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Someone To Talk To

sequoiacyclist

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sequoiacyclist Newbie
sequoiacyclist
Posted

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
CeliacAlli
Posted
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
RideAllWays
Posted

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
RideAllWays
Posted

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
AKcollegestudent
Posted

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

Fitze082 Newbie
Fitze082
Posted
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
Sarenha
Posted

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
Angels~Exist
Posted

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
amberlink09
Posted

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
Anna and Marie
Posted

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
Hineys <3
Posted

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
CJoy
Posted

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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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      My only proof

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      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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