School Questionnaire

[ickle-angel23]

i go hinchingbrooke school in huntingdon. For

my school project studying coeliac disease. my dad has it so i think this project would benefit him to. i was wondering if you have a minute please could you fill in this short questionnaire as part of the project.

1. How long have you known you’ve had Coeliac Disease and what is your age (age-optional)?

2. Is it hard to cope with this condition?

Yes No

3. Do you understand what is wrong and what it’s doing to your body?

Yes No

If yes could you briefly tell me what happens to your body if you eat something containing gluten?

4. Do you find it hard to find foods that you like?

Yes No

5. Does anyone else in your family have this condition?

Yes No If yes how many other people?

6. How did you find out that you had it?

Doctor Hospital Other Please State

7. When you go out to dinner do you find it hard to find food that you can eat?

Yes No

8. Do you find there isn’t enough of a variety of foods that you can eat?

Yes No

9. How do you find the price of foods?

Expensive Reasonable Same as everything else Cheap

10. Which Super markets do you find are best for gluten free foods?

Tescos Somerfield Sainsbury’s Waitrose Iceland Asda

Other Please State:

11. Knowing that you have Coeliac disease does it make you feel any different to anyone else?

Yes No Sometimes

Thank you so much to anyone that fills this in!!

[Ursa Major]

1. How long have you known you’ve had Coeliac Disease and what is your age (age-optional)?

I've known about it for a year, and I am 53 years old.

2. Is it hard to cope with this condition?

No, not really, as it was much harder being so sick and not knowing why.

3. Do you understand what is wrong and what it’s doing to your body?

Yes, I do.

If yes could you briefly tell me what happens to your body if you eat something containing gluten?

I will have a reaction in my small intestine, which will cause damage to my villi. But more specifically, my symptoms when I eat gluten are, depression, stomach pain, diarrhea (sometimes a very delayed reaction, after nearly a week), tearing eyes, blurred vision, rashes, general itchiness, joint pain, backaches, headaches.

4. Do you find it hard to find foods that you like?

Yes, because I have so many other intolerances. It would be easy if it was only celiac disease.

5. Does anyone else in your family have this condition?

Yes, but none of them are diagnosed, as they're opposed to testing. My guess is (based on symptoms), that both my parents may have been gluten intolerant, and that four of my six brothers and my sister are as well. Of my five children, I see symptoms in at least three (again, won't be tested), and out of six grandchildren, I think two may have it.

6. How did you find out that you had it?

I diagnosed myself, confirmed by amazing diet response, and affirmed by my doctor.

7. When you go out to dinner do you find it hard to find food that you can eat?

I don't bother going out any more.

8. Do you find there isn’t enough of a variety of foods that you can eat?

I am fine with the variety, really, you get used to it.

9. How do you find the price of foods?

Since I eat only naturally gluten-free foods, the prices are no problem.

10. Which Super markets do you find are best for gluten free foods?

Sobees (in Canada), other than that, bulk food places and health food stores.

11. Knowing that you have Coeliac disease does it make you feel any different to anyone else?

Sometimes

Thank you so much to anyone that fills this in!!

[Sweetfudge]

1. How long have you known you’ve had Coeliac Disease and what is your age (age-optional)?

I'm 22 and I've been sick for 2 years, diagnosed 6 months ago.

2. Is it hard to cope with this condition?

Yes!!

3. Do you understand what is wrong and what it’s doing to your body?

Yes

If yes could you briefly tell me what happens to your body if you eat something containing gluten?

I get gassy, bloated and cramps within an hour. This stays with me for usually 3-5 days, with some constipation and a foggy head.

4. Do you find it hard to find foods that you like?

No, but I get bored with eating the same things.

5. Does anyone else in your family have this condition?

I think so, but no one has been diagnosed yet. I think my brother (age 15), sister (age 21), father (age 48) at least have it. I also have an aunt (age mid-50's) and a cousin (age 25) with "wheat allergies" and many other issues that are actually celiac related.

6. How did you find out that you had it?

Blood work - general physician, after months of mis-diagnosis and me continuing to complain.

7. When you go out to dinner do you find it hard to find food that you can eat?

YES!!

8. Do you find there isn’t enough of a variety of foods that you can eat?

Yes

9. How do you find the price of foods?

Reasonable I suppose, but not gluten-free guaranteed

10. Which Super markets do you find are best for gluten free foods?

Wal-Mart brand products are pretty good about labeling their food gluten-free. Other than that I shop at health food stores and on amazon .com

11. Knowing that you have Coeliac disease does it make you feel any different to anyone else?

Yes, I feel kind of cheated, like I can't enjoy something that I used to love (eating) the same as everyone else. I also feel resentful toward other people when they eat in front of me, like my husband (when he eats fast food or when we go out), and people at school, who can eat whatever they want.

Hope this helps Good luck w/ the paper!

[Guhlia]

1. How long have you known you’ve had Coeliac Disease and what is your age (age-optional)?

I found out that I had Celiac Disease just over two years ago. I am now 28. I have been sickly all my life though, so I'm assuming that I was suffering since birth.

2. Is it hard to cope with this condition?

No - sometimes

3. Do you understand what is wrong and what it’s doing to your body?

Yes

If yes could you briefly tell me what happens to your body if you eat something containing gluten?

the gluten triggers an autoimmune response which damages the villi in my intestine

4. Do you find it hard to find foods that you like?

No - and i'll add that i used to be a very picky eater

5. Does anyone else in your family have this condition?

We don't know yet, in the process of testing.

6. How did you find out that you had it?

Hospital

7. When you go out to dinner do you find it hard to find food that you can eat?

No- i only go to celiac friendly restaurants

8. Do you find there isn’t enough of a variety of foods that you can eat?

No

9. How do you find the price of foods?

Same as everything else- i don't buy a bunch of specialty products

10. Which Super markets do you find are best for gluten free foods?

Other Please State: Wal-mart

11. Knowing that you have Coeliac disease does it make you feel any different to anyone else?

Sometimes

[linds]

1. How long have you known you’ve had Coeliac Disease and what is your age (age-optional)?

-I have been sick for a year and a half and diagnosed for almost 1 month and I am 21

2. Is it hard to cope with this condition?

-sometimes, i think it will get easier with time though.

3. Do you understand what is wrong and what it’s doing to your body?

-yes

If yes could you briefly tell me what happens to your body if you eat something containing gluten?

-by ingesting gluten I will damage the villi in my intestines causing many different unplesant reactions.

4. Do you find it hard to find foods that you like?

-no not really. there are still some things that I wish i could have that you just can't eat.

5. Does anyone else in your family have this condition?

-not in my immediate family but since I have found out we have also found out that one aunt and my grandma suffer from it.

6. How did you find out that you had it?

-blood work tanken by a family practitioner. It was not my primary doctor as I had been through many doctors who all misdiagnosed me.

7. When you go out to dinner do you find it hard to find food that you can eat?

-i haven't gone out to eat yet since being diagnosed.

8. Do you find there isn’t enough of a variety of foods that you can eat?

-no

9. How do you find the price of foods?

-specific gluten free food and baking supplies are more expensive than gluten food. but I eat a lot of meats, fruits, and vegetables.

10. Which Super markets do you find are best for gluten free foods?

-i buy either at Cub grocery store or at the natural health foods store. (I live in a small town, not a lot of options)

11. Knowing that you have Coeliac disease does it make you feel any different to anyone else?

-sometimes

[schuyler]

1. How long have you known you’ve had Coeliac Disease and what is your age (age-optional)?

I was diagnosed 9.5 months ago, but I've been sick since I was a young child. I'm 21 now

2. Is it hard to cope with this condition?

At times. At first I had no problems, but I've recently hit a rough patch.

3. Do you understand what is wrong and what it’s doing to your body?

Yes

If yes could you briefly tell me what happens to your body if you eat something containing gluten?

When I ingest gluten, an autoimmune reaction occurs in which the villi in my intestines are damaged causing multiple problems. I get really bad abdominal pains, diarrhea/constipation (it alternates between the 2), brain fog, fatigue, body aches, arthritis, vomiting and many other unpleasant ploblems.

4. Do you find it hard to find foods that you like?

At first it was a lot of trial and error because most gluten free speciality foods taste like cardboard. Plus I have other food intollerances, so that makes it more difficult. Now I have quite a few brands that I trust and like, so it's not hard now.

5. Does anyone else in your family have this condition?

Yes: my cousin's 3 boys were recently diagnosed (2 by enterolab testing and 1 by positive dietary response). I'm sure that my dad also has it, but he won't go for testing. Also, I just found out that my mom's brother had a wheat allergy as a child that he supposedly outgrew; which I think is celiac. I also think that my mom's grandma had celiac as well. They all have so many of the symptoms.

6. How did you find out that you had it?

Family Dr diagnosed through blood test then a GI confirmed diagnosis through biopsy.

7. When you go out to dinner do you find it hard to find food that you can eat?

Yes, I'm tired of plain salads. My other food intollerances and my semi-vegetarianism make eating out hard.

8. Do you find there isn’t enough of a variety of foods that you can eat?

Not really.

9. How do you find the price of foods?

The speciality foods are a little expensive, but I usually try to eat foods that are naturally free of all of my food intollerances.

10. Which Super markets do you find are best for gluten free foods?

Other Please State: Raley's (California). The Raley's stores near me all have a natural foods section that has a gluten free sub-section that has a lot of gluten free foods.

11. Knowing that you have Coeliac disease does it make you feel any different to anyone else?

Sometimes. I know it shouldn't, but sometimes it does.

Good luck with your project!

[AshleyE]

i go hinchingbrooke school in huntingdon. For

my school project studying coeliac disease. my dad has it so i think this project would benefit him to. i was wondering if you have a minute please could you fill in this short questionnaire as part of the project.

1. How long have you known you’ve had Coeliac Disease and what is your age (age-optional)?

For about 6 months, I am 24

2. Is it hard to cope with this condition?

Overall, no, but I have "bad days" where I really crave gluten-filled treats like pastries and croissants. I never would dream of giving in to the cravings though.

3. Do you understand what is wrong and what it’s doing to your body?

Yes, I've done a lot of reading on it.

If yes could you briefly tell me what happens to your body if you eat something containing gluten?

The outward physical symptoms for me are diarrhea, stomach cramps, I get a really bad brain fog, I get really moody, as if I have PMS, then for about a week I am seriously lethargic and fatigued.

Even if I don't have obvious symptoms I know that the gluten is damaging my small intestine and preventing me from properly absorbing nutrients.

4. Do you find it hard to find foods that you like?

No, I have just had to experiment with recipes. My tastes have adapted quickly and I don't crave gluten treats as bad as I did at first.

5. Does anyone else in your family have this condition?

Not sure, but my mom has self diagnosed "IBS", which I am pretty sure is coeliac disease.

6. How did you find out that you had it?

After going to different doctors for ten years with no answers my boss finally asked if I had ever heard of coeliac disease. After reading about it and fitting most of the symptoms I tried the diet and have never felt better. All my symptoms went away, plus some that I didn't even realize were symptoms.

7. When you go out to dinner do you find it hard to find food that you can eat?

Yes, I am super worried about cross contamination at restaurants. I prefer to just eat in.

8. Do you find there isn’t enough of a variety of foods that you can eat?

No, there is a gluten free replacement for just about everything.

9. How do you find the price of foods?

Expensive, but I save money on eating out, so it kind of equals out.

10. Which Super markets do you find are best for gluten free foods?

Tescos Somerfield Sainsbury’s Waitrose Iceland Asda

Other Please State:

There is a local store called New Frontiers where I live. I shop there and at Trader Joe's a lot (I am in California, USA)

11. Knowing that you have Coeliac disease does it make you feel any different to anyone else?

Sometimes, like when we have a family get together and I can't eat anything. I don't think that any of my friends and family have reacted negatively to it though. They've all been supportive and have gone out of their way to accomodate my eating needs.

Thank you so much to anyone that fills this in!!

[Adelle]

First, I just want to say how cool it is ur thinking about us! Yay education! *hugs*

1. How long have you known you’ve had Coeliac Disease and what is your age (age-optional)? I've had severe symptoms for 6 years (I am 22) but milder symptoms my entire life.

2. Is it hard to cope with this condition?

It's hard to cope yes, but it's harder to cope with the medical community because rarely do doctors know anything about it!

3. Do you understand what is wrong and what it’s doing to your body?

Yes

If yes could you briefly tell me what happens to your body if you eat something containing gluten?

I have a reaction in my intestine which damages my villi. My symptoms are mood disorders, leg pain, joint pain, sleepiness, general fatigue, weight gain, bloating, extreme acid reflux.

4. Do you find it hard to find foods that you like?

No, I don't really like bread, that and cookies are the hardest stuff to find

5. Does anyone else in your family have this condition?

Yes

If yes how many other people?

My dad, my mom told me he's "allergic to wheat".

6. How did you find out that you had it?

I was looking online for a possible cause to my worsening condition, stumbled upon an article, started the diet that day!

Doctor Hospital Other Please State

Dr reluctantly did a blood test. Came back positive

7. When you go out to dinner do you find it hard to find food that you can eat?

I don't go out to eat

8. Do you find there isn’t enough of a variety of foods that you can eat?

There are enough foods, but sometimes I feel deprived because I can't have certain foods

9. How do you find the price of foods?

Way too expensive.

10. Which Super markets do you find are best for gluten free foods?

Winco foods actually has some gluten-free foods, lifesource is the local market.

11. Knowing that you have Coeliac disease does it make you feel any different to anyone else?

Yes, not so much because of the diet, more because of the physical problems that this disease has left me with (I'm still healing!)

Hope that helped?

[kbtoyssni]

1. How long have you known you

[Guest Norah022]

1. How long have you known you’ve had Coeliac Disease and what is your age (age-optional)?

5 months and I am 21 (got diagnosed the day after my 21st birthday)

2. Is it hard to cope with this condition?

Yes

3. Do you understand what is wrong and what it’s doing to your body?

Yes

If yes could you briefly tell me what happens to your body if you eat something containing gluten?

Stomach craps, nausea, other gastrointestinal issues--since i am recently diagnosed i am still trying to figure out what my symptoms are lol

4. Do you find it hard to find foods that you like?

Yes

5. Does anyone else in your family have this condition?

Yes, my father

6. How did you find out that you had it?

Doctor gave me a blood test

7. When you go out to dinner do you find it hard to find food that you can eat?

Yes

8. Do you find there isn’t enough of a variety of foods that you can eat?

Yes--I eat a lot of rice

9. How do you find the price of foods?

Expensive

10. Which Super markets do you find are best for gluten free foods?

Other Please State: Windfall Market..local store in my hometown, and Walmart Supercenter

11. Knowing that you have Coeliac disease does it make you feel any different to anyone else?

Yes--,my best friends treat me differently because of my diagnosis

[lorka150]

1. How long have you known you’ve had Coeliac Disease and what is your age (age-optional)?

I have known since August, 2005. I am twenty-three.

2. Is it hard to cope with this condition?

No. But I would say sometimes if there was a choice - and not really hard, more just sometimes inconvenient.

3. Do you understand what is wrong and what it’s doing to your body?

Yes

If yes could you briefly tell me what happens to your body if you eat something containing gluten?

Fatigue, brain fog, diarreah about every 1/2 an hour for two days, (and therefore, extreme dehydration), constipation on day three, then loose stools for about days six through ten. Despite extreme fatigue, insomnia. Those are the 'bigger' ones.

4. Do you find it hard to find foods that you like?

Nope. Never.

5. Does anyone else in your family have this condition?

We are unsure, as they went gluten-free the day I was diagnosed. Everyone has an autoimmune disorder, however.

6. How did you find out that you had it?

Health clinic where you go where something is wrong, they test you for about three days for everything under the sun, and then by the end of the week you know. You stay for a week.

7. When you go out to dinner do you find it hard to find food that you can eat?

I never, ever eat out.

8. Do you find there isn’t enough of a variety of foods that you can eat?

No. Anything I missed I learned to re create.

9. How do you find the price of foods?

The same - I ate a lot of fresh produce before and that's all naturally gluten-free. Some of the flours cost more, that's it.

10. Which Super markets do you find are best for gluten free foods?

I live in Canada.

11. Knowing that you have Coeliac disease does it make you feel any different to anyone else?

Well, on the level that I have this and they do not, then I am different. But I don't really feel 'different' per se. To answer this in the yes/no variety, I say 'yes'. To keep it simple.

[debmidge]

i go hinchingbrooke school in huntingdon. For

my school project studying coeliac disease. my dad has it so i think this project would benefit him to. i was wondering if you have a minute please could you fill in this short questionnaire as part of the project.

Thank you so much to anyone that fills this in!!

On behalf of my celiac husband:

1. How long have you known you’ve had Coeliac Disease and what is your age (age-optional)? 3 years; 56 yrs old

2. Is it hard to cope with this condition?

Yes for me due to other food intolerances and other conditions celiac caused.

3. Do you understand what is wrong and what it’s doing to your body?

Yes

If yes could you briefly tell me what happens to your body if you eat something containing gluten?

immune system fires up to kill "gluten virus" and small intestine takes beating while this is going on. There are also chemical reactions in brain. Intestines lose villi or villi become flattened then malabsorption begins.

4. Do you find it hard to find foods that you like?

Yes

5. Does anyone else in your family have this condition? suspect sister does , but she won't get tested

Yes If yes how many other people? 1

6. How did you find out that you had it? got even sicker and went to gastro trained outside of USA

Doctor

7. When you go out to dinner do you find it hard to find food that you can eat? I never go out to dinner; always eat home.

8. Do you find there isn’t enough of a variety of foods that you can eat?

Yes especially breakfast cereals for adults; but also due to my own intolerances

9. How do you find the price of foods? absurdly high pricing

Expensive

10. Which Super markets do you find are best for gluten free foods? Whole Foods and A&P near me

Other Please State:

11. Knowing that you have Coeliac disease does it make you feel any different to anyone else?

Yes

[ravenwoodglass]

i go hinchingbrooke school in huntingdon. For

my school project studying coeliac disease. my dad has it so i think this project would benefit him to. i was wondering if you have a minute please could you fill in this short questionnaire as part of the project.

1. How long have you known you’ve had Coeliac Disease and what is your age (age-optional)?

I have had full blown celiac for over 20 years but was misdiagnosed for 15 of them. I am 50 and my first symptoms of celiac were at age 4.

2. Is it hard to cope with this condition?

No Not once it is diagnosed.

3. Do you understand what is wrong and what it’s doing to your body?

Yes and I also understand what years of misdiagnosis did.

If yes could you briefly tell me what happens to your body if you eat something containing gluten?

I get joint and muscle pain, neurological problems (depression and ataxia) and severe stomach pain and diarrhea

4. Do you find it hard to find foods that you like?

No

5. Does anyone else in your family have this condition?

Yes

If yes how many other people?

Whole family diagnosed after me, 4 of us.

6. How did you find out that you had it?

I was diagnosed first by an allergist and a doctor guided true elimination diet, then was confimed by GI. DD diagnosed with blood test and endo, DH and DS through blood tests.

7. When you go out to dinner do you find it hard to find food that you can eat?

I do not eat outside my home anymore, restaurants are clueless.

8. Do you find there isn’t enough of a variety of foods that you can eat?

No

9. How do you find the price of foods?

I buy mainly whole foods so eating is reasonable. gluten-free specific foods are the a bit more pricey but I do not eat many of them.

10. Which Super markets do you find are best for gluten free foods?

Wegmans labels all gluten-free stuff, I stick with them

11. Knowing that you have Coeliac disease does it make you feel any different to anyone else?

No, not anymore than having green eyes does. I believe it to be simply a genetic difference not a defect.

Thank you so much to anyone that fills this in!!

[beaglemania]

1. How long have you known you’ve had Coeliac Disease and what is your age (age-optional)?

14 years old. Known for over a year.

2. Is it hard to cope with this condition?

Yes, it is. Hard to find food, because some places have some items I like to eat, and then I have to go to about 2-3 online food stores to get the food I eat.

3. Do you understand what is wrong and what it’s doing to your body?

Yes, I just get frustrated because I don't show any sign of being glutened and I have always felt fine.

If yes could you briefly tell me what happens to your body if you eat something containing gluten?

I don't really know, once I ate some frys that had been cooked in the same oil as chicken tenders and I had some "D"

4. Do you find it hard to find foods that you like?

Yes, I miss some foods that you can never seem to replace, like soft pretzels, chicken tenders, etc.

5. Does anyone else in your family have this condition?

Yes, my dad.

6. How did you find out that you had it?

Columbus Children's Hospital, Columbus Ohio.

7. When you go out to dinner do you find it hard to find food that you can eat?

Yes, I can't eat the fries at most places, and I love fries, and there's not a whole lot of selection.

8. Do you find there isn’t enough of a variety of foods that you can eat?

No way!!!

9. How do you find the price of foods?

Compare things on internet.

10. Which Super markets do you find are best for gluten free foods?

None really, but I guess if I had to choose I get things at Nutritional World, In Palm Beach, Fl.

11. Knowing that you have Coeliac disease does it make you feel any different to anyone else?

Yes, definitely!!! When I hang out with friends and we want to go get something to eat I feel stupid getting a hamburger w/out the bun, and chicken, w/out the sandwich. Sometimes I forget though I have celiac disease till it comes to food.

Thank you so much to anyone that fills this in!!

Your welcome:)

[wifeandmomofceliac]

i go hinchingbrooke school in huntingdon. For

my school project studying coeliac disease. my dad has it so i think this project would benefit him to. i was wondering if you have a minute please could you fill in this short questionnaire as part of the project.

1. How long have you known you’ve had Coeliac Disease and what is your age (age-optional)?

2. Is it hard to cope with this condition?

Yes No

3. Do you understand what is wrong and what it’s doing to your body?

Yes No

If yes could you briefly tell me what happens to your body if you eat something containing gluten?

4. Do you find it hard to find foods that you like?

Yes No

5. Does anyone else in your family have this condition?

Yes No If yes how many other people?

6. How did you find out that you had it?

Doctor Hospital Other Please State

7. When you go out to dinner do you find it hard to find food that you can eat?

Yes No

8. Do you find there isn’t enough of a variety of foods that you can eat?

Yes No

9. How do you find the price of foods?

Expensive Reasonable Same as everything else Cheap

10. Which Super markets do you find are best for gluten free foods?

Tescos Somerfield Sainsbury’s Waitrose Iceland Asda

Other Please State:

11. Knowing that you have Coeliac disease does it make you feel any different to anyone else?

Yes No Sometimes

Thank you so much to anyone that fills this in!!

1. Answering on behalf of my daughter, she is 8 years old and was diagnosed 7 years ago. (she is almost 9)

2. Yes, it is hard for her to cope with. (Not so bad for me. I am grateful her health does not require surgery or medicine, and can be controlled)

3. At her age, she has very little concept of what this does.

4. No. Some substitutions are better than others, though.

5. Yes, her father also has condition, and suspect the grandfather also.

6. Doctor recommended special diet, she got better.

7. Restaurants are fairly easy once you get used to it. We go to a hadful of restaurants regularly.

8. Plenty of variety. (She has a great mom who cooks lots of things)

9. Yes. The food is much more expensive.

10. Sweet Bay

11. I don't think so at her age, and the friends' parents and teachers are very supportive.