Gluten-Free Diet

Quality of Life: Issues and Solutions

Anne Roland Lee, EdD, RD, LD

Director of Nutritional Services

Dr. Schar USA, Inc.

Overview

• The changing gluten-free market

• Impact of GFD on quality of life

• Solutions and Practical Tips

Slide 2

The Gluten-free category

today

Slide 3

Focus on GF Diet for:

Weight loss

Healthy choice

Clean Eating

Current Epidemiology of Celiac Disease in US

Rubio-Tapia et al. AJG 2012

On Gluten Free

Diet ~2 million

Seroprevalence

of celiac disease

~2 million

Diagnosed with celiac disease

and on a gluten free diet

~300,000

Evolving uses of the gluten-free diet – beyond Celiac Disease

• Gluten sensitivity, IBS,

Crohns

Estimated 6% of U.S. pop

Intolerance to gluten treated

through avoiding gluten in diet

Only treatment is the gluten-

free diet

• Wheat allergies

Estimated 5-7% of U.S. pop

Only treatment is avoidance of

wheat

Can be transient or seasonal

Treatment is diet

• Autism Spectrum Disorder &

Attention Deficit Syndromes

Estimated 2-5% of U.S. pop

Follow a recommended

gluten/casein-free diet

Very active and vocal

national/local support groups

Treatment : OT, PT and diet

• MS, Arthritis, Migraines

Estimated 2% of U.S. pop

Gluten-free diet is thought to

reduce inflammation and pain

Used in conjunction with other

therapies and medications

• Up to 43M people have an interest in gluten-free foods

Slide 5

Gluten-Free Category Growth

Slide 6

0

2

4

6

8

10

12

14

2011 2012 2013

Core GF Category

Total GF Category

2013 Sales in billions of dollars

Core category $ 1.5

Total category $13.6

0%

5%

10%

15%

20%

25%

30%

2012 2013

Total Category

Core Category

Number of products

Core category ^ 29.4%

Total category ^ 16.1%

Source: SPINS 2013 data

Gluten-free category today

Slide 7

• Category growth and sales continue to rise

• Category evolution – Variety

Original assortment primarily mixes, frozen breads, cookies

600 items in 2007

By 2017 – sales will exceed $14 billion

Expected to continue to grow by 10 % through 2019

• Product quality

Significant improvement in taste, texture, nutritional value

More products comparable to mainstream products

• Manufacturers

Original dedicated companies & small regional packers, bakeries etc.

Natural and Organic add GF to portfolio

Large CPG Companies i.e. General Mills, Ralston, NBC, Anheuser-Busch

Gluten-free category today – Consumer behavior

• General Consumer Trends

18 % of general consumers purchased a GF product in the past 3

months ( ^ of 3% vs. 2010)

65 % believe Gluten-Free is healthier

28 % of adults report avoiding gluten

24 % believe Gluten-Free products are higher quality

• Celiac and Gluten Sensitive Consumer

55 % spend over 30% of their total grocery budget

on Gluten Free

68 % shop 3 or more stores to find

Gluten-Free products

71 % want to do GF shopping in

their regular grocery store

Slide 8

GFD and Quality of Life (QOL)

•For those with medical necessity - only treatment is the GFD

•Requires:

lifelong compliance to a rigid dietary pattern

Benefits are a well balanced intake of a variety of foods which

provide nutrients required for growth and repair

•Issues

limited awareness of GFD requirements in food service industry

increased reliance on manufactured GF products, associated with

increased weight and decreased nutrient status

creates challenges for individual and their social circle

•family, friends, coworkers

Slide 9

QOL Background

Why have QOL studies played such an important role in celiac research?

QOL encompasses the multifaceted well being of an individual

physical

economic

social

psychological

• Treatment of Gluten related disorders is also multifaceted

Only treatment is a highly restrictive diet

Initially poor availability of products

Increased cost of products

Impact on individuals daily lives

Slide 10

Economic Impact on Quality of Life

•Stevens & Rashid (2008) Canadian study

2 large chain grocery stores

Price comparison of gluten-free and gluten containing products

Gluten-free products – 242% more expensive (p< 0.0001)

•Lee et al (2009) US study

USDA market basket of gluten-free and gluten containing counterparts

Compared prices across • 4 types of stores

• Online venues

• 5 different regions of the US

Gluten-free products - 240% more expensive

•Singh & Whelan (2011) UK study

30 stores across 5 categories (regular stores, budget, corner shops

10 gluten-free products and 10 gluten containing counterparts

Gluten-free products availability varied by location

Gluten-free generally more expensive (2 – 124%)

Slide 11

Availability of gluten-free products by US venue

(Lee et al, 2009)

Slide 12

Cost comparisons of Gluten-Free and Regular products

Slide 13

Impact of the GFD on QOL

Review of Studies (Samasca, et al., 2014 and Rose & Howard, 2013)

After 1 year on GFD quality of life improved

Levels of anxiety decreased

Increased BMI, reduced adiposity, moderation of associated health

risks

However:

• Overall QOL and health perception improved, but did not meet

general population

• GFD associated with

increased levels of depression, social phobia, and feelings of isolation

changed social identities and lifestyle and experiences of grief

• Children with celiac have low compliance with GFD: poor palatability

(32%), dining out (17%), decreased availability (11%)

Slide 14

North American studies

Green et al: (2001, Am J Gastro)

• Quality of life prior to diagnosis “bad” 30%

• Quality of life after diagnosis “improved” 77%

• 20% of study population diagnosed > 60 years of age

• Average 11 years to diagnosis

Lee & Newman (2003, JADA)

• Pilot study: population 253 support group members

• Standard quality of life survey; SF12 with additional diet specific questions

– Women more negatively affected than men

– Largest impact on “social aspects” of life

» Areas of dining out, travel, and family life

Canadian support group population (2007, JHND)

• Females experienced greater negative impact

• 90% reported improvement on the diet

• 83% reported difficulties following diet included:

– Safe foods gluten free, locating foods in stores

– Avoiding restaurants and travel

Lee et all (2012, JHND)

• Population: 1735 celiac and 1186 controls

• SF 12 - - additional disease specific questions

• Initial improvement in QOL scores

– Overall health perception lower than controls (p=.001)

– 85% celiacs vs. 94% controls positive health perception ( p< .0001)

– 74% reported continued feeling “blue” vs. 59% controls

– Social domain most negatively affected

– Negative effect persists over time

Figure 2: Negative Impact of Gluten Free Diet on Quality of Life Over Time

0.0%

10.0%

20.0%

30.0%

40.0%

50.0%

60.0%

0-1 2-5 6-10 More than 10

Years Since Diagnosis

Perc

en

tag

e o

f P

op

ula

tio

n Im

pacte

d

Family Impact

Dine Out

Travel

Work

Lee et all (2012, JHND)

Quality of Life Statistics

Quality of Life: impacted by GFD

Slide 17

47.0% felt limited in eating with co-

workers (Quite a bit or A great deal)

35.5% felt limited in not being able to

have special foods like birthday cake

and pizza

35.8% felt afraid to eat out because of

cross contamination

Eating in social situations was most impacted (Zarkadas, et al 2013 and Lee, et al, 2012)

020

40

60

80

100

Vis

ual A

nalo

gue S

cale

CD GERDHTN DMESRD CHF IBD IBS

Perceived Treatment Burden

Patients with celiac disease have “excellent disease

specific health,” BUT they also report 2nd highest

perceived treatment burden (Shah &Leffler 2014)

Slide used with permission from Daniel Leffler, MD, MS, Digestive Disease Week 2012 Presentation; Unpublished Study, In Press as of April 2014

The Burden of Treatment

The reality is ……

Being diagnosed should make us feel this good !!

Slide 19

However….

This is how it often feels….

Slide 20

Impact of the GFD

•Real life responses •Ross & Howard ( 2013)

Social life • “I just want to be normal … I would rather go hungry”

GF diet is embarrassing • “I now wear gloves to make my children's’ sandwiches , which I hate”

• “worry about the negative perception of hosts when I have to turn down food, or the host

goes out of their way to find something I can eat”

Dining out on GF diet • “I have had to have a plain salad while I watched everyone eat real food in front of me!”

GFD is socially isolating • “Peoples’ reaction to me changed when I said I couldn’t eat certain foods…”

Family and friends do not understand the need to follow the diet • “Because you can’t see the effects of the disease people think it is in your head”

Percentage and location of intentional noncompliance by gender

0

10

20

30

40

50

60

70

80

90

restaurants social friends

Females

Males

Why they cheat

•Even though it will cause damage…… •(Lee et al, 2012)

46.3 % GF diet limits social life

55.3 % report GF diet is embarrassing

24.9 % report difficulty in dining out on GF diet

30.8 % report diet is socially isolating

33.3 % report family and friends do not understand the need

to follow the diet

What are our solutions?

• Knowledge is power

But….

• Plethora of information on line

Some good

Some not good

Some is really out there

• Need to be leery of social media connectivity

False sense of security

Accuracy of information

And….

Slide 24

Celiac Disease and Social support study – Lee, et al. 2015 JHND

•Social media and social support research with general population indicates increased use of social media and social support in health care (Fisher & Clayton, 2012)

56% of respondents use social media for appointment

reminders, cancellations, test results, and prescription

notifications

Of those not currently using social media 41.6% said they would

if their health care provider use it

Social support study Cross sectional study

Convenience sample of adults with celiac disease

Recruited from 2 sources

• Online support networks (August 6 -21, 2013)

• In person events (September, 2012 – February 2013)

Results: type of social support by age

0

5

10

15

20

25

30

18 - 25 26 - 35 36 - 55 56 - 65 > 65

Face to Face

Online

Both

% p

opula

tion

Age categories

QOL and online use in the general population

•Kross, et al., 2013

82 individuals, SWLS (Satisfaction with Life Survey)

sent five messages a day for 2 weeks, each text had a link to an online survey to determine sense of well being, worry, and loneliness

Increasing use was associated with decreasing sense of well being (p=0.02), increasing sense of worry (p<0.001), and increasing loneliness (p<0.01)

However

- Increased number of face-to-face contacts diminished the negative results of online use

Slide 27

QOL score by social support network

Slide 28

63

64

65

66

67

68

69

70

71

72

73

Face-to-face Neither Online Both

QOL score

QOL score

Type of social support used

had a statistically significant

impact (p< 0.0001) on the

QOL scores - across age

and gender. Lee, 2014 – in press

Key Findings

•42% reported using social support networks for social support

• Overall CD-QOL scores were generally good (68.9/100)

Higher CD-QOL scores associated with

increased age (p<0.0001)

increased time since diagnosis (p<0.0001)

increased level of education (p<0.0009)

•QOL scores were associated with the type of social support used

Face-to-face social support participation had a positive associated (p<0.0001)

Increased duration of face-to-face was positively associated with CD-QOL

(p<0.001)

Increased frequency of use of online social support was negatively associated

with CD-QOL (p<0.0001)

Social domain of QOL remains problematic

• Respondents felt limited in eating with co-workers, felt isolated, embarrassed

and limited their social life

Why is all of this important to you?

• Knowledge is power – But…..

• Your wait staff, grocery clerk, teacher has access to the

same information on line

However – they do not have understanding to decipher fact from

fiction

• Instantaneous information

Instant reporting on latest athlete or actress on GFD

• Gluten free diet is positioned as a trend

Real medical necessity is often lost in the hype

Slide 30

So what do we do ?

Title Presentation 4/20/2011 Slide 31

Be Brave ……

Set your targets high

Don’t be discouraged

Always have a back up

Work together

Support can come in many shapes and sizes

Solutions

• Reframe how we think about GFD

Need to own our celiac disease

It is part of our genetic make up - just like your hair and eye color

But that is all –

Celiac disease does not define you

• GFD is medically necessary

• GFD is your prescription

But that is all –

GFD does not define you

• GFD is meant to nourish and restore you

Slide 32

Avoiding the School Blues

• Identify key personnel

• Arrange a meeting with key team players

Bring food

Ask what their needs and concerns are

• Problem solve

• Follow up

• Recognition is key to success

Ask the staff be recognized

Mid year and end of year tokens

Slide 33

Avoiding school blues – part two

• College and University

• Dorm vs own apartment

GF meals delivered

lara@bluebutterflygf.com

• Special requests

Full size frig

Microwave

Toaster oven

Rice cooker

• Issues of time; study vs meal prep ???

• Issues of access

Late night studying

Late night delivery options

• Discussions on usual college topics

Alcohol

Slide 34

Schools out – let the summer fun begin

• Camps

• Day camps

Preparation similar to school

Contact food service, nurse, and dietitian on staff

Be prepared to send lunch and snacks

Use treat box for school for emergency snacks and/or treats for

unplanned events and celebrations

• Overnight camps

• Specialty camps

GIG – 2 camps NC and WA

MN – Gluten Detective Camp

RI – Camps Aldergate

• Regular camps

Slide 35

Dining Out Solutions

• Know before you go

Plan ahead

You select the place

Keep a list of GF restaurants

Check out menus online

• APP ‘s and Websites

Find me gluten free

Gluten Free Roads (Europe) www.glutenfreeroads.com

Open table www.opentable.com

GIG – gluten free foodservice www.gffoodservice.org

Slide 36

Dining Strategies

Frame your needs in understandable terms

Think allergy

Ambulances are not good for business

Velvet Hammer Approach

Soft but dramatic

Think when Harry met Sally

Be specific –

Plain grilled chicken – no sauce, no gravy …..

Baked potato – not cut, butter on the side…

Don’t let the past experiences impact the future

Slide 38

If you had a bad experience in the past

Try again ….but ….

Don’t go back to the restaurant

Write reviews

Get recommendations

Start simple – use chains with GF menus

Don’t get frozen

Use online resources to get

ideas and suggestions

Travel Solutions

• Most important

GO !!!!

• Think about destinations that are naturally GF

• Book an apartment hotel –

Having your own kitchen makes a world of difference

• Resources

National celiac support groups (Italian, Irish celiac societies)

Gluten free passport www.glutenfreepassport.com

Gluten free globetrotter www.glutenfreeglobetrotter.com

Slide 39

@GFAFPassport

Local Solutions

Retail chains as a new resource

• Many retail chains now have in-store dietitians

ShopRite

Wegmans

Price Chopper

• Most customers are actually see the in-store dietitian more often

than they see their doctor, priest, minister or rabbi

• Challenge your store level dietitians to provide:

Store based support groups

Store based events for education, sharing, and connections

• GF sampling

• Education days

Push for store level awareness

• GF section

• Shelf tags

• Product availability and variety Slide 40

Social Support is also key

• Support groups have a unique position

Offer social support

Feeling of community

Educational opportunities

• Many established groups

National and local

GIG – has a new kids group – GF Generation

• Start a new one

• Remember – the connection is the key

Age , interest, or activity based

Support comes in all shapes and sizes

Slide 41

Get connected – use available resources

Regional and National

• Gluten Intolerance Group (GIG)

– Generation GF

– Annual conference

– Celiac camps

• Celiac Disease Foundation (CDF)

• Celiac Support Association (CSA)

– Annual education conferences

– Educational materials

• ROCK - Raising Our Celiac Kids

• Beyond Celiac (NFCA)

– Resources and information

– Family testing

– events

Slide 42

Most important remember

- you don’t have to go it alone

Title Presentation 4/20/2011 Slide 43

Even the Lone Ranger had a

partner!!

There is a feeling of safety and

security in numbers

Doesn't have to be a group

take a class

join a club

Key is -

Own your celiac disease

Face to face social connection

Make a plan to master it

Take Home message

• Solutions

Don’t let GFD limit or define you

Travel, dine out, be social

Kids (and college kids) need to be empowered and supported

Go out and enjoy

• Social Support is key to QOL

• But it can come in many forms

• Pay it forward – help a nubie

Thank you for your attention