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I Want To Make Some Friends With Celiac
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im 13 and was diagnosed with Celiac 2, almost 3 weeks ago. does someone have celiac all of their life or can they develop it? cus if u develop it, i probably did 3 years ago. when i have gluten i have joint pain. also i have to take 5,000 iu vitamin D pills a day. does that mean my vitamin is REALLY low? or is that a normal amount to take? ive noticed that when i have gluten i get moody <_< what happens to you when you've been glutenized? lol. how did u find out that u had celiac? do u know anyone around ur age with it? i don't i and really wish i did cus thatd be so fun to talk about with each other.

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Hi! I'm 14 and was also diagnosed when I was 13. Yes and no to your question. You don't technically develop it, because you are born with the gene. However, it can wait to become "active" so to speak. This is generally caused by a traumatic event or illness. Mine was caused by mono. I did have it all of my life, as everyone does, but you don't necessarily know about it all of your life, and it doesn't always cause symptoms all of your life. I get bloated, stomach cramps, and tired when I get glutinated. I know one other girl my age with Celiacs. We can always talk on here, people are generally helpful!

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Hi,

I used to be a teenager just a few decades or more ago. :D welcome to the gluten-free world!

There is an organization of support groups for celiac kids you could check out called ROCK. They might have a chapter near you. There are other celiac groups also like the CSA (Celiac Sprue Association), NFCA, etc. CSA has chapters around the USA and they have meetings every once in a while where people talk about gluten-free foods and other information. Sometimes they have food samples. The members of CSA are generally adults but some adults have kids and bring them to the meetings. Celiac is geneticly linked so kids of celiacs get it more often than the general public.

R.O.C.K. (Raising Our Celiac Kids) - National Celiac Disease Support Group

There are celiac groups on Yahoo and meetup.com groups also.

Anyway, maybe you will find some groups near you that you can meet with. But stick around here too because we are glad to have you and we don't mind questions at all.

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Hi,

I also just got diagnosed about a week or so ago. I don't know anyone with the disease, but my friends parents always go on gluten-free diets and know of lots of gluten-free things. I always feel sick when I am glutinized, but I had no idea you could get joint pains...that must stink. Do people with celiacs always have no gluten, or do they grow out of it? Also, my doctor said that people don't become glute-free overnight, but I thought once you were diagnosed you got cut off cold-turkey from gluten. I am confused!:)

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Hi Laxgirl,

Welcome and welcome some more! :D

There are acutally a whole slew of other auto-immune disease that people with celiac can get. That doesn't mean we will get them, just that the odds are higher for us. Celiac is an auto-immune disease and they like to cluster with other autoimmune diseases. But if you stay strictly gluten-free you probably reduce your chances of developing other auto-immune diseases to normal.

It does take a while to learn the gluten-free diet, and how to avoid the hidden gluten ingredients in foods. You may need some time to do that. Many times it is easiest to just avoid processed foods with their long ingredients lists and eat whole foods instead. Learning to cook your own food from whole ingredients is an important skill for us.

Don't expect to be sucessful at gluten-free diet right away though. It is a learning process and you will need some time to adjust. Mistakes are more the rule than the exception when starting out.

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im 13 and was diagnosed with Celiac 2, almost 3 weeks ago. does someone have celiac all of their life or can they develop it? cus if u develop it, i probably did 3 years ago. when i have gluten i have joint pain. also i have to take 5,000 iu vitamin D pills a day. does that mean my vitamin is REALLY low? or is that a normal amount to take? ive noticed that when i have gluten i get moody <_< what happens to you when you've been glutenized? lol. how did u find out that u had celiac? do u know anyone around ur age with it? i don't i and really wish i did cus thatd be so fun to talk about with each other.

I'm 13 to! lol I was diagnosed a year ago. the vitamin D pills that high a day can make you get kindny stones if you don't drink a lot of water just to let you know. The doctor told me after i took the pills for about 5 weeks and 'forgot' to menchen that little thing. Good thing i did not get them though. I stoped taking them a long time ago.

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im 13 and was diagnosed with Celiac 2, almost 3 weeks ago. does someone have celiac all of their life or can they develop it? cus if u develop it, i probably did 3 years ago. when i have gluten i have joint pain. also i have to take 5,000 iu vitamin D pills a day. does that mean my vitamin is REALLY low? or is that a normal amount to take? ive noticed that when i have gluten i get moody <_< what happens to you when you've been glutenized? lol. how did u find out that u had celiac? do u know anyone around ur age with it? i don't i and really wish i did cus thatd be so fun to talk about with each other.

I slowly developed it (i'm 20)

Yes, body aches, stomach issues, and other such things. Sounds to me like you were low in D, which really isn't good.

I can barely move when i have been glutened.

I found out from a blood test, the hard way (8 doctors visits and such)

Nope, i know no one else with it.

Btw, to the poster above me, Stones don't develop that quickly, it would gradually happen over time.

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im 13 and was diagnosed with Celiac 2, almost 3 weeks ago. does someone have celiac all of their life or can they develop it? cus if u develop it, i probably did 3 years ago. when i have gluten i have joint pain. also i have to take 5,000 iu vitamin D pills a day. does that mean my vitamin is REALLY low? or is that a normal amount to take? ive noticed that when i have gluten i get moody <_< what happens to you when you've been glutenized? lol. how did u find out that u had celiac? do u know anyone around ur age with it? i don't i and really wish i did cus thatd be so fun to talk about with each other.

hi, i'm also 13 and i have celiac. i was diagnosed with it nearly 3 years ago now. i do not know anyone else with celiac and i would like to get to know people my age with the disease. i think it would be fun to talk to si=omeone the same age as me who also has celiac. pm(personal message) or email me if you want to and me and we can talk :)

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im 13 and was diagnosed with Celiac 2, almost 3 weeks ago. does someone have celiac all of their life or can they develop it? cus if u develop it, i probably did 3 years ago. when i have gluten i have joint pain. also i have to take 5,000 iu vitamin D pills a day. does that mean my vitamin is REALLY low? or is that a normal amount to take? ive noticed that when i have gluten i get moody <_< what happens to you when you've been glutenized? lol. how did u find out that u had celiac? do u know anyone around ur age with it? i don't i and really wish i did cus thatd be so fun to talk about with each other.

Im 16 and i just feel sick and tired when i have gluten lol idk if i have to take vitamins yet or not

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anwen & shaun: this thread is a yr old & the OP has not posted since. Please read the dates b4 you reply to a thread.

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anwen & shaun: this thread is a yr old & the OP has not posted since. Please read the dates b4 you reply to a thread.

I think that's ok myself. Sometimes people are subscribed to threads and the get a email notice when someone responds. Unfortunately younger people tend not to stick around for long on the forum. Maybe us grouchy oldsters scare them off! :)

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I'm 13 too and I would absolutely love to be An e-buddy for you. I could also give you pointers as I was diagnosed when I was 4. It can be really hard as a teenager, but with a good friend it could be a lot easier for kids like us:)

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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