Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Want To Make Some Friends With Celiac

SusieQ

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • 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:)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      18

      My journey is it gluten or fiber?

      I looked further into Thiamax Vitamin B1 by objective nutrients and read all the great reviews. I think I will give this a try. I noticed only possible side affect is possibly the first week so body adjusts. Life Extensions carries Benfotiamine with Thiamine and the mega one you mentioned. Not sure if both in one is better or seperate. some reviews state...
    2. olivia11
      - olivia11 replied to olivia11's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      suggest gluten free food

      Thanks I am mostly looking for everyday staples and easy meal ideas nothing too specialty if possible.
    3. knitty kitty
      - knitty kitty replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      GI DX celiac despite neg serology and no biopsy

      There are other Celiac genes. HLA DQ 2 and HLA DQ 8 show up in people from Northern European descent. People of Mediterranean descent have HLA DQ 7. People of Asian descent have HLA DQ 9. There's other Indigenous populations that have other HLA genes that code for Celiac disease. Are you still having symptoms? What do...
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      18

      My journey is it gluten or fiber?

      There are eight essential B vitamins. They are all water soluble. Any excess of B vitamins is easily excreted by the kidneys. Thiamine is Vitamin B 1. Thiamine is safe and nontoxic even in high doses. Benfotiamine and TTFD are forms of Thiamine that the body can utilize very easily. The form of Thiamine in the supplements you mentioned is...
    5. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      18

      My journey is it gluten or fiber?

      Thanks very interesting I have to see if I should take these 2 vitamins along with my multi and super Vit B complex or if its too much or would hurt me. I don't have any other health issues but would love to see if this improves anything especially to feel stronger build muscle.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,752
    • Most Online (within 30 mins)
      7,748
    shark4frg
    Newest Member
    shark4frg
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I looked further into Thiamax Vitamin B1 by objective nutrients and read all the great reviews. I think I will give this a try. I noticed only possible side affect is possibly the first week so body adjusts. Life Extensions carries Benfotiamine with Thiamine and the mega one you mentioned. Not sure if both in one is better or seperate. some reviews state a laxative affect as side affect. SHould I take with my super B complex or just these 2 and multivitamin? I will do further research but I appreciate the wonderful explanation you provided on Thiamine.
    • olivia11
      suggest gluten free food

      By olivia11 · Posted

      Thanks I am mostly looking for everyday staples and easy meal ideas nothing too specialty if possible.
    • knitty kitty
      GI DX celiac despite neg serology and no biopsy

      By knitty kitty · Posted

      There are other Celiac genes. HLA DQ 2 and HLA DQ 8 show up in people from Northern European descent.   People of Mediterranean descent have HLA DQ 7.  People of Asian descent have HLA DQ 9.   There's other Indigenous populations that have other HLA genes that code for Celiac disease.   Are you still having symptoms?   What do you include in your diet?  Are you vegetarian? Are you taking any prescription medication?  Omeprazole?  Metformin?   Do you have anemia?  Thyroid problems? Are you taking any vitamins or herbal supplements?  
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      There are eight essential B vitamins.  They are all water soluble.  Any excess of B vitamins is easily excreted by the kidneys.   Thiamine is Vitamin B 1.  Thiamine is safe and nontoxic even in high doses.  Benfotiamine and TTFD are forms of Thiamine that the body can utilize very easily.   The form of Thiamine in the supplements you mentioned is Thiamine Mononitrate, a form that the body does not absorb well and does not utilize well.  Only about thirty percent of the amount on the label is actually absorbed in the small intestine.  Less than that can actually be used by the body.  Manufacturers add thiamine mononitrate to their products because it's cheap and shelf-stable.  Thiamine and other B vitamins break down when exposed to light and heat and over time.  Thiamine Mononitrate is a form that does not break down over time sitting on a shelf waiting for someone to buy them.  What makes Thiamine Mononitrate shelf stable makes it difficult for the body to turn into a useable form.  In fact, it takes more thiamine to turn it into a useable form.   Gastrointestinal Beriberi is a localized shortage of Thiamine in the gastrointestinal tract.  High carbohydrate meals can result in gastrointestinal symptoms of Gastric Beriberi.  Fiber is a type of carbohydrate.  So, high fiber/carbohydrate snacks could trigger Gastric Beriberi.   Since blood tests for Thiamine and other B vitamins are so inaccurate, the World Health Organization recommends trying Thiamine and looking for health improvement because it's safe and nontoxic.  
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      Thanks very interesting I have to see if I should take these 2 vitamins along with my multi and super Vit B complex or if its too much or would hurt me. I don't have any other health issues but would love to see if this improves anything especially to feel stronger build muscle.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.