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I'm Feeling Lonely Because Of Celiac


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#1 DS29790bb

 
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Posted 23 June 2012 - 01:45 PM

I am a 19 year old guy, currently a college student (home for break though). I have had celiac for five years, so I'm familiar with the disease and everything. I also have Type 1 diabetes, which I've had for six years. So I got two life-changing diseases within one year of each other.

Basically, I am sick and tired of having these diseases. I have no one to talk to and I feel lonely. All of my friends have told me that they think I have a great attitude about life while dealing with these.....I always act positive. But on the inside, I cannot stand it anymore. Every time I go out with friends, I have to bring my diabetic stuff and on top of that, I cannot just eat anywhere because of celiac. I have to make plans all the time and call restaurants or just order salads, which makes me and my friends feel awkward. When I'm out with friends and we're all hungry, they ask where I can eat at and it just makes me feel like crap when they have to adjust plans for me. It's torture being around girls when eating and then you have to tell them that you just can't eat pretty much everything.....then they think it's weird. There's so much more too, but I am really just getting tired of it.

I don't know what I need, but I feel terrible and alone. I went to a couple support group meetings but there really wasn't anyone my age there and I couldn't relate. One time in the dining hall at college, I met a girl who overheard me and a friend talking about gluten and she said she was celiac too, but I was so stupid and didn't become friends with her and I've never seen her again. I just want to meet someone who also has celiac or a gluten intolerance at the least so I don't feel so alone, but I can't find any (they don't just come up). I also was asymptomatic, so if I ever do eat gluten, I don't feel bad, which is usually motivation for others.

Sorry for the rant here, but my point is that I have two diseases that take a huge toll on my social life and interactions with people. I am really, really getting tired of this and I feel so lonely because there is no one to really talk to about it. I'm losing motivation (not for life.....but I'm losing motivation to stay gluten-free). How do I deal with this feeling/lack of motivation? I really need help. Thanks!
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#2 kaitlynrose

 
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Posted 23 June 2012 - 04:45 PM

Hello, I'm a 17 year old girl with Celiac, and I know just what you mean. I have a cousin with Celiac and Type 1 Diabetes, and she also is often told she has a great attitude about life. Myself, having only Celiac cannot fully relate on a personal level, but I see what she really goes through. She is asymptomatic as well, so she often cheats and eats gluten.

I get very sick when I eat gluten, so I can't ignore having Celiac. I feel awkward with my friends, and even my family, when they have to change plans just so I can eat. They are all very accomodating and kind when it comes to finding food I can eat, but its just a hassle. I went to a party last night, and all the food they had was planned around me. It's very nice that they will do that for me, but I feel bad knowing they went so far out of their way just to feed me.

I live in a pretty rural area, and I feel like my cousin and I are the only ones with Celiac for miles and miles and miles. I want to find a support group, so I can find people that are going through the same things as I.

Don't lose motivation to stop eating gluten-free. As much of a pain it is to find things to eat, being healthy is certainly worth it!
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#3 IrishHeart

 
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Posted 23 June 2012 - 04:47 PM

Welcome!! and do not be sorry for venting. :) We get to do that on here. You have every right to squawk a little ---as you have had to deal with so much at such a young age.

I cannot imagine how hard it is for you having two AI diseases that require dietary compliance, especially when you do not have an overt reaction to gluten. If anyone would be tempted to cheat, it would be you. So, I applaud you for doing such a great job and taking excellent care of yourself.

Is there a celiac support group in your area? If so, maybe you should go!

I know someone who deals with both diabetes and celiac disease and I'll get him to chime in here.

You are not alone, kiddo--we are here for you.
IH
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

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"Do or do not. There is no try. "-  Yoda.

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Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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#4 Skylark

 
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Posted 23 June 2012 - 05:18 PM

Welcome to the board! Do you mind an answer from an adult? Because I sure feel the way you do sometimes.

I'm going to a party tonight. They will serve beer and I will have to bring my own cider if I want something to drink. I've eaten dinner ahead of time because I will not be able to snack at the party. Even if there is gluten-free food there will be cracker crumbs everywhere because nobody cares that their crumbs make me unable to eat. I will have a bag of dried fruit in nuts in my purse in case the party goes late and I get hungry. I HATE that, not being able to even pick up a stupid carrot stick for fear of CC. I will enjoy the company though, so that's why I'm going.

You have to enjoy the friendships you have, even if they're not celiac/diabetic and don't fully understand what you're coping with. It sounds like your friends are pretty cool if they go out of their way for you. And yeah, I know that salad dinner all too well. And that awkward feeling that I'm asking my friends to change plans...again. Thing is, my friends really don't mind. I bet yours don't either. We like hanging out and the food really isn't that important.

As far as dating, we have a built-in jerk detector. If a girl is more interested in what you eat than who you are, you know right away that she is shallow and probably not worth your time. I don't even bother with a second date if the guy gives me a hard time about my diet. I mean what will he give me a hard time about next??? There will be a time when a girl will come along who thinks you're awesome, and she won't care in the least that you eat a lot of salad and carry insulin with you.

On the bad days, you just gotta grit your teeth and hang in there. Come here and we'll commiserate because we all go through the same awkward social stuff.
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#5 Lisa

 
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Posted 23 June 2012 - 05:36 PM

Welcome to the board! Do you mind an answer from an adult? Because I sure feel the way you do sometimes.

I'm going to a party tonight. They will serve beer and I will have to bring my own cider if I want something to drink. I've eaten dinner ahead of time because I will not be able to snack at the party. Even if there is gluten-free food there will be cracker crumbs everywhere because nobody cares that their crumbs make me unable to eat. I will have a bag of dried fruit in nuts in my purse in case the party goes late and I get hungry. I HATE that, not being able to even pick up a stupid carrot stick for fear of CC. I will enjoy the company though, so that's why I'm going.

You have to enjoy the friendships you have, even if they're not celiac/diabetic and don't fully understand what you're coping with. It sounds like your friends are pretty cool if they go out of their way for you. And yeah, I know that salad dinner all too well. And that awkward feeling that I'm asking my friends to change plans...again. Thing is, my friends really don't mind. I bet yours don't either. We like hanging out and the food really isn't that important.

As far as dating, we have a built-in jerk detector. If a girl is more interested in what you eat than who you are, you know right away that she is shallow and probably not worth your time. I don't even bother with a second date if the guy gives me a hard time about my diet. I mean what will he give me a hard time about next??? There will be a time when a girl will come along who thinks you're awesome, and she won't care in the least that you eat a lot of salad and carry insulin with you.

On the bad days, you just gotta grit your teeth and hang in there. Come here and we'll commiserate because we all go through the same awkward social stuff.

^This made me smile! Probably because it's so true and so very well said, Skylark. Yes...what she said! ;)
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#6 DS29790bb

 
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Posted 24 June 2012 - 08:10 AM

Thanks for all your responses, they did help. Once again, sorry for ranting.....it's literally been in my head for five years and I needed to get it all out. I go to school in a large city so there's a lot of options for eating, so I guess I have it pretty good. It would be so nice to meet someone at my school with celiac though.....there are a few diabetics, but I'd much rather have diabetes than celiac. It's much easier. But thanks for all your responses, they did help.....especially the "built in jerk detector" when dating.
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#7 psawyer

 
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Posted 24 June 2012 - 08:49 AM

Hi, and welcome.

I have been dealing with T1 diabetes for 26 years, and have been gluten-free for 12, following a diagnosis of celiac disease.

Of the two, celiac disease has had more impact on my life--pre diagnosis. I was very sick, and for years, nobody could figure out why. As time went on, my symptoms continued to worsen. At the end, I was barely able to function.

These two autoimmune diseases have a statistical correlation. If you have either one, you likelihood of having the other is greater than if you don't. It has been suggested more than once that anyone with T1 should be screened for celiac disease, whether they have symptoms of not.

Both conditions involve dietary restrictions. Of the two, celiac disease is the more rigorous. As a diabetic, I can have occasional sweets, as long as I factor them into my total carbohydrate content, and balance them with insulin. A person with celiac disease must never have any gluten at all. You can not "cheat" occasionally.

Prepared gluten-free baked goods are often higher in carbohydrates (and fat) than their regular equivalents, so we have to eat less of them.

I don't let my life revolve around food. In social situations, it is the people that matter, not what they are (or are not) eating. Have a drink in your hand, and most people won't notice that you aren't eating something. If offered unsafe food, I politely, but firmly, say "no."

At first, dealing with each one was a big deal. Today, it just isn't.

I do realize that, at 19, you are at a different stage in your life than I am at 57. Peer pressure at school can be tough. But things will work out for you.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#8 Skylark

 
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Posted 24 June 2012 - 09:47 AM

Thanks for all your responses, they did help. Once again, sorry for ranting.....it's literally been in my head for five years and I needed to get it all out. I go to school in a large city so there's a lot of options for eating, so I guess I have it pretty good. It would be so nice to meet someone at my school with celiac though.....there are a few diabetics, but I'd much rather have diabetes than celiac. It's much easier. But thanks for all your responses, they did help.....especially the "built in jerk detector" when dating.

Glad you found that funny/helpful. B)

Please don't apologize for ranting. It's why the most popular section of the board by far is called "coping with celiac". As you well know, celiac is not something you can just forget about or ignore in our bread-centric society. This is where you can come to get the frustration out and we all completely understand!

Please come here and ask for help when you need it. That's much better than eating gluten. I really hope you can find a celiac friend or two but if not, you now have hundreds of celiac and even celiac/diabetic pen pals!

Answering your post helped me too. I got to the party last night and sure enough there was bread and cheese on the appetizer table and crumbs scattered everywhere. How do people make so many crumbs??? :lol: I could have eaten the olives and corn chips/salsa if the hostess had happened to put the cheese board somewhere else, but no such luck. Since I had replied to your post just before I left I was fully expecting it so it didn't bother me. I had a great time. :)
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#9 x0xteenyx0x

 
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Posted 25 June 2012 - 07:21 PM

I feel the same way, i am a 22 year old female. You just cant let things get you down. Its good to have friends that support you, i have some who think i am kidding about CC and just go "well you can just eat it now it won’t hurt you". I am a nurse so its good because i get to rant to all my co-workers, and in-turn they understand everything more. I always eat before i go out, and bring a snack bar with me everywhere i go. I get down sometimes to and think how nice it would be to just take a pill everyday and then eat everything i see :D how great would that be ! (We can dream can’t we ?? haha). I don’t know why girls would think it’s weird, you’re looking after your health to look and feel better, just like they do when they do their hair and make-up and eat salad to stay fit. Whenever I feel down I go to work (I work on a Peds floor) and see all the very sick and dying kids then get mad at myself for feeling like this, we get to do what we want see who we want live where we want. I have had the same issue, I cant seem to find anyone around my age who has celiac too, and I feel adults don’t really get it sometimes. We don’t plan our lives like they do, so when its 3am and ur hungry and all your friends want to go to a burger joint and just look at you, you just want to die. I always bake some really good like banana bread and cake then freeze it so when I am hungry I can just pull it out and have some normal tasting food. I have the same lonely feeling at time, even though I have a big family that supports me lots of friends and a boyfriend who does everything. So I don’t think there is really anything we can do, well I bought a bunch of pets and they make me feel better :P . Just remember you need to do it, people are fighting for their lives every day in the hospitals you can’t let food get you down. Maybe volunteer at a cancer floor or on a Peds floor, it might bring up your spirits to help other and see people worse off and still happy and enjoying life to the fullest. Just a thought. Hope this helped a little, I feel for ya
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Find a way to smile and never let it get away

#10 x0xteenyx0x

 
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Posted 25 June 2012 - 07:54 PM

sorry for all the bad spelling :s
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Find a way to smile and never let it get away

#11 auzzi

 
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Posted 26 June 2012 - 03:32 AM

If you can't find a support group on campus - start one ..

Put a sign up at Student Health, the Pastoral office of any campus ministers, the Notice Board near the Food Hall, the College pharmacy/drugstore .. Pro-active! ... You have done very well, at a young age - keep it up!

College life can be a pain in the butt sometimes, so swing it around to your advantage - take charge ... I think that it would be unlikely that you are the only student in this predicament.
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#12 mommyto2kids

 
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Posted 27 June 2012 - 09:43 AM

We all feel this way a lot of the time I think. Young and old, it is so hard. I just went to a swim meet with my young kids and I felt the same as you, that I have to explain my diet and life issues. Sometimes I feel people must think I'm wierd. I think the good thing here is you have awsome and I mean awsome caring friends. We are teaching people to be caring and sensive to other peoples' needs as they learn to be caring and sensive to our needs. Take those teenagers from New York for example, they were clueless to being sensitive in any respect. The goal in society is to teach people to be sensitive to all peoples' needs. These are our needs and we can't help it. We are doing nothing wrong. We have to eat this way and yes it is a pain. But the big D is a bigger pain.

The Celiac Disease Foundation has some young people blogging right now. Look up their blog and see if you can meet and comunicate with them. I think 2 kids are teaching 2 newbie kids how to live and eat gluten free. Call the Celiac Disease Foundation or e-mail them to learn about it.Also there is a young girl who has a blog called Gluten Freed. I met her at CDF conference. She is awsome. See if you can contact her somehow. PM me if you need more ideas and I'll work on that for you. Hang in there. I think you are a strong person. Eating out isn't everything in life. There is so much more. When you get out of college it will be easier and willnot be such an issue.
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#13 TightLoli

 
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Posted 27 June 2012 - 09:14 PM

I know your pain exactly. I'm 18 and I find it hard to imagine a girl who will actually support my disease and deal with all of my set-backs. I get very depressed when I think about traveling, because a dream of mine is to travel to Japan and I don't know how much I'll enjoy it thanks to Celiac. We just have to hang in there man and be grateful that we don't have even worse things happening to us. I've felt very lonely ever since I've been taking my disease very seriously, and it's hard to be completely happy, but I honestly do think things will get better as time goes on and there will always be someone that has a comparable situation. Keep going.
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#14 pianoland

 
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Posted 29 June 2012 - 05:55 PM

Hi! I'm a 20 year old girl with celiac so I can relate. It sounds like your friends are willing to go to places where you can eat so I wouldn't worry about adjusting plans..people are flexible. Also don't worry so much about food. If you think you can only eat a salad, then eat before you go and ordering the salad won't seem like such a big deal. Or bring a protein drink with you (I love Orgain, it's lightly sweetened so I'm not sure if this is a good idea for your diet).

As for feeling alone at college.. I've met about 6 other people with celiac or gluten sensitivity at my school..and my school isn't that big and in a rural area. It really is great having a couple friends who know exactly what I'm going through. I've also met countless people who live with/are friends with/are related to someone with celiac. Any time you make a connection like that you should try to reach out to that person...email/facebook/whatever can get you in touch with them.

I also recommend talking to your school's dining service, they probably have a special diet chef on staff who might be able to help you connect up with other gluten free people. The chefs at my school actually prepared an individual meal for me every dinner because I was struggling to get a safe/healthy meal in the regular lines. It was like having a personal "gourmet" chef (compared to the mass produced mush they give everyone else). My friends would always tell me, "AH I'm so jealous." And I would just look at them like.. don't be. :D

Wow sorry this was a novel. PM me if you ever need to talk it out.
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#15 emilio

 
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Posted 29 June 2012 - 07:09 PM

Dude, from a guys perspective i feel your pain. What i just read right there was story of my life lol ive gone through exactly what you did. The girls, the having to bring it up, basically it taking over your life. I remember this one time i was at school and this girl had these brownies and she was literally putting it close to my mouth and im like uh, no thanks. I didnt want to tell her cause she'd think im crazy and i didnt want to go through the whole process of explaining.

Anyway, i turned it down and she kept saying "why? just eat it" and i would just put her hand down. A few weeks later it happened again. Coincidentally she had a bag of chips that had gluten in them and she offered. I said no im fine, and she was like "oh my god, you never eat!" and i had nothing to say but to smile it off. On the inside, i felt like crap. Sucks we cant enjoy something so small sometimes. When you meet a girl that has celiac, keep in touch. I already have a girlfriend but if i ever meet someone who has the disease i would probably be all over her lol id love to be friends with you if you want? remember you have a whole family here, im not on much but seeing this post makes me want to actually be much more involved (:
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