EDG Question and reputable gene test

[KarenAgnes]

I was diagnosed in 2002 with celiac disease in 2002.  I have since been on a gluten free diet.  My new GI did an EGD when having my colonoscopy and said I do not have Celiac. It is my understanding that I have to have been eating gluten for this to be accurate? He disagrees. Thoughts?

Also what specific gene test can I take at home to test for the gene? Thank you!

[RMJ]

3 hours ago, KarenAgnes said:

I was diagnosed in 2002 with celiac disease in 2002.  I have since been on a gluten free diet.  My new GI did an EGD when having my colonoscopy and said I do not have Celiac. It is my understanding that I have to have been eating gluten for this to be accurate? He disagrees. Thoughts?

Also what specific gene test can I take at home to test for the gene? Thank you!

You are correct.  Your new GI is not. If you’ve been on a gluten free diet you should have healed and an EGD or blood tests for celiac antibodies will no longer find any signs of celiac disease. Your celiac disease is no longer active, but you still have it. I think you need a new, new GI.

[KarenAgnes]

5 minutes ago, RMJ said:

You are correct.  Your new GI is not. If you’ve been on a gluten free diet you should have healed and an EGD or blood tests for celiac antibodies will no longer find any signs of celiac disease. Your celiac disease is no longer active, but you still have it. I think you need a new, new GI.

Thank you for your reply. I have dedicated years gaining knowledge since I was originally diagnosed and I appreciate the feedback! I agree, need another GI!

[Scott Adams]

For some reason many doctors don't seem to know that celiac disease, in most cases, goes into "remission" when on a gluten-free diet, because the offending gliadin has is no longer present, so the runaway autoimmune reaction ceases. Getting retested for celiac disease, whether a blood test or an endoscopy, would require a gluten challenge, where you'd need to eat gluten daily again for 6-8 weeks (blood tests), or 2 weeks (biopsy). 

[KarenAgnes]

19 hours ago, Scott Adams said:

For some reason many doctors don't seem to know that celiac disease, in most cases, goes into "remission" when on a gluten-free diet, because the offending gliadin has is no longer present, so the runaway autoimmune reaction ceases. Getting retested for celiac disease, whether a blood test or an endoscopy, would require a gluten challenge, where you'd need to eat gluten daily again for 6-8 weeks (blood tests), or 2 weeks (biopsy). 

Thank you for your reply!

[Sharib]

On 5/18/2022 at 10:46 AM, KarenAgnes said:

I was diagnosed in 2002 with celiac disease in 2002.  I have since been on a gluten free diet.  My new GI did an EGD when having my colonoscopy and said I do not have Celiac. It is my understanding that I have to have been eating gluten for this to be accurate? He disagrees. Thoughts?

Also what specific gene test can I take at home to test for the gene? Thank you!

Hi Karen,

What did the doctor base your Celiac diagnosis on back in 2002?  As far as I know, gluten should be eaten prior to an EGD with biopsies of the small intestine.  There is no standardized amount of gluten and/or servings per day or a set duration we must eat the gluten prior to the biopsies.  I asked a few docs and looked it up.  I ate gluten daily for 2 months right up to my EDG at the end of 2020.  The genetic labs are HLA-DQ2 & HLA-DQ8.  Your doctor can order this panel.  I have one that is positive.  Many people have a positive gene and do not have Celiac.  It means you have a predisposition to Celiac, but may not develop Celiac.  Since my biopsies show the characteristic villous blunting,  IEL’s-intraepithelial lymphocytes and crypts with a positive gene & GI symptoms, it was diagnosed as Celiac.  To note, my Celiac labs were negative.  This can happen.  
 

I hope you get to the bottom of this quickly.  I hope you don’t have Celiac.  
 

Take Care!

Shari