their testing procedures, including sampling methodology and the amount of testing done on oat groats and finished product. Supportive of the use of gluten-free Quaker Oats by persons with CD and gluten-related disorders. At this time, we are NOT supportive of the use of any other product containing sorted oats, including gluten-free Cheerios, gluten-free Lucky Charms, and gluten-free and certified gluten-free products sourcing oats from Grain Millers or La Crosse Milling. When oats are pulled from the marketplace for testing they should be tested using the Ridascreen Gliadin R5 ELISA Mendez Method using the new protocol recommended by R-Biopharm Accessed Oct 2017

16 GFWD s Purity Protocol List A list of companies following the purity protocol and comments from several companies using mechanically sorted oats

17 What GFWD Recommends The situation with oats continues to evolve. Gluten Free Watchdog s position statement on oats will be updated in the near future. In the meantime, our advice is: Choose your oat products based on your comfort level with regard to the level of information provided to you by manufacturers. Consider the following: Does the manufacturer disclose whether they use purity protocol or sorted oats? Do they disclose their testing protocols? Do they disclose the assay [test] they use to test oats for gluten contamination? If a manufacturer refuses to answer any of these questions or responds by saying the information is proprietary, move on to another company. Gluten Free Watchdog. Accessed 10/9/17.

National Organizations: GF Oats Stances Academy of Nutrition and Dietetics, 2009 Gradually include GF oats uncontaminated with wheat, barley or rye at intake levels of ~50g dry oats/day; generally

18 National Organizations: GF Oats Stances Academy of Nutrition and Dietetics, 2009 Gradually include GF oats uncontaminated with wheat, barley or rye at intake levels of ~50g dry oats/day; generally safe and improves compliance to the GFD. North American Society for the Study of Celiac Disease, 2016 Encourages consistent, stringent, transparent and reliable testing methods to ensure end product <20ppm Discuss GF oats with doctor and dietitian; monitor IgA-tTG before and after introduction. Persistent or recurrent symptoms should prompt an assessment, may include an intestinal biopsy. Exec Summary of Recommendations- Celiac Disease. Inclusion of Gluten Free Oats. AND Evidence Analysis Library, NASSCD Summary Statement on Oats. Accessed Oct 2017.

19 Canada s Stance on Oats Health Canada's Marketing Authorization, 2015 Permits the use of gluten-free claims for gluten-free oats (that do not contain more than 20 ppm of gluten from wheat, rye, barley, or their hybridized strains) and for foods containing these oats as ingredients, under certain conditions. Canadian Celiac Association Professional Advisory Council recommends guidelines for adding pure, uncontaminated oats: Gluten-free claim to be removed from General Mills Cheerios sold in Canada by Jan 1, 2018 (Canadian Food Inspection Agency) Accessed Oct 2017

20 Meta-analysis: Safety of Adding GF Oats Non-contaminated oats tolerated by great majority of adults and children with CD in the studies Data not robust enough for definitive, evidence-based recommendations on the safety of oats for patients with CD Limited confidence due to low quality, small sample size, limited geographic distribution of data Need more well-designed trials evaluating the effect of pure oats in the short/long term, in children/adult patients with CD Information needed re: source of oats, including cultivars, and amount/frequency of oats consumed and compliance to GFD Pinto Sanchez MI, et al. Gastroenterol, 2017

21 Meta-analysis, cont d Purity level depends on country of origin and local regulations Oat products need to be subjected to clinical studies. Oats used in GF foods should be produced/processed under protocols that ensure purity during all phases of production with reliable testing measures that consistently guarantee <20 ppm of gluten. We endorse the recommendations by NASSCD to support the use of pure oats in CD and monitor levels of IgA-tTG before and after their introduction into the diet. Persistent or recurrent symptoms should prompt an assessment that may include an intestinal biopsy. Pinto Sanchez MI, et al. Gastroenterol, 2017

BIDMC Celiac Center Oats Stance 2017 More comfortable with purity protocol process at this time Some companies may be doing a good job at consistently providing mechanically sorted GF oats.

22 BIDMC Celiac Center Oats Stance 2017 More comfortable with purity protocol process at this time Some companies may be doing a good job at consistently providing mechanically sorted GF oats. Investigate how all GF oats are grown, processed, and tested to confirm their GF status. Read on Glutenfreewatchdog.org about mechanically sorted versus purity protocol oats to find your own comfort level. Talk to your celiac health care team to help you make an informed decision.

23 BIDMC Celiac Center Oats Stance, 2017 Cross contamination is a concern regardless of the type of oat that is eaten purity protocol or mechanically sorted. More North American data needed on oat safety and contamination We call on ALL suppliers and manufacturers to offer consistently safe oats and oat-based products that are proven to be gluten-free through rigorous and precise testing, be transparent about their process, and provide evidence of consistent favorable results <20ppm.

24 Adding GF Oats: BIDMC Celiac Center Discuss the decision to introduce ANY TYPE of GF oats into your diet with your doctor. Newly diagnosed patients: Avoid oats until CD is well controlled (complete resolution of symptoms and normal tissue transglutaminase level [IgAtTG]). Under physician/dietitian guidance, the gradual addition of uncontaminated labeled gluten-free oats up to 50 grams/day (a little more than ½ cup dry rolled oats or ¼ cup steel cut oats) may be attempted. Drink adequate water: oats are high in fiber. Dennis M, et al. Celiac Disease Toolkit. Chicago, IL: Academy of Nutrition and Dietetics, 2011

25 Adding GF Oats: BIDMC Celiac Center Follow-up with your gastroenterologist within 3-6 months after introducing GF oats. Symptoms from eating gluten-free oats may be due to 1 or more factors: Intolerance to the increase in fiber Food intolerances (oats themselves or fructose, other FODMAPs, etc. as ingredients in oat-based products) Gluten contamination Immune response (rare) to oat protein similar to that of gluten Diligently maintain routine follow-ups with your medical team. Kupper C. Gastroenterol, 2005; Fric et al, Nutr Clin Care, 2005

26 What to do if. Drawing: Abby Bradley, age 11 You have persistent symptoms and/or an elevated anti-ttg antibody level Avoid all GF oats/oat products until these symptoms and/or level have substantially improved; follow up with your doctor. You develop new symptoms that seem to correlate with GF oat ingestion? Follow up with an expert celiac physician to determine whether gluten exposure or an alternative diagnosis can account for these symptoms. You want to issue a complaint related to potential gluten contamination? Contact MedWatch, the FDA s Adverse Event Reporting System by phone: (choose option #4 to speak to a person) or online: eporting.home. Keep the product s box or package to report the batch/lot number to the representative. NASSCD Summary Statement on Oats (1).pdf. Accessed Oct 2017.

Bacteria: You are what eats what you eat Microbiome bacteria on body surfaces Most live in your colon or on your skin 50% of stool weight is bacteria ~Same number of bacteria cells

27 Bacteria: You are what eats what you eat Microbiome bacteria on body surfaces Most live in your colon or on your skin 50% of stool weight is bacteria ~Same number of bacteria cells as human cells Bacteria: 3.3 million genes: Humans 23,000 genes 1 Adapted with permission: Jocelyn Silvester MD, PhD 1. Qin, J. Nature 464, (2010) Drawing: Abby Bradley, age 11

Diversity is the spice of microbial life 20,000 species of bacteria (at least) More healthy people have more biodiversity Community population is not static Some bacteria more common in healthy

28 Diversity is the spice of microbial life 20,000 species of bacteria (at least) More healthy people have more biodiversity Community population is not static Some bacteria more common in healthy people than others There is no healthy microbiome Bacteria s Role: Make Vitamin K Ferment fiber to produce short chain fatty acids Communicate with immune and nervous system Adapted with permission: Jocelyn Silvester MD, PhD Drawing: Abby Bradley, age 11

Probiotics Live microorganisms that, when administered in adequate amounts, confer a health benefit on the host 1 No evidence for specific use of probiotics in CD Enthusiasm exceeds research

29 Probiotics Live microorganisms that, when administered in adequate amounts, confer a health benefit on the host 1 No evidence for specific use of probiotics in CD Enthusiasm exceeds research Difficult to guide use, selection, length of time Clinical decision: case by case basis for symptom relief Trial, as tolerated, and monitor Encourage prebiotic and probiotic-rich FOOD sources on a regular basis, as tolerated 1. Sanders ME. Probiotics: definition, sources, selection, and uses. Clinical Infectious Diseases, 2008

30 Gluten in growth media? An abstract presented at Digestive Disease Week in 2014 raised concerns about growth media in probiotics. This study assessed the gluten content of probiotics: 15 were labeled as gluten free 2 of the 15 products contained >20ppm* of gluten (liquid chromatography mass spectrometry) *FDA-regulated foods, including supplements, must contain <20 ppm gluten to be labeled GF. Nazareth et al. Widespread contamination of probiotics with gluten detected by liquid chromatography-mass spectrometry [abstr]. Proceedings of Digestive Disease Week Presentation 108. Gastroenterol. 2015;148 (4 suppl 1):S-714.

31 Thomson T, Dennis M, Emerson L. J Acad Nutr Diet Sep 1.

Probiotics, Digestive Enzymes & Gluten Bacteria, mold, yeast and enzymes produced by bacteria are used in a variety of products, including probiotics and digestive enzymes.

32 Probiotics, Digestive Enzymes & Gluten Bacteria, mold, yeast and enzymes produced by bacteria are used in a variety of products, including probiotics and digestive enzymes. These microorganisms may be grown on media that may include ingredients derived from wheat, barley, and rye. Although the bacterial or mold strains present in probiotics enzymes, supplements containing probiotics or enzymes, and some fermented foods is declared, no information on the growth media is typically provided. Probiotic Thompson T, et al. J Acad Nutr Diet, 2017

33 Probiotics, Digestive Enzymes & Gluten Bacteria, mold, yeast and enzymes produced by bacteria are used in a variety of products, including probiotics and digestive enzymes. These microorganisms may be grown on media that may include ingredients derived from wheat, barley, and rye. Although the bacterial or mold strains present in probiotics enzymes, supplements containing probiotics or enzymes, and some fermented foods is declared, no information on the growth media is typically provided. Thompson T, et al. J Acad Nutr Diet, 2017

34 Thompson T, et al. J Acad Nutr Diet. 2017

35 To Suppliers and Manufacturers Disclose the components of growth media to manufacturers. Be aware of the potential for gluten protein fragments to remain in bacteria grown on gluten-containing media Deactivate and test with a competitive ELISA. More research needed. Thompson et al. JAND Sept 2017

36 To the FDA How ARE growth media for bacteria (and other microorganisms) defined in labeling? If wheat, barley, or rye are used as growth media, can they be labeled as gluten free? If the use of gluten containing growth media is allowed in a gluten-free product, how should products containing bacteria and bacterial enzymes be tested to ensure safety? Thompson et al. JAND Sept 2017

37 To Consumers If you use probiotics, select products labeled gluten free. Concerned? Contact manufacturers and ask questions, such as: Are any of the bacteria or bacterial enzymes used in your product grown on gluten-containing growth media? If so, do you test bacterial strains and final products for gluten contamination using a competitive ELISA? Until more is known about residual gluten from growth media, erring on the side of caution and avoiding products containing ingredients grown on gluten-containing growth media may be best if the product is not tested for residual gluten using a competitive ELISA. Thompson et al. JAND Sept 2017

Arsenic and the GFD An odorless, tasteless element found in soil, water, and air Organic and Inorganic (carcinogenic) Linked to many health problems No known safe amount of arsenic Higher levels in

38 Arsenic and the GFD An odorless, tasteless element found in soil, water, and air Organic and Inorganic (carcinogenic) Linked to many health problems No known safe amount of arsenic Higher levels in different parts of U.S. Rice is grown under flooded conditions and will absorb arsenic from both the soil and the water. Potentially higher risk for people who regularly eat a lot of rice, especially children More studies needed

39 Take Action Against Arsenic How much arsenic is in your tap water? How much is in your bottled water? Test your soil. Stop smoking. Eat rice with lower levels of arsenic. Soak and rinse raw rice (30% reduction in arsenic) Cook 6 cups water:1 cup rice. Discard some of the water during cooking. Be sure the water you use for cooking rice does not contain high arsenic, since rice absorbs water as it cooks. You should not use water with more than 10 parts per billion of arsenic for cooking

40 There s more than 1 kind of rice Some types of rice have less arsenic than others. Quick-cooking rice Instant rice Sushi rice grown in the U.S. White Basmati rice from India, Pakistan, or California (1/2 inorganic arsenic of most other types of rice) White rice has ~80% less inorganic arsenic than brown rice.

41 Pass me the alternative GF grains! Reduce the amount of rice and rice products you eat. Substitute rice by ROTATING in other gluten-free pseudograins. Amaranth, millet, buckwheat, teff, sorghum and quinoa AND drink more water. These pseudo-grains are high in fiber and will offer you many important nutrients: Vitamins Minerals More nutritious than rice Be sure they are labeled gluten-free to avoid cross contamination with gluten containing grains during harvest, transport, and production.

42 A B Leslie Cerier D E Amaranth Buckwheat Millet Quinoa Sorghum Teff C Kristine Kidd F Kristine Kidd Leslie Cerier

43 Nutrient Nutrient Content Content of Whole of GF Whole Grains: GF Fiber, Folate, Calcium (1 cup uncooked) Iron Flours Fiber (gm) Folate (mcg) Calcium (mg) Iron (mg) Amaranth Buckwheat groats Millet Quinoa Sorghum Teff Wheat flour, whole-grain Wheat flour, white enriched 1 cup, uncooked ml USDA National Nutrient Database,

44 Nutrient Content of GF Grains - B Vitamins Flours Thiamine (B 1 ) (mg) Riboflavin (B 2 ) (mg) Niacin (B 3 ) (mg) B 6 (mg) Amaranth Buckwheat groats Millet Quinoa Sorghum Teff Wheat flour, whole-grain Wheat flour, white enriched 1 cup, uncooked USDA National Nutrient Database,

45 This list is not comprehensive.

46 This list is not comprehensive.

47 Thank you to: Tracy Punshon, Ph.D., Dartmouth researcher Jocelyn Silvester, MD, PhD Tricia Thompson, MS, RDN

CURRICULUM VITAE. Tricia Thompson, MS, RD. ( ) Boston, Massachusetts M.S. in Nutrition, 1991

CURRICULUM VITAE. Tricia Thompson, MS, RD. ( ) Boston, Massachusetts M.S. in Nutrition, 1991 CURRICULUM VITAE Tricia Thompson, MS, RD Contact Education (e-mail) tricia_s_thompson@hotmail.com Tufts University Boston, Massachusetts M.S. in Nutrition, 1991 Professional Experience Francis Stern Nutrition