Gluten Free Research Project

[Gabel]

Hello, I am a sophomore in Industrial Design at the University of Illinois at Urbana-Champaign developing a product that aims to enhance the lives of individuals on gluten-free diets under the instruction of Assistant Professor Deana McDonagh and Ben Grosser, director of the Beckman Institute of Advanced Science and Technology. Below is a survey I am conducting for those with Celiac disease or gluten intolerance to help me research and figure out how the gluten-free lifestyle can be improved in terms of dining out. Any questions you would be willing to answer would be of significant help to my research and product development. Also, anyone who may feel uncomfortable posting their answers may instead e-mail me at gabel@uiuc.edu.

Thank you all for taking the time to assist me in my research and I will continue to keep you posted on the status of the project as it progresses.

Questions:

1. sex:

2. age:

3. ethnic group:

4. age at which you were diagnosed:

5. How did you feel when you were diagnosed?

6. Did you have health problems in childhood?

7. How well do you maintain a gluten-free diet?

__ I absolutely never eat gluten

__ I very rarely eat gluten that I know of

__ I try not to eat gluten but I sometimes cheat or don't know

__ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

__ Price of gluten-free food

__ Availability of gluten-free food

__ Taste of gluten-free food

__ Preparation of gluten-free food

__ Public awareness of gluten intolerance/celiac disease

__ Knowing and understanding what foods you can and cannot eat

__ Reading and memorizing labeling on foods

__ Dining out

__ Traveling

__ Other:

9. What type of symptoms do you face when gluten is ingested?

__ nausea/vomiting

__ diarrhoea

__ mouth ulcers

__ stomach pains

__ fatigue/tiredness

__ other(s) :

10. How comfortable are you eating in restaurants or public situations?

__ Very comfortable: I have no problem at all

__ Comfortable: It's not too much of a problem or embarassment for me

__ Slightly uncomfortable: I sometimes feel it a hassle or embarassing to ask about or identify gluten-free food

__ Uncomfortable: I often feel it a hassle or embarassing to ask about or identify gluten-free food

__ Very uncomfortable: I avoid dining in public situations if at all possible

11. If you ever do feel uncomfortable, where and why exactly does this usually happen?

12. How do you deal with situations in which you must dine out?

__ Don't eat

__ Only eat what you know or can assume is gluten free

__ Eat what they have out of politeness, even if it may contain gluten

__ Ask for a gluten free dish

__ Other :

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accomodating to gluten free requests?

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it?

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.)

16. What aspects might make you refrain from using it?

17. About how much would you be willing to spend on a device like this?

18. Would you be willing to participate in later product testing and further interviewing as this project develops?

Thank you once again! Any further questions or comments may be posted or e-mailed to gabel@uiuc.edu.

[MySuicidalTurtle]

Answers:

1. sex: Female.

2. age: 19.

3. ethnic group: Caucasian.

4. age at which you were diagnosed: 17.

5. How did you feel when you were diagnosed? I felt glad to know the problem.

6. Did you have health problems in childhood? Yes.

7. How well do you maintain a gluten-free diet?

X I absolutely never eat gluten

__ I very rarely eat gluten that I know of

__ I try not to eat gluten but I sometimes cheat or don't know

__ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

X Price of gluten-free food

X Availability of gluten-free food

__ Taste of gluten-free food

__ Preparation of gluten-free food

X Public awareness of gluten intolerance/celiac disease

__ Knowing and understanding what foods you can and cannot eat

__ Reading and memorizing labeling on foods

X Dining out

X Traveling

__ Other:

9. What type of symptoms do you face when gluten is ingested?

__ nausea/vomiting

X diarrhorea

__ mouth ulcers

__ stomach pains

__ fatigue/tiredness

X other(s) : Rashes.

10. How comfortable are you eating in restaurants or public situations?

__ Very comfortable: I have no problem at all

__ Comfortable: It's not too much of a problem or embarassment for me

__ Slightly uncomfortable: I sometimes feel it a hassle or embarassing to ask about or identify gluten-free food

__ Uncomfortable: I often feel it a hassle or embarassing to ask about or identify gluten-free food

X Very uncomfortable: I avoid dining in public situations if at all possible

11. If you ever do feel uncomfortable, where and why exactly does this usually happen? It happens at any place that does not have a glutenfree menu because they usually cross-contaminate.

12. How do you deal with situations in which you must dine out?

X Don't eat

__ Only eat what you know or can assume is gluten free

__ Eat what they have out of politeness, even if it may contain gluten

__ Ask for a gluten free dish

X Other : I bring my own food and if not then I don't eat.

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accomodating to gluten free requests? No, unless they cater to Celiacs.

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it? There is one but it's not too reliable in my opinion. It would have to be extreemly sensitive for me to use.

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.) The one now has a high and low/no gluten score. I would want a high, low, and no gluten score if I used it.

16. What aspects might make you refrain from using it? Speed, and accuracy.

17. About how much would you be willing to spend on a device like this? Not a whole lot.

18. Would you be willing to participate in later product testing and further interviewing as this project develops? No.

[celiac3270]

I posted this under the duplicate at first, so I just copy and pasted it and deleted the other one.

1. Male

2. 14

3. Caucasian

4. 13

5. Initially, I didn't even know what celiac was, and since it was a "disease", I was scared, confused, etc. Once I educated myself, a little overwhelmed, but determined to feel better.

6. Yes--when I was an infant I had projectile vomiting. At age 13, about a year ago, I was diagnosed with celiac disease. Within the past month, I've found out that I have malrotation of the intestines, a painful physical problem with the structure of the intestines, causing them to twist--happens at infancy and it took 14 years of vomiting, pain, and no answers to find. That's about it.

7. I absolutely never eat gluten

8. I don't have difficulties maintaining the diet, though I guess better labeling to make finding out whether foods are gluten-free easier would be terrific. With restaurants--some understand, or at least, treat it like an allergy and therefore, do a good job with my meal, some I wouldn't trust, but it's just about picking the right place and doing your research. Travel is....a pain in the neck--challenging to plan--but it can be done. Taste can vary, but that doesn't make it difficult for me to maintain the diet. So basically, no problems, but better labeling would help me the most.

9. I'm not sure if my symptoms came only from the malrotation (explained in 6) or both. For all I know, I may have been an asymptomatic celiac. I think, though, that my symptoms might have lessened in severity with the gluten-free diet, so I would say: stomach pains, vomiting/nausea, bloating/gas, loose stools, and low weight.

10. Very uncomfortable--let's put it this way, I would never eat out for fun. I'm one of those ultra-paranoid gluten nuts since gluten, in part, had me sick since I was a pre-schooler--as far back as I can remember. I don't really like talking to people about celiac, but of course, I do when I eat out......I just don't find it enjoyable because I'm also scared about possible contamination. That applies to restaurants without a gluten-free menu, when they're just trying to do their best. With a place that has a gluten-free menu and seems pretty reliable/diligent, I think it can be an enjoyable experience and I feel less....awkward, asking for a special meal, since I can just order off a menu like everyone else.

11. Oh, didn't see this question when I was answering the one before--I think I explained it above.

12. Ask for a gluten-free dish.

13. Yes--they seem very earnest to do it correctly, too, since I don't downplay celiac or the dangers of even a few crumbs to my body. Sometimes the word allergy helps--since people often aren't aware with celiac. I'd rather explain it how it is than call it an allergy, since it's not, but it's just easier when you're eating out.

14. Maybe--probably not, if it was too expensive.

15. Affordability, accuracy

16. Very high cost, low accuracy -- basically the opposite of what I would find appealing in the machine.

17. Oooh...dunno. It would probably depend, of course, on the quality of the machine. I'm not sure that I would buy it, since I don't eat out too much and I would rather call a company and find out for sure if something's gluten-free than to test it where the results might not be totally accurate...and I'm 14, so I wouldn't know what would be reasonable.

18. Interviewing--definitely. Testing--yes, provided that I wouldn't be putting myself at risk with gluten consumption.

Just a few questions, though it's not that important or related. Are you celiac? If not, what interested you in doing this? Thanks

-celiac3270

[KaitiUSA]

1. Female

2. 17

3.Caucasian

4. 16

5. I was overwhelmed a bit but relieved that I would finally be feeling better

6. No always healthy until age 14 when I got mono...that started everything.

7. I absolutely never eat gluten

8. Price and availability of food

9. tired, nausea on and off, weight loss

10.Very uncomfortable

11. Not everyone knows all they ways foods can get cross contaminated. I don't trust the people to prepare my food in a glutened place. I can't order like everybody else and people wonder why I can't eat it and then I have to explain it all. It's not embarassing it is frustrating. I do not choose to go out to a restaurant to eat though.

12.Ask for a gluten free dish

13. no because most do not understand. Some I have found to be good and knowledgeable though and those places I will go to eat if I have to go out to eat.

14.Yes that would be awesome

15. Accuracy and size

16. if it is innaccurate or overpriced

17. Depends on how accurate it is and if it is easy to carry around like fit into a purse

18. Yes as long as I would not be consuming gluten

[flagbabyds]

1. sex:Female

2. age:14

3. ethnic group: Cacuasion

4. age at which you were diagnosed:20 months old

5. How did you feel when you were diagnosed? Don't know, pretty sick, don't remember

6. Did you have health problems in childhood?Yes

7. How well do you maintain a gluten-free diet?

_X_ I absolutely never eat gluten

__ I very rarely eat gluten that I know of

__ I try not to eat gluten but I sometimes cheat or don't know

__ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

__ Price of gluten-free food

_X_ Availability of gluten-free food (although it has gotten much better over the years)

_X_ Taste of gluten-free food

__ Preparation of gluten-free food

_X_ Public awareness of gluten intolerance/celiac disease

__ Knowing and understanding what foods you can and cannot eat

__ Reading and memorizing labeling on foods

__ Dining out

__ Traveling

__ Other:

9. What type of symptoms do you face when gluten is ingested?

_X_ nausea/vomiting

_X_ diarrhoea

__ mouth ulcers

_X_ stomach pains

_X_ fatigue/tiredness

__ other(s) : gliaden shock

10. How comfortable are you eating in restaurants or public situations?

__ Very comfortable: I have no problem at all

_X_ Comfortable: It's not too much of a problem or embarassment for me

__ Slightly uncomfortable: I sometimes feel it a hassle or embarassing to ask about or identify gluten-free food

__ Uncomfortable: I often feel it a hassle or embarassing to ask about or identify gluten-free food

__ Very uncomfortable: I avoid dining in public situations if at all possible

11. If you ever do feel uncomfortable, where and why exactly does this usually happen? It sometimes happens when I am with my friends and they are all ordering and I am asking questions about the menu for 20 minutes and they get all annoyed

12. How do you deal with situations in which you must dine out?

__ Don't eat

__ Only eat what you know or can assume is gluten free

__ Eat what they have out of politeness, even if it may contain gluten

_X_ Ask for a gluten free dish

__ Other :

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accomodating to gluten free requests? Some are/some aren't, it really depends how crowded it is because if there are a lot of people, they tend not to listed as much, but if there aren't as many, they pay more attention to you

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it? Yes

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.) accurcy, I would want it to be as correct as possible

16. What aspects might make you refrain from using it? If there is a chance that it gives false negatives and then it would make me sick

17. About how much would you be willing to spend on a device like this? up tp $200

18. Would you be willing to participate in later product testing and further interviewing as this project develops? yes

This will be really cool if you can get it to work!

[Guest barbara3675]

Here we go....a reply from someone much older than those who have taken the time to reply already.

1. Female

2. 59

3. Caucasin

4. 59

5. Happy to know what was causing my swings from constipation to diarreah and how all of this connected to joint pain, migraine headaches, and other health concerns.

6. No

7. I very rarely eat gluten that I know of

8. Traveling and eating out

9. Stomach pains and diarreah

10. Slightly Uncomfortable

11. If the server doesn't want to take the time to understand what the issue is, then it can be an uncomfortable situation.

12. Eat only what you know or can assume if gluten-free

13. Sometimes

14. Yes

15. Size (fit in purse) accuracy would be essential

16. Known unreliability, too big to carry around, doesn't react in a reasonable amount of time.

17. $50

18. Yes

[jenebanana]

Questions:

1. sex: female

2. age: 23

3. ethnic group: white

4. age at which you were diagnosed: 22

5. How did you feel when you were diagnosed? depressed

6. Did you have health problems in childhood? stomach problems, frequent ear infections

7. How well do you maintain a gluten-free diet?

__ I absolutely never eat gluten

__ I very rarely eat gluten that I know of

_X_ I try not to eat gluten but I sometimes cheat or don't know

__ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

_x_ Price of gluten-free food

_x_ Availability of gluten-free food

_x_ Taste of gluten-free food

_x_ Preparation of gluten-free food

_x_ Public awareness of gluten intolerance/celiac disease

__ Knowing and understanding what foods you can and cannot eat

__ Reading and memorizing labeling on foods

__x Dining out

__x Traveling

__ Other: social issues related to gluten free diet

9. What type of symptoms do you face when gluten is ingested?

__ nausea/vomiting

_x_ diarrhoea

_x mouth ulcers

_x_ stomach pains

_x_ fatigue/tiredness

__ other(s) :

10. How comfortable are you eating in restaurants or public situations?

__ Very comfortable: I have no problem at all

__ Comfortable: It's not too much of a problem or embarassment for me

__ Slightly uncomfortable: I sometimes feel it a hassle or embarassing to ask about or identify gluten-free food

_x_ Uncomfortable: I often feel it a hassle or embarassing to ask about or identify gluten-free food

__ Very uncomfortable: I avoid dining in public situations if at all possible

11. If you ever do feel uncomfortable, where and why exactly does this usually happen? Embarrassed to ask for gluten free food because someone will always ask, "What will happen if you eat gluten?" Not exactly good dinner conversation.

12. How do you deal with situations in which you must dine out?

__ Don't eat

_x_ Only eat what you know or can assume is gluten free

__ Eat what they have out of politeness, even if it may contain gluten

__ Ask for a gluten free dish

__ Other :

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accomodating to gluten free requests? No. They look at me like I am crazy.

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it? Yes

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.) Size and accuracy. Also price.

16. What aspects might make you refrain from using it? If it was too expensive or not durable.

17. About how much would you be willing to spend on a device like this? $300

18. Would you be willing to participate in later product testing and further interviewing as this project develops? yes

[Gabel]

Thank you so much to everyone who has responded so far! And to answer celiac3270's question, No, I am not celiac. However, most of my boyfriend's family is and I have seen how they have suffered from it for the past 4 years. I did a lot of contemplating before deciding what to focus my project on and chose this because most people don't know much, if anything, about it yet so there really isn't much out there for individuals who are celiac. My ultimate goal is to increase celiac awareness as well as improve the everyday lives of those who suffer from it, if only to make them more comfortable dining out.

[stef-the-kicking-cuty]

1. sex: female

2. age: 28

3. ethnic group: Caucasian

4. age at which you were diagnosed: 27

5. How did you feel when you were diagnosed?

I had so much pain and looked for the "right" thing for about 7 years, that I was glad, when we found it out finally.

6. Did you have health problems in childhood? Yes

7. How well do you maintain a gluten-free diet?

X I absolutely never eat gluten

__ I very rarely eat gluten that I know of

__ I try not to eat gluten but I sometimes cheat or don't know

__ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?X Price of gluten-free food

X Availability of gluten-free food

X Taste of gluten-free food

__ Preparation of gluten-free food

X Public awareness of gluten intolerance/celiac disease

__ Knowing and understanding what foods you can and cannot eat

__ Reading and memorizing labeling on foods

X Dining out

X Traveling

__ Other:

9. What type of symptoms do you face when gluten is ingested?

X nausea/vomiting

X diarrhoea

__ mouth ulcers

X stomach pains

X fatigue/tiredness

X other(s) : joint pain, bone pain, muscle fatigue (don't know, if that's said right), dizzy, really bad mood swings, mostly sad and frustrated, sometimes real b%$@#y, weakness, tired all the time

10. How comfortable are you eating in restaurants or public situations?

__ Very comfortable: I have no problem at all

__ Comfortable: It's not too much of a problem or embarassment for me

__ Slightly uncomfortable: I sometimes feel it a hassle or embarassing to ask about or identify gluten-free food

__ Uncomfortable: I often feel it a hassle or embarassing to ask about or identify gluten-free food

X Very uncomfortable: I avoid dining in public situations if at all possible, I try to only eat out, when I know, they have a glutenfree menu

11. If you ever do feel uncomfortable, where and why exactly does this usually happen? When i'm at a place, where the waiter/waitress has absolutely no clue about celiac and it's too busy at that place to explain

12. How do you deal with situations in which you must dine out?

__ Don't eat

__ Only eat what you know or can assume is gluten free

__ Eat what they have out of politeness, even if it may contain gluten

X Ask for a gluten free dish

X Other : Or only try to go to restaurants that have a glutenfree menu

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accomodating to gluten free requests? Aware, absolutely not. Accomodating, at least they try.

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it? Yes

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.) Accuracy and speed

16. What aspects might make you refrain from using it? If it's too expensive and/or too inaccurate and/or slow. If you can only use it one time.

17. About how much would you be willing to spend on a device like this? Not more than $ 50, less would be even better

18. Would you be willing to participate in later product testing and further interviewing as this project develops? Yes, but only if I wouldn't have to eat gluten.

[Guest ~wAvE WeT sAnD~]

Questions:

1. sex: Female

2. age: 21

3. ethnic group: Causasian

4. age at which you were diagnosed: 21 (July '04)

5. How did you feel when you were diagnosed? Crappy--this was shortly after I vomited most of my meals for the previous five months up to my diagnosis. It sucked.

6. Did you have health problems in childhood? Not really.

7. How well do you maintain a gluten-free diet?

*I absolutely never eat gluten--except for two slip-ups in the initial phase.

__ I very rarely eat gluten that I know of

__ I try not to eat gluten but I sometimes cheat or don't know

___ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

__ Price of gluten-free food

__ Availability of gluten-free food

__ Taste of gluten-free food

__ Preparation of gluten-free food

*Public awareness of gluten intolerance/celiac disease

__Knowing and understanding what foods you can and cannot eat

__ Reading and memorizing labeling on foods

* Dining out

__ Traveling

__ Other:

9. What type of symptoms do you face when gluten is ingested?

* nausea/vomiting

*diarrhoea

__ mouth ulcers

__ stomach pains

*fatigue/tiredness

*other(s) : Constipation

10. How comfortable are you eating in restaurants or public situations?

__ Very comfortable: I have no problem at all

__ Comfortable: It's not too much of a problem or embarassment for me

*Slightly uncomfortable: I never know how the personnel will react.

__ Uncomfortable: I often feel it a hassle or embarassing to ask about or identify gluten-free food

__ Very uncomfortable: I avoid dining in public situations if at all possible

11. If you ever do feel uncomfortable, where and why exactly does this usually happen? Wow...a lot of places, specifically Applebee's.

12. How do you deal with situations in which you must dine out?

__ Don't eat

__ Only eat what you know or can assume is gluten free

__ Eat what they have out of politeness, even if it may contain gluten

*Ask for a gluten free dish

__ Other :

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accomodating to gluten free requests? Generally, yes. Sometimes they get confused, but I try my best to help them.

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it? If it were proven to be accurate, yes.

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.) I'd like it to be digital, and give a quick reading.

16. What aspects might make you refrain from using it? If it isn't approved, and the fact that it sounds too good to be true.

17. About how much would you be willing to spend on a device like this? Not a lot---and since I have my own insurance plan, medical plans should cover it.

18. Would you be willing to participate in later product testing and further interviewing as this project develops? No.

Thank you once again! Any further questions or comments may be posted or e-mailed to gabel@uiuc.edu.

[darlindeb25]

Questions:

1. sex: female

2. age: 49

3. ethnic group: white

4. age at which you were diagnosed: 45

5. How did you feel when you were diagnosed? overwhelmed and yet happy to know that there was finally an answer

6. Did you have health problems in childhood? yes--always nervous tummy

7. How well do you maintain a gluten-free diet?

_x_ I absolutely never eat gluten

__ I very rarely eat gluten that I know of

__ I try not to eat gluten but I sometimes cheat or don't know

__ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

_x_ Price of gluten-free food

_x_ Availability of gluten-free food

_x_ Taste of gluten-free food

__ Preparation of gluten-free food

__ Public awareness of gluten intolerance/celiac disease

__ Knowing and understanding what foods you can and cannot eat

__ Reading and memorizing labeling on foods

_x_ Dining out

__ Traveling

__ Other:

9. What type of symptoms do you face when gluten is ingested?

_x_ nausea/vomiting

_x_ diarrhoea

_x_ mouth ulcers

_x_ stomach pains

_x_ fatigue/tiredness

__ other(s) :

10. How comfortable are you eating in restaurants or public situations?

__ Very comfortable: I have no problem at all

__ Comfortable: It's not too much of a problem or embarassment for me

__ Slightly uncomfortable: I sometimes feel it a hassle or embarassing to ask about or identify gluten-free food

__ Uncomfortable: I often feel it a hassle or embarassing to ask about or identify gluten-free food

_x_ Very uncomfortable: I avoid dining in public situations if at all possible

11. If you ever do feel uncomfortable, where and why exactly does this usually happen? i dont trust strangers with my food

12. How do you deal with situations in which you must dine out?

__ Don't eat

_x_ Only eat what you know or can assume is gluten free

__ Eat what they have out of politeness, even if it may contain gluten

__ Ask for a gluten free dish

__ Other :

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accomodating to gluten free requests? sometimes

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it? yes

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.) small, very accurate, and low in cost

16. What aspects might make you refrain from using it? too high a price tag

17. About how much would you be willing to spend on a device like this? its time someone invent something for us that isnt costly

18. Would you be willing to participate in later product testing and further interviewing as this project develops? yes always willing to help out

good luck with this--you will recieve many responses--we all want more awareness out there--thank you for helping us----deb

[plantime]

1. sex:f

2. age:40

3. ethnic group:caucasian

4. age at which you were diagnosed:40

5. How did you feel when you were diagnosed?miserable. I hurt constantly.

6. Did you have health problems in childhood?no more than any other child

7. How well do you maintain a gluten-free diet?

XX I absolutely never eat gluten

__ I very rarely eat gluten that I know of

__ I try not to eat gluten but I sometimes cheat or don't know

__ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

XX Price of gluten-free food

XX Availability of gluten-free food

XX Taste of gluten-free food

__ Preparation of gluten-free food

__ Public awareness of gluten intolerance/celiac disease

__ Knowing and understanding what foods you can and cannot eat

__ Reading and memorizing labeling on foods

__ Dining out

__ Traveling

__ Other:

9. What type of symptoms do you face when gluten is ingested?

__ nausea/vomiting

XX diarrhoea

__ mouth ulcers

XX stomach pains

XX fatigue/tiredness

XX other(s) : about 10 days after consumption, I get severely depressed and suicidal

10. How comfortable are you eating in restaurants or public situations?

__ Very comfortable: I have no problem at all

XX Comfortable: It's not too much of a problem or embarassment for me

__ Slightly uncomfortable: I sometimes feel it a hassle or embarassing to ask about or identify gluten-free food

__ Uncomfortable: I often feel it a hassle or embarassing to ask about or identify gluten-free food

__ Very uncomfortable: I avoid dining in public situations if at all possible

11. If you ever do feel uncomfortable, where and why exactly does this usually happen?

12. How do you deal with situations in which you must dine out?

__ Don't eat

__ Only eat what you know or can assume is gluten free

__ Eat what they have out of politeness, even if it may contain gluten

XX Ask for a gluten free dish

__ Other :

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accomodating to gluten free requests? not necessarily aware, but very accomodating after I explain it

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it? If it is a 100% reliable test, yes.

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.) it would have to fit into my purse, be 100% accurate, and take only a few minutes.

16. What aspects might make you refrain from using it? If it makes a lot of noise or takes more than 5 min to test.

17. About how much would you be willing to spend on a device like this?$100-$200

18. Would you be willing to participate in later product testing and further interviewing as this project develops? Yes.

[luvs2eat]

1. sex: F

2. age: 52

3. ethnic group: white (of Irish decent... my doc said that was common in celiacs.

4. age at which you were diagnosed: 48

5. How did you feel when you were diagnosed? really sad... homemade bread is my favorite food.

6. Did you have health problems in childhood? Nope. I remember an episode when I was 5 when there was a question of my being allergic to wheat but I wasn't sickly or skinny and nothing ever came of it.

7. How well do you maintain a gluten-free diet?

__ I absolutely never eat gluten

_x_ I very rarely eat gluten that I know of

__ I try not to eat gluten but I sometimes cheat or don't know

__ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

__ Price of gluten-free food

_x_ Availability of gluten-free food

_x_ Taste of gluten-free food

__ Preparation of gluten-free food

__ Public awareness of gluten intolerance/celiac disease

__ Knowing and understanding what foods you can and cannot eat

__ Reading and memorizing labeling on foods

__ Dining out

__ Traveling

__ Other:

9. What type of symptoms do you face when gluten is ingested?

__ nausea/vomiting

_x_ diarrhoea

__ mouth ulcers

__ stomach pains

_x_ fatigue/tiredness

__ other(s) :

10. How comfortable are you eating in restaurants or public situations?

__ Very comfortable: I have no problem at all

_x_ Comfortable: It's not too much of a problem or embarassment for me

__ Slightly uncomfortable: I sometimes feel it a hassle or embarassing to ask about or identify gluten-free food

__ Uncomfortable: I often feel it a hassle or embarassing to ask about or identify gluten-free food

__ Very uncomfortable: I avoid dining in public situations if at all possible

11. If you ever do feel uncomfortable, where and why exactly does this usually happen?

12. How do you deal with situations in which you must dine out?

__ Don't eat

_x_ Only eat what you know or can assume is gluten free

__ Eat what they have out of politeness, even if it may contain gluten

__ Ask for a gluten free dish

__ Other :

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accomodating to gluten free requests? Most are clueless. I've been told things contain no wheat to have it come out breaded! I explain that I can't have anything with any kind of flour.

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it? I might, but probably not. I pretty much know what's gluten-free and what's suspicious.

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.) the cost, I guess

16. What aspects might make you refrain from using it? Don't see much of a need.

17. About how much would you be willing to spend on a device like this? not much

18. Would you be willing to participate in later product testing and further interviewing as this project develops? if it's free? Sure.

[capawa]

1. sex: F

2. age: 50

3. ethnic group: white

4. age at which you were diagnosed: 48. Just diagnosed as allergic to wheat, oats and barley. Suffer migraines when I eat anything with the above.

5. How did you feel when you were diagnosed? confused when shopping.

6. Did you have health problems in childhood? Nope.

7. How well do you maintain a gluten-free diet?

__ I absolutely never eat gluten

_x_ I very rarely eat gluten that I know of

__ I try not to eat gluten but I sometimes cheat or don't know

__ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

__ Price of gluten-free food

_x_ Availability of gluten-free food

_x_ Taste of gluten-free food

__ Preparation of gluten-free food

_x_ Public awareness of gluten intolerance/celiac disease

_x_ Knowing and understanding what foods you can and cannot eat

__ Reading and memorizing labeling on foods

__ Dining out

__ Traveling

__ Other:

9. What type of symptoms do you face when gluten is ingested?

__ nausea/vomiting

__ diarrhoea

__ mouth ulcers

__ stomach pains

__ fatigue/tiredness

_x_ other(s) :

10. How comfortable are you eating in restaurants or public situations?

__ Very comfortable: I have no problem at all

__ Comfortable: It's not too much of a problem or embarassment for me

_x_ Slightly uncomfortable: I sometimes feel it a hassle or embarassing to ask about or identify gluten-free food

__ Uncomfortable: I often feel it a hassle or embarassing to ask about or identify gluten-free food

__ Very uncomfortable: I avoid dining in public situations if at all possible

11. If you ever do feel uncomfortable, where and why exactly does this usually happen? Some restaurants do not understand what items have gluten.

12. How do you deal with situations in which you must dine out?

__ Don't eat

_x_ Only eat what you know or can assume is gluten free

__ Eat what they have out of politeness, even if it may contain gluten

__ Ask for a gluten free dish

__ Other :

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accomodating to gluten free requests? Most are clueless. I've been told things contain no wheat to have it come out breaded! I explain that I can't have anything with any kind of flour and they look at me like I'm nuts when I tell them the breading has flour.

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it? Yes.

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.) speed and cost.

16. What aspects might make you refrain from using it? If it is bulky and costly.

17. About how much would you be willing to spend on a device like this? not much

18. Would you be willing to participate in later product testing and further interviewing as this project develops? Sure.

[cdford]

Questions:

1. sex: Female

2. age: 46

3. ethnic group: Caucasian

4. age at which you were diagnosed:44

5. How did you feel when you were diagnosed? I was already disabled with the consequences, so finding the real culprit was a relief especially since it was something that I could control and it was not a death sentence.

6. Did you have health problems in childhood? Yes, but we did not have any idea what was causing them.

7. How well do you maintain a gluten-free diet?

X__ I absolutely never eat gluten

__ I very rarely eat gluten that I know of

__ I try not to eat gluten but I sometimes cheat or don't know

__ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

X__ Price of gluten-free food

__ Availability of gluten-free food

__ Taste of gluten-free food

__ Preparation of gluten-free food

_X_ Public awareness of gluten intolerance/celiac disease

__ Knowing and understanding what foods you can and cannot eat

X__ Reading and memorizing labeling on foods

_X_ Dining out

_X_ Traveling

__ Other:

9. What type of symptoms do you face when gluten is ingested?

X__ nausea/vomiting

X__ diarrhoea

X__ mouth ulcers

X__ stomach pains

X__ fatigue/tiredness

X__ other(s) : skin outbreaks of DH, neuropathy, tetany, mental difficulties

10. How comfortable are you eating in restaurants or public situations?

__ Very comfortable: I have no problem at all

X__ Comfortable: It's not too much of a problem or embarassment for me

__ Slightly uncomfortable: I sometimes feel it a hassle or embarassing to ask about or identify gluten-free food

__ Uncomfortable: I often feel it a hassle or embarassing to ask about or identify gluten-free food

__ Very uncomfortable: I avoid dining in public situations if at all possible

11. If you ever do feel uncomfortable, where and why exactly does this usually happen?

There are some people in restaurants who act as if I have made some horrible request or insulted them by showing my card. Ignorance of the employees can also be an issue

[kabowman]

1. sex: Female

2. age: 38

3. ethnic group: Caucasian

4. age at which you were diagnosed:

Self-diagnosed between 32-38 YO

5. How did you feel when you were diagnosed?

Depressed because of lack of food choices, Great because no longer so sick

6. Did you have health problems in childhood?

Some food isses that were never identified.

7. How well do you maintain a gluten-free diet?

_X_ I absolutely never eat gluten

__ I very rarely eat gluten that I know of

__ I try not to eat gluten but I sometimes cheat or don't know

__ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

__ Price of gluten-free food

_X_ Availability of gluten-free food

__ Taste of gluten-free food

__ Preparation of gluten-free food

__ Public awareness of gluten intolerance/celiac disease

__ Knowing and understanding what foods you can and cannot eat

__ Reading and memorizing labeling on foods

__ Dining out

_X_ Traveling

__ Other:

9. What type of symptoms do you face when gluten is ingested?

__ nausea/vomiting

_X_ diarrhoea

__ mouth ulcers

_X_ stomach pains

_X_ fatigue/tiredness

_X_ other(s) : arthritis

10. How comfortable are you eating in restaurants or public situations?

__ Very comfortable: I have no problem at all

_X_ Comfortable: It's not too much of a problem or embarassment for me

__ Slightly uncomfortable: I sometimes feel it a hassle or embarassing to ask about or identify gluten-free food

__ Uncomfortable: I often feel it a hassle or embarassing to ask about or identify gluten-free food

__ Very uncomfortable: I avoid dining in public situations if at all possible

11. If you ever do feel uncomfortable, where and why exactly does this usually happen? If I have to send food back because it came with bread/cheese/etc.

12. How do you deal with situations in which you must dine out?

__ Don't eat

__ Only eat what you know or can assume is gluten free

__ Eat what they have out of politeness, even if it may contain gluten

__ Ask for a gluten free dish

_X_ Other :

If we dine out by choice, I take a dining card with all intolerances and share with server to share with cook and let them know right away that I am "the problem child" since we eat out with three kids...

If a family event and gluten-free (and all other food is not available or the resturaunt will not cook for me, then I don't eat and just visit with family. Sometimes I can have a salad.

Most people (friends & co-workers) we eat with think the card is a great idea.

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accomodating to gluten free requests?

If not aware then willing (of course I only go by choice to a place I have called and asked if they will cook for my problem diet - some say no, some say yes, those that say yes, get our business)

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it?

Probably not due to many other food intolerances.

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.)

16. What aspects might make you refrain from using it?

17. About how much would you be willing to spend on a device like this?

18. Would you be willing to participate in later product testing and further interviewing as this project develops?

[Carriefaith]

1. sex: female

2. age: 23

3. ethnic group: Caucasian

4. age at which you were diagnosed: 22

5. How did you feel when you were diagnosed? At first I was shocked and upset but I went out and got a lot of information and strating felling better about the whole thing.

6. Did you have health problems in childhood? minor but yes

7. How well do you maintain a gluten-free diet? I absolutely never eat gluten

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

Price of gluten-free food

Public awareness of gluten intolerance/celiac disease

Dining out

Traveling

9. What type of symptoms do you face when gluten is ingested?

nausea/vomiting

diarrhea

stomach pains

fatigue/tiredness

10. How comfortable are you eating in restaurants or public situations?

Very uncomfortable: I avoid dining in public situations if at all possible

11. If you ever do feel uncomfortable, where and why exactly does this usually happen?

I'm afraid that I will get gluten contamination. Once at the outback steakhouse I ordered a gluten free menu and got VERY sick. It's not that I am embaressed, it's just that I find it very hard to trust that my meal is gluten free.

12. How do you deal with situations in which you must dine out?

I have to be 10000% postive it is gluten free

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accomodating to gluten free requests?

I don't eat out very often (I haven't eaten in a restaurant for months).

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it?

yes

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.)

anything! as long as it worked

16. What aspects might make you refrain from using it?

if it didn't work

17. About how much would you be willing to spend on a device like this?

$25-$50

18. Would you be willing to participate in later product testing and further interviewing as this project develops?

yes

[Guest laughs8]

Questions:

1. sex: F

2. age: 19

3. ethnic group: Caucasian

4. age at which you were diagnosed: 17

5. How did you feel when you were diagnosed? Fine, aside from joint pain and mild fatigue

6. Did you have health problems in childhood? No

7. How well do you maintain a gluten-free diet?

X I absolutely never eat gluten

__ I very rarely eat gluten that I know of

__ I try not to eat gluten but I sometimes cheat or don't know

__ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

__ Price of gluten-free food

__ Availability of gluten-free food

__ Taste of gluten-free food

__ Preparation of gluten-free food

X Public awareness of gluten intolerance/celiac disease

X Knowing and understanding what foods you can and cannot eat

__ Reading and memorizing labeling on foods

X Dining out

X Traveling

__ Other:

9. What type of symptoms do you face when gluten is ingested?

__ nausea/vomiting

__ diarrhoea

__ mouth ulcers

X stomach pains

X fatigue/tiredness

X other(s) : I have a feeling that if I accidentally ingest a little gluten, I am asymptomatic

10. How comfortable are you eating in restaurants or public situations?

__ Very comfortable: I have no problem at all

__ Comfortable: It's not too much of a problem or embarassment for me

X Slightly uncomfortable: I sometimes feel it a hassle or embarassing to ask about or identify gluten-free food

X Uncomfortable: I often feel it a hassle or embarassing to ask about or identify gluten-free food

__ Very uncomfortable: I avoid dining in public situations if at all possible

**It is often/always a hassle, but it's a hassle I've become comfortable with.

11. If you ever do feel uncomfortable, where and why exactly does this usually happen?

There are times when people do not under

12. How do you deal with situations in which you must dine out?

__ Don't eat

X Only eat what you know or can assume is gluten free

__ Eat what they have out of politeness, even if it may contain gluten

__ Ask for a gluten free dish

X Other : ask a lot of questions!

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accomodating to gluten free requests?

Aware-no, accomodating-yes

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it? YES

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.) all of the above

16. What aspects might make you refrain from using it? I suppose if it was too big/too costly per use

17. About how much would you be willing to spend on a device like this? Depends on the accuracy and the portability, and also how long it would work for...but probably quite a bit.

18. Would you be willing to participate in later product testing and further interviewing as this project develops? Yes

[kschmitz]

Questions:

1. sex: Female

2. age: 56

3. ethnic group: Caucasian

4. age at which you were diagnosed: 56

5. How did you feel when you were diagnosed? Complete surprise, since no one else in my extended family had ever had this dx.

6. Did you have health problems in childhood? No

7. How well do you maintain a gluten-free diet?

_X_ I absolutely never eat gluten

__ I very rarely eat gluten that I know of

__ I try not to eat gluten but I sometimes cheat or don't know

__ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

__ Price of gluten-free food

__ Availability of gluten-free food

_X_ Taste of gluten-free food

_X_ Preparation of gluten-free food

__ Public awareness of gluten intolerance/celiac disease

__ Knowing and understanding what foods you can and cannot eat

__ Reading and memorizing labeling on foods

_X_ Dining out

_X_ Traveling

__ Other:

9. What type of symptoms do you face when gluten is ingested?

__ nausea/vomiting

__ diarrhoea

__ mouth ulcers

_X_ stomach pains

_X_ fatigue/tiredness

__X other(s) : Weight Loss

10. How comfortable are you eating in restaurants or public situations?

__ Very comfortable: I have no problem at all

__ Comfortable: It's not too much of a problem or embarassment for me

_X_ Slightly uncomfortable: I sometimes feel it a hassle or embarassing to ask about or identify gluten-free food

__ Uncomfortable: I often feel it a hassle or embarassing to ask about or identify gluten-free food

__ Very uncomfortable: I avoid dining in public situations if at all possible

11. If you ever do feel uncomfortable, where and why exactly does this usually happen? I am uncomfortable because even if people think they are providing gluten-free food, they do not understand at all the dangers of cross-contamination. It is easier for me to bring my own food then try to explain all the issues.

12. How do you deal with situations in which you must dine out?

__ Don't eat

__ Only eat what you know or can assume is gluten free

__ Eat what they have out of politeness, even if it may contain gluten

_X_ Ask for a gluten free dish

__X Other : Bring my own food.

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accomodating to gluten free requests? Absolutely not.

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it? Yes

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.) Size and weight - to easily fit in a purse or pocket; accuracy - 100% accuracy, because the smallest % of gluten affects me; speed - 60 seconds or less.

16. What aspects might make you refrain from using it? If it was not 100% accurate.

17. About how much would you be willing to spend on a device like this? If it was a one time only cost, up to $100.

18. Would you be willing to participate in later product testing and further interviewing as this project develops? Yes, I would.

[Kels18]

1. sex: F

2. age: 15

3. ethnic group: Caucasian

4. age at which you were diagnosed: 15 months

5. How did you feel when you were diagnosed? Can't remember I was a baby

6. Did you have health problems in childhood? No, not after I was diagnosed.

7. How well do you maintain a gluten-free diet? I never go off the diet.

X I absolutely never eat gluten

__ I very rarely eat gluten that I know of

__ I try not to eat gluten but I sometimes cheat or don't know

__ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

X Price of gluten-free food

__ Availability of gluten-free food

__ Taste of gluten-free food

__ Preparation of gluten-free food

X Public awareness of gluten intolerance/celiac disease

__ Knowing and understanding what foods you can and cannot eat

__ Reading and memorizing labeling on foods

__ Dining out

__ Traveling

__ Other:

9. What type of symptoms do you face when gluten is ingested?

Xnausea/vomiting

__diarrhoea

__ mouth ulcers

stomach pains

fatigue/tiredness

other(s) :

10. How comfortable are you eating in restaurants or public situations?

__ Very comfortable: I have no problem at all

X Comfortable: It's not too much of a problem or embarassment for me

__Slightly uncomfortable: I sometimes feel it a hassle or embarassing to ask about or identify gluten-free food

__Uncomfortable: I often feel it a hassle or embarassing to ask about or identify gluten-free food

__ Very uncomfortable: I avoid dining in public situations if at all possible

__It is often/always a hassle, but it's a hassle I've become comfortable with.

11. If you ever do feel uncomfortable, where and why exactly does this usually happen?

12. How do you deal with situations in which you must dine out?

__ Don't eat

X Only eat what you know or can assume is gluten free

__ Eat what they have out of politeness, even if it may contain gluten

__ Ask for a gluten free dish

__Other

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accomodating to gluten free requests?

Aware-no, accomodating-yes

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it? YES

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.) all of the above

16. What aspects might make you refrain from using it? I suppose if it was too big/too costly per use

17. About how much would you be willing to spend on a device like this? Depends on the accuracy and how portable it was, but if it worked I would deff. consider any price.

18. Would you be willing to participate in later product testing and further interviewing as this project develops? Yes

[patrojan]

1. sex: F

2. age: 33

3. ethnic group: Caucasian (Irish [western], German and Puerto Rican background)

4. age at which you were diagnosed:32

5. How did you feel when you were diagnosed? fine

6. Did you have health problems in childhood? nope

7. How well do you maintain a gluten-free diet?

__ I absolutely never eat gluten

_X_ I very rarely eat gluten that I know of

__ I try not to eat gluten but I sometimes cheat or don't know

__ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

__ Price of gluten-free food

X__ Availability of gluten-free food

X__ Taste of gluten-free food

__ Preparation of gluten-free food

X__ Public awareness of gluten intolerance/celiac disease

__ Knowing and understanding what foods you can and cannot eat

X__ Reading and memorizing labeling on foods

__ Dining out

__ Traveling

__ Other:

9. What type of symptoms do you face when gluten is ingested?

__ nausea/vomiting

__ diarrhoea

__ mouth ulcers

X__ stomach pains

__ fatigue/tiredness

__ other(s) :

10. How comfortable are you eating in restaurants or public situations?

X__ Very comfortable: I have no problem at all

__ Comfortable: It's not too much of a problem or embarassment for me

__ Slightly uncomfortable: I sometimes feel it a hassle or embarassing to ask about or identify gluten-free food

__ Uncomfortable: I often feel it a hassle or embarassing to ask about or identify gluten-free food

__ Very uncomfortable: I avoid dining in public situations if at all possible

11. If you ever do feel uncomfortable, where and why exactly does this usually happen?

12. How do you deal with situations in which you must dine out?

__ Don't eat

X__ Only eat what you know or can assume is gluten free

__ Eat what they have out of politeness, even if it may contain gluten

__ Ask for a gluten free dish

__ Other :

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accomodating to gluten free requests? No

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it? Sure

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.) Pocket-sized, would need 100% accuracy or else my guess is as good as the machines.

16. What aspects might make you refrain from using it? If it were to make me look rather ridiculous while using it.

17. About how much would you be willing to spend on a device like this? Depends upon its accuracy. Maybe $25.00?

18. Would you be willing to participate in later product testing and further interviewing as this project develops? Sure

[celiac3270]

BUMP

(Gabel wanted to reach more people in their 20s...)

EDIT: oops, sorry...didn't realize it would already be at the front from a recent post.

[eeyore]

1. sex: Female

2. age: 13

3. ethnic group: Caucasian

4. age at which you were diagnosed: 12

5. How did you feel when you were diagnosed? I was rather surprised (since no one else in my family has a diagnosis of the sort), but glad since I was only gluten-sensitive (not as advanced as celiac) and that I already knew people who could help me.

6. Did you have health problems in childhood? once had bloody diarrhea (helped by slippery elm and flax oil) as a eighteen-month-old, and have had joint pain and fatigue for about six years

7. How well do you maintain a gluten-free diet?

X I absolutely never eat gluten

__ I very rarely eat gluten that I know of

__ I try not to eat gluten but I sometimes cheat or don't know

__ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

X Price of gluten-free food

__ Availability of gluten-free food

__ Taste of gluten-free food

__ Preparation of gluten-free food

X Public awareness of gluten intolerance/celiac disease

__ Knowing and understanding what foods you can and cannot eat

__ Reading and memorizing labeling on foods

X Dining out

__ Traveling

X Other: Taking my own food to a party, etc.

9. What type of symptoms do you face when gluten is ingested?

__ nausea/vomiting

__ diarrhea

__ mouth ulcers

__ stomach pains

X fatigue/tiredness

X other(s) : joint pain

10. How comfortable are you eating in restaurants or public situations?

__ Very comfortable: I have no problem at all

__ Comfortable: It's not too much of a problem or embarrassment for me

__ Slightly uncomfortable: I sometimes feel it a hassle or embarrassing to ask about or identify gluten-free food

__ Uncomfortable: I often feel it a hassle or embarrassing to ask about or identify gluten-free food

X Very uncomfortable: I avoid dining in public situations if at all possible

11. If you ever do feel uncomfortable, where and why exactly does this usually happen? I usually feel uncomfortable when visiting someone who doesn't know I can't have gluten

12. How do you deal with situations in which you must dine out?

__ Don't eat

__ Only eat what you know or can assume is gluten free

__ Eat what they have out of politeness, even if it may contain gluten

__ Ask for a gluten free dish

X Other : only go to a place that has a gluten free menu

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accommodating to gluten free requests? I haven't been out to eat since the diagnosis

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it? yes

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.) Pocket-sized, very accurate, quick, affordable

16. What aspects might make you refrain from using it? Inaccuracy, expense

17. About how much would you be willing to spend on a device like this? $100

18. Would you be willing to participate in later product testing and further interviewing as this project develops? Perhaps

[kim:)]

Hello, I am a sophomore in Industrial Design at the University of Illinois at Urbana-Champaign developing a product that aims to enhance the lives of individuals on gluten-free diets under the instruction of Assistant Professor Deana McDonagh and Ben Grosser, director of the Beckman Institute of Advanced Science and Technology. Below is a survey I am conducting for those with Celiac disease or gluten intolerance to help me research and figure out how the gluten-free lifestyle can be improved in terms of dining out. Any questions you would be willing to answer would be of significant help to my research and product development. Also, anyone who may feel uncomfortable posting their answers may instead e-mail me at gabel@uiuc.edu.

Thank you all for taking the time to assist me in my research and I will continue to keep you posted on the status of the project as it progresses.

Questions:

1. sex: F

2. age: 15

3. ethnic group:

4. age at which you were diagnosed: 10

5. How did you feel when you were diagnosed? No one else in my family had it so it was a change. I gained 7 pounds the first week! I felt almost 100 percent better in a week!

6. Did you have health problems in childhood? When I was a baby when I ate something, my "stools" didnt look normal. And I had problemos whith gas (this is embarissing) when i was growing up still.

7. How well do you maintain a gluten-free diet? I havent cheated once!! I have my own toaster, butter, peanut butter, jelly..ect. I dont want to get sick!

X I absolutely never eat gluten

__ I very rarely eat gluten that I know of

__ I try not to eat gluten but I sometimes cheat or don't know

__ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

X Price of gluten-free food

__ Availability of gluten-free food

__ Taste of gluten-free food

__ Preparation of gluten-free food

X Public awareness of gluten intolerance/celiac disease

__ Knowing and understanding what foods you can and cannot eat

__ Reading and memorizing labeling on foods

X Dining out

X Traveling

__ Other:

9. What type of symptoms do you face when gluten is ingested?

X nausea, no vomiting

X Diarrhoea

__ mouth ulcers

X stomach pains

X fatigue/tiredness

X other(s) : Weird coughing spells, and a small rash on my hip

10. How comfortable are you eating in restaurants or public situations?

X Very comfortable: I have no problem at all

__ Comfortable: It's not too much of a problem or embarassment for me

__ Slightly uncomfortable: I sometimes feel it a hassle or embarassing to ask about or identify gluten-free food

__ Uncomfortable: I often feel it a hassle or embarassing to ask about or identify gluten-free food

__ Very uncomfortable: I avoid dining in public situations if at all possible

11. If you ever do feel uncomfortable, where and why exactly does this usually happen?

12. How do you deal with situations in which you must dine out?

__ Don't eat

__ Only eat what you know or can assume is gluten free

__ Eat what they have out of politeness, even if it may contain gluten

X Ask for a gluten free dish

__ Other :

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accomodating to gluten free requests? Some are, some have no idea. As more and more people w/ celiac going to restaurants help!

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it? YES! I know what I can have, but it would be nice for like cross contamination.

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.) Small size, as accurate as possible, fast speed, cool colors, reasonable pricing, or else many wont be able to afford it with food and everything

16. What aspects might make you refrain from using it? If i know exactly I can have it, if i dont have it, if it doesnt read accuratly

17. About how much would you be willing to spend on a device like this? 35-45

18. Would you be willing to participate in later product testing and further interviewing as this project develops? Yeah!

Thank you once again! Any further questions or comments may be posted or e-mailed to gabel@uiuc.edu.

[julirama723]

Questions:

1. sex: female

2. age: 27

3. ethnic group: Caucasian (of Northern European and Eastern European descent, Irish/Scottish/Polish/Romanian)

4. age at which you were diagnosed: 27--Mom diagnosed as celiac, self-diagnosed gluten-intolerance (through dietary experiment) currently looking into genetic/stool testing.

5. How did you feel when you were diagnosed? Relieved to know what the heck was going on with me.

6. Did you have health problems in childhood? Projectile vomiting/lactose intolerance as a kid, I was also a VERY "picky" eater, I came down with the "flu" a LOT; Graves Disease as a teenager, problems with overeating/emotional eating as I got older bordering on food addiction.

7. How well do you maintain a gluten-free diet? It's only been a couple of weeks, but...

X I absolutely never eat gluten

__ I very rarely eat gluten that I know of

__ I try not to eat gluten but I sometimes cheat or don't know

__ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

__ Price of gluten-free food

__ Availability of gluten-free food

__ Taste of gluten-free food

__ Preparation of gluten-free food

X Public awareness of gluten intolerance/celiac disease

__ Knowing and understanding what foods you can and cannot eat

__ Reading and memorizing labeling on foods

X Dining out

__ Traveling

__ Other:

9. What type of symptoms do you face when gluten is ingested?

__ nausea/vomiting

__ diarrhoea

__ mouth ulcers

X stomach pains

X fatigue/tiredness

X other(s) : Constipation, bloating, cramping, abdominal distention, gas, brain fog

10. How comfortable are you eating in restaurants or public situations?

__ Very comfortable: I have no problem at all

__ Comfortable: It's not too much of a problem or embarassment for me

__ Slightly uncomfortable: I sometimes feel it a hassle or embarassing to ask about or identify gluten-free food

X Uncomfortable: I often feel it a hassle or embarassing to ask about or identify gluten-free food

__ Very uncomfortable: I avoid dining in public situations if at all possible

11. If you ever do feel uncomfortable, where and why exactly does this usually happen? The menu is gluten-centric, or the restaurant is sub-standard.

12. How do you deal with situations in which you must dine out?

__ Don't eat

X Only eat what you know or can assume is gluten free

__ Eat what they have out of politeness, even if it may contain gluten

__ Ask for a gluten free dish

__ Other :

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accomodating to gluten free requests? It seems most don't know around here.

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it? YES!

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.) It would have to be discrete, affordable, accurate, and fast.

16. What aspects might make you refrain from using it? Price, unreliability, if it's obvious or cumbersome.

17. About how much would you be willing to spend on a device like this? $100

18. Would you be willing to participate in later product testing and further interviewing as this project develops? Yes