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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Teen Wanting Celiac Online Friends!
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47 posts in this topic

anyone here wanna talk about like celiac and stuff!!!

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Hey, nobody has replied yet, sorry. I have 2 teens allergic to gluten so I just stopped by to say HI :D

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Get them on here to talk!!! :P

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im 17 and was recently diagnosed with celiac disease and ive been lookin for someone around my age to talk to. if you want to talk you can email me at w.rachelle@yahoo.com

that goes for everyone who wants to talk. i love talking to people. but a lot of people dont get what i go through and how i feel. im just lookin for another celiac

i check my email everyday, i dont know how often ill be on the board

thanks =]

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hey im 15 and was diagnosed in December, pm me if you want, or join celiac teens (www.celiacteens.com/messageboard)

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ok so hey guys....my dr. is 75% sure i have celiac disease.. i have to go on a gluten-free diet starting tomorrow for a few weeks, and even if my test negative and then if i feeel better i guess i will be gluten-free forever!!!!!! ...i had my endoscopy today oh what fun that was...i have been looking up just info so i will be well informed and celiac seems to STINK..i am 16 btw and i would love some advice =P

thanks guys

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anyone here wanna talk about like celiac and stuff!!!

hi! im 14. i have been gluten free now for almost a year.i know two other people that have a gluten intolerance too. but they are older than me by several years than me. so i would like to talk to some kids that are around my age.

thanks

~kenzie

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hi i'm becca. i'm 14 and have had celiac for over a year now. pm me if you want my email, or just to talk. Right now I'm on a special diet for another disease i have, so all i can eat is formula (like the kind babies have-which i get through an ng tube cuz it tastes nasty :blink: ), cantelope, and potatoes. I was gluten free for a year before this diet and felt much better.

becca

I'm 14 years old. diagnosed may 2007. also have eosinophilic esophagitis- and have an ng tube for that.

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ok so hey guys....my dr. is 75% sure i have celiac disease.. i have to go on a gluten-free diet starting tomorrow for a few weeks, and even if my test negative and then if i feeel better i guess i will be gluten-free forever!!!!!! ...i had my endoscopy today oh what fun that was...i have been looking up just info so i will be well informed and celiac seems to STINK..i am 16 btw and i would love some advice =P

thanks guys

It doesn't always stink, but at times it seems that way. It's a way of life, that eventually you WILL get used to. If you have a craving for something that you can't have then eat something even better that you can have, even if it's not healthy it's healthier than having gluten. I don't really know what it's like to go from having gluten filled stuff to none at all but I do have a curiosity/ a want to try what everyone else is having. In kindergarten I took a goldfish cracker from someone ate it and was vomiting for ten days..this has happened many times unfortunately. Hope this helps!!!

Alli

Gluten free since I was 11 months old

positive blood test

positive biopsy

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I do. I'm 15 and was just diagnosed in January. I haven't found any that's near my age and willing to talk!

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I do. I'm 15 and was just diagnosed in January. I haven't found any that's near my age and willing to talk!

email me any time katester....allisonnn04@aim.com or softballstarallie@yahoo.com. I check it every day so email me if you wanna talk or post on here!! I love talking to other celiacs!!!!!!

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Okay well just wondering if this happened/happens to anyone else:

My parents had a middle with my teachers because they need to be aware that I have celiac. Thats FINE, BuT they are annoying about it, like I don't know what I can and can't have or I want to try something I know I can't have(well yah there are temptations but I can get over it!!!)...anyone else feel like you just want to be treated the same and have them still realize the situation..my parents don't have celiac and they don't understand. It's so frusterating!

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Okay well just wondering if this happened/happens to anyone else:

My parents had a middle with my teachers because they need to be aware that I have celiac. Thats FINE, BuT they are annoying about it, like I don't know what I can and can't have or I want to try something I know I can't have(well yah there are temptations but I can get over it!!!)...anyone else feel like you just want to be treated the same and have them still realize the situation..my parents don't have celiac and they don't understand. It's so frusterating!

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I hate going to resuraunts with my mom.

First thing she does when the server comes is jumps on them with "No Gluten and this and that"

Its annoying and embarrassing.

Especially because I'm not 5. I can tell the server my needs and ask questions.

She doesn't have Celiac either.

I'm the only one in my immediate family...

>.<

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I hate going to resuraunts with my mom.

First thing she does when the server comes is jumps on them with "No Gluten and this and that"

Its annoying and embarrassing.

Especially because I'm not 5. I can tell the server my needs and ask questions.

She doesn't have Celiac either.

I'm the only one in my immediate family...

>.<

I totally understand...anyone like completely emotional some days and you cannot figure out why?

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Hi, another celiac here new to the forums :P

I was diagnosed at 14 months of age, and now I'm 16 and well.

@Alli. My parents also informed my old school I was celiac, mainly because I entered when I was 10 years, and still not completely aware of what I was allergic of. But after that one time, my parents had no more contact with the school regarding being celiac.

When I used to go to camps or such, my mum would always enter and explain things. It could be a bit irritating at times, but I just accepted it.

The main issue here is trust. If you can show your parents that you can uphold your diet they will start trusting you. For these last two years, any camp / dinner I went to, I ordered for myself because now they know that I know my condition better than they do (since I'm the only celiac in my family. Well my father is slightly intolerant but he still takes gluten).

Also, as for completely emotional. Yes, I do. It's called being a teenager. :P Everyone passes through such days at our age. We just have something to blame it on (even though it might not be directly influential.)

@CranberryThief. Give them a few months to understand that you can handle it on yourself. They'll start backing off slowly themselves. :)

Also, Aim / MSN / Y!IM should be in my profile. Anyone feel free to hit me up. I tend to suffer from boredom a bit :D

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Okay well just wondering if this happened/happens to anyone else:

My parents had a middle with my teachers because they need to be aware that I have celiac. Thats FINE, BuT they are annoying about it, like I don't know what I can and can't have or I want to try something I know I can't have(well yah there are temptations but I can get over it!!!)...anyone else feel like you just want to be treated the same and have them still realize the situation..my parents don't have celiac and they don't understand. It's so frusterating!

Yea, i know what you mean, i was glutened in school(accidently) and i tried telling the receptionist and she just kept asking questions, then told me i couldnt possibly be having a reaction that quickly (i dont think shes ever seen a reaction of any type). She told me to go to lesson and see the teacher if i still felt ill. which i did, lucky for me my welsh teacher's father has coeliac and after telling me to read the label more carefully she let me go home. (In my defence the label had sutible for coeliacs on it). Most of my teachers have actually been ok, even though last year i always seemed to be missing physics to have bloods done. When i explained why to the same teacher earlier this year, i found that she already knew. (My form tutor had told her the night before, we were on a camping trip). But yea, sometimes i wish the teachers didnt know because that way they wouldnt act like i cant speak for myself sometimes.

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Hey guys whats going on?? I was diagnosed w/ celiac disease in early june and have only met one person that has this disease........ anyways hit me up on my face book i would love to get to know you. my name is Alex Stoyanoff. Hope to talk to you soon!!!

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I totally understand...anyone like completely emotional some days and you cannot figure out why?

I understand too. It took my immediate family three years to get used to it but they're getting there! and yes, i get really emotional some days and can't figure it out! so does my twin. we're 17 and would love to talk to you guys. No one seems to want to listen to me when I need a friend, a best friend other than my sister whom I'm reallllly close to, to talk to so I stopped trying. It' ll be nice to share stories and minor frustrations with someone who truly understands! :D

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I understand too. It took my immediate family three years to get used to it but they're getting there! and yes, i get really emotional some days and can't figure it out! so does my twin. we're 17 and would love to talk to you guys. No one seems to want to listen to me when I need a friend, a best friend other than my sister whom I'm reallllly close to, to talk to so I stopped trying. It' ll be nice to share stories and minor frustrations with someone who truly understands! :D

Ya i hate that some days i just get really depressed and angry for no reason.

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Ya i hate that some days i just get really depressed and angry for no reason.

me too.

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I'll talk!

I don't know anybody on here.

I'm fifteen, from California. I found out I wasn't able to have gluten the day after my birthday last year. So December 2nd.

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I'm 19, i know, just barely a teen still, but I was diagnosed 2 years ago and would love to talk to other people with celiac. My name is kelsey and you can email me anytime at anamia4life89@yahoo.com

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Hi all. I am 23 ( a little older than most of you, however I don't feel always comfortable with the "adult" forums).

I was diagnosed with Celiac and Casein sensitivity since April 2008.

I would have to agree about going out to eat or being in public with family members, especially my mom and my soon to be mother in law. I love my mom to death....but she feels the need to announce to everyone around us that I am on a gluten-free diet! Personally, I would like not to have everyone else know at all times. It's none of their business, unless I bring it up, or they ask me. I don't have a problem talking about it....I just am always annoyed by the fact that other people decide to announce it for me. Does anyone else have that problem?

My soon to be mother in law has the tendency of buying lots of gluten free products for me (which is great, I don't have to buy them) however, most of the items are DISGUSTING! But, I am too shy (intimidated by her) to say otherwise, so I usually choke it down and smile :) Hopefully, I will get the courage to say something...sometime.

I know since I am older than some, I would love to talk about anything. Contact me anytime.

-Danielle

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Hi all. I am 23 ( a little older than most of you, however I don't feel always comfortable with the "adult" forums).

I was diagnosed with Celiac and Casein sensitivity since April 2008.

I would have to agree about going out to eat or being in public with family members, especially my mom and my soon to be mother in law. I love my mom to death....but she feels the need to announce to everyone around us that I am on a gluten-free diet! Personally, I would like not to have everyone else know at all times. It's none of their business, unless I bring it up, or they ask me. I don't have a problem talking about it....I just am always annoyed by the fact that other people decide to announce it for me. Does anyone else have that problem?

My soon to be mother in law has the tendency of buying lots of gluten free products for me (which is great, I don't have to buy them) however, most of the items are DISGUSTING! But, I am too shy (intimidated by her) to say otherwise, so I usually choke it down and smile :) Hopefully, I will get the courage to say something...sometime.

I know since I am older than some, I would love to talk about anything. Contact me anytime.

-Danielle

wow, this happens to us sometimes, our sister recently bought us something that turned us green for awhile, anyways good luck to you and have the best wedding in the world!!! :D

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    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
    • That's what I thought!  My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that.  He never had the biopsy either.  I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all.  My doctor didn't even offer the biopsy, and said the blood work was enough.  Should I seek a third opinion?  I mean, I've been gluten free for 9 months...
    • It will prolong your life....celiac is a autoimmune disease that  causes your own immune system to attack you. The longer your eating gluten the worse it gets, I mean all kinds of other autoimmune disease, food allergies, food intolances. One day you could lose the ablity to eat carbs, or sugars, or become randomly allergic to tomatoes or corn all cause you decided not to be on road to healing I am not kidding here. I am allergic to corn, can not process meats, have another autoimmune disease that makes it so I can not eat dairy or CARBS/SUGARS.   I wish I could go back in time and go on a gluten-free diet a decade ago. Worse that could happen you could develop cancer or other complications and yes we have had this happen to a member before on our forums. Think of it like this your just changing brand here I will give you some links to some gluten-free foods, and how to order them, You can even order alot of them online this should help simplify it for you. I suggest thrive, amazon, or one of hte other links from there, Many you can order from the manufacture. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/  
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