CDF Celiac Patient-Focused Drug Development Survey - Help CDF Make Your Voice Heard at the May 11, 2015 FDA Gastrointestinal Drug Development Meeting

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* 3. In what category is your age?

17 or younger

18-30

31-50

51-64

65 or older

Prefer not to answer

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* 4. Have you received a diagnosis of celiac disease from a healthcare provider?

Yes

Other (please specify)

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* 5. How long did it take from your first symptoms to receive a diagnosis?

Not Diagnosed

0 to 1 Year

1 Year to 2 Years

2 Years to 3 Years

3 Years to 5 Years

More than 5 Years

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* 6. What year were you diagnosed?

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* 7. Of all the symptoms that you experience because of celiac disease, which 1-3 symptoms have the most significant impact on your life?

Abdominal pain

Arthritis

Bloating

Bone or joint pain

Bone loss or osteoporosis

Canker sores inside the mouth

Chronic diarrhea

Constipation

Depression or anxiety

Dermatitis Herpetiformis or skin rash

Difficulty thinking clearly (brain fog)

Fatigue

Flatulence (gas)

Headache

Infertility or recurrent miscarriage

Missed menstrual periods

Nausea

Seizures or migraines

Unexplained iron-deficiency anemia

Vomiting

Weight loss

My symptoms do not impact my life

I have no symptoms

Other (please specify)

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* 8. Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of celiac disease? If so, please list them in the comments section.

Yes

Other (please specify)

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* 9. How do your symptoms and their negative impacts affect your daily life?

I feel limited by the disease

I feel socially stigmatized for having the disease

I feel limited in eating outside of my home

I feel unable to attend social gatherings with friends and family

I feel overwhelmed about having celiac disease

It is difficult to travel/take long trips because of celiac disease

I feel like I think about food all the time

I have missed work days/school days due to illness from eating gluten

I feel misunderstood by my friends/family/significant other

The high cost of gluten-free foods is a financial burden in my life

My daily life is not impacted

Other (please specify)

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* 10. How have your symptoms changed over time?

My symptoms have improved on the gluten-free diet

My symptoms have remained the same since I adopted a gluten-free diet

My symptoms have gotten worse since adopting the gluten-free diet

I have not adopted the gluten-free diet to treat my symptoms

I do not have symptoms

Other (please specify)

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* 11. Do your symptoms come and go or are they ongoing?

Come and go

Ongoing

I have no symptoms

Other (please specify)

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* 12. For how long do you feel negative symptoms if you've been exposed to gluten?

1-2 days

3-4 days

5-6 days

7-10 days

10-14 days

More than 14 days

I do not feel negative symptoms

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* 13. What worries you most about having celiac disease?

I feel that celiac disease is incurable

I am concerned that celiac disease will cause other health problems

I am worried about the increased risk of cancer

I feel I don't know enough about celiac disease

I am worried about the increased risk of a family member having celiac disease

I am concerned that my long-term health will be affected by celiac disease

I have no worries about having celiac disease

I do not have celiac disease

Other (please specify)

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* 14. Have you adopted a strict gluten-free diet?

Yes

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* 15. What are the barriers to adopting a strict gluten-free diet?

Access to gluten-free foods

Cost

Difficulty dining out

Taste

There are no barriers

Other (please specify)

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* 16. What specific symptoms does the gluten-free diet mitigate for you?

Abdominal pain

Arthritis

Bloating

Bone or joint pain

Bone loss or osteoporosis

Canker sores inside the mouth

Chronic diarrhea

Constipation

Depression or anxiety

Dermatitis Herpetiformis or skin rash

Difficulty thinking clearly (brain fog)

Fatigue

Flatulence (gas)

Headache

Infertility or recurrent miscarriage

Missed menstrual periods

Nausea

Seizures or migraines

Unexplained iron-deficiency anemia

Vomiting

Weight loss

The diet does not mitigate any of my symptoms

I have not adopted a gluten-free diet

Other (please specify)

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* 17. On a scale from 1-5, with 1 being not well and 5 being very well, how well does the gluten-free diet treat your most significant symptoms?

I have not adopted a gluten-free diet

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* 18. On a scale from 1-5, with 1 being not well and 5 being very well, how well does the gluten-free diet improve your ability to do specific activities that are important to you in your daily life?

I have not adopted a gluten-free diet

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* 19. Assuming there is no complete cure for celiac disease, what specific things would you look for in an ideal treatment for your condition?

Ability to eat gluten whenever I wanted without symptoms

A backup plan when I get exposed to gluten accidentally to mitigate symptoms

Symptom improvement for my ongoing symptoms that haven't improved on the gluten-free diet

I am not interested in a treatment for celiac disease other than a strict gluten-free diet

I am not interested in a treatment for celiac disease

Other (please specify)

CDF Celiac Patient-Focused Drug Development Survey - Help CDF Make Your Voice Heard at the May 11, 2015 FDA Gastrointestinal Drug Development Meeting

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* 1. Please provide your contact information.

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* 2. What is your gender?

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* 3. In what category is your age?

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* 4. Have you received a diagnosis of celiac disease from a healthcare provider?

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* 5. How long did it take from your first symptoms to receive a diagnosis?

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* 6. What year were you diagnosed?

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* 7. Of all the symptoms that you experience because of celiac disease, which 1-3 symptoms have the most significant impact on your life?

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* 8. Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of celiac disease? If so, please list them in the comments section.

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* 9. How do your symptoms and their negative impacts affect your daily life?

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* 10. How have your symptoms changed over time?

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* 11. Do your symptoms come and go or are they ongoing?

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* 12. For how long do you feel negative symptoms if you've been exposed to gluten?

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* 13. What worries you most about having celiac disease?

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* 14. Have you adopted a strict gluten-free diet?

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* 15. What are the barriers to adopting a strict gluten-free diet?

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* 16. What specific symptoms does the gluten-free diet mitigate for you?

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* 17. On a scale from 1-5, with 1 being not well and 5 being very well, how well does the gluten-free diet treat your most significant symptoms?

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* 18. On a scale from 1-5, with 1 being not well and 5 being very well, how well does the gluten-free diet improve your ability to do specific activities that are important to you in your daily life?

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* 19. Assuming there is no complete cure for celiac disease, what specific things would you look for in an ideal treatment for your condition?