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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.
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
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