Survey For People With Celiac Disease

[precious831]

1. Sex: Female

2. Age: early 30s

3. How long did it take you mean? I was diagnosed last year but I've had symptoms pretty much since maybe puberty.

4. Not that I know of.

5. I'm grain-free, soy and dairy-free. I get very sick with these things. I don't know I guess I'm moderate?

6. Is it difficult to eat out at restaurants or anywhere outside of your home? Yes very difficult! I barely go out to eat, I make a lot of stuff from scratch.

7. Do you believe that there should be more to be done to make this disease more aware to the public? Yes definitely, need more awareness! We need more gluten-free/allergen-free places.

8. It has turned my life around! It has affected everything. But I try to be positive.

9. What do you think would make celiac disease easier to deal with? More awareness, more options and more knowledgeable doctors! We are suffering way too long before we get diagnosed. That's not acceptable.

[GFinDC]

1. Sex: Male or Female Male, I am a macho-man.

2. Age: 52

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

4. Does anyone in your family have celiac disease? Yes, one brother w/Crohns and celiac (deceased), 3 other siblings that have some symptoms but not diagnosed.

5. How severe is your celiac disease?

It was very bad before I found out what the problem was and went gluten-free. Lots of pain and no sleep, mind fog and short temper, sore joints, muscle twitching, fatigue, didn't want to pay taxes. Oops, guess I can't blame that on celiac.

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

Yes, it's not just gluten, it is dairy, soy and nightshades for me. So very limited choices. Many restaraunts use soy as a cooking oil because it is cheap and so good for us (they claim, wrong!).

7. Do you believe that there should be more to be done to make this disease more aware to the public?

Certainly. About 1% of the US poopulation has probably got it and the numbers aren't going down.

8. How has this disease impacted your life?

Lots of ways. Too many to recount. I know even more medical terms than most viewers of House, the TV show. I don't eat the same old processed crap I used to eat all the time. I eat healthy wholesome foods with no preservatives, food colorings, soy, dairy, or gluten. I cook almost all of my food. I can spell gliaden. I shop for gluten free cat food and treats. I wash my hands alot more since going gluten-free, although my house is pretty gluten-free at this point. I don't generally trust other people to cook my foods. I take food with me if I am out for a day, or just don't eat that day. I have lots fewer cardboard boxes and packaging to throw away in the garbage. I have more sympathy for other people who are struggling with sickeness of whatever kind. I think I am more patient now and more stable emotionally. I don't eat as much now but am not as hungry as I was before. My teeth and gums are healthier, I can see better, my sinuses have cleared up and my hayfever is 1/10th the problem it used to be. I rarely take anti-histamines now but used to keep a supply with me always. My muscles are stronger, and my legs and feet are not swollen like well, balloons. So my socks don't cut into my ankles and make 1/4" inch deep grooves. I can sleep more than 3 hours a night now. I don't pass out randomly now and I can walk pretty well without losing my balance. I was able to quit taking thyroid pills and am feeling fairly energetic mostly. I can concentrate on a task longer without forgetting what I was doing. I think soy is poison and food manufacturers are killing us softly with their advertising song. I think wine makers should be required to disclose anything other than grapes that is put in their wines. I actually feel like a human being now, not just a sick lump of misery.

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

If the FDA would mandate labeling for medicines so people with celiac would have a fair chance to get meds that wouldn't make them sicker. Please sign here: Sign New Online Petition To Mandate Gluten-Free Labeling On All Pharmaceutical Products

[SaraKat]

1. Female

2. Age: 35

3. How long ago were you diagnosed with celiac disease? 2 months ago

4. Does anyone in your family have celiac disease? Not that I know of, some of them are getting tested and so far they are all negative.

5. How severe is your celiac disease? I think it is silent, except for some joint pain in my ribs and anemia. I have no gut issues.

6. Is it difficult to eat out at restaurants or anywhere outside of your home? Yes, because I have no clue if I am being glutened.

7. Do you believe that there should be more to be done to make this disease more aware to the public? Yes

8. How has this disease impacted your life? I just have been eating in more.

9. What do you think would make celiac disease easier to deal with? If I could tell for sure when I have been accidentally glutened.

[Mari]

1. Sex: Female

2. Age:74

3. How long ago were you diagnosed with celiac disease? 2006

4. Does anyone in your family have celiac disease? Probably but undiagnosed, brother with Tyoe 1 Diabetes.

5. How severe is your celiac disease? Refractory Celiac Sprue and non-celiac sprue

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? Definite YES

8. How has this disease impacted your life? In too many ways to tell.

9. What do you think would make celiac disease easier to deal with? Increased awareness, reeducating health care professionals about gluten problems, Improving the diagnostic tests and criteria. Controlling cross-contamination of foods.

[kristianne75]

1. Sex: Male or Female Female

2. Age: 35

3. How long ago were you diagnosed with celiac disease? 1 year

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

5. How severe is your celiac disease? Severe enough that I avoid gluten like the plague.

6. Is it difficult to eat out at restaurants or anywhere outside of your home? Yes, and usually not worth the effort. I could make a $12 salad at home...for a lot less and know it is safe!

7. Do you believe that there should be more to be done to make this disease more aware to the public? Yes.

8. How has this disease impacted your life? Because of going gluten free I eat healthier, and have incorporated vegetables into my diet that I never even thought of trying before. However, it makes social gatherings (90% of the time they revolve around food and drinks) next to impossible. People don't get it and tend to accuse you of not being able to relax and "just grab a plate". Or make comments about watching my weight when I order salad or just choose not to order at all.

9. What do you think would make celiac disease easier to deal with? Clearer labels on food ingredients. A lot of things say at the bottom of the ingredient list "contains...." and list high allergens. But so many things do not. It would be nice if it was a quick check on the back of a product.

[Skylark]

1. Sex: Female

2. Age: 42

3. How long ago were you diagnosed with celiac disease? 5 years, medically diagnosed by remission of clear celiac symptoms on the gluten-free diet.

4. Does anyone in your family have celiac disease? Mom has non-celiac gluten intolerance.

5. How severe is your celiac disease? I'm sorry, but I have no idea how to answer this. What is your measure of severity?

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? It's all over the papers, in magazines, and celebrities are talking about it. At this point, it's hard to understand why so people are still unaware. Short of the FDA buying billboards I don't know the next step.

8. How has this disease impacted your life? Finding out I was celiac made me well and has improved my life immeasurably.

9. What do you think would make celiac disease easier to deal with? The FDA finally passing some food labeling laws. That would also help with awareness.

[GroovyMimi]

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: 56

3. How long ago were you diagnosed with celiac disease? 10 months ago

4. Does anyone in your family have celiac disease? Oldest sister suspects.

5. How severe is your celiac disease? 90% under control.

6. Is it difficult to eat out at restaurants or anywhere outside of your home? Sometimes, depending upon restaurant.

7. Do you believe that there should be more to be done to make this disease more aware to the public? YES!!!

8. How has this disease impacted your life? Magnanimously...for good and bad. Good, 50 lbs weight loss, bad...I'm still unaware of ALL I should NOT be eating.

9. What do you think would make celiac disease easier to deal with? Labeling foods, made easier to decipher if 100% Gluten/Wheat free; RESTAURANTS more Gluten Free choices, FAST FOOD RESTAURANTS, MORE Gluten Free choices (i.e., LETTUCE WRAPPED!).

[MelindaLee]

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

2.42

3. 3 months

4. Not diagnosed, but I think at least 2 others do.

5. I am not super sensitve. I didn't have typical symptoms. Things I thought were age related have went away (And, i didn't get younger!! )

6. I have found several restaurants that are gluten-free, but other than those, yes, it's difficult.

7. I definately believe awareness is important. Many people could be healthier if mis disagnosed/undiagnosed people were aware.

8. It's frustrating at times...but has also inspired me to look at stating a business related to gluten-free

9. More people who understand. Diabetes is better understood, and there are many product out there to help make life easier.

[WheatChef]

1. Male

2. 29

3. 8 months

4. At least 2 others with a few additional suspected members

5. As far as reach of the disease I had it affecting almost every single organ in my body. The physical symptoms were pretty heavy and had required hospitalization on a few occasions but the mental effects were quite larger and resulted in many many years of counseling and psychoactive prescriptions which were suddenly made pointless once I simply went gluten-free.

6. It was difficult, then I moved to Portland, OR which is pretty much a celiac's dream city. Now there's plenty of options for me.

7. Yes, but I think current efforts are actually succeeding quite well. It's something that's becoming a part of pop culture (saw gluten-free crackers mentioned on the Simpsons last week) already in name alone which is a good start. I think the most effort needs to be spent on making doctors more aware of the non-severely-outdated information about the disease.

8. It crippled the majority of my life, it threatened to take it a few times too.

9. Mandated food labels!