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Got The Genetic Test Done, Have The Gene, Now What?

still.joyful

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still.joyful Apprentice
still.joyful
Posted

Hi All,

Haven't been on here in awhile...so this is what's been going on...

1. I was tested (blood) for celiac disease 2 years ago and the test came back negative

2. This past summer my GP told me to go on the gluten free diet because she thought I was gluten intolerant.

3. Go gluten free for months, get glutened while traveling in January and get VERY SICK

Come back home, go to the doctor

4. Sigmoidoscopy is normal; no crohn's and no colitis (had an mri of my stomach, everything looks good)

5. Finally, Gastro does the genetic test for Celiac disease. I test positive for the HLA DQ8 Gene. Not sure how to read the rest of the info, haven't spoken with the doctor (the results were faxed to me just now).

Other symptoms: mouth sores every two weeks, reproductive issues, 'Irritable bowel syndrome', asthma, can't gain weight worth a dime!

I've tested negative for everything...until now, finally a positive test...I never thought I'd be so relieved...but now I'm paranoid lol

What are the chances that I can have Celiac disease if I have the HLA DQ8 gene??????? THANKS!

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dadoffiveboys Rookie
dadoffiveboys
Posted
Hi All,

Haven't been on here in awhile...so this is what's been going on...

1. I was tested (blood) for celiac disease 2 years ago and the test came back negative

2. This past summer my GP told me to go on the gluten free diet because she thought I was gluten intolerant.

3. Go gluten free for months, get glutened while traveling in January and get VERY SICK

Come back home, go to the doctor

4. Sigmoidoscopy is normal; no crohn's and no colitis (had an mri of my stomach, everything looks good)

5. Finally, Gastro does the genetic test for Celiac disease. I test positive for the HLA DQ8 Gene. Not sure how to read the rest of the info, haven't spoken with the doctor (the results were faxed to me just now).

Other symptoms: mouth sores every two weeks, reproductive issues, 'Irritable bowel syndrome', asthma, can't gain weight worth a dime!

I've tested negative for everything...until now, finally a positive test...I never thought I'd be so relieved...but now I'm paranoid lol

What are the chances that I can have Celiac disease if I have the HLA DQ8 gene??????? THANKS!

I am DQ8 / DQ4 - I have problems with Gluten. Your asthma is probably caused by REFLUX from eating gluten. I would bet 6 months to 1 year gluten-free would relieve your Asthma. IBS is probably due to gluten too. You may not have full blown celiac, but you probably shouldn't ever eat it again. I get terrible back pain from gluten, my dad had 30 years of stomach problems. I get (and my dad) mouth problems from gluten. Mouth sores CAN be a sign of Dermatitis Herpetiformis - another symptom of gluten. I would go and stay gluten-free for a while and see how you feel.

nora-n Rookie
nora-n
Posted

The blood tests are only about 50-80% sensitive for picking up full-blown celiac, and much less sensitive to low-grade celiac......often they set the cutoff high so that only few people test positive.....I guess you just are one of those it misses.

Many people only test positive on one of all the different tests. You probably only had one of them.

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