GLUTEN-FREE DIET QUALITY OF LIFE: ISSUES AND SOLUTIONS - ANNE ROLAND LEE, EDD, RD, LD DIRECTOR OF NUTRITIONAL SERVICES DR. SCHAR USA, INC.
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Gluten-Free Diet Quality of Life: Issues and Solutions Anne Roland Lee, EdD, RD, LD Director of Nutritional Services Dr. Schar USA, Inc.
Disclosures
• Employee of Dr Schar USA, my position in the company is
as the Director of Nutritional Services
• Studies I have conducted and are reporting here have no
funding from Schar or anyone else.
• I have not received any other funding
Slide 2
Overview
• The changing gluten-free market
• Impact of GFD on quality of life
• Unique role of social support systems
• Solutions and Practical Tips
Slide 3
The Gluten-free category
today
Focus on GF Diet for:
Weight loss
Healthy choice
Clean Eating
Slide 4
Evolving uses of the gluten-free diet – beyond Celiac Disease
• Gluten sensitivity, IBS, • Autism Spectrum Disorder &
Crohns Attention Deficit Syndromes
Estimated 6% of U.S. pop Estimated 2-5% of U.S. pop
Intolerance to gluten treated Follow a recommended
through avoiding gluten in diet gluten/casein-free diet
Only treatment is the gluten- Very active and vocal
free diet national/local support groups
Treatment : OT, PT and diet
• Wheat allergies
Estimated 5-7% of U.S. pop • MS, Arthritis, Migraines
Only treatment is avoidance of Estimated 2% of U.S. pop
wheat Gluten-free diet is thought to
Can be transient or seasonal reduce inflammation and pain
Treatment is diet Used in conjunction with other
therapies and medications
• Up to 43M people have an interest in gluten-free foods
Slide 5
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 6
Gluten-free category today
• 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
Slide 7
Gluten-Free Category Growth
14 2013 Sales in billions of dollars
12 Core category $ 1.5
10
Total category $13.6
8 Core GF Category
6 Total GF Category
4
2
0
2011 2012 2013
30%
Number of products
25%
Core category ^ 29.4%
20%
Total Category Total category ^ 16.1%
15%
Core Category
10%
5%
0%
Slide 8
2012 2013 Source: SPINS 2013 data
What is Gluten?
Gluten is the general term for the storage protein found in grains
Gluten refers to the specific protein in:
Wheat
Rye
Barley
Gluten gives elasticity to dough,
- helping it rise and keep its shape
- gives the final product a chewy texture.
Gluten can be found in non food products
- Hair products
- Soaps
- Lotions
- Cosmetics
- Arts and craft materials
Slide 9
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 10QOL 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 11Economic 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 12Availability of gluten-free products by US venue
(Lee et al, 2009)
Slide 13Cost comparisons of Gluten-Free and Regular products
Slide 14Celiac is a “social” disease
•Diet – is the only treatment
•However
•Food is more than just meeting basic physiologic needs
•Diet and food are social in nature
Sharing food
Meal preparation
Food choices
•Treatment is complex
requires elimination of gluten
complete avoidance of cross contamination
any exposure causes intestinal damage
Slide 15Impact 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
GFD was associated with 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 16The Issue – QOL is negatively affected, especially in the social domain.
European studies
Ciacci – 2002 Dig Dis Sci 47 (9)
• 114 on gluten free diet vs 25 untreated
• Measured emotional impact of diagnosis and feelings at follow up
– Relief and reassurance at diagnosis - (p=0.0001)
– Anger, anxiety and fear most prominent at follow up (p= 0.0005)
Hallert -2006, Digestive and Liver Disease 38 (3)
• Population; 51 celiacs, 182 controls
• Psychological Well-Being Index - overall similar
– 103 (95% CI 99-107) vs 103 (95% CI 100-106)
• Gender specific – celiac females significantly lower scores than males
– 97 (95% CI 91-103) vs 111 (95% CI 106-117) P0.05)
– QOL score reduced with increasing difficulty in following GFD
– 80% reported difficulty following GFDNorth 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 travelQuality of Life – North American Studies
Lee et all (2012, JHND)
Population: 1735 celiac and 1186 controls
SF 12 - - additional disease specific questions
• 13% of population diagnosed in childhood
• 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
Slide 19Figure 2: Negative Impact of Gluten Free Diet on Quality of Life Over Time
60.0%
50.0%
Percentage of Population Impacted
40.0%
Family Impact
Dine Out
30.0%
Travel
Work
20.0%
10.0%
0.0%
0-1 2-5 6-10 More than 10
Years Since DiagnosisQuality of Life: impacted by GFD
Eating in social situations was most
impacted
(Zarkadas, et al 2013 and Lee, et al, 2012)
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
Slide 21Gluten free eating and food shopping should be fun!
Slide 22However….
This is how it often feels….
Slide 23Percentage and location of intentional noncompliance by gender
90
80
70
60
50
Females
40
Males
30
20
10
0
restaurants social friendsWhy 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 dietImpact 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”Are there solutions?
•Social support crucial to adherence
Several studies show increased dietary adherence with support groups
•Four forms of social support had impact
Accommodation by family and friends
School and community support
Group support
Others in circle on GFD
Slide 27Social Support Networks and QOL in chronic diseases
No data on social support network participation
and QOL scores in patients with celiac disease
Studies in chronic diseases have shown an
association between social support network
participation and QOL scores
• Face-to-Face
• Chao, et al., 2013 (Hepatitis C)
• Vakharia, et al., 2007 (Head and Neck Cancer)
• Online
• Idriss, et al., 2009 (Psoriasis)
• Gustafson, et al., 2001 (Breast Cancer)
Slide 28QOL and online use in the general population
•Kraut, et al., 1998
73 families followed for 2 years
4 measures of social involvement:
• family communication
• size of local social network
• size of distant network
• social support
• Measures for loneliness, depression, interpersonal support
•Results
Increased loneliness and depression was associated with
increased use of the internet (pQOL 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
(pSocial support study - in press 2015 JHND
•Study design
Cross sectional study
Convenience sample of adults with celiac disease
Recruited from 2 sources
• Online support networks (August 6 -21, 2013)
– announcement and link posted on celiac sites with link to survey:
Facebook, Twitter, celiacdiva, glutendude, scharclub
– Completed survey on Survey Monkey
• In person events (September, 2012 – February 2013)
– distributed at celiac support group meetings
» Buffalo, NY, Albany, NY, Orange, NJ Chester, PA, Toms River,
NJ, Livingston, NJ,
– distributed at gluten free expos
» Denver, CO, Dallas, TX, Rye, NY, Carmel, IN, Boston, MA,
Columbus, OHType of support network used
18
16
14
12 Face to face
10 Online only
8 Both
6
4
2
0
Type of support
Slide 32Results: type of social support by age
30
25
% population
20
Face to Face
15 Online
Both
10
5
0
18 - 25 26 - 35 36 - 55 56 - 65 > 65
Age categoriesQOL score by social support network
Type of social support used
had a statistically significant
impact (p< 0.0001) on the
QOL scores - across age
QOL score and gender.
Lee, 2014 – in press
73
72
71
70
69
68 QOL score
67
66
65
64
63
Face-to-face Neither Online Both
Slide 34Key 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
Key Findings
• QOL scores were associated with the type of social support used
Face-to-face social support participation had a positive associated
(pThoughts, conclusion, and solutions Individuals with celiac disease are negatively impacted by the gluten-free diet Social and economic domains are most impacted Need to identify areas that intervention can make a difference Adolescents vulnerable group Teens with celiac are at increased risk
So what do we do ?
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
Title Presentation 4/20/2011 Slide 38Social Strategy
Velvet Hammer Approach
Soft but dramatic
Think when Harry met Sally
Be specific –
What type of support do you need?
Who do you need it from
But also –
What can you do for the community
Who can you offer support toGet connected – use available resources
Local Support Groups
• ROCK - Raising Our Celiac Kids
Regional and National
• Gluten Intolerance Group (GIG)
• Celiac Disease Foundation (CDF)
• Celiac Sprue Association (CSA)
– Annual education conferences
– Educational materials
• National Foundation for Celiac Awareness
– Resources and information
– Family testing
– events
Slide 40Opportunities to change lives
• Support groups have a unique position
Offer social support
Feeling of community
Educational opportunities
• Many established groups
Go on line to find the one that meets your needs
• Start a new one
• Remember – the connection is the key
Age , interest, or activity based
Slide 41Opportunities to change lives
• Retail chains have also stepped up
• Most customers are actually see the in-store dietitian more
often than they see their doctor, priest, minister or rabbi
• The retail dietitian can be your go to person
• Dietitians and nutritionists see the trends of the future and
can be a positive influence on what the store carries and
meeting your support and health needs
Slide 42Store level opportunities to change lives
• Challenge your store level dietitians to provide:
Store based support groups
Store based events for education, sharing, and connections
• GF sampling
• Education days
Access to health education
• In-store dietitian can provide a wide range of dietary help
Push for store level awareness
• GF section
• Shelf tags
• Product availability and variety
Slide 43Store level opportunities to change lives:
• Be brave – partner with the retailer
• Cooking classes for teens, children, families
• Store sponsored date night for tweens and teens
• Family night with pizza and a movie
• College connection
The possibilities are endless –
Dare to be creative
• it could make all the difference
Slide 44Most important remember
- you don’t have to go it alone
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 -
Face to face social connection
improves quality of life
Title Presentation 4/20/2011 Slide 45Take Home message
• Solutions
Social Support is key to QOL
Face-to-face – most effective
Social support will change long term outcomes
• Family, friends and HCP’s need to provide
• Support, Knowledge, and CompassionThank you for your attention
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