Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Cna You Answer These


joemoe003

Recommended Posts

joemoe003 Apprentice

can u answer these? a friend of mine is doin a report and he would like to know some information about us all!

> > >1. how long have you had coeliac?

> > >

> > >2. At what age were you diagnosed?

> > >

> > >

> > >3. what foods do you miss out on?

> > >

> > >4. How much does it cost to stay gluten free?

> > >

> > >5. Do you ever wish that you didn't have coeliac?

> > >

> > >6. Does the food taste better or worse or the same as ordinary food?

> > >

> > >7. Have you ever eaten gluten without knowing it then suffered for it?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

1. not sure... I've been gluten-free for a year. probably had gluten-intolerance for at least 2 years before that, but maybe longer.

2. dx'ed at 24.

3. a good loaf of crusty italian bread dipped in olive oil and balsamico

4. not really any more than when I wasn't gluten-free, but I cook from scratch, and don't do a lot of baking (by choice)

5. sure, most of us would prefer to not have restrictions than have them, but it's never a "pining for not being celiac" or a sense of anger or the like

6. it IS ordinary food. I used the same chicken, bell peppers, onions, sugar peas, water chestnuts, carrots, chili paste, oil, ginger powder, and garlic that anyone else would use to make a stir fry last night. And served it over the same rice that anyone else would eat. sure, I used wheat free tamari instead of regular soy sauce, but there's no taste difference there. I haven't changed the recipe for most of the other things I eat either (chili, fajitas, bean salads, chicken soup, etc.). for the few things that really do need substitutions, like pasta, I think it's just about the same, but I don't tend to eat pasta plain, anyway.

7. oh yeah. I hate that.

celiac3270 Collaborator

1. Had celiac probably for years (4-7 years, I guess).....known for about 7 months

2. 14 in a few months.... :D

3. Real pizza...there is no replacement

4. More.....i don't really know...i don't pay the bills :)

5. Of course...but I never would've met anyone on the boards....I feel like I've made some good friends here and I feel good about helping others and educating myself.

6. In many cases, better (except pizza :))

7. Yea....in the beginning.....when i didn't know about all the bad ingredients.....but not at all since then.

burdee Enthusiast

OK, here are my answers:

(1) Symptoms consistent with celiac disease since early childhood, but misdiagnosed or discounted for years ... maybe about 50 years, since I have the main celiac gene.

(2) Enterolab diagnosed at age 57.

(3) Don't miss ANY gluten containing foods, since I really like gluten-free substitutes, but since I also have dairy and soy intolerances, I have not found any good cheese or yogurt substitutes.

(4) About the same as when I was consuming all the 'bad' stuff. Although gluten-free foods may be more expensive, I feel better, I am more satisfied since they don't make me ill and I can better absorb the nutrients, so I NEED and EAT less.

(5) YUP. Everytime I inadvertently ingested gluten, dairy or soy and experienced excruciating cramping abdominal pains. :o But I also wished I would have been more careful, since I know I must avoid those ingredients. <_<

(6) Most of what I eat IS ordinary food, but I choose gluten/dairy/soy free brands of mainstream foods. I actually PREFER gluten free breads ... the higher fiber ones are denser and gooey-er (Is that a word? :blink: ) ... probably due to the xanthum gum which I love. I've also noticed my gluten-free/DF/SF meals stay with me longer, so I can eat and just forget about food, rather than feeling unsatisfied after eating gluten containing foods. Maybe feeling unsatisfied came from eating those foods which my body really could NOT digest. :unsure:

(7) YUP. Lots of times in my first few months trying to avoid gluten, then a few more times with dairy, after I learned I didn't tolerate dairy and several more times after I learned I couldn't tolerate soy either. I STILL have occasional slips after 5 months since learning I had celiac disease, but I'm feeling much better. So I must be 'abstaining' better. ;)

OOOOPPPPSSS!! I'm obviously not a teenager ... celiac3270, can you delete my post if I shouldn't have responded here??? Sorry, I like questionnaires.

BURDEE

stargirl Apprentice

1) I've probably had Celiac for about a year and a half. I was diagnosed nine months ago.

2) barely 17

3) I miss my Papa's apple pie, and Frenchbread pizzia, and strawberry cake.

4) A lot of my food is more expensive than what we would normally buy. A lot less sales on it too. We probably spend around $200 a month to keep my brother and I gluten free.

5) LIfe is made more complicated by having Celiac, I would like to not have to worry about food every time I eat out or scrutinize the ingredients on everything. Life would be easier without Celiac.

6) This one is hard, I have no idea. I have found that after being away from some foods for so long that I don't really remember what they taste like. I don't know if the stuff I eat tastes normal or not, it does to me. I don't have a problem most of the time with taste.

7) I have occasional slips when I eat things without thinking about it at my house. I think about it a lot afterwards! Other than that I'm really careful and rarely get sick, barring uncontrollabe cross contamination at restaurants.

plantime Contributor
can u answer these? a friend of mine is doin a report and he would like to know some information about us all!

Happy to oblige!!

> > >1. how long have you had coeliac?

> > >Probably all my life, just didn't know what it was

> > >2. At what age were you diagnosed?

> > >39

> > >

> > >3. what foods do you miss out on?

> > >buttered toast

> > >4. How much does it cost to stay gluten free?

> > >Not too much, I stick to basic foods most of the time, with not much in the way of pastas and breads

> > >5. Do you ever wish that you didn't have coeliac?

> > >Not really. It would make eating out easier, but I am enjoying the challenge of cooking differently

> > >6. Does the food taste better or worse or the same as ordinary food?

> > >It is ordinary food. I do not think of my way of eating as not any more "unordinary" than Mexican or Italian food.

> > >7. Have you ever eaten gluten without knowing it then suffered for it?

Oh, yes! On more than one occasion, I have been curled up in bed, unable to sleep, struggling to breathe, with horrible cramps.

I know this is a teenagers section, please forgive me for intruding!

plantime Contributor

Oops! I guess I messed up on that post! I used the quote feature, but typed my answers immediately under the questions! Please forgive my error! The questions are joemoe's, the answers are mine!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



joemoe003 Apprentice

thats ok if your not a teen its cool to hear all this stuff from peeps of all ages

stargirl Apprentice

What is your friend researching exactly and how will our answers help? I was just curious. Anything that gets Celiac explained to more people is great. :D

MySuicidalTurtle Enthusiast

1. how long have you had coeliac? My whole life.

2. At what age were you diagnosed? 18.

3. what foods do you miss out on? Pizza hut gooeyness. Hmmm, just depends if I smell something then crave it but now I just miss my gluten-free foods.

4. How much does it cost to stay gluten free? Too much.

5. Do you ever wish that you didn't have coeliac? Yes.

6. Does the food taste better or worse or the same as ordinary food? The same usually if I find the right stuff.

7. Have you ever eaten gluten without knowing it then suffered for it? Yes.

Thomas Apprentice

Hope these help.

Guest ~wAvE WeT sAnD~

1. how long have you had coeliac?

Three months

2. At what age were you diagnosed?

21

3. what foods do you miss out on?

Regular soft tortilla wraps and brownies

4. How much does it cost to stay gluten free?

A lot--but I like the food :)

5. Do you ever wish that you didn't have coeliac?

Not now, but I did the day I was diagnosed.

6. Does the food taste better or worse or the same as ordinary food?

It depends on the product--gluten-free pizza crusts taste different.

7. Have you ever eaten gluten without knowing it then suffered for it?

Yes--I had some weird kind of chips that MUST have had gluten, because I felt sick.

lilliexx Contributor

1. how long have you had coeliac?

I have probably had gluten intolerance for 5 yrs.

2. At what age were you diagnosed?

29

3. what foods do you miss out on?

All bread products (french bread, pastries, pizza crust, sandwiches etc)

4. How much does it cost to stay gluten free?

I have to limit myself on specialty gluten free foods becuz they are a lot more expensive.

5. Do you ever wish that you didn't have coeliac?

yes, everyday

6. Does the food taste better or worse or the same as ordinary food?

I have found some gluten free foods that taste the same or better!! but sadly most bread substutes taste a lot worse!!

7. Have you ever eaten gluten without knowing it then suffered for it?

It happened only once to my knowledge (at a restaurant)

Carriefaith Enthusiast

1. I've probably had celiac for awhile but my symptoms started getting worse last summer 2003 (I was diagnosed in March 2004).

2. I was 22 when I was diagnosed

3. Of coarse I miss all the typical gluten foods like bread, bagels, subs, hamburgers, but the food I miss the most is take-out pizza

4. It usually costs anywhere from $45-80/week. Depends on what I'm cooking.

5. Yes

6. Rice pasta is about the same, cookies are mostly the same, all breads are not as good but still ok, pizza crust is not as good. I eventually got used to the gluten-free products and they're not that bad just way too pricy!

7. Yes, and it wasn't pretty

  • 3 weeks later...
RavenFeather Newbie

> > >1. how long have you had coeliac?

since July 04

> > >2. At what age were you diagnosed?

not really diagnosed but I guess you could say 14.

> > >3. what foods do you miss out on?

All. Desserts. And Most Sandwiches/Breads

> > >4. How much does it cost to stay gluten free?

Not sure.

> > >5. Do you ever wish that you didn't have coeliac?

Most of the time. Its just something that I'm going to have to get used to.

> > >6. Does the food taste better or worse or the same as ordinary food?

It tastes worst to me, going from all types of food to a subsitute for bread its a little hard.

> > >7. Have you ever eaten gluten without knowing it then suffered for it?

Probably, one time I had a hot dog (w/o a bun of course) but I think the dog had a thickening agent. I was in pain.

mommida Enthusiast

1. Must have been my entire life. I gave birth to my daughter and everytime I ate I got sick. then when she went on food she was getting sick too.

2. I'm not technically diagnosed. My daughter was diagnosed through genetic testing. 7-04 at 16 months old. I went gluten-free at the age of 33. It's rather expensive for testing when I all ready know I can't eat it.

3. I miss the whole experience of going to a deli and a stacked deli sandwich. I miss baking passed down family baked goods. It made me remember making bread with my grandma.

4. I'm going to guess at least 10% higher on main stream products. We must stick to brand name products. I haven't found any generic/store brand that hasn't had fillers in it.

5. Sure. I also wish I was taller, prettier and stronger.

6. Substition bread products are definately worse.

7. Yes. Label laws need to change. Considering we would have to look for about 3 pages worth of terms to figure out if the product listing means gluten.

Laura

byuiemily Newbie

1. how long have you had coeliac? Symptoms my whole life

2. At what age were you diagnosed? 17, 2 1/2 years ago

3. what foods do you miss out on? Pizza, Italian food, my mom's lasanga, cake

4. How much does it cost to stay gluten free? I don't buy many specially made products, so it costs me the same as if I didn't have celiac

5. Do you ever wish that you didn't have coeliac? Sure

6. Does the food taste better or worse or the same as ordinary food? There are some foods that taste better "normally" then it being gluten-free, but there are some gluten-free foods that I've made that taste just as good as normal foods

7. Have you ever eaten gluten without knowing it then suffered for it? Yep.

  • 3 weeks later...
lee Newbie

1. how long have you had coeliac? 18 yrs, im 20 now, so my whole life

.

2. At what age were you diagnosed? 2 yrs old

3. what foods do you miss out on? i cant remember ever eating gluten foods

4. How much does it cost to stay gluten free? bit more esp. gluten free bread

5. Do you ever wish that you didn't have coeliac? sometimes, but it has its positives - always eating healthlier and no cakes, biscuits, pizza etc. i do however have very low iron, so i have to take iron pills and eat liver and beetroot :)

6. Does the food taste better or worse or the same as ordinary food? again i dont really rememeber.

7. Have you ever eaten gluten without knowing it then suffered for it? definately! i ate fries that were dipped in flour and was quite sick... ive also drank alcohol that i thougth was gluten free but wasnt.

Rikki Tikki Explorer

I thought I had read on here that the bar-b-q sauce at McDonalds was gluten free, but I got really sick and then read the top and it contains wheat.

Just thought I would share.

Rikki Tikki Explorer

I thought I had read on here that the bar-b-q sauce at McDonalds was gluten free, but I got really sick and then read the top and it contains wheat.

Just thought I would share. One other thought, I received an e-mail that said a university was researching celiac and wanted some answers to questions. I answered them and it ended up being a business that wanted business. :rolleyes:

  • 3 months later...
Kels18 Newbie

1. how long have you had coeliac? Since I was a baby

2. At what age were you diagnosed? 15 months

3. what foods do you miss out on? I can't remember ever eating gluten foods

4. How much does it cost to stay gluten free? It is more exspensive than normal food...and not as easy to buy.

5. Do you ever wish that you didn't have coeliac? Sometimes

6. Does the food taste better or worse or the same as ordinary food? I dont remember eating gluten foods.

7. Have you ever eaten gluten without knowing it then suffered for it? Yes, and it is not good!

  • 2 weeks later...
Vyse Newbie

1. How long have you had celiac?

Well, I had symptoms at birth and the doctors told my parents to feed me white bread rather than wheat <_< . Then my mom found out about 4 years ago so I've been off wheat almost 3 years now.

2. At what age were you diagnosed?

I went off wheat at around 15 years old, but I was never "diagnosed cuz i didnt want to get the standard test...the scope. So i just go by how it feels, and it feels bad when i eat wheat.

3. What foods do you miss out on?

Pizza, my friends eat pizza all the freakin time :( but i resist the urges, especially since my dad makes really good gluten-free pizza for us. I've never tried a Krispy Kreme, its always been tempting but ive stayed clear. Basically i miss almost all pastries.

4. How much does it cost to stay gluten free?

I'm not sure $$ wise, a little more, but not to bad. If you mean mental cost then it all depends on your personality.

5. Do you ever wish that you didn't have celiac?

Most definately. Although, its really not that bad once you get used to it. yeah you miss the food, but i think it helped my personality for the better, and it adds something interesting to conversations. I think it would also be easier to get a girlfriend if I didnt have the whole not being able to eat wheat thing hovering around me.

6. Does the food taste better or worse or the same as ordinary food?

Some taste the same, like things that didnt have wheat in the first place(meats, potato salad, etc...). Some things are completely aweful (i.e. pre-made gluten-free pizza crusts, certain cookies/sweets, etc...). And some things are better (chocolate-O's (i would choose chocolate-o's over oreos any day), most things my dad cooks (he really got into cooking after we went gluten-free B) ), etc...). So it has its ups and downs, just like non-gluten-free items.

7. Have you ever eaten gluten without knowing it then suffered for it?

Absolutely. One time i had these cookies and company that makes them also made some other cookies that were gluten-free, so i thought they would be fine. But low and behold about 2/3 of the way through the bag, i look at the back and it says WHEAT FLOUR :blink: . So i didnt end up going to school the next day. Oddly enough, when I think about bingeing on like pizza or something, i seem to get careless and almost everytime, i accidentally get wheat. So i dont think about it much anymore.

ianm Apprentice

1. how long have you had coeliac? My whole life.

2. At what age were you diagnosed? 36.

3. what foods do you miss out on? None, gluten made me so sick and unable to function that I just don't miss any of the things I used to eat.

4. How much does it cost to stay gluten free? Surprisingly a lot less than a grain, gluten based diet does. I simply don't need to eat as much.

5. Do you ever wish that you didn't have coeliac? celiac disease has forced me to take better care of myself so it is really a blessing in disguise.

6. Does the food taste better or worse or the same as ordinary food? It tastes better because my life is so much better.

7. Have you ever eaten gluten without knowing it then suffered for it? It happens from time to time no matter how careful you are.

Ianm

  • 1 year later...
May5 Newbie

1. how long have you had celiac? My whole life....

2. At what age were you diagnosed?

- I haven't actually been diagnosed....I've had about 4 blood tests and 4 or 5 biopsies and gastroscopies, but nothing. My mom's a pediatrician, so she noticed I something was wrong when I was about 2. I think she took me off gluten herself; I don't know if I'm a "real celiac"....I can actually eat gluten for months (sometimes years ) before feeling sick.. but I don't do it cuz eventually it does catch up to me....

3. what foods do you miss out on? PIZZA...GOOD, soft bread, FRENCH BREAD, Pastries my grandma makes, pita bread, VEGGIE MEAT (YUMYUM)

4. How much does it cost to stay gluten free? It seems VERY expensive....the flours are VERY expensive and so are all the other "treats"

5. Do you ever wish that you didn't have celiac? Yeah sometimes, especially a few months ago when I was hospitalized after a severe episode....

6. Does the food taste better or worse or the same as ordinary food? I'm pretty used to it....even though I've been "on and off" gluten free....but it's not really as good....

7. Have you ever eaten gluten without knowing it then suffered for it? no, not really....I mean, I HAVE eaten gluten without realizing it....but I don't get sick unless i eat like 10 pizzas, for example....so fortunately, no, I've never suffered from a small accident :D

francelajoie Explorer
can u answer these? a friend of mine is doin a report and he would like to know some information about us all!

> > >1. how long have you had coeliac? no idea, i'm guessing 1 year

> > >

> > >2. At what age were you diagnosed? 28

> > >

> > >

> > >3. what foods do you miss out on? cannoli's

> > >

> > >4. How much does it cost to stay gluten free? expensive food

> > >

> > >5. Do you ever wish that you didn't have coeliac? all the time but there are much worse diseases out there

> > >

> > >6. Does the food taste better or worse or the same as ordinary food? brownies are better, pasta is the same, bread is worse

> > >

> > >7. Have you ever eaten gluten without knowing it then suffered for it? yes

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    2. - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

    3. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    4. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

    5. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,473
    • Most Online (within 30 mins)
      7,748

    Kelly Hannon
    Newest Member
    Kelly Hannon
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
    • Roses8721
      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.