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

Hi Everyone


aussiegirl17

Recommended Posts

aussiegirl17 Rookie

Hello everyone I am a 17 year old female from Australia looking to chat with other teens round about the same age about living with celiac disease,

Cheers Aussiegirl


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



Celiac.com Sponsor (A8-M):



Kassie Apprentice

hey, welcome to the board! i'm sure you will meet people to talk to. i am 15 almost 16 and love to talk to other celiacs. feel free to e-mail me or pm me if you want. if you have any questions just ask :P

Anonymousgurl Contributor

Hey I'm 17 and have a BUNCH of food allergies...and I'd love to chat with you...feel free to message me sometime! I'd love to hear your story and what you go through...because it's REALLY tough for me, I'd just love to compare experiences with someone else (that's young)!

aussiegirl17 Rookie
Hey I'm 17 and have a BUNCH of food allergies...and I'd love to chat with you...feel free to message me sometime! I'd love to hear your story and what you go through...because it's REALLY tough for me, I'd just love to compare experiences with someone else (that's young)!

hey well basically this is my story from another one of my posts:

I started getting symptoms about 3 years ago, but took me a while to tell my mum because i was embarassed. basically everything i ate went straight through me. I went to a Dietician who suggested all these things and i can't remember how i directly got onto it, but through trial and error i discovered that when i didn't eat wheat/gluten i was absolutely fine. But because i hadn't been diagnosed i didn't stick to the diet properly and suffered for almost 2 and a half years. I had numerous blood tests and even produced a negative result from an endoscopy (small bowel biopsy). I kept returning to my doctor, who didn't seem to belive i had celiac disease and asking for more to be done because i knew that when i had no gluten i was absolutely fine but the slightest bit would trigger the symptoms again. I even went to an iridologist who told me i had an allergy to wheat without telling her a single thing about me. Finally i got sick of it all and went back to the doctor, who by now was a doctor i used to see before he was replaced by the doctor seeing me through my diagnosis, to write me a letter so i could join the coeliac society. He pulled up a blood test result from 2 years ago, highlighted in red, that tested for coeliac disease that basically proved i had it, the doctor was convinced anyway. I was of course upset that my previous doctor had neglected to tell me this. I am still puzzled as to why it was so hard to get a proper diagnosis, perhaps because i had half started a gluten free diet. The surgeon who performed the endoscopy told me to eat wheat before the test, but i couldn't because it made me so ill and i was attending school as well as a part time job.

so basically i've been half gluten free for 2 and half years and proper gluten free for almost a year now. But i still make mistakes and still get sick sometimes. There is quite a bit of gluten-free food you can buy from the supermarket over here, but i only live in a small town so there's not that much variety. It's still really difficult when i when i go out like shopping and i can't find anything to eat and to have to walk past macdonalds and KFC.

I'd love to hear your story, Aussiegirl

egiap10 Newbie

hi, yeah im your age from australia also. i read your story, and its so similar to mine! its good to hear other peoples stories, so you know ur not the only one going through this. yeah some doctors and gastroenterologists(dunno how to spell it hah) refuse to accept you have it when you clearly do. and yeah haha when all your freidns go somewhere and you just drink water it isnt so good.. but its getting easier with age. are you doing the final exam/hsc for high school this yr?? ive been so sick with this im going to go so bad i hardly turn up to school anymore.. so any times ive been tempted to drop out.

Kassie Apprentice

egiap10- I'm not from australia, but i just wanted to talk about the school stuff. Don't drop out! yes it might seem very tempting to you at some times, but in the long run it is not worth it. i too have missed so much school! i had to appeal (its when you have to go into this commitee and say you deserve your credit it) you have to do this if you miss too much school. during that whole proccess i was thinking it would be much easier to just give up, but they granted me credit and i have been able to keep my grades up! so anyways just thought i would reply ttyl

  • 2 weeks later...
Teku Apprentice

Hi i need more replys to my topic so check out the skate boarders only topic :) please


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



Celiac.com Sponsor (A8-M):



Liz92 Rookie

My story is that my uncle, cousin, Dad, and two brothers are Celiac so when I got symptoms I knew it as probably Celiac and to be sure I had a screening. All the doctors said it wasn't Celiac disease-they are stupid ninnys. My 15 yr. old brother, tho, he's stupid and aets gluten and suffers because he loves it to much. wierdo. BTW, I'm almost 15 and I'm from Utah.

:rolleyes: Lizzie

Archived

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

  • 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 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fermented foods, Kefir, Kombucha?

    2. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,877
    • Most Online (within 30 mins)
      7,748

    Ruth Margaret
    Newest Member
    Ruth Margaret
    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
      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks
    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
×
×
  • 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.