surveyresults

1) General Questions

1. How many people in your household are celiacs, autistic, or gluten or wheat intolerant?

1 in household 80%

2 in household

15%

3 in household

4 in household

6 in household

1 household

Note: One elementary school teacher, a non-celiac, filled out the questionnaire. She wrote that she has two

students who are celiac and she bakes special treats for them.

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2. Please list any food allergies in your household.

The foods below were each listed only once:

grapes, coffee beans, raw carrots, tomatoes, preservatives, artificial flavors, garlic, millet, carob, all fruits,

starchy vegetables, eggplant, cherries, sulfite, nightshade, mushrooms, rosemary, nitrates, fava beans,

fresh fruits, broad beans, sodium benzoate, fructose, mustard, chocolate, sucralose, hypoglycemic, flax,

melons, cornstarch, pineapple, kiwi, sunflower seeds, lobster, caffeine

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3. Please list other diet considerations that apply to the gluten-free person(s) in your household, including: diabetic, Vegan, vegetarian, low sodium, low fat, low carb, Kosher, etc.

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4. What is the most difficult thing about being celiac?

(Since respondents wrote in their answers, the answers varied widely. I have taken the liberty of grouping like-kind answers together.)

Getting diagnosed - 2

Ignorance of medical professionals - 5

Have to make my own baked goods - 1

Cooking from scratch - 8

Have to plan each meal - 7

Dealing with 2 toasters & 2 sets of pans - 1

Can't get the right combination of flours - 1

Eating out - 105

All socializing always involves food - 15

Eating at friends' homes - 24

Traveling - 12

Spur of the moment socializing - 6

Pot lucks - 4

Eating in hospitals - 2

Gluten-free foods have a bad taste - 20

Can't find good bread - 6

Breads don't have texture similar to wheat breads - 2

Giving up baked products - 2

Gluten-free foods are too expense - 6

Hard to find gluten-free products locally - 8

Can't find a good caramel roll - 1

Not confident food is safe when it is prepared by

others - 6

Chefs/servers don't know what is in the food - 7

Finding foods and recipes for multiple dietary

restrictions - 11

Getting information on gluten-free medications - 3

I feel I am an inconvenience to others - 1

I feel I have to eat all the gluten-free food people make

just for me - 1

Family/friends are afraid to invite me over to eat - 1

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2) Food Questions

1. What kind of pasta do you like best?

brown rice - 106

white rice - 60

corn - 32

quinoa - 23

buckwheat - 4

lentil - 4

other - 10

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2. If you make your own breads, do you use quick rise yeast or active dry yeast most of the time?

active dry yeast - 137

rapid rise yeast - 62

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3. Do the celiacs in your family eat oats?

yes - 118

no - 207

sometimes - 3

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4. If you regularly use flaxseed, what form do you use?

Light whole flaxseed - 77

Light flaxseed meal - 55

Dark whole flaxseed - 26

Dark flaxseed meal - 19

Flaxseed oil - 17

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5. What is your favorite brand of gluten-free pre-baked bread?

Whole Foods - 41

Kinnikinnick White Sandwich - 38

Local Gluten-free Bakery - 27

Ener-g Light Tapioca - 24

Food for Life - 19

Glutino - 15

Bob's Red Mill - 10

Breads by Anna - 8

Sami's - 6

Gluten-Free Pantry - 4

Glutino Cornbread - 4

Grandma Ferdon's - 4

Sterk's Italian Bread - 4

Whole Foods Cinnamon Raisin - 4

I gave up eating bread - 9

None, they all taste terrible! - 82

The following breads each receive "Honorable Mention" for receiving 1 to 3 votes!

Glutino Cheese Bread, Authentic, Life Beyond Wheat, Grandma Whimsy, Mr. Ritts Mock Pumpernickel, Gluten Free for Me, Food for Life Rice Almond Bread and Rice Pecan Bread, Kinnikinnick English Muffins, Mr. Ritt's Artesian Bread, Staff of Life, El Peto, Free 4 Me, Knnikinnick Tapioca Bread, Enjoy Life, Le Garden Bakery, Gillean's, Glutino Flaxseed Bread, Kinnikinnick Brown Sandwich Bread, Kinnikinnick Multigrain, Kinnikinnick Sunflower Flax Bread, Dr. Schar, Arrowhead Mills, Ener-g Seattle Brown Bread, Valpiform.

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6. If you could have a slice of your favorite kind of bread, which commercial wheat bread would it most resemble?

French Bread - 198

High Fiber Bread - 155

Wonder Bread - 141

Pepperidge Farm Toasting White Bread - 91

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7. Where do you store your gluten-free flours?

Kitchen counter - 243

Refrigerator - 187

Freezer - 122

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8. Do you use artificial sweeteners?

Yes - 195

No - 353

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9. If yes, which artificial sweetener do you use most often?

Splenda - 95

Sweet 'n Low - 42

Stevia - 21

Equal - 18

Aspartame - 10

Whey Low -2

Xylitol - 1

Lo Han - 1

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10. Do you eat raw sushi or other raw fish?

Yes - 59

No - 223

Rarely - 47

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11. Do you snack a lot and eat between meals?

Yes - 195

No - 86

Sometimes - 215

Rarely - 42

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12. If you buy packaged gluten-free cake mixes, which is your favorite brand?

Gluten-Free Pantry - 142

Namaste - 95

Pamela's - 57

Bob's Red Mill - 41

Kinnikinnic - 40

Cause You're Special - 23

Really Great Food Company - 19

Dowd & Rogers - 10

Authentic foods - 9

Glutino - 8

The following brands of cake mixes each receive "Honorable Mention" for receiving 1 to 3 votes!

Sylvan Border Farms, Schar, The Cravings Place, 123 Gluten Free, Gluten Free Essentials, Celemix, Celiac Specialties, Cherrybrook Kitchens, Arrowhead Mills

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13. Are you consuming more fruits and vegetables now than you were 5 years ago?

Yes - 240

No - 111

Same amount - 156

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14. Are you a coffee or hot tea drinker?

Coffee - 169

Hot tea - 164

Both - 123

Neither - 48

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15. Do you think you cook heart healthy the majority of the time?

Yes - 350

No - 127

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16. Besides rice, potato starch and tapioca flours, what one gluten-free flour do you use the most?

bean - 58

sorghum - 58

cornstarch - 25

almond - 22

brown rice - 20

soy - 19

quinoa - 18

corn flour - 17

coconut - 16

buckwheat - 15

cornmeal - 14

sweet rice - 13

amaranth - 12

arrowroot - 11

teff - 6

yam starch - 4

millet - 4

flaxmeal - 3

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3) Lifestyle Questions

1. Do you exercise regularly?

Yes - 239

No - 194

Sometimes - 54

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2. Select the choice that best fits you:

I'm trying to lose weight - 239

I am happy with my weight - 155

I'm trying to put on weight - 75

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3. When you or your family member were first diagnosed, who helped you the most?

Internet - 173

Support group - 94

Family member - 51

Doctor - 27

Other - 23

Dietitian - 19

Friend - 19

Nutritionist - 3

I didn't get any help - 1

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4. Do you belong to a celiac support group?

Yes - 276

No - 203

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5. If yes, do you take an active part in the group?

Yes - 163

No - 129

Occasionally - 152

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6. What two benefits do you get from belonging to a support group?

We all share information, tips and advice - 71

I don't feel so alone - 29

I get personal support and talk about my symptoms and challenges - 29

We share recipes - 28

We get up to date product information - 27

I feel I am helping others - 21

I go for the social contact - 19

I go because we have vendors and I can buy products and taste free samples - 18

I get the latest medical information about celiac disease - 16

I go because we have speakers regularly - 14

Find out where to buy gluten-free foods locally - 3

I love the support group newsletters and e-mails - 11

Find out which local restaurants are serving gluten-free food - 12

Find out the current food laws - 2

I'm too shy to go to a meeting - 1

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7. For the celiac in the family, what is the most difficult situation to handle away from home?

Eating out at restaurants - 109

Weddings and events where there are set menus - 35

Business meetings - 25

Social engagements - 24

Church gatherings, pot lucks, picnics - 24

Family dinners - 23

Eating at friends' homes - 21

Packing lunches - 14

Church gatherings, pot lucks, picnics - 24

Traveling - 11

I don't eat out (afraid / too many other dietary restrictions / physically disabled) - 4

When groups of kids go out to eat - 3

Meals are difficult living in a retirement community - 2

Spur of the moment events - 2

Going out with friends for pizza - 2

I hate to eat out with friends because they think they understand my diet - 2

Can't buy fast food - 2

Eating on a college campus - 2

I'm a burden because everyone has to plan outings around me - 2

Not being able to eat desserts when they are served - 2

Buffets - 1

Sporting events - 1

Having to bring my own food all the time - 1

Having to talk to the cook every time we go to a restaurant - 1

I have adjusted to almost every social situation! - 1

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8. Does your extended family really understand your diet?

Yes - 57

Most - 55

Some - 79

Very few - 16

No - 48

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9. How do you feel about being gluten-free?

Thank you to all the respondents who took the time to express your answers to this question. Some wrote one or two lines, while others wrote volumes. There isn't enough space to write all of the answers here in their entirety, so most answers have been abbreviated and combined into like-kind groups.

Negative Replies

24 Resentful, this diet stinks!

This diet is so inconvenient when away from home

I resent not ordering pizza out, having a croissant, or ordering anything I want in a restaurant

I'm depressed all the time

Gluten-free foods are too expensive

It's a stigma when I go to a restaurant to eat with friends

I HATE IT!

This diet is inconvenient

I miss my favorite foods

The diet is difficult because I have so many other food allergies

I tend to isolate myself to avoid social situations involving food

Lack of variety in the foods I can eat

Frustrated because I have to constantly check ingredients and be on the alert all the time

Kids don't want to be different and this diet definitely makes them different

Cooking gluten-free takes too much time

Wish more gluten-free foods were available at a regular grocery store

Frustrated

There's no support group in my area

Hidden glutens are a problem

It's tiresome constantly looking for new foods I can eat

I wish others would trust that I know what I'm doing with my diet

It's hard to find low carb gluten-free foods

There is no health food store close by

I've become too sick to leave home so there are no social situations to deal with

I feel deprived

My friends don't understand that this diet is so strict. I've lost friends over it.

I wish more restaurants had gluten-free menus

I always have to pack my own food when we go out

I couldn't get gluten-free food when I was in the hospital

I hate having to constantly explain the diet

Kids don't understand that they can get really sick if they cheat and eat foods they shouldn't

I live in Guam and there are no packaged gluten-free foods available

When I call manufacturers, I don't get a reply for days

I've wasted a lot of money experimenting on foods that taste terrible

I miss Asian food the most because I can't have the soy sauce.

Wish purchased gluten-free foods tasted better and had less sugar

I eat out less and less

I;m frustrated with contradicting information

I can deal with the diet; its the dermatitis that's the problem

The medical community is ignorant about celiac disease

Work conferences are difficult

I can't be spontaneous on this diet

The local supermarkets think 'organic' is good enough

I'm allergic to yeast-. I sure would like a good bread that;s made with baking powder

If I had been diagnosed sooner, CD wouldn't have led to other medical problems. I have complications now.

I'm confused -- I'm on the diet but I'm not feeling any better

I hate to cook and now I have to

I won't eat out at all unless the restaurant has a gluten-free menu

I feel I offend friends when I tell them I can't eat their food

This diet has removed a lot of my culture from my life

There is a real need to educate the public about celiac disease

I eat only to stay alive . Eating is no longer enjoyable.

My family thinks white bread is OK because it's not wheat bread

Mall food courts rarely have anything that is gluten-free

(A teen wrote:) I want to eat what my friends are eating

Positive Replies

62 My body feels so much better. The diet is better than being sick.

38 I am at peace with the diet

33 The whole family is eating so much healthier now

21 There are far worse problems in life than adhering to a diet

17 Thankful no surgery or daily medicine is needed

13 Grateful for diagnosis because I finally know what's wrong with me

11 I was overwhelmed at first, but the diet gets easier every day

The diet is not a choice. It's a matter of survival and I want to survive

There are so many more gluten-free foods available now than there were years ago

I have improved on the diet though I still have other health issues

I won't let this be difficult!

It's wonderful to know that I have control over how I feel

The diet is necessary. Deal with it!

The support group helped so much with my adjustment to this diet

This diet is a love/hate relationship, but usually I'm OK with it

I have far more energy now

I want to join a support group

Everyone in the house is gluten-free so that makes cooking so much easier

I'm hoping a cure can be found, or at least a pill developed so I can eat gluten again

We should start a campaign so HMOs will increase blood testing for celiac disease

I only hope that other celiacs get the same support from their families that I have received from mine

I hope that someday celiac disease will be a cultural oddity

This diet isn't as bad as I thought it would be.

It's been an interesting journey!

This is the best terminal disease to have if you have to have one

It helps my child that some of her friends have allergies so she is not the only one watching her diet

I'm having fun creating new gluten-free foods

Some see it as a blessing, some as a curse. I choose to see it as a blessing.

God will never give me more than I can handle

I feel fabulous and so healthy now

I am thrilled that I was finally forced to learn how to bake

With planning, I can eat out anywhere

I'm thankful that I don't have food allergies, too

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The purpose of this survey was to find out the eating and lifestyle habits of those on a gluten-free diet. I sincerely thank each person who took the time to fill out the survey. The information you provided helps me to better serve the celiac community. All names of those filling out the survey will be kept confidential. And remember... Being gluten-free means that you can eat almost everything you used to eat before just by making it a little differently now.

Connie Sarros

Gluten-free Cookbooks

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