Re: Calling all Silly Yaks ! )

December 1, 2005

Calling all Silly Yaks ! )

Hi all! My name is and I am doing an independent study for my Gifted and Talented class on Celiac Disease. I have recently been diagnosed in August and this forum has been a lifesaver. For my independent study, I need completed surveys from people who have this disease. I can't find many people in my school or community that have this disease so I could use as much help as I can get. Thanks in advance!Independent Study Survey For Those Affected With Celiac Disease1. What is your age? C - 21 A. 12 and younger B. 13-18 C. 19-30 D. 31 or older2. What is your gender? A. Male A. Male B. Female3. What is your description of Celiac Disease? Celiac disease is a hereditary auto-immune disease that is treated by avoiding gluten. The definition of gluten being from barley, rye, oats and wheat. Corn gluten is acceptable. The sensitivity to gluten renders the small intestine unable to absorb nutrients due to inflammation and damage to the intestinal lining. __________________________________________________________________________________________________________________________________________________________________________________________________________________4. What have been your symptoms before diagnosis?__None, except a 10 pound weight loss._______________________________________________________________________________________________________________________________________________________________________________________________________________5. How many people do you know that have Celiac Disease? C A. 0-2 B. 3-6 C. 7-9 D. 10 or above6. How long did it take for Celiac Disease to become your diagnosis? 1-6 months A. 1-6 months B. 7-11 months C. 1 year D. 2 years E. 3 years or longer7. Have you been to a restaurant since you were diagnosed? A. Yes A. Yes B. No8. Have you had any bad experiences with uncooperative restaurants? A. Yes A. Yes B. No9. How long have you been diagnosed and gluten free? D. 3 years A. 1 month or less B. 2-6 months C. 7-12 months D. 2 years or more10. Have you ever heard of Celiac Disease before your diagnosis? A. Yes A. Yes B. No11. Do you think there is enough awareness about Celiac Disease? B. No A. Yes B. No12. Do you eat a lot of mainstream foods? A. Yes A. Yes B. NoAny other comments or opinions?_2006 should be a good year, as the new labeling law takes effect. Awareness of celiac disease is on the increase and more mainstream items are available now. _______________________________________________________________________Shea Brendemuehl from Horicon, Wisconsin ________________________________________________________________________________________________________________________________________________________________________________________________________________Thank You for completing my survey!~

December 1, 2005

Hi ,

Here are my answers:

1. D

2. B

3. Celiac is an autoimmune disorder that symptoms are caused by the

ingestion of any wheat, rye, barley, or malt products. The symptoms of

Celiac are vast and have wide extremes so sometimes diagnosis can be

difficult. However once diagnosed the treatment is completely managable by

diet.

4. Presenting symptoms were lower back pain and mood swings. In hindsight

there were others that I didn't know were there until they went away!!

5. A

6. B

7. A

8. B

9. C

10. A

11. B

12. A

Calling all Silly Yaks ! )

> Hi all! My name is and I am doing an independent study for my

> Gifted and Talented class on Celiac Disease. I have recently been

> diagnosed in August and this forum has been a lifesaver. For my

> independent study, I need completed surveys from people who have this

> disease. I can't find many people in my school or community that

> have this disease so I could use as much help as I can get. Thanks in

> advance!

>

> Independent Study Survey For Those Affected With Celiac Disease

>

> 1. What is your age?

>

> A. 12 and younger B. 13-18 C. 19-30 D. 31

> or older

>

> 2. What is your gender?

>

> A. Male B. Female

>

> 3. What is your description of Celiac Disease?

>

> ______________________________________________________________________

>

> ______________________________________________________________________

>

> ______________________________________________________________________

>

> 4. What have been your symptoms before diagnosis?

>

> ______________________________________________________________________

>

> ______________________________________________________________________

>

> ______________________________________________________________________

>

> 5. How many people do you know that have Celiac Disease?

>

> A. 0-2

> B. 3-6

> C. 7-9

> D. 10 or above

>

> 6. How long did it take for Celiac Disease to become your diagnosis?

>

> A. 1-6 months

> B. 7-11 months

> C. 1 year

> D. 2 years

> E. 3 years or longer

>

> 7. Have you been to a restaurant since you were diagnosed?

>

> A. Yes B. No

>

> 8. Have you had any bad experiences with uncooperative restaurants?

>

> A. Yes B. No

>

> 9. How long have you been diagnosed and gluten free?

>

> A. 1 month or less

> B. 2-6 months

> C. 7-12 months

> D. 2 years or more

>

> 10. Have you ever heard of Celiac Disease before your diagnosis?

>

> A. Yes B. No

>

> 11. Do you think there is enough awareness about Celiac Disease?

>

> A. Yes B. No

>

> 12. Do you eat a lot of mainstream foods?

>

> A. Yes B. No

>

> Any other comments or opinions?

>

> ______________________________________________________________________

>

> ______________________________________________________________________

>

> ______________________________________________________________________

>

> ______________________________________________________________________

>

> Thank You for completing my survey!

>

> ~

>

December 1, 2005

Hi ,

Here are my answers:

1. D

2. B

3. Celiac is an autoimmune disorder that symptoms are caused by the

ingestion of any wheat, rye, barley, or malt products. The symptoms of

Celiac are vast and have wide extremes so sometimes diagnosis can be

difficult. However once diagnosed the treatment is completely managable by

diet.

4. Presenting symptoms were lower back pain and mood swings. In hindsight

there were others that I didn't know were there until they went away!!

5. A

6. B

7. A

8. B

9. C

10. A

11. B

12. A

Calling all Silly Yaks ! )

> Hi all! My name is and I am doing an independent study for my

> Gifted and Talented class on Celiac Disease. I have recently been

> diagnosed in August and this forum has been a lifesaver. For my

> independent study, I need completed surveys from people who have this

> disease. I can't find many people in my school or community that

> have this disease so I could use as much help as I can get. Thanks in

> advance!

>

> Independent Study Survey For Those Affected With Celiac Disease

>

> 1. What is your age?

>

> A. 12 and younger B. 13-18 C. 19-30 D. 31

> or older

>

> 2. What is your gender?

>

> A. Male B. Female

>

> 3. What is your description of Celiac Disease?

>

> ______________________________________________________________________

>

> ______________________________________________________________________

>

> ______________________________________________________________________

>

> 4. What have been your symptoms before diagnosis?

>

> ______________________________________________________________________

>

> ______________________________________________________________________

>

> ______________________________________________________________________

>

> 5. How many people do you know that have Celiac Disease?

>

> A. 0-2

> B. 3-6

> C. 7-9

> D. 10 or above

>

> 6. How long did it take for Celiac Disease to become your diagnosis?

>

> A. 1-6 months

> B. 7-11 months

> C. 1 year

> D. 2 years

> E. 3 years or longer

>

> 7. Have you been to a restaurant since you were diagnosed?

>

> A. Yes B. No

>

> 8. Have you had any bad experiences with uncooperative restaurants?

>

> A. Yes B. No

>

> 9. How long have you been diagnosed and gluten free?

>

> A. 1 month or less

> B. 2-6 months

> C. 7-12 months

> D. 2 years or more

>

> 10. Have you ever heard of Celiac Disease before your diagnosis?

>

> A. Yes B. No

>

> 11. Do you think there is enough awareness about Celiac Disease?

>

> A. Yes B. No

>

> 12. Do you eat a lot of mainstream foods?

>

> A. Yes B. No

>

> Any other comments or opinions?

>

> ______________________________________________________________________

>

> ______________________________________________________________________

>

> ______________________________________________________________________

>

> ______________________________________________________________________

>

> Thank You for completing my survey!

>

> ~

>

December 2, 2005

1. What is your age? C. 19-30 2. What is your gender? B. Female3. What is your description of Celiac Disease?Blood disease- Not tolerant to any gluten from wheat rye barley or oat Not even cross contamination__________________________________________________________________________________________________________________________________________________________________________________________________________4. What have been your symptoms before diagnosis?________Diareah, chronic fatigue, depression,

anxiety, extreme weight loss and mal nutrition __________________________________________________________________________________________________________________________________________________________________________________________________________5. How many people do you know that have Celiac Disease? A. 0-2 6. How long did it take for Celiac Disease to become your diagnosis? E. 3 years or longer7. Have you been to a restaurant since you were diagnosed? A. Yes 8. Have you had any bad experiences with uncooperative restaurants? A.

Yes 9. How long have you been diagnosed and gluten free? C. 7-12 months 10. Have you ever heard of Celiac Disease before your diagnosis? B. No11. Do you think there is enough awareness about Celiac Disease? B. No12. Do you eat a lot of mainstream foods? A. Yes Any other comments or

opinions?________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________Thank You for completing my survey!~

Yahoo! Personals Single? There's someone we'd like you to meet. Lots of someones, actually. Try Yahoo! Personals

December 2, 2005

1. What is your age? C. 19-30 2. What is your gender? B. Female3. What is your description of Celiac Disease?Blood disease- Not tolerant to any gluten from wheat rye barley or oat Not even cross contamination__________________________________________________________________________________________________________________________________________________________________________________________________________4. What have been your symptoms before diagnosis?________Diareah, chronic fatigue, depression,

anxiety, extreme weight loss and mal nutrition __________________________________________________________________________________________________________________________________________________________________________________________________________5. How many people do you know that have Celiac Disease? A. 0-2 6. How long did it take for Celiac Disease to become your diagnosis? E. 3 years or longer7. Have you been to a restaurant since you were diagnosed? A. Yes 8. Have you had any bad experiences with uncooperative restaurants? A.

Yes 9. How long have you been diagnosed and gluten free? C. 7-12 months 10. Have you ever heard of Celiac Disease before your diagnosis? B. No11. Do you think there is enough awareness about Celiac Disease? B. No12. Do you eat a lot of mainstream foods? A. Yes Any other comments or

opinions?________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________Thank You for completing my survey!~

Yahoo! Personals Single? There's someone we'd like you to meet. Lots of someones, actually. Try Yahoo! Personals

December 2, 2005

1. What is your age? C. 19-30 2. What is your gender? B. Female3. What is your description of Celiac Disease?Blood disease- Not tolerant to any gluten from wheat rye barley or oat Not even cross contamination__________________________________________________________________________________________________________________________________________________________________________________________________________4. What have been your symptoms before diagnosis?________Diareah, chronic fatigue, depression,

anxiety, extreme weight loss and mal nutrition __________________________________________________________________________________________________________________________________________________________________________________________________________5. How many people do you know that have Celiac Disease? A. 0-2 6. How long did it take for Celiac Disease to become your diagnosis? E. 3 years or longer7. Have you been to a restaurant since you were diagnosed? A. Yes 8. Have you had any bad experiences with uncooperative restaurants? A.

Yes 9. How long have you been diagnosed and gluten free? C. 7-12 months 10. Have you ever heard of Celiac Disease before your diagnosis? B. No11. Do you think there is enough awareness about Celiac Disease? B. No12. Do you eat a lot of mainstream foods? A. Yes Any other comments or

opinions?________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________Thank You for completing my survey!~

Yahoo! Personals Single? There's someone we'd like you to meet. Lots of someones, actually. Try Yahoo! Personals

December 2, 2005

I sent my answers directly to . But since I've been enjoying

reading others' answers, I wish I hadn't been so private about my

reply.

I like reading others' answers because it's like a mini-bio of

others in the group. I'm especially interested by folks' listing

of presenting symptoms. I was so atypical, it took 20 years to

figure me out.

December 2, 2005

I must have missed the original, can we fill this out if we aren't the Celiac? MY son, who is 4 in 12 days, is the Celiac and I doubt you could decipher his typing! ;-)

From: SillyYaks [mailto:SillyYaks ] On Behalf Of RoperSent: Friday, December 02, 2005 7:28 AMTo: SillyYaks Subject: Re: Calling all Silly Yaks ! )

1. What is your age? C. 19-30

2. What is your gender? B. Female3. What is your description of Celiac Disease?Blood disease- Not tolerant to any gluten from wheat rye barley or oat Not even cross contamination__________________________________________________________________________________________________________________________________________________________________________________________________________4. What have been your symptoms before diagnosis?________Diareah, chronic fatigue, depression, anxiety, extreme weight loss and mal nutrition __________________________________________________________________________________________________________________________________________________________________________________________________________5. How many people do you know that have Celiac Disease? A. 0-2 6. How long did it take for Celiac Disease to become your diagnosis? E. 3 years or longer7. Have you been to a restaurant since you were diagnosed? A. Yes 8. Have you had any bad experiences with uncooperative restaurants? A. Yes 9. How long have you been diagnosed and gluten free? C. 7-12 months 10. Have you ever heard of Celiac Disease before your diagnosis? B. No11. Do you think there is enough awareness about Celiac Disease? B. No12. Do you eat a lot of mainstream foods? A. Yes Any other comments or opinions?________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________Thank You for completing my survey!~

Yahoo! PersonalsSingle? There's someone we'd like you to meet.Lots of someones, actually. Try Yahoo! Personals

December 2, 2005

I must have missed the original, can we fill this out if we aren't the Celiac? MY son, who is 4 in 12 days, is the Celiac and I doubt you could decipher his typing! ;-)

From: SillyYaks [mailto:SillyYaks ] On Behalf Of RoperSent: Friday, December 02, 2005 7:28 AMTo: SillyYaks Subject: Re: Calling all Silly Yaks ! )

1. What is your age? C. 19-30

2. What is your gender? B. Female3. What is your description of Celiac Disease?Blood disease- Not tolerant to any gluten from wheat rye barley or oat Not even cross contamination__________________________________________________________________________________________________________________________________________________________________________________________________________4. What have been your symptoms before diagnosis?________Diareah, chronic fatigue, depression, anxiety, extreme weight loss and mal nutrition __________________________________________________________________________________________________________________________________________________________________________________________________________5. How many people do you know that have Celiac Disease? A. 0-2 6. How long did it take for Celiac Disease to become your diagnosis? E. 3 years or longer7. Have you been to a restaurant since you were diagnosed? A. Yes 8. Have you had any bad experiences with uncooperative restaurants? A. Yes 9. How long have you been diagnosed and gluten free? C. 7-12 months 10. Have you ever heard of Celiac Disease before your diagnosis? B. No11. Do you think there is enough awareness about Celiac Disease? B. No12. Do you eat a lot of mainstream foods? A. Yes Any other comments or opinions?________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________Thank You for completing my survey!~

Yahoo! PersonalsSingle? There's someone we'd like you to meet.Lots of someones, actually. Try Yahoo! Personals

December 2, 2005

I must have missed the original, can we fill this out if we aren't the Celiac? MY son, who is 4 in 12 days, is the Celiac and I doubt you could decipher his typing! ;-)

From: SillyYaks [mailto:SillyYaks ] On Behalf Of RoperSent: Friday, December 02, 2005 7:28 AMTo: SillyYaks Subject: Re: Calling all Silly Yaks ! )

1. What is your age? C. 19-30

2. What is your gender? B. Female3. What is your description of Celiac Disease?Blood disease- Not tolerant to any gluten from wheat rye barley or oat Not even cross contamination__________________________________________________________________________________________________________________________________________________________________________________________________________4. What have been your symptoms before diagnosis?________Diareah, chronic fatigue, depression, anxiety, extreme weight loss and mal nutrition __________________________________________________________________________________________________________________________________________________________________________________________________________5. How many people do you know that have Celiac Disease? A. 0-2 6. How long did it take for Celiac Disease to become your diagnosis? E. 3 years or longer7. Have you been to a restaurant since you were diagnosed? A. Yes 8. Have you had any bad experiences with uncooperative restaurants? A. Yes 9. How long have you been diagnosed and gluten free? C. 7-12 months 10. Have you ever heard of Celiac Disease before your diagnosis? B. No11. Do you think there is enough awareness about Celiac Disease? B. No12. Do you eat a lot of mainstream foods? A. Yes Any other comments or opinions?________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________Thank You for completing my survey!~

Yahoo! PersonalsSingle? There's someone we'd like you to meet.Lots of someones, actually. Try Yahoo! Personals

December 2, 2005

Celiac disease never ceases to amaze me. The information that I get from

this group fascinates me. I feel very lucky that I was diagnosed so quickly

(in comparison to others even though it was the longest year of my life!!!)

but even more so that it was found. My diagnosis was accidental, as I was

being treated for another condition that I still have (endometriosis). There

must have been a guardian angel (and a great primary care doctor who listened

when I said something else was wrong!) looking out for me

On Fri, 02 Dec 2005 12:31:05 -0000, esther_p210 wrote

> I sent my answers directly to . But since I've been enjoying

> reading others' answers, I wish I hadn't been so private about my

> reply.

>

> I like reading others' answers because it's like a mini-bio of

> others in the group. I'm especially interested by folks' listing

> of presenting symptoms. I was so atypical, it took 20 years to

> figure me out.

>

December 2, 2005

Hi ,

Here are my answers to your survey.

Independent Study Survey For Those Affected With Celiac Disease

1. What is your age?

D. 31 or older

2. What is your gender?

B. Female

3. What is your description of Celiac Disease?

Celiac is an autoimmune disease which damages the villi lining the

small intestine with exposure to gluten in wheat, rye and barley.

Symptoms including no symptoms at all appear to vary widely from

person to person. Symptoms are controlled with a gluten free

diet._________________________________________________________________

4. What have been your symptoms before diagnosis?

Before diagnosis I was anemic and clinically depressed, had chronic

diarrhea, some vitamin deficiencies and continuous nausea (especially

on an empty stomach).

5. How many people do you know that have Celiac Disease?

A. 0-2

6. How long did it take for Celiac Disease to become your diagnosis?

E. 3 years or longer

7. Have you been to a restaurant since you were diagnosed?

A. Yes

8. Have you had any bad experiences with uncooperative restaurants?

A. Yes

9. How long have you been diagnosed and gluten free?

C. 7-12 months

10. Have you ever heard of Celiac Disease before your diagnosis?

B. No

11. Do you think there is enough awareness about Celiac Disease?

B. No

12. Do you eat a lot of mainstream foods?

A. Yes

Any other comments or opinions?

I appreciate the work that you are doing for your project. It's

things like this that will help bring about more

awareness.____________________________________________________________

__________

Lori

December 2, 2005

Hi ,

Here are my answers to your survey.

Independent Study Survey For Those Affected With Celiac Disease

1. What is your age?

D. 31 or older

2. What is your gender?

B. Female

3. What is your description of Celiac Disease?

Celiac is an autoimmune disease which damages the villi lining the

small intestine with exposure to gluten in wheat, rye and barley.

Symptoms including no symptoms at all appear to vary widely from

person to person. Symptoms are controlled with a gluten free

diet._________________________________________________________________

4. What have been your symptoms before diagnosis?

Before diagnosis I was anemic and clinically depressed, had chronic

diarrhea, some vitamin deficiencies and continuous nausea (especially

on an empty stomach).

5. How many people do you know that have Celiac Disease?

A. 0-2

6. How long did it take for Celiac Disease to become your diagnosis?

E. 3 years or longer

7. Have you been to a restaurant since you were diagnosed?

A. Yes

8. Have you had any bad experiences with uncooperative restaurants?

A. Yes

9. How long have you been diagnosed and gluten free?

C. 7-12 months

10. Have you ever heard of Celiac Disease before your diagnosis?

B. No

11. Do you think there is enough awareness about Celiac Disease?

B. No

12. Do you eat a lot of mainstream foods?

A. Yes

Any other comments or opinions?

I appreciate the work that you are doing for your project. It's

things like this that will help bring about more

awareness.____________________________________________________________

__________

Lori

December 2, 2005

Hi ,

Here are my answers to your survey.

Independent Study Survey For Those Affected With Celiac Disease

1. What is your age?

D. 31 or older

2. What is your gender?

B. Female

3. What is your description of Celiac Disease?

Celiac is an autoimmune disease which damages the villi lining the

small intestine with exposure to gluten in wheat, rye and barley.

Symptoms including no symptoms at all appear to vary widely from

person to person. Symptoms are controlled with a gluten free

diet._________________________________________________________________

4. What have been your symptoms before diagnosis?

Before diagnosis I was anemic and clinically depressed, had chronic

diarrhea, some vitamin deficiencies and continuous nausea (especially

on an empty stomach).

5. How many people do you know that have Celiac Disease?

A. 0-2

6. How long did it take for Celiac Disease to become your diagnosis?

E. 3 years or longer

7. Have you been to a restaurant since you were diagnosed?

A. Yes

8. Have you had any bad experiences with uncooperative restaurants?

A. Yes

9. How long have you been diagnosed and gluten free?

C. 7-12 months

10. Have you ever heard of Celiac Disease before your diagnosis?

B. No

11. Do you think there is enough awareness about Celiac Disease?

B. No

12. Do you eat a lot of mainstream foods?

A. Yes

Any other comments or opinions?

I appreciate the work that you are doing for your project. It's

things like this that will help bring about more

awareness.____________________________________________________________

__________

Lori

December 2, 2005

Hi ,

>

> Independent Study Survey For Those Affected With Celiac Disease

>

> 1. What is your age?

>

> D. 31 or older - 44

>

> 2. What is your gender?

>

> B. Female

>

> 3. What is your description of Celiac Disease?

>

> An autoimmune disorder where the person cannot digest wheat, rye,

barley, or oats or any derivatives of these. The consumption of gluten

results in damage of the small intestine which causes the inability to

absorb nutrients leading to further damage in the body.

>

> 4. What have been your symptoms before diagnosis?

>

> Stomach pain, nausea, bloating, headaches/migraines, depression,

anxiety, muscle/joint pain, fatigue, dizziness upon changing position,

hemaroids, constipation alternating with loose stools and diarrhea,

> 5. How many people do you know that have Celiac Disease?

>

> A. 0-2

>

> 6. How long did it take for Celiac Disease to become your diagnosis?

>

> E. 3 years or longer ----25 years (self)

>

> 7. Have you been to a restaurant since you were diagnosed?

>

> A. Yes

>

> 8. Have you had any bad experiences with uncooperative restaurants?

>

> B. No - But they are not very informed

>

> 9. How long have you been diagnosed and gluten free?

>

> B. 2-6 months

>

> 10. Have you ever heard of Celiac Disease before your diagnosis?

>

> A. Yes

>

> 11. Do you think there is enough awareness about Celiac Disease?

>

> B. No - Not at all

>

> 12. Do you eat a lot of mainstream foods?

>

> B. No - I am still fairly new at this so I am still weeding things out.

>

> Any other comments or opinions?

>

> The medical practice needs to be " updated " on Celiac Disease. I

ended up figuring it out myself after 25 years. Found a wonderful

N.D. who specializes in Celiac Disease, and got it diagnosed. But I

have suffered with it for so long, I don't know what damage it has

already done to my body. Only time will tell! 8^)

> Thank You for completing my survey!

>

> ~

>

December 2, 2005

Hi ,

>

> Independent Study Survey For Those Affected With Celiac Disease

>

> 1. What is your age?

>

> D. 31 or older - 44

>

> 2. What is your gender?

>

> B. Female

>

> 3. What is your description of Celiac Disease?

>

> An autoimmune disorder where the person cannot digest wheat, rye,

barley, or oats or any derivatives of these. The consumption of gluten

results in damage of the small intestine which causes the inability to

absorb nutrients leading to further damage in the body.

>

> 4. What have been your symptoms before diagnosis?

>

> Stomach pain, nausea, bloating, headaches/migraines, depression,

anxiety, muscle/joint pain, fatigue, dizziness upon changing position,

hemaroids, constipation alternating with loose stools and diarrhea,

> 5. How many people do you know that have Celiac Disease?

>

> A. 0-2

>

> 6. How long did it take for Celiac Disease to become your diagnosis?

>

> E. 3 years or longer ----25 years (self)

>

> 7. Have you been to a restaurant since you were diagnosed?

>

> A. Yes

>

> 8. Have you had any bad experiences with uncooperative restaurants?

>

> B. No - But they are not very informed

>

> 9. How long have you been diagnosed and gluten free?

>

> B. 2-6 months

>

> 10. Have you ever heard of Celiac Disease before your diagnosis?

>

> A. Yes

>

> 11. Do you think there is enough awareness about Celiac Disease?

>

> B. No - Not at all

>

> 12. Do you eat a lot of mainstream foods?

>

> B. No - I am still fairly new at this so I am still weeding things out.

>

> Any other comments or opinions?

>

> The medical practice needs to be " updated " on Celiac Disease. I

ended up figuring it out myself after 25 years. Found a wonderful

N.D. who specializes in Celiac Disease, and got it diagnosed. But I

have suffered with it for so long, I don't know what damage it has

already done to my body. Only time will tell! 8^)

> Thank You for completing my survey!

>

> ~

>

December 2, 2005

Hi ,

>

> Independent Study Survey For Those Affected With Celiac Disease

>

> 1. What is your age?

>

> D. 31 or older - 44

>

> 2. What is your gender?

>

> B. Female

>

> 3. What is your description of Celiac Disease?

>

> An autoimmune disorder where the person cannot digest wheat, rye,

barley, or oats or any derivatives of these. The consumption of gluten

results in damage of the small intestine which causes the inability to

absorb nutrients leading to further damage in the body.

>

> 4. What have been your symptoms before diagnosis?

>

> Stomach pain, nausea, bloating, headaches/migraines, depression,

anxiety, muscle/joint pain, fatigue, dizziness upon changing position,

hemaroids, constipation alternating with loose stools and diarrhea,

> 5. How many people do you know that have Celiac Disease?

>

> A. 0-2

>

> 6. How long did it take for Celiac Disease to become your diagnosis?

>

> E. 3 years or longer ----25 years (self)

>

> 7. Have you been to a restaurant since you were diagnosed?

>

> A. Yes

>

> 8. Have you had any bad experiences with uncooperative restaurants?

>

> B. No - But they are not very informed

>

> 9. How long have you been diagnosed and gluten free?

>

> B. 2-6 months

>

> 10. Have you ever heard of Celiac Disease before your diagnosis?

>

> A. Yes

>

> 11. Do you think there is enough awareness about Celiac Disease?

>

> B. No - Not at all

>

> 12. Do you eat a lot of mainstream foods?

>

> B. No - I am still fairly new at this so I am still weeding things out.

>

> Any other comments or opinions?

>

> The medical practice needs to be " updated " on Celiac Disease. I

ended up figuring it out myself after 25 years. Found a wonderful

N.D. who specializes in Celiac Disease, and got it diagnosed. But I

have suffered with it for so long, I don't know what damage it has

already done to my body. Only time will tell! 8^)

> Thank You for completing my survey!

>

> ~

>

December 2, 2005

I am replying to your study on behalf of

my Son and Husband. I will give the feedback in the same order.

1. What is your age?

A. 12 and

younger

D. 31 or older

2. What is your gender?

B. Male

3. What is your description of Celiac

Disease?

Celiac is a genetically passed, auto-immune

disease which damages the small intestine’s villa whenever gluten, found

in Wheat, Barley, Rye and oats, is

ingested. When damaged, the villa’s ability to perform its job of absorbing

nutrients, is severely compromised. Symptoms of the disease vary, making it

difficult to diagnose. 1 in every 133 people in the US is suspected of having

CD.

4. What have been your symptoms before diagnosis?

Growth failure, distended tummy,

multiple stools a day (though not diarrhea), slick tongue, fatigue, vomiting.

My husband never

knew he had symptoms until after going GF, and then he realized diarrhea wasn’t

normal.

5. How many people do you know that have

Celiac Disease?

B. 3-6

6. How long did it take for Celiac Disease

to become your diagnosis?

A. 1-6 months

E. 3 years or

longer

7. Have you been to a restaurant since you

were diagnosed?

A.

Yes

8. Have you had any bad experiences with

uncooperative restaurants?

A.

Yes

9. How long have you been diagnosed and gluten

free?

D. 2 years or

more

10. Have you ever heard of Celiac Disease

before your diagnosis?

A.

Yes

11. Do you think there is enough awareness

about Celiac Disease?

B. No

12. Do you eat a lot of mainstream foods?

I’m not sure if I would qualify it as “a lot”....since

there aren’t a lot of GF mainstream foods out there. J But yes, we

eat “some” mainstream foods.

December 2, 2005

I am replying to your study on behalf of

my Son and Husband. I will give the feedback in the same order.

1. What is your age?

A. 12 and

younger

D. 31 or older

2. What is your gender?

B. Male

3. What is your description of Celiac

Disease?

Celiac is a genetically passed, auto-immune

disease which damages the small intestine’s villa whenever gluten, found

in Wheat, Barley, Rye and oats, is

ingested. When damaged, the villa’s ability to perform its job of absorbing

nutrients, is severely compromised. Symptoms of the disease vary, making it

difficult to diagnose. 1 in every 133 people in the US is suspected of having

CD.

4. What have been your symptoms before diagnosis?

Growth failure, distended tummy,

multiple stools a day (though not diarrhea), slick tongue, fatigue, vomiting.

My husband never

knew he had symptoms until after going GF, and then he realized diarrhea wasn’t

normal.

5. How many people do you know that have

Celiac Disease?

B. 3-6

6. How long did it take for Celiac Disease

to become your diagnosis?

A. 1-6 months

E. 3 years or

longer

7. Have you been to a restaurant since you

were diagnosed?

A.

Yes

8. Have you had any bad experiences with

uncooperative restaurants?

A.

Yes

9. How long have you been diagnosed and gluten

free?

D. 2 years or

more

10. Have you ever heard of Celiac Disease

before your diagnosis?

A.

Yes

11. Do you think there is enough awareness

about Celiac Disease?

B. No

12. Do you eat a lot of mainstream foods?

I’m not sure if I would qualify it as “a lot”....since

there aren’t a lot of GF mainstream foods out there. J But yes, we

eat “some” mainstream foods.

December 2, 2005

I am replying to your study on behalf of

my Son and Husband. I will give the feedback in the same order.

1. What is your age?

A. 12 and

younger

D. 31 or older

2. What is your gender?

B. Male

3. What is your description of Celiac

Disease?

Celiac is a genetically passed, auto-immune

disease which damages the small intestine’s villa whenever gluten, found

in Wheat, Barley, Rye and oats, is

ingested. When damaged, the villa’s ability to perform its job of absorbing

nutrients, is severely compromised. Symptoms of the disease vary, making it

difficult to diagnose. 1 in every 133 people in the US is suspected of having

CD.

4. What have been your symptoms before diagnosis?

Growth failure, distended tummy,

multiple stools a day (though not diarrhea), slick tongue, fatigue, vomiting.

My husband never

knew he had symptoms until after going GF, and then he realized diarrhea wasn’t

normal.

5. How many people do you know that have

Celiac Disease?

B. 3-6

6. How long did it take for Celiac Disease

to become your diagnosis?

A. 1-6 months

E. 3 years or

longer

7. Have you been to a restaurant since you

were diagnosed?

A.

Yes

8. Have you had any bad experiences with

uncooperative restaurants?

A.

Yes

9. How long have you been diagnosed and gluten

free?

D. 2 years or

more

10. Have you ever heard of Celiac Disease

before your diagnosis?

A.

Yes

11. Do you think there is enough awareness

about Celiac Disease?

B. No

12. Do you eat a lot of mainstream foods?

I’m not sure if I would qualify it as “a lot”....since

there aren’t a lot of GF mainstream foods out there. J But yes, we

eat “some” mainstream foods.

December 2, 2005

>Doing this for my wife the Celiac

>Independent Study Survey For Those Affected With Celiac Disease

>1. What is your age?

> D. 31 or older

>D++

>2. What is your gender?

>

> B. Female

>3. What is your description of Celiac Disease?

>Like the others said - autoimmune disease affecting the vilii in the

>small intestine and, in some cases, provoking DH (dermatitis herpetiform)

>rash and itching all over the body.

>4. What have been your symptoms before diagnosis?

>DH weight loss and diarhea

>5. How many people do you know that have Celiac Disease?

> A. 0-2

> B. 3-6

> C. 7-9

> D. 10 or above

>B (plus members of a support group - went to one meeting)

>6. How long did it take for Celiac Disease to become your diagnosis?

> B. 7-11 months

>7. Have you been to a restaurant since you were diagnosed?

> A. Yes

>8. Have you had any bad experiences with uncooperative restaurants?

> B. No (some told us " go away " )

>9. How long have you been diagnosed and gluten free?

> C. 7-12 months

>10. Have you ever heard of Celiac Disease before your diagnosis?

> A. Yes

>11. Do you think there is enough awareness about Celiac Disease?

> B. No

>12. Do you eat a lot of mainstream foods?

> A. Yes

>What's " mainstream " ? If you mean fresh fruits, vegetables, meat, fish,

>etc. then YES. If you mean prepackaged meals, NO.

--

n : jt@... http://jt-mj.net

In the beautiful Finger Lakes Wine Country of New York State!

-- --

Windows: 50 million flies can't be wrong!

December 2, 2005

Independent Study Survey For Those Affected With Celiac Disease1. What is your age? D. 31 or older2. What is your gender? B. Female3. What is your description of Celiac Disease?

Celiac is a genetic digestive & autoimmune disease in which the body reacts negatively to any form of gluten from wheat, rye, barley, and oats (this one is questionable) by creating antibodies that aren't needed. The antibodies attack the villi of the small intestines and affect the body's means of getting nutritents as well as weakens the immune system.______________________________________________________________________4. What have been your symptoms before diagnosis?

Extreme fatigue, diarrhea, gasiness & bloating, foggy brained, poor memory, bruised easily, no migraine but would have migraine auras of sensitivity to light and sound and smell, arthritic pain in joints esp. knees, and in my case weight gain from always being hungry and eating more than I needed.

5. How many people do you know that have Celiac Disease? B. 3-6 (this doesn't include anyone I've met on these lists, it's just family members) if you include those I've met in person since being diagnosed-- you can probably add about 5 or 6 more). 6. How long did it take for Celiac Disease to become your diagnosis? E. 3 years or longer 7. Have you been to a restaurant since you were diagnosed? A. Yes 8. Have you had any bad experiences with uncooperative restaurants? B. No9. How long have you been diagnosed and gluten free? A. 1 month or less B. 2-6 months C. 7-12 months 10. Have you ever heard of Celiac Disease before your diagnosis? B. No (actually I heard of it shortly before I was tested because my brother was diagnosed first and I researched it for him only to find out I had it too)11. Do you think there is enough awareness about Celiac Disease? B. No12. Do you eat a lot of mainstream foods? A. Yes Any other comments or opinions?Since I was diagnosed some of my other family members were tested. In my immediate household all of our children were negative but we also did genetic testing and two of the 4 children have the gene but are currently negative for blood test. Of my siblings-- 2 of my 4 brothers have celiac disease, one was negative and one has declined to be tested, my sister has wheat allergy. Both my parents were tested and were negative. The doctor thought my dad was the most likely to have it so he did an endoscopy on him and he was negative. However he does have symptoms from eating gluten and went on the diet and has had good results. I think there are still many who may have been given negative results from the endoscopy because they were misread. In my case, my doctor had called and told me I was negative but my tests had been sent to another lab for reading also, and they said my test results and my symptoms were consistent with celiac disease. So three days later my doctor called me back and told me I needed to go on the GF diet. I think if the tests come back negative but the symptoms are continuous and seem to get better when on a trial of the GF diet, that genetic testing should also be included at least to rule out celiac.

December 2, 2005

I am replying to your study on behalf of

my son Trevor

1. What is your age?

A. 12 and

younger

2. What is your gender?

B. Male

3. What is your description of Celiac

Disease?

Celiac is a genetically passed,

auto-immune disease which damages the small intestine’s villa whenever

gluten, found in Wheat, Barley, Rye

and oats, is ingested. When damaged, the villa’s ability to perform its

job of absorbing nutrients, is severely compromised. Symptoms of the disease

vary, making it difficult to diagnose. 1 in every 133 people in the US is suspected

of having CD. I think someone with diabetes is more likely to have it than

the general population-I can’t remember right off the percentage.

Maybe 6%, correct me if I’m wrong.

4. What have been your symptoms before

diagnosis?

One year prior, at age 3 Trevor

was diagnosed with type 1 diabetes, not sure which came first-diabetes or

celiac! Random test blood test for endomysial (sp.) done one year after

diabetes diagnosis (age 4), positive, although the doctor said she would never

have guessed by looking at Trevor. Growth failure (which was

resolved after diabetes diagnosis (5 inches in the first year), very slightly distended tummy, multiple stools a day (light in

color though not diarrhea), dry skin/rash on bottom-we live in Iowa we all have

dry skin somewhere on our body during the winter so we wrote it off as that

initially. Looking back all could have been symptoms. If only we

knew!

5. How many people do you know that have

Celiac Disease?

B. 3-6

and a support group of about 15 additional celiacs we meet with occasionally,

not anyone that is close to Trevor’s age.

6. How long did it take for Celiac Disease

to become your diagnosis?

A. 1-6 months, caught during diabetes screening

7. Have you been to a restaurant since you

were diagnosed?

A.

Yes

8. Have you had any bad experiences with

uncooperative restaurants?

A. Yes-although I think they are just uneducated

rather than uncooperative.

9. How long have you been diagnosed and

gluten free?

D. 2 years or

more

10. Have you ever heard of Celiac Disease

before your diagnosis?

A. NO

11. Do you think there is enough awareness

about Celiac Disease?

B. NO

12. Do you eat a lot of mainstream foods?

Some, definitely more than when we were

initially diagnosed. I remember the dietician sent us home and said the best

thing to do was find another celiac and talk to them. Remember, Iowa, small-town, 2600

people. I (Trevor’s mom) stopped in the grocery store on the way

home and stood reading labels and crying. The manager actually stopped and

asked if he could help me. By that time I had been in the store for quite

awhile. He was a great guy and actually began stocking some health items

for us. 1 month later he called and said that when he went to his state

manager’s meeting they reported during that month, one of the biggest

requests they were getting was for gluten-free items. Thus, the start of

the Hy-Vee gluten free list on their grocery website. Needless to say new

labeling has helped tremendously.

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