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c194
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c194 Newbie
c194
Posted

Hi, wondering if anyone can help me.

 

basically I have been tested around 2/3 times for celiac/colitis/Crohns/auto immune diseases. Each time results have came back clear meaning no diagnosis. I am 25 now but have had for years recurrent mouth ulcers although the past 2 years they have been less frequent and only seem to occur when I am run down I have extreme tiredness at the moment to the point I can’t explain it, I have also had quite a few low zinc levels and numerous other symptoms and I just know something isn’t right also inside elbow rashes lately. My mum/grandmother both have ibd. I am just wondering what do I do? I have had blood tests/stool samples but no other tests such as cameras etc. Is there any other tests people recommend. I know I sound very dramatic but this is seriously affecting me in work etc. Not only tiredness but my stomach bloating mood everything. 

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Ennis-TX Grand Master
Ennis-TX
Posted

The blood test are used for initial screening while the endoscope with biopsy is the gold standard for diagnosis, there are several blood test they can do, do you know what test where done and can you post results?
https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/
https://celiac.org/about-celiac-disease/screening-and-diagnosis/diagnosis/
You mention a rash, any chance this is DH, I do not have it myself but if I recall those with it often test lower on the blood test and can have more spotty damage to the intestines as the antibodies tend to be more in the skin. Testing insoles a biopsy next to a active lesion.
https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

cyclinglady Grand Master
cyclinglady
Posted

I agree with Ennis.  Did you get ALL the celiac blood tests?  If my doctor had just ordered the screening TTG IgA, my diagnosis would have been missed.   I test positive to only the DGP IgA, even on repeated tests.  

 

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    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
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      Supplements for those Diagnosed with Celiac Disease

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    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
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      By nanny marley · Posted

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