Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Survey For People With Celiac Disease
0

34 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

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

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites




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.

1

Share this post


Link to post
Share on other sites

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!).

0

Share this post


Link to post
Share on other sites

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!! :D )

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.

1

Share this post


Link to post
Share on other sites

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!

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,676
    • Total Posts
      921,697
  • Topics

  • Posts

    • First of all, welcome to the forum! it's good to have you here. Secondly, I can really relate to the fatigue portion.  it really hadn't affected me until everything hit the ceiling medically for me.  I was constantly tired all the time, and waking feeling rested in the morning. Prone to depression and anxiety, definitely.  It drove me nuts for those first few weeks.  That's when I decided to try going off the gluten to see what happened.  I still dealt with the depression, anxiety at crazy levels, and inability to focus/concentrate, but it had gotten progressively better.  The anxiety got so bad I would have panic attacks in public areas which only ramped up the anxiety because people saw what was happening.  I would encourage you and your doctor to do a full Celiac panel before you decide to try the gluten free diet.  I had my blood work done after I was off gluten for about two months or so.  Thankfully, my levels were still high to register at least a gluten sensitivity.  Since going off gluten for almost a year now, things have started to finally appear "normal".  Whatever normal means for me now.  As I am healing from the 30 years of glutenizing, I combined both natural methods with the medical methods.  If you are interested in the different avenues of natural methods, I would be willing to share with you.  I will be praying for you as you go through this journey. Let me assure you, you are not alone in this journey.  Depending on family dynamics, they can be a great source of support.  This forum is also a great place to bounce thoughts or concerns off of.  Good luck.
    • I doubt it. I would think that would be a questions for the company that make them.    But if smoking makes you feel bad....and you are able to quit for several weeks at a time....why go back to it?
    • Hi. I've noticed that after a break of smoking (2-3 weeks) I feel bad, when I begin to smoke again.  Maybe they contain some additives with gluten??
    • Thank you everyone! Good to know I am not alone with this. I am asking for a referral to a new cardio. Hopefully it will all go away the longer I am gluten-free. It started up in February/March after a gluten challenge and mostly vanished until July when I had a lot of shortness of breath. It absolutely was CRAZY just a few days after the glutening. I was gasping for breath and the beats were all over the place just walking through a parking garage and I was only mildy anemic at the time.   But it seems to "quiver" and do funny things for a bit still. I sort of theorized maybe it was inflammation in the heart because after this last glutening, my head felt like it was in a vice and my eyes would sting or get stabbing pain hurt (that is finally going away thankfully...knock on wood).  The head/eye pressure I learned also happens to my sibling who has celiac and his naturopath told him that sometimes the brain gets inflamed. Hopefully I can meet the new cardio soon and feel confident that he is taking me seriously. It is sort of difficult to feel confident in the opinion of a doctor that your ticker is ok when they are not really listening and end up making you cry. LOL. A friend of mine in the mental health field recently listened to my story of doc after doc and test after test and said that it was akin to the folk story of blind men describing an elephant. A group of blind men all feel one part of an elephant (tusk, tail, ear, tail) and then compare notes only to find they all disagree.  In some  versions they argue intensely. In other versions they have to collaborate and listen to each other in order to "describe" an elephant.    
    • Good afternoon! I am new to this board and fairly new to researching Celiac Disease, although I had a general idea what it was. My health has become a huge mystery to me, and it's one that I am desperate to solve. The biggest issue right now is horrible, life affecting fatigue. I have been dealing with it for several years now- as many as 5 to 6. It has gotten progressively worse, and nothing at all helps. Sleep apnea has been ruled out. Intestinal issues are something I have dealt with for almost two decades. I'm 45, but I've already had two colonoscopies as well as two endoscopies. My first endoscopy was as a child for persistent, severe stomach pain. My last colonoscopy and endoscopy was two years ago. The only thing that has come from those is an Irritable Bowel type condition and GERD, which is pretty bad. My bowel movements have always been crazy. They can be very normal and healthy to completely crazy. I've had periods of persistent diarrhea to occasional constipation, which is a fairly new thing within the last year. Last week, I went from having diarrhea that morning to hard, round balls of stool by that evening. My most common stools here lately, though, are not quite diarrhea, but more fluffy, large piles. Gas is an ongoing, daily issue for me. I have copious amounts of gas every day no matter what I eat or drink. Most of the gas in non-odorous but it can be very loud. I am currently on a total of 60 mg of Ritalin per day just to function. I often add energy pills, purchased from places such as GNC, because the Ritalin isn't working. Yesterday, I took both doses of Ritalin and two energy pills, and I passed out on the couch after work. I work from 7:30am to 3:30pm, and my work day is nothing too crazy. I try to keep very consistent sleep hours and could easily sleep to 1:00pm or longer if I don't have to get up for something. I sometimes have short periods of energy in the mornings, but that is usually over by noon. The quality of my life is greatly affected. I don't want to go anywhere or do anything because I am way too tired. I'm trying to keep up with my exercising, but that is also a struggle.  I have a history of clinical depression for practically all my adulthood, but it has been very well managed for the last four years. The fatigue is currently causing a great deal of depression, but it is very different from the clinical depression that I use to deal with. When I don't feel sleepy and tired, I don't feel depressed. When the fatigue sets in, I feel very irritable and sad. I realize that the stimulants can cause irritability, but I don't feel irritable or sad when I'm not feeling fatigued.  I've only recently began to explore that the fatigue and the intestinal issues could be related. I have always accepted that I have a sensitive, cooky digestive track. The increasing, unrelenting fatigue is what has lead me to exploring the possibility that everything could be related. I did have blood work last November. My doctor did not test for anything Celiac Disease specific, but she did do a Vitamin D, ferritin level and overall metabolic panel. All of that is normal. My thyroid level is also normal, and I do take thyroid hormone because I had half of my thyroid removed 11 years ago due to what turned out to be a benign thyroid tumor.  I just saw my doctor two weeks ago, and she increased the dosage of my Ritalin. That has not helped at all. She has never mentioned Celiac Disease to me before. I made an appointment for this Friday afternoon to talk about it, but I keep wondering if I'm even heading in a direction that makes sense. I decided to post here for some guidance. I'm sorry this has been so long. I'm not really into cutting something totally out of my diet just to see what happens. I also feel like that if I have something that is poisoning my system, I need a real clinical diagnosis of that. I feel like maybe I'm grasping at straws now and imagining a correlation that isn't there. I am not looking for a quick fix, but right now I have no idea what needs to be fixed. I am open to any information and/or suggestions. Thanks so much!   Jennifer
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,673
    • Most Online
      3,093

    Newest Member
    KAN
    Joined