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

schuyler Apprentice

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

> > > I was diagnosed 3.5 months ago, but the doctor thinks that I'd probably had it for over half my life

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

> > > 20 years and 7 months

> > >

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

> > > Sometimes I miss the flavor of pasteries, cookies, soft bread, pizza, etc. But honestly I don't miss eating them because they made me so sick for so long, that sometimes just the thought of eating them again makes me feel sick.

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

> > > For me, this gluten-free diet is costing me a lot more than my old diet used to. Not only is the food more expensive, but I'm actually eating (the 6 months prior to my diagnosis I barely ate anything). I really don't mind spending the extra money, because it's helping me feel better!

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

> > > YES!!!! I wish that I didn't have to worry about food all the time. It'd be nice to be able to just eat whatever I want without worring about ingredients, cross contamination and other things.

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

> > > It depends. Most of the prepackaged things are worse, but I've found some that I like more (kinninnick or however it's spelled is awesome!). I've also made some homemade things that were complete disasters and some that I really liked. I think it just takes time to tweak recepies and discover good brands for the prepackaged things.

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

Oh yes!!! I had some trouble with cc initially. About two weeks ago I went out to eat to a little Mexican restaurant and I was assured that their chips were all gluten-free. Well I ended up so sick that I had to go to the hospital. I've also had problems with labeling issues where I've eaten something that was supposed to be gluten-free, only to find out that it wasn't.


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



Celiac.com Sponsor (A8-M):



penguin Community Regular

1. how long have you had celiac? Coming up on 4 years, after a bad bout of mono

2. At what age were you diagnosed? 22

3. what foods do you miss out on? French bread, hidden valley ranch dressing

4. How much does it cost to stay gluten free? A lot. I don't buy much replacement stuff, but there is so much trial and error involved, because a lot of it is stryofoam or cardboard.

5. Do you ever wish that you didn't have celiac? I'd make life easier, but at least I know what's wrong.

6. Does the food taste better or worse or the same as ordinary food? The same. Other than baked stuff, I make all the same stuff I did before. I cooked 95% gluten-free and didn't even know it!

7. Have you ever eaten gluten without knowing it then suffered for it? Too often. I'm still a "baby celiac"

cgilsing Enthusiast

1. how long have you had celiac?

I'm not certain, but the earliest I remember having celiac disease symptoms was in H.S. I was probably 14 or 15.

2. At what age were you diagnosed?

I was sortof diagnosed when I was 23, but I was never sent for a biopsy or a blood test....so it's not official I guess. I'm still working on that. I got back a positive gene test about a week ago though! I'm 25 now.

3. what foods do you miss out on?

I don't miss out on much....I make most of the things I like. If I miss out on something it's the experience of eating. I've always liked trying new restaurants, eating with friends...etc. That's hard now. I do miss McDonald's #3 without cheese though :ph34r: I heard it's not a #3 anymore though....ha that's sad it's been that long!

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

It definatly costs more.....how much more depends on your diet though. The specialty stuff is outrageous! I get some of that for treats. Pizza dough mix, hamburger buns, cookies, etc. But if I wanted to cut back on spending I could, but just making more naturally gluten-free stuff. We do that a lot anyway.

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

YES! I don't dwell on having celiac disease, but if someone asked me tomarrow if I wanted a pill to make it go away, I'd bite their arm off to get to it! I look at celiac disease as being a good life lesson in self-control though. It has been good for me in that respect. I know now that I can have complete control over what I allow myself. But I've learned my lesson and if you have that pill you better hand it over!!! :lol:

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

I think it's a matter of what you are used to. At first I didn't like the taste of gluten-free food. Everything had a funny aftertaste to me. Now I don't really taste it anymore in most foods. I do think now that I can taste wheat in food though! If I'm eating something by mistake, it tastes a little metalic to me or something. My husband sums it up though (he eats whatever he wants, but at home I make gluten-free for both of us). We were out to eat and he had some kind of pasta. I asked him how it was and he said he didn't like it, because it wasn't like the pasta at home! :lol:

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

Yes.....too often. It's a lot better now, and I am rarely glutened (once every few months), but it does happen.

Ashley Enthusiast

1. how long have you had coeliac? A year this month!

2. At what age were you diagnosed? Fourteen

3. what foods do you miss out on? Pretzels. I loved pretzels. And poptarts XD

4. How much does it cost to stay gluten free? Depends how much you buy gluten-free foods specially made ( cookies, pastas, breaded meats, ect.) If you don't but these much (which I don't except for cake mixes, for decortating class), it's not really that much more expensive.

5. Do you ever wish that you didn't have coeliac? Not really. Celiac makes me unqiue and personally I think it's a better way of an eating living style.

6. Does the food taste better or worse or the same as ordinary food? It tastes the same, but, it gets repetitive sometimes. I live though.

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

melly Rookie
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?

i was almost 13 when i went gluten-free dont now how long i had celiac disease or that i really do have it because i diddnt sta rt feeling alot better if at all but since im growing i should stay gluten-free i miss ot on cake cookies brownies ALL THE GREAT HOMADE STUFF THAT KID MOM BRIG TO SCHOOL PARTIES TORTURE oreos mint and creem oreos chips ahoy coke (coca cola) gingerale taco bell frenlys kfccheese cake and my favorite icecream that bothered me the most for awile i had dream s i was jut eating thje icecream then in the midle i relized i couldnt have it ive allwas felt saic i didnt know what caused it i really didnt feel diffrent there is no glutenfree oreo we got one once you could break yourtooth so it does have its advantages jut eatig something and not looking through substatutes

  • 2 weeks later...
HillaryT Newbie
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? i was diagnosed almost a year ago now, but i had symptoms for 6 months at least before that> > >

> > >2. At what age were you diagnosed? 18

> > >

> > >

> > >3. what foods do you miss out on? so many but mostly pizza, bagels, cookies....

> > >

> > >4. How much does it cost to stay gluten free? as a college student it costs alot. i go to school in nyc so instead of being able to eat a cheap luch or dinner of pizza it always costs over $10 for any meal

> > >

> > >5. Do you ever wish that you didn't have coeliac? every day...why would i want this?

> > >

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

> > >

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

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. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    2. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,154
    • Most Online (within 30 mins)
      7,748

    Kathy N
    Newest Member
    Kathy N
    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

    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.