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Any Celiac Teens Out There?


kellyisfresh

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shelbymartin93 Newbie

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?

  • 4 weeks later...

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  • Replies 77
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freeoglutevil Newbie

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

RideAllWays Enthusiast

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!

  • 2 weeks later...
brittanymaine Newbie

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?

polarbearscooby Explorer

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....

Eilidh Newbie

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.

dadneedshelp Newbie

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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Eilidh Newbie

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

Mikki.G Newbie

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??

Mikki.G Newbie

when did you find out you had celiac??

pandabear Newbie

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.

pandabear Newbie

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.

  • 2 weeks later...
Victoria6102 Contributor

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!!!!

  • 3 weeks later...
kathryn03 Newbie

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

  • 1 month later...
littlekimmie Newbie

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 .

Live Love Twillight Rookie

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

Live Love Twillight Rookie

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

  • 1 month later...
uruguaya1193 Newbie

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.

jules24 Newbie

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

kellynolan82 Explorer

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!

  • 3 weeks later...
alex*iustaspira Newbie

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!

123bree7797 Newbie

Hi I'm Brianna 13 and live in Oregon

SarahBeaver Newbie

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. :)

SusieQ Rookie

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.

Cara-Mac Newbie

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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      Are Lindt chocolate balls gluten free?

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      Are Lindt chocolate balls gluten free?

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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