Diagnosis Query

[Coconutty]

I’m hoping someone can help me with a diagnosis conundrum. My friend’s 16 year old daughter tested positive for the Coeliac Disease antibodies EMA and tTG (photo attached). She’s just had the endoscopy done and the doctor apparently said he couldn’t see any sign of CD. Biopsy results won’t be available for 8 weeks though. Can you have antibodies and no CD? What does this mean? She’s been having vague symptoms for about a year, feeling sick when she eats and fatigue. Thank you!

[Penel]

Hi

Sometimes damage may only be seen under a microscope. I think it’s going to be a question of waiting on the biopsy results.

Hope she feels better soon.

[Coconutty in reply to Penel]

Thank you.

[Hidden]

hi there, I was told they couldn't see anything abnormal during the endoscopy but the lab results showed severe damage and a definite positive coeliac diagnosis (like your friends daughter it was many weeks later). I'm really not sure why sometimes they seem to be able to see the damage during endoscopy but not others.

It's pretty unlikely that she won't have CD with that ttg level I'm afraid.

I do feel for youngsters going through it - tough.

Good luck for her X

[Coconutty in reply to Hidden]

Thank you. I guess they’re just going to have to wait and see.

[FFNick]

Rather than wait try excluding certain foods from her diet to see what effect that has.

[Coconutty in reply to FFNick]

I just spoke to her mum and apparently the consultant has now said not to eat gluten so 🤷🏻‍♀️. Mixed messages.

[Coconutty in reply to Coconutty]

Just to clarify I mean mixed messages from the doctor.

[Penel in reply to Coconutty]

If that’s what the consultant is advising, it sounds as though he’s positive about it. I wouldn’t wait for the biopsy results to confirm it before going gluten free (but the biopsy will give a definitive answer for the record).

[Haniko]

Hello,

When I was a teenager, I tested positive for CD but when I had the endoscope, it wasn’t present. I got told by the doctor that although it is not present yet, I will go on to develop it at some point. I’m 25 now and have been unwell for a long time. I’ve recently been hospitalised and my belerubin levels are high and I had inflammation in my scan. My liver function is also often high. I’m being tested again for coeliac this Thursday. Apparently sometimes it shows in the blood but not on the biopsies and sometimes not in the blood but through biopsies. I’ve known people that have taken a real long time to be diagnosed. I have to be on a gluten binge until Thursday (painful) but all I can suggest is, if your friends daughter is still experiencing problems, to try a gluten free diet and see if her health improves.

Hope this helps!