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

Does Anyone Like Being Celiac


runningcrazy

Recommended Posts

runningcrazy Contributor

I know I probably sound like a nut, but I kind of enjoy it. I've always been a weird eater, and im also dairy free and vegetarian...I guess its kind of fun for me to be different.

Sure I hate getting weird looks when i bring weird food, or not being able to eat the cake at a party, or having to look stuff up ahead of time, or accidently contaminating myself..(jeez maybe im talking myself out of liking it) But I like to know that i am doing something healthy and i like the challenge of finding/making new foods. Does anyone else relate?


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



Celiac.com Sponsor (A8-M):



Emilushka Contributor

I enjoy feeling better again. I can't say that I enjoy Celiac ... I'm weird enough without having dietary restrictions. But I don't really mind the Celiac too much by itself. I really miss cheese. I think if I could get back the ability to eat cheese, I wouldn't mind at all.

Rocknroll Celiac Newbie

it's funny, i'm a much different person than all my peers to begin with, and being a celiac - although extremely alienating - does force me to live a more healthy and productive lifestyle. I don't enjoy not being able to take part in any social aspect that all the other young people around me do, but the fact of the matter is that partying and being cool are a symptom of 21st century culture. It really opens up a different perspective on what the universe has planned for me.

So, no sir, I don't like it. But I like the effects of it.

jeanne- Rookie

Funny you started this thread. Yesterday I got the results from the genetic testing. Everything came back neg. I was disapointed. The gluten free diet does make me feel better (dx'ed non celiac gluten sensitivity). But I know that my family will think I can cheat because I don't have a REAL disease. If I could tell them that I have celiac, there would not be any hassle about meals for the holidays. I can hear them now asking why do I always have to be weird and different.

Coinkey Apprentice

Funny you started this thread. Yesterday I got the results from the genetic testing. Everything came back neg. I was disapointed. The gluten free diet does make me feel better (dx'ed non celiac gluten sensitivity). But I know that my family will think I can cheat because I don't have a REAL disease. If I could tell them that I have celiac, there would not be any hassle about meals for the holidays. I can hear them now asking why do I always have to be weird and different.

Ha Ha. That was my exact feeling. Disappointment that it is not properly diagnosed. So now I get to answer people with- I just feel better not eating gluten so I don't, most of the time it can't be diagnosed properly anyway and you have to be severely far gone for them to catch it- so I'm taking a shortcut and feeling way better and living my life from 26 instead of 45. Then I bite into my delicious rice pasta dish when they are sat there eating icky Kraft Dinner. :P I like being gluten free.

Juliebove Rising Star

I don't have celiac but I do have diabetes and other food allergies.

You mentioned cake. I have always hated cake! So much so that I used to ask for no cake to be served at my birthday. Frankly I would be far happier if there were no sweets served at my birthday. I have never been a big sweets eater. But my mom always insists on having something. She used to get me pie. I don't really like pie either. One year I just said I wanted fresh strawberries and sugar cookies. But do you think they could find sugar cookies? Apparently they are hard to find. And my mom doesn't like to cook or bake. But they finally found those and we had that.

Now at birthdays my mom my makes a big to do. Not only does she get the birthday person's favorite dessert, but she gets desserts for everyone else as well. Except for my daughter who needs the gluten-free. I think perhaps she just doesn't understand the diet for her or something. Or maybe she can't find the right stuff. She and my dad did go to the U district a couple of times for a vegan, gluten-free cake for her birthday. But now they just tell me to bring something for her. And she wants Udi's blueberry muffins. Fine.

But for me? Makes it tons easier. Used to be I would decline the cake, because I didn't want the cake and they would always insist that I ate least try the cake. Well, now I can't. I just tell them I have diabetes and an egg allergy and can't have it. Shuts them right up.

But would I honestly want to have diabetes and food allergies? Of course not! However I look at it from the standpoint that nobody is perfect. We all have something wrong with us. Or perhaps I should say something that makes us different than other people. It's just something we all have to deal with. I might not have celiac, but I have my own issues.

cassP Contributor

Funny you started this thread. Yesterday I got the results from the genetic testing. Everything came back neg. I was disapointed. The gluten free diet does make me feel better (dx'ed non celiac gluten sensitivity). But I know that my family will think I can cheat because I don't have a REAL disease. If I could tell them that I have celiac, there would not be any hassle about meals for the holidays. I can hear them now asking why do I always have to be weird and different.

nonceliac gluten intolerance can be just as serious!!!! sometimes more... just depends on everyone's individual makeup... and genetics.. gluten has been linked to Crohns.. antigliadin antibodies has been linked to heart disease.. wheat germ agglutin has been linked to esophageal and prostate cancer.. goes on and on and on..

PLUS- you said your genetic test was negative- but what did they test for?? only DQ2 and DQ8?? there's possibly 27 genes that could be involved


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



Celiac.com Sponsor (A8-M):



jeanne- Rookie

nonceliac gluten intolerance can be just as serious!!!! sometimes more... just depends on everyone's individual makeup... and genetics.. gluten has been linked to Crohns.. antigliadin antibodies has been linked to heart disease.. wheat germ agglutin has been linked to esophageal and prostate cancer.. goes on and on and on..

PLUS- you said your genetic test was negative- but what did they test for?? only DQ2 and DQ8?? there's possibly 27 genes that could be involved

The test covered DQ1,2,3,and8. The test for Hashi's was a definate pos. at 1362 (normal < 60). Point well taken.

kareng Grand Master

Funny you started this thread. Yesterday I got the results from the genetic testing. Everything came back neg. I was disapointed. The gluten free diet does make me feel better (dx'ed non celiac gluten sensitivity). But I know that my family will think I can cheat because I don't have a REAL disease. If I could tell them that I have celiac, there would not be any hassle about meals for the holidays. I can hear them now asking why do I always have to be weird and different.

Why do they have to know the exact test results? Obviously, you are gluten intolerant. Tell them you have tested positive for gluten intolerance, cause ,with the diet response, you have.

cassP Contributor

The test covered DQ1,2,3,and8. The test for Hashi's was a definate pos. at 1362 (normal < 60). Point well taken.

there's gluten intolerants & celiacs on here with DQ6 and DQ9, etc, etc,

there is still so much for the medical community to learn about all of this

YoloGx Rookie

I like being celiac in that following this diet I look and feel like I am 15 to 20 years younger than most people my age (61). I also am much more knowledgeable about health which feels good. I already went through a lot of the stuff beginning in my twenties that a lot of people don't face until they are my age.

The final blessing came 3 years ago when I discovered I needed to be free of even trace glutens--which I didn't know about previously. The change in my health for the better was and is remarkable! I feel like I am way ahead of the game in that respect. I now look forward to the rest of my "old age" rather than dreading it like most people in this country. When I look at the average diet I cringe actually. I certainly wouldn't want to eat like most people here do...

Nevertheless, it would be nice to be less reactive to trace amounts of gluten since as it is I get cc'd from trace gluten in the environment at work etc. and have resultant migraines etc. I would rather not deal with. However it still is way better than being sick for one to three months like I used to get all the time...

One benefit actually that I have read about and observed is that it is often the case that people who have celiac and don't eat gluten are more flexible, are more resistant to disease and often live to be older compared to the rest of the population.

Bea

sandsurfgirl Collaborator

Funny you started this thread. Yesterday I got the results from the genetic testing. Everything came back neg. I was disapointed. The gluten free diet does make me feel better (dx'ed non celiac gluten sensitivity). But I know that my family will think I can cheat because I don't have a REAL disease. If I could tell them that I have celiac, there would not be any hassle about meals for the holidays. I can hear them now asking why do I always have to be weird and different.

Don't tell them!!! Lie and say it was positive. Make your life easier!!!

sandsurfgirl Collaborator

This is crazy talk-- liking celiac! LOL I abhor celiac and the pain in the buttocks it is for me. But... I love feeling good so I love that I was finally diagnosed celiac and I'm not sick anymore.

But if I could have 3 wishes from a genie I'd wish to be a gluten eater again in a heartbeat. Celiac SUCKS!!!!!

modiddly16 Enthusiast

I don't really like being a celiac but I do like educating people about it! Most people I talk to are quite interested in learning more about it and I think the more educated people are on the disease, maybe the more I'll end up liking it in the future when more places offer items for us to enjoy! (that may have been the longest sentence ever...I had to breath even after typing it :P )

kitgordon Explorer

I enjoy the challenge of cooking and baking new things, and finding and adapting recipes - I am actually liking to cook more than I have in years. I had gotten into such a rut of cooking the "same old things". And I enjoy not being afraid to be away from the bathroom. But, if I could make celiac go away, and go back to eating like everybody else, I would, of course.

precious831 Contributor

In my most optimistic voice I say, absolutely not! I don't like being this way. Even makes it harder because I have to be completely grain-free, aside from dairy and soy-free.

lynnelise Apprentice

Basically I like that it can be treated on my own without expensive drugs. I like that it can get me out of situations like eating gross storebought cake at work without hurting anyone's feelings.

I don't like that it makes traveling a pain. That outings with friends always involve a big debate about where I can and can't eat. I especially don't like that when my baby nephews toddle up with cookie crumbs all over their hands and face I have to reject their hugs and kisses.

tarnalberry Community Regular

I like that it has forced me to go out of my way to try new things and not fall into a "standard american diet" rut. It means that going dairy free was much easier, cooking for my picky husband is much easier, making modifications for other dietary issues (baby, hubby's high blood pressure, vegetarian friends, etc.) is much easier.

The rest of it, I'm fairly ambivalent about. It is what it is.

GlutenFreeManna Rising Star

Some days I like it, some days it's a nightmare. Just depends on the situation and my mood I guess. I like being healthy. I like cooking. I like trying new foods. I don't like the inconvience. I don't like the social limitations. I REALLY don't like that the smallest amount of CC can make me sick for close to a week.

srall Contributor

I agree with many of the above posters. This has forced me to really look at the American Diet. Because my diet was so "limited" (or so I thought) it ended up opening up a variety of yummy food I never considered. I've learned so much about eating organic, non processed food. I'm amazed that so many of my physical symptoms can be completely managed without drugs, just food and exercise. I in my heart believe that most of the population is walking around feeling like crap all the time and calling it normal. Until my body was clean I didn't realize I felt absolutely, well, like crap for probably a good decade. I feel years younger.

So it's totally inconvenient, has made traveling a scary ordeal...but I love feeling good and eating well.

GFinDC Veteran

I figure we are all made the way we are for a reason. And we need to accept that there is a reason for it and it is for the good. We may not understand it, but that's ok. We is just people after all. My cousin is unable to walk since birth, he is studying to be a teacher, and my ex has a son who can't walk. I've had friends who were blind, and I know a woman who is a quadraplegic and runs an IT department for the Navy and comes to work everyday in a wheelchair. She can't even drive. I like that I am not any of those people, even though they are actually amazing and wonderful people.

kdonov2 Contributor

I enjoy the challenge of cooking and baking new things, and finding and adapting recipes - I am actually liking to cook more than I have in years. I had gotten into such a rut of cooking the "same old things". And I enjoy not being afraid to be away from the bathroom. But, if I could make celiac go away, and go back to eating like everybody else, I would, of course.

^^^^^^Agreed.

Skylark Collaborator

As far as health problems go, it's not too bad. At least diet treats it. I don't feel like I'm missing out on anything important in life now that I'm gluten-free. If I could snap my fingers and not be celiac, I definitely would.

cap6 Enthusiast

Almost age 60 and only 7 months celiac. Do I like it? hmmm Some days I hate it and other days I don't mind so much. Each day I think it gets a tad easier. What I do like is that for the first time in my life I feel healthy and am eating healthy. I am enjoying trying new foods and (on some days!!) learning to cook. Overall - I don't like it and I don't hate it. It is as it is. Hey - we're all special!!! :o

anabananakins Explorer

Funny you started this thread. Yesterday I got the results from the genetic testing. Everything came back neg. I was disapointed. The gluten free diet does make me feel better (dx'ed non celiac gluten sensitivity). But I know that my family will think I can cheat because I don't have a REAL disease. If I could tell them that I have celiac, there would not be any hassle about meals for the holidays. I can hear them now asking why do I always have to be weird and different.

Ha, I was the same when I got my gene test results. I know I can't eat gluten, it would have been nice to have a concrete reason why. Oh well, I'm just waiting for science to catch up with how I feel.

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

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

    3. - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    4. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    5. - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,466
    • Most Online (within 30 mins)
      7,748

    Mike G Army EOD
    Newest Member
    Mike G Army EOD
    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

    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.