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I Want To Make Some Friends With Celiac

SusieQ

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SusieQ Rookie
SusieQ
Posted

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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Taylor Darby Coben Newbie
Taylor Darby Coben
Posted

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!

GFinDC Veteran
GFinDC
Posted

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.

Laxgirl18 Newbie
Laxgirl18
Posted

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!:)

GFinDC Veteran
GFinDC
Posted

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.

123bree Newbie
123bree
Posted

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.

  • 2 weeks later...
shadowicewolf Proficient
shadowicewolf
Posted

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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  • 1 year later...
anwen98 Newbie
anwen98
Posted

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 :)

shauniscrazy Explorer
shauniscrazy
Posted

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

maximoo Enthusiast
maximoo
Posted

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

GFinDC Veteran
GFinDC
Posted

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! :)

  • 3 weeks later...
Madilou7 Newbie
Madilou7
Posted

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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      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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