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

Hello

Guest usulasula

By Guest usulasula
in Introduce Yourself / Share Stuff

Recommended Posts

Guest usulasula
Guest usulasula
Posted

Hello. :rolleyes: My name is Charlotte and I am 12 years old, and I live in England. I have been diagnosed with Coeliac Disease since last August but I have only been Gluten Free since October 5th last year. Before I was diagnosed I had terrible stomach aches and I had them for 3 years. They still haven't gone away and now I can't go to school anymore. My dad has Coeliac Disease too.

What about you??

usulasula :P

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

Celiac.com Sponsor (A8-M):


Canadian Karen Community Regular
Canadian Karen
Posted

Hi Charlotte! Welcome to the board! :D

We have lots of people here who are very knowledgeable and supportive. We also have a wide variety of ages here, including children, so I hope you feel comfortable here. One of our most valued and knowledgeable members is celiac3270, who is 14 years old.

How are you doing on the gluten-free diet? Has it improved your symptoms yet? I know for some people, it take months, if not years, for major changes to take place.

Welcome!

Karen

Guest usulasula
Guest usulasula
Posted

The diet is okay, but it is annoying when your best friend says, 'Do you want to come to Pizza Hut tonight?' Gggrrr!

I don't know if the symptoms have improved coz the stomach aches haven't gone. It is hard to tell. Thanx for the info! :)

stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted

Hello Charlotte,

welcome on this message board. You can always find help here.

celiac3270 actually had a similar problem. After going glutenfree he couldn't get better and then they found out he had malrotated intestines.

But it can take a while to get better. I remember it took me like forever... and I still have problems from time to time. Hang in there!

Guest usulasula
Guest usulasula
Posted

Has anyone here had an endoscopy? I had one in October and I have to have another one around Xmas time.

Carriefaith Enthusiast
Carriefaith
Posted

Welcome! :D

Yes, I had one endoscopy and some biopsies. I didn't have a second one though. I think it is a good idea to have a second endoscopy/biopsies since you will be able to see if the gluten-free diet is working ie. healing your villi.

celiac3270 Collaborator
celiac3270
Posted

Hi Charlotte...I thought I'd post here since I was mentioned twice :lol: .

I was diagnosed in February 2004...after having gastrointestinal symptoms for the past 8 years or so. Basically, I was paranoid about the diet and followed it perfectly, but saw little improvement. I had a second endoscopy (also had a first one to verify the diagnosis) to make sure that I wasn't accidentally ingesting gluten and it turned out that my villi had completely grown back...then I had more tests done and discovered that I had malrotation of the instestines, as well. It's relatively rare, occurs before birth, and is characterized by severe abdominal pain, often vomiting (look for green or dark yellow colors...sorry to be so graphic ;) ) ...umm, also by inability or difficulty in gaining weight, basically the celiac symptoms. I think it's unlikely that you have it, also, but if any of this matches up, maybe read up on it. It's normally found in infancy, but they missed it in me and took 14 years to find it...thank God they did, too, and thank God nothing happened to me over those 14 years...or I could've lost an organ and been living on IVs...yikes! :( I'm fine, though, and healthier than I ever have been. My symptoms also got progressively worse while I had them.

What about me? Nothing, really...if you have any questions or anything, you can e-mail me (see the e-mail feature right below the end of my post)...

Also about symptoms, make sure no gluten's getting into your diet--the tiniest bit from toothpaste or lipstick could impediment your recovery.

That's about it...welcome to the boards! :)

-celiac3270

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

Celiac.com Sponsor (A8-M):


MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

Hello, Charlotte.

  • 3 months later...
petlover Newbie
petlover
Posted

Hi, Asia here igot my test results back and they said i don't have celiac disease :D but there still is a chance that i do :( . And thats bad but i am glad i came up negitive. Got to go. Bye

celiac3270 Collaborator
celiac3270
Posted
I have not eaten gluten for only 2-3 weeks but have had a few accidents.  Some how now when I have an accident it hurts so much more

<{POST_SNAPBACK}>

Asia, which tests did you have done? Did you have a biopsy or blood tests and do you or your mom know which ones? I've read in other posts that you felt really bad when you accidentally consumed gluten, so you might have some problem with gluten, even if it isn't celiac.

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. asaT
      - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get...
    2. nanny marley
      - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me I tryed lol , another was to have another blood test after...
    3. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel. they offered me an endoscopic biopsy ...
    4. par18
      - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test...
    5. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748
    Muhammad
    Newest Member
    Muhammad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • asaT
      nothing has changed

      By asaT · Posted

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      IBS-D vs Celiac

      By nanny marley · Posted

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Is it gluten?

      By par18 · Posted

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • 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.