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Survey For People With Celiac Disease


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33 replies to this topic

#1 Kayhere512

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Posted 24 October 2010 - 11:52 AM

I'm trying to raise awareness for celiacs disease, and it would help me out a ton if people with celiacs disease can answer these few questions. Thanks

1. Sex: Male or Female
2. Age:
3. How long ago were you diagnosed with celiac disease?
4. Does anyone in your family have celiac disease?
5. How severe is your celiac disease?
6. Is it difficult to eat out at restaurants or anywhere outside of your home?
7. Do you believe that there should be more to be done to make this disease more aware to the public?
8. How has this disease impacted your life?
9. What do you think would make celiac disease easier to deal with?
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#2 Lisa

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Posted 24 October 2010 - 04:00 PM

I'm trying to raise awareness for celiacs disease, and it would help me out a ton if people with celiacs disease can answer these few questions. Thanks

1. Sex: Male or Female
2. Age:
3. How long ago were you diagnosed with celiac disease?
4. Does anyone in your family have celiac disease?
5. How severe is your celiac disease?
6. Is it difficult to eat out at restaurants or anywhere outside of your home?
7. Do you believe that there should be more to be done to make this disease more aware to the public?
8. How has this disease impacted your life?
9. What do you think would make celiac disease easier to deal with?



Hi Kayhere! And Welcome!

What is your avenue of awareness? There are many National Celiac Foundations/Associations that I can hook you up with, if you would like. :)
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#3 Kayhere512

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Posted 24 October 2010 - 04:07 PM

Hi Kayhere! And Welcome!

What is your avenue of awareness? There are many National Celiac Foundations/Associations that I can hook you up with, if you would like. :)



well, i am doing a survey for people who have celiac disease for a report for a class in school. I just need a few people to answer questions about their experience with the disease. i have celiacs myself, which is why i'm so interested in this.
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#4 K8ling

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Posted 24 October 2010 - 04:11 PM

I'm trying to raise awareness for celiacs disease, and it would help me out a ton if people with celiacs disease can answer these few questions. Thanks

1. Sex: Male or Female
2. Age:
3. How long ago were you diagnosed with celiac disease?
4. Does anyone in your family have celiac disease?
5. How severe is your celiac disease?
6. Is it difficult to eat out at restaurants or anywhere outside of your home?
7. Do you believe that there should be more to be done to make this disease more aware to the public?
8. How has this disease impacted your life?
9. What do you think would make celiac disease easier to deal with?


ok, here goes!
1)Female
2)23
3) April 2010
4) nope
5) I am very sensitive. gluten-free communion wafers gave me a reaction.
6) YES!!!
7) \YES! We shouldn't have to constantly explain.
8) Well, we cook everything now...my family eats much healthier. But vacations are impossible and road trips don't happen often.
9) People understanding what is wrong with us. It's NOT in our head.
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Diagnosed with Gluten Allergy April 2010. Family history of Celiac disease and bowel cancers. Already feeling a billion times better since going gluten free.

#5 Lisa

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Posted 24 October 2010 - 04:27 PM

well, i am doing a survey for people who have celiac disease for a report for a class in school. I just need a few people to answer questions about their experience with the disease. i have celiacs myself, which is why i'm so interested in this.



www. Gluten Intolerant Group.com
www. Celiac Disease Foundation.com
www. Celiac Sprue Association.com

www.R.O.C.K.com (Raising Our Celiac Kids)

....Are all great resources for information. The Home Page here always has current news regarding Celiac and Research. You should find some good stuff for your report. Good luck. :)
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#6 Kayhere512

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Posted 24 October 2010 - 04:56 PM

www. Gluten Intolerant Group.com
www. Celiac Disease Foundation.com
www. Celiac Sprue Association.com

www.R.O.C.K.com (Raising Our Celiac Kids)

....Are all great resources for information. The Home Page here always has current news regarding Celiac and Research. You should find some good stuff for your report. Good luck. :)



thank you! this will help me a lot.
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#7 Emilushka

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Posted 24 October 2010 - 04:58 PM

1. Sex: Female

2. Age: 27

3. How long ago were you diagnosed with celiac disease? 1.5 months ago

4. Does anyone in your family have celiac disease? No

5. How severe is your celiac disease? Undetermined, but I don't think I'm super-sensitive. I haven't had any gluten since diagnosis that I know of.

6. Is it difficult to eat out at restaurants or anywhere outside of your home? Yes.

7. Do you believe that there should be more to be done to make this disease more aware to the public? Sure, but I'm also in favor of prioritizing cancer.

8. How has this disease impacted your life? Travel is more difficult. Family get-togethers are more difficult. I'm sick of cooking. I miss pasta with cheese (I'm also dairy-free). But I also feel a ton better on the gluten-free diet, so I'm also grateful for having been diagnosed as quickly as I was.

9. What do you think would make celiac disease easier to deal with? If only I could eat CHEESE! I miss cheese. Otherwise, I honestly think I'm OK with it. Life's not perfect, but I could handle it without bread. I seriously miss dairy a LOT more.
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#8 Glutin-Free Man

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Posted 24 October 2010 - 05:25 PM

I'm trying to raise awareness for celiacs disease, and it would help me out a ton if people with celiacs disease can answer these few questions. Thanks

1. Sex: Male or Female
2. Age:
3. How long ago were you diagnosed with celiac disease?
4. Does anyone in your family have celiac disease?
5. How severe is your celiac disease?
6. Is it difficult to eat out at restaurants or anywhere outside of your home?
7. Do you believe that there should be more to be done to make this disease more aware to the public?
8. How has this disease impacted your life?
9. What do you think would make celiac disease easier to deal with?

1. Male
2. 42
3. Self diagnosed 2 1/2 years ago
4. My uncle had it
5. Most symptoms aren't bad - irritating rather than debilitating. Joint pain is getting worse -- it's the only thing I've missed work for.
6. Yes - gluten-free is getting easier (more restaurants are starting to recognize and have gluten-free menu items), but I'm also dairy free, which makes it a lot harder.
7. Awareness is increasing, but people still only know that it exists, not what the effects are or how long they last. Awareness among doctors would be especially helpful.
8. Travel is difficult. Family dinners, birthday parties, _any_ parties are hard. I feel sick a lot.
9. Easily available food. I basically have to cook everything myself. I'll eat out occasionally, but it's usually not worth the aggravation, worry, and sickness that results.
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Gluten free since 2008; Dairy free since 2009; Nightshade free since 2010
Hopefully done with additional restrictions!

#9 GlutenFreeManna

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Posted 24 October 2010 - 05:33 PM

I'm trying to raise awareness for celiacs disease, and it would help me out a ton if people with celiacs disease can answer these few questions. Thanks

1. Sex: Male or Female

Female

2. Age: 30

3. How long ago were you diagnosed with celiac disease?

10 months ago

4. Does anyone in your family have celiac disease?
No one else is diagnosed, but I think they have it and they refuse to admit it or get testing.

5. How severe is your celiac disease?
I'm very sensitive to cross-contamination.

6. Is it difficult to eat out at restaurants or anywhere outside of your home?
Yes. I only go to a handful of places with gluten free menus and I never eat food at other people's homes even if they tell me it's gluten free. They don't always know how to prepare stuff properly or it may get cc'd by other people at the party.

7. Do you believe that there should be more to be done to make this disease more aware to the public?
Yes. There is a lot of misinformation out there in the few things I have seen on national news programs.

8. How has this disease impacted your life?

I have to carry food with me everywhere and always make everything from scratch at home. I also have disovered other intolerances (lactose and soy) which add to the diffiuclty with eating out. For the better however I am much healthier this way. I was very sick for years before figuring out the gluten thing. I'm very thankful it can be fixed by just changing what I eat instead of having to take medication everyday.

9. What do you think would make celiac disease easier to deal with?
If our culture did not place so much value on eating with other people as a form of bonding. The food is not the hard thing about this disease. The hard thing is how it changes your relationship with gluten eaters. You learn something about who your true friends are. Real friends (and family that cares) will make some accomodations for you sometimes. Although I don't expect them to give up gluten for me or ALWAYS choose a restaurant where I can eat, it's nice when they ask. The people that can't be bothered with that either stop inviting me to things altogether or keep inviting me and get offended that I never come. I have learned from this board that some people get offended when you don't eat their baked goods; I have also learned that some disbelieving realtives will sneak gluten into something and claim it's gluten free in order to "test" you. I'm fortunate to never have had to deal with anyone so callous in my life, but this way of eating has changed the way I make friends and taught me to focus more on activities and less on eating out as an event (something our culture seems to love).


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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#10 zero

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Posted 24 October 2010 - 05:39 PM

I'm trying to raise awareness for celiacs disease, and it would help me out a ton if people with celiacs disease can answer these few questions. Thanks

1. Sex: Male or Female
2. Age:
3. How long ago were you diagnosed with celiac disease?
4. Does anyone in your family have celiac disease?
5. How severe is your celiac disease?
6. Is it difficult to eat out at restaurants or anywhere outside of your home?
7. Do you believe that there should be more to be done to make this disease more aware to the public?
8. How has this disease impacted your life?
9. What do you think would make celiac disease easier to deal with?


1. Male
2. 50
3. 2 years
4. No
5. Not too bad -- my sensitivity starts at the crouton size.
6. Yes.
7. No -- maybe more aware for doctors.
8. Following the diet is inconvenient but not a burden. No known long term consequences fortunately.
9. More choices at the super market and restaurants but given the percent of the population which has this disease it is not too bad.
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Diagnosed Celiac May 2008

#11 shopgirl

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Posted 24 October 2010 - 06:10 PM

1. Sex: Male or Female
2. Age:
3. How long ago were you diagnosed with celiac disease?
4. Does anyone in your family have celiac disease?
5. How severe is your celiac disease?
6. Is it difficult to eat out at restaurants or anywhere outside of your home?
7. Do you believe that there should be more to be done to make this disease more aware to the public?
8. How has this disease impacted your life?
9. What do you think would make celiac disease easier to deal with?


1. Female
2. 27
3. Diagnosed 9/29/10. Biospy confirmed on 10/8/10.
4. Not that I know of. I'm adopted and don't have contact with my birth family. Trying to work up the nerve to find them and inform them that they may need to be tested.
5. Severe enough to interfere with my daily life but it doesn't cause the crippling pain that some people get.
6. I haven't tried restaurants yet but I'm not afraid to.
7. Yes, if only for the sake of the 97% of Celiacs who are undiagnosed.
8. I like to think of it as a bump in the road. Hopefully once it's under control, both where diet and vitamin deficiencies are concerned, it will just be a nuisance more than anything else.
9. Rigorous food and product labeling. I don't want a magic pill that will allow me to eat gluten. I accept that this is the way my body works but I want to be able to pick up any type of food, beauty, or medication type product and know by looking at it that it's absolutely safe for me to eat and/or use.

Good luck with your school project. :)
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"My experience has been that there is, surprisingly, always hope." - Eleven

Positive blood test & endoscopy / Gluten-free 10-07-10 / Dairy-free / Soy-free

#12 Detonica

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Posted 24 October 2010 - 06:17 PM

9. What do you think would make celiac disease easier to deal with? If only I could eat CHEESE! I miss cheese. Otherwise, I honestly think I'm OK with it. Life's not perfect, but I could handle it without bread. I seriously miss dairy a LOT more.


Have you tried Almond cheese? It's pretty good... I know it's not the same though. I grew up on pasta with cheese, I feel your pain!
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"Follow your bliss."

#13 Detonica

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Posted 24 October 2010 - 06:50 PM

I'm trying to raise awareness for celiacs disease, and it would help me out a ton if people with celiacs disease can answer these few questions. Thanks

1. Sex: Male or Female
2. Age:
3. How long ago were you diagnosed with celiac disease?
4. Does anyone in your family have celiac disease?
5. How severe is your celiac disease?
6. Is it difficult to eat out at restaurants or anywhere outside of your home?
7. Do you believe that there should be more to be done to make this disease more aware to the public?
8. How has this disease impacted your life?
9. What do you think would make celiac disease easier to deal with?


Hi Kayhere512, your survey is a great way to get to know people on this forum!

1: Female

2: 29

3: Biopsy confirmed on Oct. 1st this year

4: I believe very strongly that my mother, brother, two aunts, one cousin and my grandfather all have celiac disease... my mother and brother are waiting on blood test results and the rest either can't afford to get tested or refuse to believe they might have Celiac disease. Many of my distant relatives in Norway have Celiac disease.

5: I think I've had Celiac disease for at least 20 years. It got a lot worse about 3 years ago following surgery (gall bladder removal, probably organ failure due to celiac disease, my mother had to have hers removed as well.). Now I am in constant pain. The pathologist reported that the damage to my gut was visible to the naked eye, which is pretty bad I guess.

6: It is very difficult to eat outside my home. I have worked as a professional cook for 12 years and I know first hand that when a kitchen hears someone has Celiac disease, 90% have no idea what that means. Of those that know it means "gluten intolerant" most still don't know all the products that contain gluten. AND it is extremely rare that you will find a cook or cooks that will clean their equipment and wash their hands just to prevent gluten cross contamination and probably NEVER will you have a server that will consciously prevent cross-contamination. I can't tell you how many times I've seen cooks and servers just pick an unwanted item off a plate of prepared food and serve it (ie: croutons). I have NO trust in restaurants regarding gluten free food, not even if it's listed as gluten free on the menu. This distrust also applies to pre-made products. I have worked in food wholesale and witnessed outright lying on food labels. In every job, everywhere, people cut corners. Bosses and owners cut corners. It's scary, overwhelming and depressing.

7: I believe more should be done in North America for sure. I hear that in Italy they test every newborn for Celiac disease. I wish so much that I had been tested as a baby. I wish doctors were more knowledgeable and would test as a matter of course. I had to fight to even get a blood test. I was told I was depressed, had IBS, etc. 20 years of doctor's visits later... sigh.

8: I think this disease has severely impacted my life. My bones are too "thin" or "sparse", I can't see at night, I am tired all the time and of course all the abdominal pain... and the brain fog. It has affected my ability to socialize, and sadly was probably the reason I had to stop dancing (joint injuries). (That was my dream.)

9: Social awareness, product availability, seminars and cooking classes, forums such as this one, knowledgeable doctors and less corporate media pressure to eat wheat, eat wheat, eat wheat! I am so sad that economics have made such terrible changes to our diets...

Thanks for providing an opportunity for me to get to know my Celiac.com neighbors...

Cheers!
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"Follow your bliss."

#14 ElseB

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Posted 24 October 2010 - 07:00 PM

1. Sex: Male or Female - Female
2. Age: 31
3. How long ago were you diagnosed with celiac disease? - 2 and a half years ago
4. Does anyone in your family have celiac disease? - No. But there is a history of other gastro diseases - sister has Crohn's Disease and mother has IBS.
5. How severe is your celiac disease? - I hate this question! Every Celiac is severe in the sense that even if you don't react, you still shouldn't eat ANY gluten.
6. Is it difficult to eat out at restaurants or anywhere outside of your home? - Its getting easier, BUT I think the biggest problem is that restaurants don't understand cross contamination. More and more restaurants are offering gluten-free menu items, but in reality they're made with gluten-free ingredients and then get contaminated during the preparation and cooking process.
7. Do you believe that there should be more to be done to make this disease more aware to the public? - More awareness of what gluten-free REALLY means.
8. How has this disease impacted your life? - yes, positive and negative. On the negative side, its difficult to do anything spontaneously. Every meal is planned and travelling is extremely stressful. On the positive side, you learn who your real friends and family are, and really appreciate those that are willing to take the time to learn about the disease and how to make you feel comfortable and safe with food.
9. What do you think would make celiac disease easier to deal with? - more access to safe food!!!
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#15 bincongo

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Posted 24 October 2010 - 07:39 PM

[quote name='Kayhere512' date='24 October 2010 - 01:52 PM' timestamp='1287949956' post='648732']
I'm trying to raise awareness for celiacs disease, and it would help me out a ton if people with celiacs disease can answer these few questions. Thanks

1. Sex: Male or Female
2. Age:
3. How long ago were you diagnosed with celiac disease?
4. Does anyone in your family have celiac disease?
5. How severe is your celiac disease?
6. Is it difficult to eat out at restaurants or anywhere outside of your home?
7. Do you believe that there should be more to be done to make this disease more aware to the public?
8. How has this disease impacted your life?
9. What do you think would make celiac disease easier to deal with?
[/quote
1. Female
2. 62
3. 3 months ago
4. My sister has the gene and will probably find out if she has Celiac soon.
5. My symptoms were not severe but the damage to my intestines was severe when they found out by endoscopy.
6. I don't eat out a lot anymore and I bring my food for myself sometimes. I have to plan everything like where I am going to eat and what I will eat. No more fast food. Every meal is planned ahead. More restaurants are trying to offer gluten free but they don't understand cross-contamination so sometimes it isn't even worth the trouble of going out.
7. First make doctors more knowledgeable about it. Have restaurants not even offer gluten free if they don't know how to prepare it.
8. Sometimes I feel almost paranoid about gluten and few people understand that. Life is not as spontaneous anymore. I can't just go shopping and not have to think about what I will do for lunch if I am out most of the day.
8. It would be easier for gluten free food to not be so expensive. It would be easier if my family and friends actually believed me when I tell them something about living the Celiac lifestyle. It would be easier if doctors knew what tests to order to diagnosis a Celiac and follow a Celiac for health problems.
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Dx Celiac July 2010 by Endoscopy biopsy- had Endoscopy for another reason, not for possible Celiac
Lactose intolerant discovered August 2010
Hypothyroid Dx 2009. Sleep Apnea 2005


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