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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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    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
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