Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

I Want To Make Some Friends With Celiac
0

12 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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!:)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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! :)

1

Share this post


Link to post
Share on other sites

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:)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,375
    • Total Posts
      920,572
  • Topics

  • Posts

    • https://www.facebook.com/groups/SingaporeCeliacs/
    • Today was the big day when I went to the GI and this is the first time I have felt heard and taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a disc with records to me, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten. He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
    • Celiacs got better gluten-free. Post-war, grains became available again and the same patients got sick again. 1952 the Gluten-Free Diet is officially ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,451
    • Most Online
      1,763

    Newest Member
    Chelsealarita
    Joined