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sequoiacyclist

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sequoiacyclist Newbie

Hey everyone,

I am a college student who was recently diagnosed with celiac's disease. Often I find myself frustrated and dissapointed with friends and family members because they have a hard time understanding the things I struggle with in regards to living the gluten free lifestyle (fear of restaurants, cooking in other kitchens, and insisting on preparing my own foods for the holidays to name a few!). It would be nice if I had someone else my age to talk to about these issues, but I seem to be the only one in this area (Central California) with celiac disease. Is there anyone else out there needing someone to talk to too?

Sarah

sequoiacyclist@yahoo.com

  • 3 weeks later...

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CeliacAlli Apprentice
Hey everyone,

I am a college student who was recently diagnosed with celiac's disease. Often I find myself frustrated and dissapointed with friends and family members because they have a hard time understanding the things I struggle with in regards to living the gluten free lifestyle (fear of restaurants, cooking in other kitchens, and insisting on preparing my own foods for the holidays to name a few!). It would be nice if I had someone else my age to talk to about these issues, but I seem to be the only one in this area (Central California) with celiac disease. Is there anyone else out there needing someone to talk to too?

Sarah

sequoiacyclist@yahoo.com

Hey :)! First off welcome to the forum! I don't live in california and I'm only 15 but I'd love to talk with you!! If you have any questions, ask away!! You can message me on here anytime or just add to this discussion :)

Look forward to talking with you :)!!

Allison

RideAllWays Enthusiast

I'm in university too...it's hard, eh? If you want to chat email me at d.hoholuk@hotmail.com or add me to msn :)

RideAllWays Enthusiast

I'm in university too...it's hard, eh? If you want to chat email me at d.hoholuk@hotmail.com or add me to msn :)

  • 2 weeks later...
AKcollegestudent Apprentice

I'm a college student in Massachusetts, but trust me, I know the feeling.

Fitze082 Newbie
Hey everyone,

I am a college student who was recently diagnosed with celiac's disease. Often I find myself frustrated and dissapointed with friends and family members because they have a hard time understanding the things I struggle with in regards to living the gluten free lifestyle (fear of restaurants, cooking in other kitchens, and insisting on preparing my own foods for the holidays to name a few!). It would be nice if I had someone else my age to talk to about these issues, but I seem to be the only one in this area (Central California) with celiac disease. Is there anyone else out there needing someone to talk to too?

Sarah

sequoiacyclist@yahoo.com

Hey. Well I guess my situation is extremely different from yours. I live with my mom and sister both of which have celiac disease too. But I understand when it comes to my dad. He has gotten better over the last year or so, even though i have been diagnosed for almost 6 years. He buys gluten free soy sauce and pasta but he still seems to not understand some things. Its hard when people want to go out to italian restaurants because its one of the hardest places to eat and they dont seem to understand. OR he definitely doesnt understand when i get sick from cross contamination. Are you living on campus? Food is one of my biggest fears when it comes to college. I'm at a local one right now

  • 2 weeks later...
Sarenha Newbie

I'm 20, a college student (sort've, I took a break to get healthy once I got really bad), and tooootally know what you mean.

My family didn't want me cooking my own food for my birthday dinner, and so we went out, even though I insisted I really REALLY would rather eat in.

They made reservations at an Italian place. I guess they forgot. *sigh*

It does get better. My room mate has been my best friend since Junior year in high school. He silently started doing things, without remark, like putting a label on the things he cooks with all the ingredients, because he knows I don't trust gluten-free labels without double checking. His hobby is making artisan breads, and he's stopped doing that when I'm home too. I never said anything to him.

Some of your family and friends may make it a game- my mom and aunt play "find the gluten-free food items" like it's a scavenger hunt. Some will obsess about it- for me, that's my dad, who would drive ten hours to find a decent gluten-free pasta if he needed too.

Eventually they'll all get used to it in their own ways and you'll be able to trust them (sort've) enough to eat what they serve you at holiday meals or family dinners without looking over their shoulders the whole way.

Also, a bunch of people have celiac. We don't announce it everywhere, we don't talk about it out loud all the time, but if you pay attention, and if YOU talk about it, everyone knows someone, and one of those people is probably a friend just your age.


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Angels~Exist Newbie

Hey I am 16, diagnosed Celiac May 26, 2009 It can be hard sometimes trusting others to cook for you. Most of the time you only trust yourself to make food that won't hurt you. I have been glutened by people that only had the best of intentions. The only way to really avoid this is to bring food when you go anyplace that isn't home to eat. At first it may offend people but if you explain they will agree that your health comes first.

amberlink09 Apprentice

Hey! I am a freshman at UT (in Austin, TX). I was literally diagnosed with Celiac the day before I moved into my dorm. When I got to Austin I had to find a new doctor to do my biopsy, bone density tests, etc. It has been quite the semester. I don't know any other college student here with Celiac disease and my friends and family don't really understand how serious it is. I can't eat in the cafeteria so I'm pretty much forced to eat in my dorm all the time with whatever I can make in the microwave (I have gotten pretty creative). I'm still sick a lot from cross contamination and I'm still trying to heal, though I think my immune system is still not doing so well. But yeah, mostly I have found out that not being able to eat gluten or cheese has become a HUGE social block. It gets really hard and pretty lonely sometimes

Anna and Marie Newbie

hey Sarah,

I'm a little late to your post, sorry!, but I'm a college freshmen in KY. Not that you'll know where that is <_<

Any way, feel free to email me at acmiha01@louisville.edu any time. How long have you had it? I've known for about 5 years now - trust me, it gets easier :D

Anna

  • 6 months later...
Hineys <3 Newbie

hey Sarah,

I'm a little late to your post, sorry!, but I'm a college freshmen in KY. Not that you'll know where that is <_<

Any way, feel free to email me at acmiha01@louisville.edu any time. How long have you had it? I've known for about 5 years now - trust me, it gets easier :D

Anna

Oh my goodness, Talking about late, Im late to this! But Im so happy to see someone from Kentucky! Im a Senior in high school and hate sitting in the cafeteria with my freinds that are eating pizza while im eating something gluten-free but after a few months it got easier.Especially with family that has helped so much!

  • 4 months later...
CJoy Newbie

I was diagnosed two weeks before I moved back to school- let me just say I was very nervous about handling everything on my own. I seemed to be adjusting ok at the beginning of the year but now I find myself very self conscious, frustrated, and depressed. I hate standing out and being known as "that kid" and because of this I try not to talk to people about my issues or get help when I need it. That being said I know how you are feeling. And realizing that I

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
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