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Tested positive to both hla-dq2 and hla-dq8


Jenjenn

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Jenjenn Newbie

I've just been told by the doctor that I am both hla-dq2 and hla-dq8 positive!

Before this I've never thought I could have celiac disease. I'm 35 and I've always eating gluten happily my whole entire life without suspecting it might be the culprit.

 

All those awful IBS symptoms I've had over the past few years, recurrent miscarriages (4), hypothyroidism dairy intolerance, horrible abdominal cramps and anaemia I kind of attributed to just being unlucky, never 

did I link it to Celiac. So I'm looking at getting both the blood test and the endoscopy done soon, whilst at the meantime, eat buckloads of gluten 

to ensure my blood test doesn't come  back with a false negative (I want to enjoy them one last time before I bid farewell to them after the tests)

 

Would love to hear others who had genotypes of hla-dq2 and hla-dq8 positive...what your symptoms were and whether your

blood/biopsy came back positive/negative. 


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Judy3 Contributor

I tested postive for both as well.   My  other blood tests were negative  and done first but at the time I was very sick and living on cottage cheese and jello so I was not consuming gluten at all.    My biopsy was positive.    The GI was willing to diagnose me based on the hla-dq2 and hla-dq8 but already had the biopsy /colonoscopy planned for the second time so we continued.   He said it had to be Celiac based on what he saw during the biopsy because (his words)  Only 2 things can make your insides look like  raw meat. One is cancer and it's not that because I already did that biopsy or Celiac... it was.     I've been gluten free for 7.5 yrs and my symptoms were digestive in nature  pain, vomiting, constant nausea, and of course the big D.     I was weak, had skin rashes (that I know now were DH but my primary doctor didn't have a clue)   I went through test after test for everything that could cause these symptoms for 3 yrs.  Had they done the genetic testing first I would have been diagnosed 2 yrs earlier but unless the doctor ordering the tests is aware and educated about Celiac they won't know.   Doing great now - no more pain or digestive issues, allergies were plentiful before fish, seafood, nuts, flax, anything with Omega 3's and now they are all gone.. :)       I didn't eat fish and seafood for 25 yrs because I got so sick from it but they have now figured out that what appeared to be an allergy was in fact Celiac rearing it's ugly head way back then already.   Times have changed so much , tests are better (still not perfect) and doctor's seem to be more aware of Celiac.   When I was a kid Celiac was a disease for skinny little failure to thrive kids but they know now that it can be different for everyone and it can lay dormant with mild symptoms and something can trigger it.   My trigger was when I had a hysterectomy and my kidneys failed after.   From that day on my mild heartburn that I had all my life became a much larger issue which is why I'm here on a Celiac Disease site  :)   Good luck with your tests and with everything.   

Jenjenn Newbie

Wow thank you for sharing!! I read somewhere those with our genotype may manifest later in life and harder to diagnose as its not classical like some other ones? Also our chances of getting celiac is higher as we have both high risk genes.

It's amazing how we can live so many decades with such a disease without ever realizing we have it, because it could be mild in the background and chronic and manifest in different ways that you keep getting misdiagnosed. They say a stressful event can trigger worsening of symptoms and for me perhaps it was all the ivfs and miscarriages. 

They rescheduled my endoscopy and colonoscopy till next month because I have been taking steroids and it may effect results. I am abit annoyed coz I need to keep eating gluten for a month. But at the same time it will be good to consume everything I loved that contains gluten for the last time...

Shall keep you posted :)

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