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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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    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
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    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
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    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
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