The Role of Fodmaps in Gluten-‐Related Disorders

Is Gluten Really the Problem? The Role of FODMAPs in Gluten-Related Disorders with Dr. Sue Shepherd, Creator of the Low-FODMAP Diet March 26, 2014

facebook.com/nfceliacawareness NATIONAL FOUNDATION FOR CELIAC AWARENESS @CeliacAwareness www.CeliacCentral.org www.CeliacCentral.org/webinars ©2014 All rights reserved. 1 The Relaonship Between Food and Health: A $10,000 Challenge Grant • NFCA invites you to join us in raising dollars to iniate an overarching plan to explore the relaonship between the food we eat and your health

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① Deﬁne “FODMAPs” – what does this acronym stand for anyway? ② Discuss the history of the low-FODMAP diet and its beneﬁts for people with IBS ③ Understand how FODMAPs can trigger IBS-like symptoms ④ Idenfy foods that contain high and low amounts of FODMAPs ⑤ Understand why the low FODMAP diet may be helpful for some people with celiac disease ⑥ Review recent research about the link between the low-FODMAP diet and gluten-related disorders

• Bachelor of Sciences in Health Promoon

• Master’s in Nutrion and Dietecs

• Founded Shepherd Works, a dietec pracce outside of Melbourne, Australia

• Representaons and aﬃliaons include: • The University of Queensland • La Trobe University • Coeliac Research Fund • Gastroenterological Society of Australia • The FODMAP Friendly Food Program • Rome Foundaon • Coeliac Australia • 100 Women of Inﬂuence •Therapeuc Guidelines

facebook.com/nfceliacawareness NATIONAL FOUNDATION FOR CELIAC AWARENESS @CeliacAwareness www.CeliacCentral.org www.CeliacCentral.org/webinars ©2014 All rights reserved. 5 Disclosures • Author of cookbooks for celiac disease and IBS including: – Irresisbles for the Irritable – Two Irresisble for the Irritable – Gluten Free Cooking – The Gluten Free Kitchen – Allergy Free Cooking – Food Intolerance Management Plan – Gluten and Wheat Free Diabetes – Low FODMAP Recipes • Co-author of the dietec resource manual Gastrointesnal Nutrion • Consultant to Gluten-Free Food Show in Melbourne, Sydney, Brisbane, and Launceston • Consultant to food companies for development of specialty food products • Co-ownership/Co-Director of The FODMAP Friendly Food Program and its trademark

• Complex names for a collecon of molecules found in food • Poorly absorbed short-chain carbohydrates

Fermentable Oligosaccharides Disaccharide Monosaccharide And Polyols

• Fermentable: – Meaning they can be broken down by bacteria in the bowel

• Oligosaccharides: – “Oligo” means many – “Saccharide” means sugar – Examples include fructans and galactans (GOS)

• Disaccharide: – Includes lactose

• Monosaccharide: – “Mono” means single – “Saccharide” means sugar – Contains fructose in excess of glucose – Fructose is only a potenal FODMAP if it is present in foods in amounts greater than glucose

• Polyols: – Sorbitol – Mannitol – Xylitol – Isomalt

• Why do so many paents • Received referral for paent without celiac disease experience with IBS symptoms and a posive IBS-like symptoms when eang fructose breath test Shepherd wheat? • “Fructose malabsorpon diet” • Is there another trigger? Works • No dietary guidelines! • Idenﬁed fructans 1999 • Idenﬁed excess fructose

• Already aware of lactose intolerance • Well known that beans, e.g. galacto-oligosaccharides, can trigger symptoms • Packaged food products containing polyols already include warning statements

• Logical approach to explain how the FODMAPs sugars could cause symptoms • Created an “experimental diet” of foods to include and avoid – first me these sugars were idenfied as a dietary management for IBS-like symptoms • Taught diet to paents for four years in private pracce • Began well-designed clinical trial to confirm diet’s posive impact as part of PhD research • The low-FODMAP diet is now scienfically proven

• FODMAPs trigger symptoms of IBS (Shepherd & Gibson 2008)

• It is well-understood how FODMAPs trigger symptoms (Barre et al, 2009; Ong et al, 2010)

• The low-FODMAP diet provides symptom relief in ~75% of IBS paents (Shepherd & Gibson 2006) • The low-FODMAP diet is sustainable – paents have connued the diet since it was developed

• The diet has seen success internaonally (Staudacher et al, 2011) • The low-FODMAP diet is also eﬀecve for: • Those with celiac disease who have ongoing symptoms • Non-celiac gluten sensivity

facebook.com/nfceliacawareness NATIONAL FOUNDATION FOR CELIAC AWARENESS @CeliacAwareness www.CeliacCentral.org ©2014 All rights reserved. 17 www.CeliacCentral.org/webinars Adapted from Barrett, et al 2009 How do FODMAPs trigger symptoms of IBS?

Increased water delivery

facebook.com/nfceliacawareness NATIONAL FOUNDATION FOR CELIAC AWARENESS @CeliacAwareness www.CeliacCentral.org ©2014 All rights reserved. 18 www.CeliacCentral.org/webinars Adapted from Barrett, et al 2009 How do FODMAPs trigger symptoms of IBS?

Increased gas producon

facebook.com/nfceliacawareness NATIONAL FOUNDATION FOR CELIAC AWARENESS @CeliacAwareness www.CeliacCentral.org ©2014 All rights reserved. 19 www.CeliacCentral.org/webinars Adapted from Barrett, et al 2009 How do FODMAPs trigger symptoms of IBS? Bowel distension and altered bowel movements

Abdominal pain, distension, excess gas, diarrhea, and/or conspaon

facebook.com/nfceliacawareness NATIONAL FOUNDATION FOR CELIAC AWARENESS @CeliacAwareness www.CeliacCentral.org ©2014 All rights reserved. 20 www.CeliacCentral.org/webinars Adapted from Barrett, et al 2009 Tesng for Fructose Malabsorpon

Hydrogen Breath Test: – Tests ability to digest fructose – Baseline breath (hydrogen and methane) – Measurements every 30 minutes over 2.5 hours – Watch for strong rise in either gas – Nothing by mouth midnight before the test

Two phases: ① The eliminaon (strict) phase ② The reintroducon (liberalisaon) phase

facebook.com/nfceliacawareness NATIONAL FOUNDATION FOR CELIAC AWARENESS @CeliacAwareness www.CeliacCentral.org www.CeliacCentral.org/webinars ©2014 All rights reserved. 22 Phase 1: The Eliminaon (Strict) Phase • Idenfy which FODMAPs are likely triggering symptoms – Use breath test results if available • Important -- Implement the low FODMAP diet with guidance/support from skilled diean • Avoid all foods known to be high in each problem FODMAP for 6-8 weeks • Symptom improvement should be noced in 2 weeks, with improvement connuing in following weeks • Meet with your diean:

– Assess ongoing symptom response during phase 1 – Explore possibility of reintroducing some FODMAP-containing foods

Excess Polyols Lactose Fructans Galacto- Fructose oligosaccharides • Apples • Apple • Milk • Custard apple • Legumes • Pears • Apricot • Ice cream • Persimmon • Lenls • Mangoes • Avocado • Custard • Nectarine • Chickpeas • Nashi fruit • Blackberry • Yoghurt • Watermelon • Boysenberry • Cherry • Ricoa cheese • Globe archoke • Watermelon • Nashi fruit • Cream cheese • Asparagus • Cherries • Peach • Coage cheese • Garlic • Asparagus • Pear • Legumes, lenls, • Jerusalem • Plum • Leek, onion, archokes • Prune shallot, spring onion • Sugar snap peas • Watermelon (white part) • Honey, high • Cauliﬂower • Cashew, pistachio fructose corn • Mushrooms • Wheat, rye, barley syrup, agave (in large amounts)

Fruits* Vegetables Cereals and Milk Products Other Foods Grains • Banana • Potato • Rice • Lactose free milk •Sugar, maple syrup, • Kiwifruit • Carrot • Cornﬂour • Lactose free golden syrup • Strawberry • Spinach • Quinoa yoghurt • Small handful of • Blueberry • Capsicum • Millet • Fermented nuts and seeds (all • Orange • Eggplant • Sorghum cheeses (block except cashews and • Mandarin • Zucchini • Oats cheese, e.g. pistachios) • Lemon, lime • Leuce • Polenta parmesan, cheddar, • Unprocessed • Honeydew • Tomato gouda, edam, brie, meat, ﬁsh, chicken, melon • Cucumber camembert, fea, eggs • Grapes • Turnip mozarella • Garlic-infused • Pineapple • Swede • Small amounts of olive oil • Passionfruit • Green beans cream and so • Parsnip cheeses *Limit serving size. • Squash

• Expand the diet so that you are not unnecessarily restricng foods – You should be able to eat a greater variety of foods while sll maintaining symptom control

• An important phase because FODMAPs are prebiocs, e.g. good for bowel health – FODMAPs in the diet is encouraged as tolerated

• If symptoms are well managed in Phase 1, your diean can instruct how to reintroduce FODMAPs in a set order to help work out the TYPE and AMOUNT of FODMAPs you may be able to tolerate: – Foods that contain only one type of FODMAP are tried one at a me so results are not confusing – An excing process because it’s possible that more foods were avoided in Phase 1 than necessary to achieve symptom relief

• Asthma and diabetes are two common condions that can occur in the same person – celiac disease and IBS can too • Symptoms aer eang gluten and FODMAPs can be the same in some people

• Beneﬁts only those with celiac disease who have ongoing symptoms despite strictly following the gluten-free diet:

• A skilled diean should closely assess your diet for accidental gluten exposure before assuming that FODMAPs are triggering symptoms

• FODMAPs trigger symptoms in only some individuals

• There is no need to restrict FODMAPs if you have celiac disease and no longer have symptoms when following your gluten-free diet strictly

• Celiac Disease • FODMAPs – Gluten (protein) must be – Fructans (carbohydrates) need strictly avoided for life to be limited

• Gluten is present in: • Fructans are present in: – Wheat – Wheat – Barley – Barley – Rye – Rye – Oats (Australia) – Other foods as well

facebook.com/nfceliacawareness NATIONAL FOUNDATION FOR CELIAC AWARENESS @CeliacAwareness www.CeliacCentral.org www.CeliacCentral.org/webinars ©2014 All rights reserved. 30 Fructose Malabsorpon vs. Hereditary Fructose Intolerance • Important! Fructose malabsorpon and hereditary fructose intolerance are not the same thing • Fructose malabsorpon: – Can be diagnosed at any age – Is not life threatening – Fructose does not need to be strictly avoided – Glucose “piggy backs” fructose across the intesne • Hereditary Intolerance: – Usually diagnosed in children – Is life threatening – Fructose needs to be strictly avoided

• Symptoms are due to dose response • All paents with IBS have diﬀerent FODMAP tolerance levels • Not every person has a problem with every type of FODMAP • The liberalisaon phase in consultaon with a diean is important and should be encouraged

• “NCGS” • Ongoing debate among celiac disease experts, with esmates ranging from 0.5% - 20% of the populaon 1, 2 • Paents present with symptoms including: 1, 3 − Abdominal bloang and pain − Excess gas − Altered bowel habits − “Foggy head” − Headache − Fague − Joint and muscle pain − Lowered mood

1 Ludvigsson, et al 2012 2. Vanga & Leﬄer 2013 3. Catassi et al. 2013

• Important – there are not any tests currently available for NCGS 1, 2 • NCGS is a diagnosis of exclusion 1, 2 • Rule out: − Celiac disease, wheat allergy and other likely reasons for symptoms • Observe if the paent’s symptoms: − Improve when gluten is removed from the diet − Worsen when gluten is consumed in the diet

1 Ludvigsson, et al Gut 2012 2. Catassi et al. 2013

• Two part study

• Part A: 37 paents with NCGS were recruited for a 9 week study

− Celiac disease was ruled out

• Study parcipants were provided with every meal throughout the enre study

Biesiekierski JR, et al 2013

• Study involved everyone following a low-FODMAP diet for the first 2 weeks and then parcipants were divided into three groups • Each person took one of the following treatments: − High gluten muffin (no added whey powder) − Low gluten muffin ( plus some added whey powder) − Placebo (only added whey powder, no gluten) • Measured symptoms at beginning, aer 2 weeks on the low-FODMAP diet and then daily during each of the following treatment • Parcipants had a break between each treatment to ensure they returned to minimal symptoms

Biesiekierski JR, et al 2013

− All study parcipants found their symptoms improved on the low-FODMAP diet

• Post-treatment with high gluten, low gluten and placebo:

− Same theme occurred for individual symptoms of pain, bloang, nausea, redness, wind (gas) and stool sasfacon

− In all parcipants, symptoms worsened to a similar degree when their diets included gluten or whey protein

− No paern existed – every treatment triggered symptoms!

Biesiekierski JR, et al 2013

• Although one of the treatments (the control) had no gluten, it did sll have a protein present – whey • Perhaps whey can trigger symptoms, too – aer all, the results did not show any paern • Each treatment had at least gluten OR whey present • A new study was designed to look at the eﬀect of gluten or whey on their own

Biesiekierski JR, et al 2013

• Researchers designed a new phase of the study to look at effect of gluten or whey on their own • As the low-FODMAP diet was effecve in reducing symptoms in all parcipants, this should be provided to all parcipants throughout the study again • Part B: − 22 study parcipants − A placebo was also used – this me the placebo had no addive at all − Low FODMAP, Dairy Free, Low Food Chemical as the baseline diet for 3 days • Three different study groups for three days each: − No gluten or whey − Whey alone − Gluten alone − Parcipants had a break between each treatment to ensure they returned to minimal symptoms

Biesiekierski JR, et al 2013

• Both Parts A and B of this study showed no diﬀerence in symptom scores between gluten alone, whey alone and/or placebo treatment arms • All treatment groups experienced an increase in symptoms during each of the treatment arms － Overall symptoms, bloang, sasfacon with stool consistency, wind (gas), pain, redness and nausea

facebook.com/nfceliacawareness NATIONAL FOUNDATION FOR CELIAC AWARENESS @CeliacAwareness www.CeliacCentral.org ©2014 All rights reserved. 40 www.CeliacCentral.org/webinars Biesiekierski JR, et al 2013 Conclusions • In people with self-reported NCGS, gluten does not appear to be a trigger for gastrointesnal symptoms aer FODMAP intake is reduced • This raises possibilies such as: − NCGS may not be a discrete enty − NCGS may exist, however may be confounded by a low FODMAP diet via an unknown mechanism • Where do we go from here? − Large, high-quality clinical trials are needed to invesgate the role of diﬀerent diets in people with GI symptoms − May assist in beer understanding NCGS symptoms and idenfying a biomarker that can be used to test for NCGS

Biesiekierski JR, et al 2013 Vanga R & Leﬄer, D 2013

• 2014 Australian study invesgang the proﬁle of people with self-reported NCGS

• 147 study parcipants who believed they had NCGS

• Completed a quesonnaire about symptoms, diet and experience with any celiac disease tests/diagnosis

Biesiekierski, Newnham, Shepherd, et al in press 2014

• Only 28% of those surveyed actually fulﬁlled the criteria to diagnose NCGS • 62% did not have celiac disease properly excluded • 24% had uncontrolled symptoms even though they were on a strict gluten-free diet • 30% removed gluten from their diet before having celiac disease tesng • Important take home messages: − Take into account other common dietary , e.g. FODMAPs, when designing studies − Ensure study criteria are fulﬁlled before enrolling parcipants so that results are useful

Biesiekierski, Newnham, Shepherd, et al in press 2014

• In gluten-related disorders, the low-FODMAP diet should be considered when: − You have been diagnosed with celiac disease and have ongoing symptoms despite strictly following the gluten-free diet − You have been diagnosed with or suspect you have non-celiac gluten sensivity • Don’t self diagnose! – Always discuss your symptoms with a skilled doctor – Stay on a regular, gluten-containing diet before being tested for celiac disease – Consult with a diean for expert dietary advice • Maintain your connecon with NFCA – your gateway to informaon updates relevant to you!

• Available now via amazon.com • Available now via shepherdworks.com.au • U.S. edion coming June 25, 2014

• The new “FODMAP Friendly” logo appearing on food products:

• Inially in Australia • Will move to the U.S. in the future

• www.fodmap.com

facebook.com/nfceliacawareness NATIONAL FOUNDATION FOR CELIAC AWARENESS @CeliacAwareness www.CeliacCentral.org www.CeliacCentral.org/webinars ©2014 All rights reserved. 46 Next Steps: Facebook Chat Tomorrow March 27th • “Hot Topic”: – What did you learn tonight? – What do you want to learn more about? – How did the webinar help you?

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facebook.com/nfceliacawareness NATIONAL FOUNDATION FOR CELIAC AWARENESS @CeliacAwareness www.CeliacCentral.org www.CeliacCentral.org/webinars ©2014 All rights reserved. 49 Thank You Lucy’s! • 5 webinar parcipants will each receive a Lucy’s gi basket with assorted products and coupons • Your own basket of treats – assorted delicious gluten-free, vegan cookies! • www.drlucys.com

• April 3, 2014 at 8pm Eastern - “Celiac Disease in Families: How Genecs Determine Your Risk” with Stephanie Winheld, MS, LCGC, Licensed Cerfied Genec Counselor, Jefferson Kimmel Cancer Center Network and David M. Kastenberg, MD, Associate Professor and University Physician, Thomas Jefferson University Hospital

• May 15, 2014 at 2pm Eastern - “Best Pracces in Celiac Disease Diagnosis” with Dr. Ritu Verma, Director, Center for Celiac Disease at CHOP and Dr. Dan Leﬄer, Director of Clinical Research for Celiac Center at BIDMC • July 15, 2014 at 2:30pm Eastern – “Environmental Based Theory of Increased Wheat Consumpon & Excess Gluten in Food Supply” with Julie Miller Jones, PhD, CNS, LN, Disnguished Scholar and Professor Emerita, Foods and Nutrion, St. Catherine University • TBD – “Understanding the FDA’s Gluten-Free Labeling Part 2: A Focus on Compliance”

• Connect with NFCA:

• Dr. Sue Shepherd: www.shepherdworks.com.au