Positive tTg and EMA but biopsy negative

[Annatinks]

As the title says, I have tested positive for both Endomysial antibody
IgA and Tissu transglutaminase IgA (although a fairly low tTg of 12 U/ml - my results says greater than 10 is a positive result)

I saw the gastroenterologist and based on this, frequency of diarrhoea, sister with Coeliac disease and my autoimmune thyroiditis. He seemed to think Coeliac was going to be the obvious cause for me but the biopsies were negative. I’m now confused by this.

I spent a couple of weeks terribly unhappy with the idea of missing out on “normal” food but determined ofc I would do this if formally diagnosed but I’m not really sure what to do now.

Gastroenterologist said I might not have it or I might have early stages so it hasn’t damaged the bits biopsied yet.

Does anyone have advice from similar results to share please?

Just checking to give a bump…

I had a negative biopsy in 2007.. spent years with the same symptoms getting worse and worse. I was seeing an endocrinologist for low blood sugar in 2012 who ran the Coeliac panel and my tTg was over 3000… said I didn’t need a repeat biopsy as my blood test was more than enough for diagnosis. You could be in the early stages.

Thank you. Do you think it’s worth waiting for a formal diagnosis? Or just treat it as though coeliac even though I might never be?
I repeated the ttg and it was 19 this time

I'm 30, 10 years ago I had positive bloods but negative biopsy. This year I went back to the doctors after years of being told it'll be IBS. My brilliant doctor did another set of bloods, positive. This biopsy I have extremely damaged intestines and positive biopsy. The consultant said I was probably starting out with the disease and there wasn't enough damage for a positive result.x

With the benefit of hindsight do you wish you’d stopped gluten then? This is what they told me was most likely

Tough one, I'll be honest I find it such a pain being gluten free to the point I have to have my own butter because of crumbs and my own toaster etc so I always thought to myself I wouldn't treat myself as coeliac unless medically confirmed I am. However I'd have saved alot of pain and my hair falling out if I'd had gone gluten free years ago. It's possible you don't have enough damage yet for a biopsy to confirm. It's definitely worth stopping it all together as it will make you extremely malnourished and poorly x