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Survey For People With Celiac Disease


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33 replies to this topic

#16 T.H.

 
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Posted 24 October 2010 - 09:48 PM

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
  • 2

T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


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#17 RachelisFacebook

 
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Posted 24 October 2010 - 11:35 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.) 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.
  • 1
"Always do what you are afraid to do."
Ralph Waldo Emerson

Official Diagnosis: Apr 3, 2010
Officially went off gluten: Aug 2010
Possible corn intolerance discovered Dec 2010

#18 luvs2eat

 
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Posted 25 October 2010 - 04:29 AM

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.
  • 1
luvs2eat
Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!

#19 Estella

 
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Posted 25 October 2010 - 07:50 AM

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.
  • 2

#20 BethJ

 
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Posted 25 October 2010 - 10:09 AM

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.)
  • 1
Beth in Florida

Gluten-free since 7/19/08
Alcohol free since 6/28/10

#21 Gemini

 
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Posted 25 October 2010 - 11:48 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?



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.
  • 0

#22 bincongo

 
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Posted 25 October 2010 - 12:11 PM

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


  • 0
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

#23 bincongo

 
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Posted 25 October 2010 - 12:12 PM

Sorry I just had to say --AMEN
  • 1
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

#24 julandjo

 
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Posted 25 October 2010 - 01:32 PM

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.
  • 1
Dx'd with Celiac June 2010 via positive biopsy. I got tested because both of my kids (3 and 5 years old) have multiple food intolerances, with gluten being the worst offender.

Free of: grains, dairy, soy, legumes, nightshades, nuts, fish, eggs, pork, citrus and tropical fruits (latex allergy), stone fruits, melons, squash, strawberries, flax, cruciferous veggies and celery.

Yes, I'm HUNGRY.

#25 realmaverick

 
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Posted 25 October 2010 - 04:38 PM

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.
  • 1
Main Symptoms
  • Extreme Fatigue
  • Anxiety, Brain fog
  • Sore Eyes

Diet and Supplements Started 23rd September 2010
  • 100% Gluten Free
  • Holland & Barratt, Vitamin B Complex. 100mg B1, B2, B6, B12
  • Holland & Barratt, Omega 3 Fish Oil. 1360mg x 2. 1900mg Active EPA/DHA
  • Mightidophilus, Enteneric Coated Probiotic. 20 Billion MO, 12 Strains.

#26 precious831

 
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Posted 25 October 2010 - 06:33 PM

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
Grain-free,dairy-free, soy-free (celiac, possible colitis now as well).
Extremely allergic to shellfish, Aspirin & Ibuprofen

#27 GFinDC

 
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Posted 25 October 2010 - 07:35 PM

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
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#28 SaraKat

 
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Posted 26 October 2010 - 06:40 AM

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
Positive TTG IGA blood test 8/13/10
Endoscopy confirmed 8/31/10
Started gluten-free diet 9/1/10

#29 Mari

 
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Posted 26 October 2010 - 09:26 AM

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.
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DQ6/DQ8
HLA-DQ B allele 1 *0602: HLA-DQ B allele 2 *0302
Gluten free and Cow Dairy free since 2006

#30 kristianne75

 
kristianne75

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Posted 26 October 2010 - 09:57 AM

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.
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