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

Every One Welcome

Guest lorlyn

By Guest lorlyn
in Introduce Yourself / Share Stuff

Recommended Posts

Guest lorlyn
Guest lorlyn
Posted

i hate celiac and it stinks. so tell me how you feel :rolleyes:

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

Celiac.com Sponsor (A8-M):


blueeyedmanda Community Regular
blueeyedmanda
Posted

I can't say I am always fond of celiac but it has helped me become more healthy and I have learned a lot from having it in the two short years since I found out. How long have you had celiac? If this is the beginning for you, it does seem overwhelming, but it will get a lot better.

As for gluten free food, I know this is hard to believe, since you have probably had you share of nasty cardboard tasting but the food has come a long ways since I first started the diet, there are more choices.

You have found a great place where you can vent your frustrations with others. We have all been there so we know exactly how you feel. Trust me though it does get easier! Good Luck.

lonewolf Collaborator
lonewolf
Posted

Sometimes I get frustrated that my diet is limited. And somedays I feel like it stinks. But for the most part, I'm thankful to be healthy. I'm supposed to be in a wheelchair, but changing my diet helped me to get healthy again, so I see it as freedom. I was an athlete growing up and I'm a PE teacher and basketball coach now, so I'm VERY happy that I escaped that wheelchair!

It's hard to look into the future to see what problems you are avoiding by taking care of yourself now, but I hope that you are thankful that you found out what your problem is. I have a 15 year old daughter who decided to go gluten-free on her own - no Celiac diagnosis or anything. She just realized that she felt better when she didn't eat gluten and decided that she didn't want to get sick like I did - she'd rather prevent the problems now than try to fix them later. Sometimes she feels like it stinks too, but it's probably easier for her because I make all kinds of treats and gluten-free "junk food" that even her friends like. The hardest part for her is watching the kids at school eat pizza at lunch. I try to make pizza at home sometimes so she doesn't feel too deprived.

Kassie Apprentice
Kassie
Posted

i actually don't think the diet is that bad. i eat a lot of what i used to just made gluten free- cookies, cakes, brownies, bread, pasta, pancakes, and so forth- plus i am not eating more fruits and vegetables. the only thing that gets me are crackers cant seem to find a good substitute for those, and when i watch some one eat a big cheesy slice of pizza or a cheeseburger.

don't get me wrong, i would really rather not have celiac, but i have learned to deal with it. i put it this way. trials make you stronger, and this is just one more really adding to your strength

jerseyangel Proficient
jerseyangel
Posted

Well, I wouldn't have chosen it :lol: , but I was sick for so long before I found out I had it, that it was really a relief.

I only wish that I hadn't developed all of the other food intolerances. :angry: That really narrows my choices, but most days I am just happy to feel well. :)

It could always be worse ;)

dlp252 Apprentice
dlp252
Posted

At this point celiac is the least of my worries. :lol:

Daxin Explorer
Daxin
Posted

I wouldn't say I HATE it eactly. I would not CHOOSE this if I could!

I would however say that it is more than mildly inconvienient. :P

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

Celiac.com Sponsor (A8-M):


girlfromclare Apprentice
girlfromclare
Posted

Celiac stinks yes but so do lots of other disease that are much worse than this and much harder to cope with. You are lucky that celiac disease can be handled by diet and not medications or worse... I wouldnt have chosen celiac disease for my son who is four years old but he is so wonderful on it... he isnt sick any more... he has gained weight for the first time in two years and he has lots of cool treats that he can have - gorgeous biscuits and cakes that I like to sneak myself. I know it can be hard to be different and hard to not be able to take the things we love but as a teenager i used to love being different from everyone else. I relished it! Think of it as something that makes you special and makes you stand out from the crowd! You will be happier and healthier on the celiac diet... and if you have things to get off your chest, you've found the perfect place to do it as everyone here can empathise with you!

Viola 1 Rookie
Viola 1
Posted
i hate celiac and it stinks. so tell me how you feel :rolleyes:

I don't know if I hate Celiac or the inconvenence of the disease. For the most part ... when I'm at home ... I don't even think about it. However, when it comes to going out or travelling I hate the necessity of being "picky" about ordering food etc.

Even after all these years I yearn to be able to walk into a cafe after driving for several hours and order a coffee and muffin :rolleyes:

Felidae Enthusiast
Felidae
Posted

I don't hate being gluten intolerant because I think that it has actually forced me to eat healthier. However, I do hate the inconvenience of it. I think it has prevented me from applying for certain jobs. It has made me uneasy about travelling, which is something that I have always loved.

Guest lorlyn
Guest lorlyn
Posted

i dont ecacly hate i do feel better but its sooooooo tempting i hate the temptation part and now i feel better when i play soccer im not as tired anymore but i wish celiac was a murder and i was a cop caught celiac and put it on death row lol any replys??? B)

i hate celiac and it stinks. so tell me how you feel
:rolleyes:

Kara B. Newbie
Kara B.
Posted
i dont ecacly hate i do feel better but its sooooooo tempting i hate the temptation part

i no how u feel. i've had celiac for about a year. @ 1st i didnt want 2 eat the diet bcuz i new wut food w/ gluten in it tastes like & some gluten free stuf is grosss!!!

wen i c sum1 has a pizza or a cinamon roll or even a pb&j sandwich i just wunt 2 go take a BIG bite out of it. its horible!!!

Phyllis28 Apprentice
Phyllis28
Posted

After almost 29 years on a gluten-free diet is simply part of my life, though I would not have chosen to have celiac. I'm a mom of a teenager, I work full time, I travel for pleasure when I can and I travel for work about 10 weeks a year. I am happy to be healthy enough to do all these things.

The one thing that still irritates me is pushy people who won't accept "No thank you" when I refuse their offering of gluten goodies and keep insisting I eat them. :angry:

Liz92 Rookie
Liz92
Posted
After almost 29 years on a gluten-free diet is simply part of my life, though I would not have chosen to have celiac. I'm a mom of a teenager, I work full time, I travel for pleasure when I can and I travel for work about 10 weeks a year. I am happy to be healthy enough to do all these things.

The one thing that still irritates me is pushy people who won't accept "No thank you" when I refuse their offering of gluten goodies and keep insisting I eat them. :angry:

Ha ha, thats funny :P ya, thats probably the worst... especially when people start saying you have wierd mental food disoroders behind ur back... :angry: :angry: that makes me angry... gbut they usually believe you eventually... I think...

What do you eat and stuff when you travel??? that must be fuuussterating.. :blink:

yaaa... <_<

Guest lorlyn
Guest lorlyn
Posted

hey every1 try light tapipoca bread it taste like normal!!!!!!! :lol::lol::lol::lol::lol::rolleyes::rolleyes::D:D:D:DB)B)B):):):)

i no how u feel. i've had celiac for about a year. @ 1st i didnt want 2 eat the diet bcuz i new wut food w/ gluten in it tastes like & some gluten free stuf is
grosss!!!

wen i c sum1 has a pizza or a cinamon roll or even a pb&j sandwich i just wunt 2 go take a BIG bite out of it. its horible!!!

Kara B. Newbie
Kara B.
Posted

i wil hav 2 try that tapioca bread :)

Phyllis28 Apprentice
Phyllis28
Posted
What do you eat and stuff when you travel??? that must be fuuussterating.. :blink:

yaaa... <_<

When I travel my goal is to eat most of my own food. I rent a room with a kitchen. The Marriott chain has TownPlace Suites and Residence Inns which both have kitchens.

If traveling by car, I bring all my food and necessary cooking equipment. I precook and freeze as much as I can to put in an ice chest. I buy perishables such as milk and fruit when I get to the destination. My family usually stays in one place for a week.

If traveling by air I bring along enough food for a meal and 1/2 in my carry on luggage. If I going to somewhere I have not been before I look online for stores that sell gluten free food by using the websites of the specialty gluten free companies. These companies usually have a store locater section. I call grocery stores that look promising and get their hours, some idea of selection and distance from my hotel. I always rent a car. I eat simply - examples are plain meat, cheese, raw vegetables, fruit, gluten free cereal, soft boiled eggs, milk, juice, yogurt, Hormel deli meats, gluten free bread and gluten free goodies I find that are not available at home. The following is a list of food I consider packing in my check-in suite case in a soft sided lunch box with blue ice:

Slices of homemade pizza - frozen

Homemade Salad dressing - leak proof container

Homemade chicken nuggets - frozen

Baked Potato - frozen

The blue ice and soft sided lunch box allow me to bring my lunch to work while I am on travel. I also make sure I have Plastic forks, spoons, knives, bowls and plates. Sometimes I bring them, other times I buy them when I get there.

I also try to locate safe gluten free restaurants in the area I stay in using the internet.

It takes bit of planning but this is what works for me. I know from reading the posts of other celiac travelers that other travel strategies are available.

Kara B. Newbie
Kara B.
Posted
When I travel my goal is to eat most of my own food. I rent a room with a kitchen. The Marriott chain has TownPlace Suites and Residence Inns which both have kitchens.

If traveling by car, I bring all my food and necessary cooking equipment. I precook and freeze as much as I can to put in an ice chest. I buy perishables such as milk and fruit when I get to the destination. My family usually stays in one place for a week.

If traveling by air I bring along enough food for a meal and 1/2 in my carry on luggage. If I going to somewhere I have not been before I look online for stores that sell gluten free food by using the websites of the specialty gluten free companies. These companies usually have a store locater section. I call grocery stores that look promising and get their hours, some idea of selection and distance from my hotel. I always rent a car. I eat simply - examples are plain meat, cheese, raw vegetables, fruit, gluten free cereal, soft boiled eggs, milk, juice, yogurt, Hormel deli meats, gluten free bread and gluten free goodies I find that are not available at home. The following is a list of food I consider packing in my check-in suite case in a soft sided lunch box with blue ice:

Slices of homemade pizza - frozen

Homemade Salad dressing - leak proof container

Homemade chicken nuggets - frozen

Baked Potato - frozen

The blue ice and soft sided lunch box allow me to bring my lunch to work while I am on travel. I also make sure I have Plastic forks, spoons, knives, bowls and plates. Sometimes I bring them, other times I buy them when I get there.

I also try to locate safe gluten free restaurants in the area I stay in using the internet.

It takes bit of planning but this is what works for me. I know from reading the posts of other celiac travelers that other travel strategies are available.

That sound like a lot of work and preparation. I will have to consider it sometime if I travel.

darlindeb25 Collaborator
darlindeb25
Posted

I agree with Donna--celiac is the least of my problems now. Of course my problems are because of celiac disease to begin with. ;)

Viola 1 Rookie
Viola 1
Posted
I agree with Donna--celiac is the least of my problems now. Of course my problems are because of celiac disease to begin with. ;)

Isn't that the truth! :o

Carriefaith Enthusiast
Carriefaith
Posted

When I was diagnosed with celiac disease, I was actually thankful because I didn't have to take meds for life and it wasn't a terminal illness. There were a few times where I would get annoyed at food limitations. Now sometimes I wish celiac disease is all I had to worry about... I spend a lot of time worrying if something I'm eating is going to give me a severe allergic reaction.

babygirl1234 Rookie
babygirl1234
Posted

celiac disease can be very hard for me at times because i see something i used to like and say" i wish i could have that" LOL

Guest lorlyn
Guest lorlyn
Posted

im sooooooo upset i want a cinnimon role!! i eat them im my dreams! lol but ill get

over it tell me wat temptats yall
B)

L
O
R
L
Y
N

Archived

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

Go to topic listing

  • 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
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    2. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in...
    3. SilkieFairy
      - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash...
    4. catnapt
      - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      learned I had a high PTH level in 2022 suspected to be due to low vit D got my vit D level up a bit but still have high PTH I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

      I am on day 13 of eating gluten and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
×
×
  • 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.