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Any Celiac Teens Out There?
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77 posts in this topic

I'm 19, been diagnosed for a year now :) Anybody in BC, Canada? I'd really like to meet some Celiacs, I feel so alone..

Hi i'm shelby. I'm 17 and was diagnosed two weeks ago. It's been a hard adjustment and I'm still not feeling that well. Was it like this for you?

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I'm 19 and I live in the Seattle, WA area.. I've been very strict on my gluten free and dairy free diet since I was 14 when I was diagnosed celiac, but I was diagnosed with a wheat allergy when I was 8... I always want to go to the Seattle Meet up for celiacs but I'm kinda afraid it's gonna be all "adults" lol

anybody have problems with boyfriends/girlfriends that don't understand, or think celiac is funny..?

talk to meee (:

Emma

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Hey, I'm 19 and from MA

Oh and RideAllWays, BC, Canada is where it's at...best city in Canada

BC is a province with lots of cities.. :D But yes, it's lovely!

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Names Brandon, im 18 from New Jersey. I was diagnosed 17 years ago. been on Celiac diet my whole life. Its not bad at all to be honest. im actually the healthiest person in my family lol

so you've had it since you were 1?

i love new jerseyy, do you go to bamboozle?

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Hi!

I'm 20, female, live in Kansas.....

I was diagnosed September of last year, there is only one other person in my family with celiac disease, and we aren't close. (2nd cousin...)

I guess that's about it....

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Names Brandon, im 18 from New Jersey. I was diagnosed 17 years ago. been on Celiac diet my whole life. Its not bad at all to be honest. im actually the healthiest person in my family lol

Thats what I tell everyone. I known for 7 years, and since then a ton of my family has found out they have to eat gluten free. My mom now has THE best gluten-free baking business in BC, Canada, so I have it pretty good. But it is getting easier, people are really starting to understand...at least the people that I have met.

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Hi

I am the mom of a 17 year old who diagnosed herself about a month ago after talking to a teacher at her school who had the same problems. My daughter is a competive irish dancer (about 8- 10 hrs practice a week) and has had exercise induced asthma about 10 years and stomach problems all her life. She was told two years ago she definitely had irritable bowel syndrome and to change her diet. Add more fibre they said. She felt somewhat better but couldn't get her exercise induced asthma under control changing from one puffer to another. A top child respirologist had no solution. She would dance in a competition coming off stage doubled over, gasping for air and wanting to throw up. FIVE DAYS without gluten she went in a competition came off stage short of breath because she had worked hard but besides that she was fine. Unbelievable!! She has increased her stamina and doesn't require her puffer nearly as much!

hi iam a dad with a 15 yr old daughter she was diagnosed this past july.what a life changing experiance.she was good for awhile and now is having issues again i think she just got cross contaminated.it took 3 yrs and alot of er visits.we were both at our wits ends.no help from anyone u feel so alone very depressing docs were cluless.there r no support groups for teens in our area so its hard on my baby.support group here is old peeps.she also has asthema, weight gain,stomach pain eye sight lose it goes on and on so i will tell her i found this to see if she can find teens to chat with hope to hear from any and all that can help a dad and his daughter ty

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hi iam a dad with a 15 yr old daughter she was diagnosed this past july.what a life changing experiance.she was good for awhile and now is having issues again i think she just got cross contaminated.it took 3 yrs and alot of er visits.we were both at our wits ends.no help from anyone u feel so alone very depressing docs were cluless.there r no support groups for teens in our area so its hard on my baby.support group here is old peeps.she also has asthema, weight gain,stomach pain eye sight lose it goes on and on so i will tell her i found this to see if she can find teens to chat with hope to hear from any and all that can help a dad and his daughter ty

Hi, I am 17 yrs. old and live in B.C., Canada. If your daughter wants to email me, I would love to talk to her.

I know how it feels, like most of the teens on this site, to be a young Celiac. It really sucks at first, but for me, it got easier. I have been on the diet for 7 years and I still get cross-contamination, I have also found out about a lot more foods that I am sensitive to. Celiac disease is and auto-immune disease, so your body attacks itself, and the first place to get hit, for most people, is the gut. When you eat gluten-free, your gut gets the chance to heal, and sometimes, people like me, discover other foods that they cannot eat. So, the fact that your daughter is still getting sick could be that she is getting some gluten in her diet somewhere, or her gut is in the healing process and is reacting to more foods that her body doesn't like. One way to find out, is to keep a food diary. It is annoying and hard, but it really does help. Get her to write down everything she eats during the day, and how she feels after.

Let her know that she is not alone, and that there are hundreds and hundreds of other teens dealing with the exact same situation as she is.

Good Luck

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hey my name is mikaela and i am almost sixteen too!! i started getting sick when i was eight then after three years of tests i found out i have celiac. i never really liked baked goods so it wasen't very hard to go off gluten. i am getting fed up with having to read all the lables on the packages though. but my friends have been really good and always have something gluten free in the cupboard for me. do you know of a good bread company cuz i am having a hard time finding good gluten-free bread??

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when did you find out you had celiac??

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Hey, I'm 18 and have been diagnosed with gluten intolerance for about 3 years. Once I was diagnosed I tried my best to avoid it but I started eating wheat again 2 summers ago because I was getting sick of my family not making gluten-free meals since i'm the only one in the family intolerant. When I started to eat wheat again i thought things were going well..just kept getting dizzy because my hypoglycemia. Until I noticed I was getting horrible acne in my facial cheek area only. I thought it was just because I was stressed out from college. Then I noticed it started getting really worse when I ate certain foods. I didn't really notice the correlation between my allergies and my body until recently. For the past few months, I have been to the ER numerous times because feelings of lightheadness/passing out, abdominal pain, and other reasons. Finally, I took the initiative to go on a strict diet (avoiding wheat, dairy, eggs, sugar) for about 2 1/2 weeks now and i feel SO MUCH BETTER and my skin is gradually clearing up. It's amazing what food can do to your body. I feel much more energetic, focused, and happier. I think avoiding wheat/gluten is the best thing to do for anyone in my opinion because of all the additives they put in foods these days such as gliadin.

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I'm 19 and I live in the Seattle, WA area.. I've been very strict on my gluten free and dairy free diet since I was 14 when I was diagnosed celiac, but I was diagnosed with a wheat allergy when I was 8... I always want to go to the Seattle Meet up for celiacs but I'm kinda afraid it's gonna be all "adults" lol

anybody have problems with boyfriends/girlfriends that don't understand, or think celiac is funny..?

talk to meee (:

Emma

Hey, my name is Jessica, I'm 18. I also live in the Seattle area. I was diagnosed with 25 food allergies in middle school (wheat, dairy, cheese, eggs, sugar cane...). In middle school, I felt lightheaded on a daily basis. I also was diagnosed with hypoglyceamia. In middle school I avoided all the food allergies. Though, almost 2 years ago(junior year highschool) I had a hard time avoiding it. I thought it was fine eating wheat again but i noticed It has gradually built up to acne/rash residing only in my facial cheek areas, passing out, and severe abdominal pain. I went to the ER numerous times these past three months because of severe reactions of passing out, and abdominal pain. Recently, I have been on a strict gluten free/dairy free diet for the past 2 1/2 weeks and I definately feel better so far. My boyfriend is somewhat understanding of what i'm going through. He said that he honestly hates how i have all these food allergies because it makes it hard for us to go out to eat somewhere.

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I'm 14 -I was diagnosed almost 2 years ago...

I am 15 and was diagnosed just a few months ago...you say you are a Jesus freak! Well, let me tell you, I love Jesus too and I don't think I'd be able to get through this without Him!!!!

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Hi I am 14 and has been diagnosed for about 7 months.

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Hey my names kimberlie . I've been a celiac for almost a year now . I live in cali . Contact me :) I need some celiac friends. I know of only one other celiac Wich is my best friends Grammy .

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Hey!! I have Celiac n ive had it 4. . .6 years now i think. . .i was little when i got it so i dont remember so much about it, but lately it's been challenging and i kept being like "SERIOUSLY?!" when my bros got a cookie or treat and i couldnt hav it, but lately its been a lot better. :) i realize that ive had it to long now to hav a reason to be whine. . . ;P

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hey my name is mikaela and i am almost sixteen too!! i started getting sick when i was eight then after three years of tests i found out i have celiac. i never really liked baked goods so it wasen't very hard to go off gluten. i am getting fed up with having to read all the lables on the packages though. but my friends have been really good and always have something gluten free in the cupboard for me. do you know of a good bread company cuz i am having a hard time finding good gluten-free bread??

hey i am the oppistie-i LOVE baked goods!! i have found a lot of good types of muffins, bagels, and bread from a brand named Udi's. I really like it and reccomend u try it!! Hope that helped :D

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Hi, my name is Danielle and I live in Brazil. I was officially diagnosed last week but have been gluten free for about 3 months now. I'm kind of new to all of this and would really appreciate some help. I have accidentally screwed up and eaten gluten a couple of times already and just feel very discouraged at times. Feel free to contact me! I could really use someone to talk to.

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Hi, my name's Julia and I'm almost 15. I was diagnosed right after I turned 3, so I've been on the gluten free diet pretty much all my life. Before diagnosis, I weighed 19 pounds. I was skin and bone with a distended stomach. I was diagnosed at children's hospital in Boston, MA. My mom had to order everything online and even there wasn't much. She made my bread, which everyone here knows doesn't last very long unless frozen and then toasted. As I grew up things got slightly easier. My aunt was diagnosed at age 43 and that was when we knew it was my moms side with the gene. I didn't know anyone my age with celiac. I met one girl at a camp for two weeks but never saw her again. By middle school celiac was much more common. And now, as a freshman in a private high school, I have two friends with gluten intolerance (one has the parents who created and own 'cherrybrook farms' mixes and some cookies), another friend who has celiac and even a teacher with celiac. And this is all at the same school!!!

Now everyone makes mistakes, especially a celiac. My reaction to gluten is much more violent than it used to be as a child. I've taken a bite of a cookie, realized it was wheat, spit it all out, and I've still gotten sick. My most recent slip-up was my mom's mistake. She made french toast and instead of using the canyon cinnamon raisin bread in a clear and purple package, she used the Vermont company bread in a clear and purple package. I had 5 slices, my biggest amount of exposure to gluten since my age three diagnosis. It takes my body about two hours to realize the wheat needs to get out and then throwing up for 2-4 hours. I could never purposely cheat on the diet because of my reaction

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Hi, I'm Kelly. I've been a celiac for about eight years now. I've never had a friend with it, so I was hoping to meet some teens on here that also have Celiac's. (:

My name is Kelly also. Kelly Nolan. I'm from Down Under! I've been coeliac for 13 years and have yet to meet anyone else my age who is 'truly' gluten free. What I mean is: not just a 'fad' dieter (I've met some of these from time to time) but never anyone else on a "TRUE" gluten free diet! :(

I feel so alone, too!

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Hey I'm alex, and I'm from ontario, canada. I'm 20 years old and was diagnosed a few months ago just before my 20th birthday. Its been so hard and I keep accidently eating gluten! Its even more difficult in university when everyone eats out all the time. I too don't know anyone with celiac so nobody I know really understands it. If anyone else is in college too or has any advice that'd be awesome!

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Hi I'm Brianna 13 and live in Oregon

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Hey, I'm Sarah. I'm 17 and I'm from Seattle, WA.

I was diagnosed 3 times. Once in 8th grade, once in 10th grade, and about a month ago. When I was younger, a lot of stuff happened and doctors went on and off if I was really allergic or not. One doctor had a heart attack because the test results were so high, a different doctor read the same report and told me I was fine. To say it's been confusing is an understatement....but anyway, now I have been off of gluten for a month and I feel a lot better. I get REALLY bad shoulder pain, my stomach becomes upset, my asthma gets worse, my skin breaks out in rashes.

Anyway, it's nice to know I"m not alone. :)

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i have been recently diagnosed with celiac disease about two weeks ago. its kinda hard to switch at first, but i guess ill get use to it. ive also noticed that im a lot more sensitive when i accidently eat gluten, even though its only been two weeks.

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Hi, I'm 12 almost 13 and I started having problems when I was 5 and like you went to ER, Even the famous Cook Children

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    • I also only really eat one meal a day and always after I get home. I never really feel hungrey. I call it 'Pavlov's dog in reverse'.  I think it comes from so many years of food making me sick. I have gotten to the point where I now at least can eat a sandwhich and some fruit during the day but it wasn't a quick process. When folks get like that it is very important to make sure that one meal has a good amount of both calories and nutrtion.  If your diet is how you describe you are starving yourself.  You need to get yourself used to eating again.  What helped me was carrying a baggie with some nuts and dry fruit with maybe even a handful of gluten free pretzels and always some chocolate baking chips. I just ate couple pieces when I thought of it throughout the day. A little bit of cheese and a couple safe crackers, a piece of fruit or a small tin or individual serving snack pack are also good. You need to get some nutrition during the day so you can feel up to cooking a simple full meal  for dinner. I hope your feeling better soon.
    • Ok, I can't seem to find my first lot of blood tests that were done for Celiac screening, they did include TTG I remember that much, and I am getting another copy of it but another test did come in today.  I don't know how different tests are done around the world and I don't get all the medical jargon but this is what it states, ******************************************************************************* HLA DR/DQ Genotyping for Coeliac Disease, Specimen type : EDTA blood Method : Detection of sequence-specific oligonucleotides (Gen-Probe). HLA-DR - 1, 13          DRB1 - 01, 13 HLA-DQ - 5,6        HLA-DQA1 - 5,6      HLA-DB1 - 05, 06 Interpretation : No genotype susceptibility for coeliac disease.  The DQ2 and DQ8 antigens associated with increased risk of coeliac disease were not identified in this patient.  In the absence of these antigens, coeliac disease is extremely unlikely.   *******************************************************************************   I have read the horror stories of blood tests and scope biopsies not be done right or flawed but here is what I do know as of now, At the moment the most non invasive test I can have done say negative.  I have double scopes (endoscopy and colonoscopy) booked for the 12th of October with results from biopsies expected a week or two after. Chances are they will show, a) signs of coeliac disease (even if the odds are low it can still happen), b) show signs of something else entirely and we will be busy dealing with the ramifications of that or c) it will show no signs of coeliac but I will still be suffering from gluten sensitivity (which is harder/impossible to measure clinically). My GP has told me that stress and anxiety can be a cause of all the symptoms I have been experiencing and suggests if the scopes show nothing that I may benefit from something to treat anxiety, i.e. antidepressants.  Not in a, "Oh we don't know what it is so have these," kind of way, he agrees with the thought that the scopes could indeed show coeliac, something else or even be negative. I did tell him that I could have a sensitivity and that even without benefit of clinical results, some people have gone on a gluten elimination diet for a period of time to see if they get any relief.  My question is this, if the scopes come up negative and I try eliminating gluten, how long would it be before I saw any results or improvements?  I have read enough here and elsewhere to know that everybody is different, some see results within days, some see results longer but are there any guidelines for how long a test like this should be undertaken for?  I have heard everything thing from two weeks to two months.  All of this is entirely moot at this point but I know that even if the results said clear, there would always be a little part of me that wonders if it could be a sensitivity that is the problem.  Any thoughts or advice greatly appreciated, and a thank you to all those who have taken the time to respond and offer advice and encouragement so far.        
    • We don't delete accounts but can delete any personal information and change your screen name if you would like. Just send me a personal message with three possible screen names. For the record you can edit most things in your account area with the exception of your screen name.
    • Thanks I never heard of that dye before, I guess I have to find more natural meat thanks for the suggestion. 
    • Yes, I only eat one meal a day. Sometimes salad or fries or whatever I can find. And thanks for the replies again.
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