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Survey For People With Celiac Disease
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34 posts in this topic

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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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1. Sex: Female

2. Age: 38

3. How long ago were you diagnosed with celiac disease? 1 year. We think it triggered in my mid-teens, as that's when I started becoming ill.

4. Does anyone in your family have celiac disease? Yes. Father, brother, and both children. Father diagnosed 8 years ago. Everyone else diagnosed within a few weeks of myself.

5. How severe is your celiac disease? Very. I react consistently to gluten-free foods that are certified as 5ppm or less so I cannot eat most store bought gluten-free foods. My father and brother can eat most gluten-free foods sold in stores. My daughter and son seem to be somewhere in between, less sensitive than myself, but more sensitive than my father.

6. Is it difficult to eat out at restaurants or anywhere outside of your home? Yes. I have not managed to eat out successfully, even with food that was cooked by the restaurant's manager, with no seasonings, in a clean pan. I was still very ill. I must make all my food and bring it with me, wherever I go. Most of my ingredients have to be special ordered from companies that only make one food, so that the product is not contaminated.

7. Do you believe that there should be more to be done to make this disease more aware to the public? A little, but I'd like it more aware to the doctors more. My father was diagnosed on accident. I was diagnosed because I requested the test. My children and my brother were diagnosed because we requested the test. None of us were helped by doctors, because when they went to medical school, the symptoms and prevalence of the disease were very different than what information is known about the disease today. Talking with cousins, about half of them have symptoms as well and not one has even been tested. We're all falling through the cracks.

8. How has this disease impacted your life?

- Depression since I was 16 years old

- permanent damage to my spine and nerve problems in both arms

- soft tissue injuries that made using my hands, my arms, my legs, and my feet difficult if not impossible at various times in my life. I never had a body that was fully healthy.

- I contracted a serious form of a disease because I was immuno-compromised and while it has finally gone dormant, it will never go away and can trigger again at any time. This would have merely been a cough for a month or so if I had been off of gluten.

Now that I've been diagnosed, however...

- I am able to feel happy, and STAY happy, for the first time since I was in highschool.

- I have to economize constantly because my food budget is double, and that's if I make everything from scratch.

- I spend about 1/3 of my day cooking, because I react to so little gluten that we can't find pre-made foods that are safe. Sauces, extracts, condiments - we have to make it all, so at times, a food that would have taken me half an hour to make can now take a day or two of cooking to get all the ingredients set up for it.

- I find dealing with doctors and pharmacists an exercise in frustration. The ER doctors will often not check if the medications they just gave you, or prescribed, are gluten-free. The pharmacists don't have lists of gluten free medication, and they have to call the company that made the medication to find out. Woe to you if the company is already closed for the day. When I needed stronger medication after a surgery, I had to wait three days to get a gluten-free medication because no one knew if their medicines were gluten-free and we finally had to order new medication that we knew were safe. Not fun.

- I have energy now. I eat healthier now because I'm so much more aware of my food. I can move and dance without pain. No more nerve pain, no more soft tissue injuries, no more pain from my spine (even though that hasn't healed)

- We've had to learn how to enjoy social experiences without being a part of the food experience. It's doable, a little isolating, but much more difficult for the children to not feel left out.

9. What do you think would make celiac disease easier to deal with?

- a better understanding by non-GI doctors that eating gluten hurts us, badly. Just because we don't have anaphylaxis after eating gluten does not mean that it is therefore all right to discount precautions.

- labels that tell us how much gluten a gluten free food has, not just that it's gluten free. Right now in the US, a food with 5 ppm of gluten and a food with 200 ppm can both call themselves gluten-free, and a consumer has no way to tell which one has more without a lot of research.

- Drug companies should be required to disclose their gluten and gluten derived ingredients. Currently, they are not. The same applies for any of their ingredients that aren't 'active,' which seems extremely unsafe for any consumer with an allergy or intolerance.

- We should be able to do away with what I think of as weasel-like labeling terms. 'No added gluten' and 'naturally gluten free,' for example, which do not in any way mean that something is gluten free. It's simply a case of cashing in on a fad, and harming people who have medical reasons for being on the diet.

oookay, and now I'll shut up, LOL

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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.) Female

2.) 18

3.) April 4, 2010

4.) Not a single other diagnosis.

5.) Very sensitive to CC and anything gluteny.

6.) Yes! I feel like almost anywhere I go, I get glutened, either by CC or some careless act. :(

7.) Yes! Yes yes yes! Not enough people know about it. The fact that only 3% of celiacs KNOW they're celiac really bothers me. And so does the fact that spell check doesn't even know the word Celiac.

8.) It has made social situations a bit more difficult, but I feel much better since going gluten-free.

9.) Better understanding, and cheaper food options.

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1.) Female

2.) 57

3.) August 5, 2002

4.) Since I was diagnosed, all 3 of my daughters have developed celiac disease over these 8 years. Not a single other family member has it, altho I believe they would benefit from a gluten-free diet.

5.) Very sensitive to CC and anything gluteny.

6.) Very much so... we simply don't eat out.

7.) Definitely! Awareness of celiac... as opposed to the focus on eating gluten free as a trendy diet... would go a long way to help us real celiacs!

8.) I feel I really just had to learn to cook differently. Altho, I don't bake nearly as much as I used to. Now... giving up dairy?? WAY harder than giving up gluten!

9.) More readily available food options.

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1. Sex: Female

2. Age: 62

3. How long ago were you diagnosed with celiac disease? - Not formally diagnosed. Diagnosed with Arnold Chiari (caused brain damage prior to decompression surgery in 1986), dystonia in 1986 & Hashimoto's a few years later. Got off soy about 8 years ago (thyroid), dairy (gastro issues) about 5 years ago & last June got off gluten due to continuing worsening of my gastro & neuro symptoms. So mine has been a "personal diagnosis." My theory is if it makes me sick, bloated & worsens the neuro symptoms then it's just best out of my diet.

4. Does anyone in your family have celiac disease? - not to my knowledge but stranger things have occurred! :D

5. How severe is your celiac disease? - Seem to be OK with airborne but appears I'm sensitive to very small amounts.

6. Is it difficult to eat out at restaurants or anywhere outside of your home? - I've had SOME luck but don't really push the envelope either. Just don't like getting sick & CC is tough for a lot of places from wait staff up thru kitchen to understand. If I'm at a friend or relative's house I just pack myself something to eat.

7. Do you believe that there should be more to be done to make this disease more aware to the public? - I've been surprised the number of people I know who know someone else with some type of food intolerance or allergies.... gluten/dairy/nuts, etc. Think there are a lot more folks out there with intolerances that I ever realized. Friends/family have been supportive but I don't really make it a topic of conversation, either.

8. How has this disease impacted your life? - I miss the spontaneity of just going out at times but overall it's not that bad. Hardest part for me is not wanting to make others uncomfortable with what I consider to be my personal issue since I've had various health issues over the years.

9. What do you think would make celiac disease easier to deal with? More forums like this one... I've learned SO much & gotten great food/meal ideas from everyone here.

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1. Sex: Female

2. Age: 61

3. How long ago were you diagnosed with celiac disease? 2 1/2 years (July, 2008 self diagnosed)

4. Does anyone in your family have celiac disease? I'm almost certain my father had it as well as my grandmother. My aunt (dad's sister) also may have had it.

5. How severe is your celiac disease? Not as severe as some on this board but severe enough that I watch everything I eat and don't take unnecessary chances. A crumb on the table freaks me out.

6. Is it difficult to eat out at restaurants or anywhere outside of your home? Restaurants are difficult but I won't stop going out because of the risk. I try to be careful but every once in a while, I get sick. Eating at friends' homes is difficult - much more so than in restaurants.

7. Do you believe that there should be more to be done to make this disease more aware to the public? Yes! It should get the same attention as other disabilities and food allergies/intolerances.

8. How has this disease impacted your life? Other than the occasional accidental glutening, it's actually made me healthier. I'm very careful about what I eat and avoiding the gluteny things has helped with my blood sugar and weight control. (No more snagging DH's desserts, cookies and snacks or sharing giant sandwiches!)

9. What do you think would make celiac disease easier to deal with? Mandatory labeling on every single thing that goes into your mouth (food, drugs, alcoholic beverages, OTC products and meds, etc.)

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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.) Female

2.) 51

3.) April of 2005

4.) Yes, but they are deep into denial and refuse to be tested.

5.) Extremely...I was close to having a feeding tube at time of diagnosis.

6.) No, not usually.

7.) Yes, but good luck with that. Doctors seem unwillingly to diagnose a food related issue and many

people are so resistant to change that they reject this diagnosis.

8.) It's impact has been positive. I am healthy and content with the food options that are available to us today.

9.) The one thing that is crucial is better labeling laws. At my age, the small print cannot be read without glasses and

if I am going to have to read all these labels, it should be easier and gluten should be listed clearly. The only other comment

is we need to teach people more about food in America. So many are totally clueless as to what's in the food they eat and that makes my

job harder when I try to explain things to them. Diet is so important and should be taught more to school children.

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1. Sex: Female

2. Age: 38

3. How long ago were you diagnosed with celiac disease? 1 year. We think it triggered in my mid-teens, as that's when I started becoming ill.

4. Does anyone in your family have celiac disease? Yes. Father, brother, and both children. Father diagnosed 8 years ago. Everyone else diagnosed within a few weeks of myself.

5. How severe is your celiac disease? Very. I react consistently to gluten-free foods that are certified as 5ppm or less so I cannot eat most store bought gluten-free foods. My father and brother can eat most gluten-free foods sold in stores. My daughter and son seem to be somewhere in between, less sensitive than myself, but more sensitive than my father.

6. Is it difficult to eat out at restaurants or anywhere outside of your home? Yes. I have not managed to eat out successfully, even with food that was cooked by the restaurant's manager, with no seasonings, in a clean pan. I was still very ill. I must make all my food and bring it with me, wherever I go. Most of my ingredients have to be special ordered from companies that only make one food, so that the product is not contaminated.

7. Do you believe that there should be more to be done to make this disease more aware to the public? A little, but I'd like it more aware to the doctors more. My father was diagnosed on accident. I was diagnosed because I requested the test. My children and my brother were diagnosed because we requested the test. None of us were helped by doctors, because when they went to medical school, the symptoms and prevalence of the disease were very different than what information is known about the disease today. Talking with cousins, about half of them have symptoms as well and not one has even been tested. We're all falling through the cracks.

8. How has this disease impacted your life?

- Depression since I was 16 years old

- permanent damage to my spine and nerve problems in both arms

- soft tissue injuries that made using my hands, my arms, my legs, and my feet difficult if not impossible at various times in my life. I never had a body that was fully healthy.

- I contracted a serious form of a disease because I was immuno-compromised and while it has finally gone dormant, it will never go away and can trigger again at any time. This would have merely been a cough for a month or so if I had been off of gluten.

Now that I've been diagnosed, however...

- I am able to feel happy, and STAY happy, for the first time since I was in highschool.

- I have to economize constantly because my food budget is double, and that's if I make everything from scratch.

- I spend about 1/3 of my day cooking, because I react to so little gluten that we can't find pre-made foods that are safe. Sauces, extracts, condiments - we have to make it all, so at times, a food that would have taken me half an hour to make can now take a day or two of cooking to get all the ingredients set up for it.

- I find dealing with doctors and pharmacists an exercise in frustration. The ER doctors will often not check if the medications they just gave you, or prescribed, are gluten-free. The pharmacists don't have lists of gluten free medication, and they have to call the company that made the medication to find out. Woe to you if the company is already closed for the day. When I needed stronger medication after a surgery, I had to wait three days to get a gluten-free medication because no one knew if their medicines were gluten-free and we finally had to order new medication that we knew were safe. Not fun.

- I have energy now. I eat healthier now because I'm so much more aware of my food. I can move and dance without pain. No more nerve pain, no more soft tissue injuries, no more pain from my spine (even though that hasn't healed)

- We've had to learn how to enjoy social experiences without being a part of the food experience. It's doable, a little isolating, but much more difficult for the children to not feel left out.

9. What do you think would make celiac disease easier to deal with?

- a better understanding by non-GI doctors that eating gluten hurts us, badly. Just because we don't have anaphylaxis after eating gluten does not mean that it is therefore all right to discount precautions.

- labels that tell us how much gluten a gluten free food has, not just that it's gluten free. Right now in the US, a food with 5 ppm of gluten and a food with 200 ppm can both call themselves gluten-free, and a consumer has no way to tell which one has more without a lot of research.

- Drug companies should be required to disclose their gluten and gluten derived ingredients. Currently, they are not. The same applies for any of their ingredients that aren't 'active,' which seems extremely unsafe for any consumer with an allergy or intolerance.

- We should be able to do away with what I think of as weasel-like labeling terms. 'No added gluten' and 'naturally gluten free,' for example, which do not in any way mean that something is gluten free. It's simply a case of cashing in on a fad, and harming people who have medical reasons for being on the diet.

oookay, and now I'll shut up, LOL

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Sorry I just had to say --AMEN

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1. Sex: Female

2. Age: 31

3. How long ago were you diagnosed with celiac disease? 4.5 months ago, which was a few months after having my essentially dead gallbladder removed. Now I know why it died!

4. Does anyone in your family have celiac disease? We suspect both of my kids have it (their reaction to gluten is the reason I was ever even tested; I had no idea I had it!), I also suspect my mom, an aunt, a cousin and my grandma.

5. How severe is your celiac disease? I'm extremely sensitive, not only to gluten cross-contamination, but now since going gluten-free I've developed a boatload of other food intolerances (see my signature). Hoping and praying that as my "severely damaged" gut heals, I'll get a few foods back.

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

7. Do you believe that there should be more to be done to make this disease more aware to the public? It would be great for doctors to acknowledge it, you know, maybe take it seriously? Even my GI doctor, who reluctantly diagnosed me after my biopsy, knows *nothing* about this disease. Don't even get me started on my GP or the kids' pediatricians!

8. How has this disease impacted your life? Nothing is spontaneous anymore - there is a great deal of planning involved in everything because my diet is so very restricted. The blessed silver lining is that now that my body is absorbing nutrients, I'm no longer hungry all the time. As a result, I've lost 30 pounds this year and I'm finally very near my goal weight. I look and feel SO much better. I finally understand why, despite years of a very healthy diet and exercise, I was unable to lose weight. It all makes sense now! :D

9. What do you think would make celiac disease easier to deal with? Knowledgable doctors. And clear, honest labeling on ALL food and body products. It's the little things.

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1. Sex: Male

2. Age: 30

3. How long ago were you diagnosed with celiac disease? 4 weeks

4. Does anyone in your family have celiac disease? Not that I'm aware of, suspect it in my mother

5. How severe is your celiac disease? I really don't know how to gauge it. But it causes server fatigue.

6. Is it difficult to eat out at restaurants or anywhere outside of your home? I'm not healed yet and so it's hard for me to tell whether CC has taken place.

7. Do you believe that there should be more to be done to make this disease more aware to the public? Yes. I'd not have known it existed, if it were not for my own research. My Dr never mentioned it.

8. How has this disease impacted your life? Quite severely. I've been extremely fatigued since my early teens, it's held me back massively. Despite being successful, I know I'd be doing better, if it were not the fatigue.

9. What do you think would make celiac disease easier to deal with? Better, clearer labeling of foods. All foods should state clearly whether or not they are gluten free. This product IS gluten free or this product is NOT gluten free.

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    • Well, I am stressed to the max. I just spent 3 days in the hospital with D and stomach pain, dizziness, chest pain, generally unwell. Then another trip to the ER on top of that. My protein was low and my RBC and hemoglobin dropped below normal in 3 days. Not terribly low, but below normal. I also had metabolic acidosis which still confuses me. I usually eat every 2-3 hours despite it causing pain to keep my energy up and was unable to eat that frequently in the hospital. I usually carry protein with me and had been taking liquid iron which I stopped a few weeks ago because my new endo is not a fan of iron supplements. As soon as I got home from the hospital I started with my protein drinks and blackstrap molasses for iron.  I now have bilateral mild pleural effusions and a nodule on my left lung, which hopefully is nothing, but was not there on a CT back in March. In addition, my left adrenal gland, which also appeared normal in March, is calcified and the report indicates this is most likely due to a previous bleed or infection. My colon appears tortuous (whatever that means) and we are waiting on colon/endo biopsies. I have been gluten-free since March except for cc so expect the biopsies to again be negative.  My primary care is useless. I am in the process of getting a new one I will see on the 7th but need the current one to fill out FMLA paperwork because I both physically and mentally need time to recover. I will have to go off of payroll for 2 weeks but I think I need to. I called the primary's office today to discuss the hospital tests which she does NOT have yet and to ask if we should/could start a low dose of prednisone because my body is attacking itself. My thyroid on ultrasound is also abnormal though my bloodwork thus far is normal. But it hurts on that side. The only reason the ultrasound was ordered is because I asked for it in the first place. The only reason I have started seeing an endocrinologist is because I found one myself. Anyway...I broke down in tears on the phone eith her today and she told me I was having a "manic episode". I have no history of mania. I only recently started taking xanax to help me cope with the stress of being sick. I was not sick until I did this stupid gluten challenge over the winter. My mother was in town and spoke with the doctor on the phone as well who was trying to get my mom to take me to a psych hospital. She also threatened to send the police to check on me. My mother assured her I was in no danger and we hung up the phone in complete shock. Admittedly, I was in tears when I called her and probably sounded like a fucking mess. But I believe I referenced the dropping iron, protein, fluid near lungs, enlarged thyroid and attacked adrenal gland then literally said "my body is attacking itself and I need help" to which she said, "I think you are manic". Lovely. If I was a mess before that phone call it was 10x worse when we hung up.  Anyway, this is the first night it has been extremely difficult to sleep. I admit my thoughts about my odd symptoms keep me up often recently. I mean, who the hell bleeds from or gets an infected adrenal gland?! I am sure it was another time I begged my primary for help. On a side not, the NP at the ER told me the primary should be putting these pieces together and communicating with my other doctors better. He then stated that he used to go to the same practice but left because the practice got too big and like a business. So I got some validation from that chat.  A melatonin or a .25 xanax usually does the trick for me to sleep but I am so disturbed about my interaction today, stressed at my health, stressed that my ex has our son so much because I am always sick (bless him for coming through), stressed that I have to go back to this awful doctor because I will need the FMLA paperwork before I see the new doc on the 7th.  8 months ago, I took a multivitamin when I remembered it and that was it.  End rant. Maybe now that it is off my chest I can finally sleep. 
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