Biopsy Questions

[Ginger38]

Are there others who have not gotten the biopsy or had a negative biopsy but still have celiac disease? Is the biopsy fool proof? 

I wasn't referred To GI after my blood work several years ago and was basically misled and told I did not have celiac disease, even with a positive TTG-iGA. I honestly cannot financially afford the biopsy or the time off work, but more than anything I don't want to start eating all the gluten it requires again and live in the bathroom, along with itching all the time and looking pregnant feeling miserable  just to have the biopsy. 

I guess I'm just wondering if the biopsy is required? Can I just live as a celiac without an official diagnosis by biopsy? And Do I tell doctors in the future probable celiac by blood work but not confirmed by biopsy or do I just omit this from my medical history? 

[RMJ]

You can live as someone with celiac disease without a biopsy.  I’d just tell future doctors I had celiac disease and wouldn’t even mention how it was diagnosed unless asked.  

I didn’t have a biopsy at first due to unrelated medical reasons.  At first my diagnosis was just “elevated celiac antibodies.” Eventually my gastroenterologist said I had celiac disease.

[Scott Adams]

In Europe they are now diagnosing celiac disease in cases where the antibody levels are 10x the level that indicates celiac disease. So this no-biopsy approach of now becoming more common.

[Ginger38]

8 hours ago, RMJ said:

You can live as someone with celiac disease without a biopsy.  I’d just tell future doctors I had celiac disease and wouldn’t even mention how it was diagnosed unless asked.  

I didn’t have a biopsy at first due to unrelated medical reasons.  At first my diagnosis was just “elevated celiac antibodies.” Eventually my gastroenterologist said I had celiac disease.

Thank you, I will try this and see how things go 

7 hours ago, Scott Adams said:

In Europe they are not diagnosing celiac disease in cases where the antibody levels are 10x the level that indicates celiac disease. So this no-biopsy approach of now becoming more common.

I wish it were easier here in the US 

[Scott Adams]

Just to clarify, my post about Europe, they are NOW (I had NOT in my post...typo) diagnosing if your levels are 10x.

[Darkside]

I live in Canada, and I was diagnosed without the endoscopy. My internist was confident with my blood test results to diagnose me.  I'd told her in advance that I wasn't comfortable doing the endoscopy ( personal choice)  and she didn't want to insist for me to get one.