Could this be celiac?

[NoSourDough]

Posting in AIBU for traffic.

My 13 year old daughter has the celiac gene (I am diagnosed). Over the past 18 months she has had the following symptoms;

Constant low iron/anemia without a cause
Persistent Skin rash in the elbow folds
Joint pain
Constant reflux and hiccups for hours on end (daily heartburn)
Loose stools with virus symptoms
Dark blood in stool on one occasion - A&E visit
Slightly elevated stool samples / inflammation
Tooth enamel problems
Very slow weight gain
Persistent viruses with fever
Migraines

however she has had two blood tests for celiac disease and as both are negative, both consultants (private and NHS) are refusing to confirm she has active celiac disease. I too had a negative blood test but I am a severe case (diagnosed via biopsy).

I'm trying to get her off gluten but she is stubborn without a GP diagnosis. Plus a formal diagnosis is best.

Would others keep pushing this? She has had so much time off school, under 80% now.

I would just cut out all gluten (I know easier said than done) and keep a symptom diary. If you could get her to do it even for a few days, she may well see a big improvement in her health and want to carry on going forward.

Surely it’s awful for her to have those symptoms daily so hopefully if you explain this change may well help, she will get on board.

Thank you.

its just so frustrating. I would really like to know if other parents have been given a positive diagnosis based on a positive gene test but with a negative antibody test.

No, we got the diagnosis for my daughter on her antibody test, didn’t know you could get a gene test for it. My eldest daughter had slow weight gain and joint pain and started fainting. Her inflammation levels were very high and she got a consultant appt quickly. I am a celiac also.

My daughter had to eat at least 2 portions of gluten (breakfast and lunch) for 2-3 weeks before the blood test so it would show up.

Good luck with the diagnosis of your daughter’s symptoms.

She sounds exactly like my Dd did at 13 who WAS coeliac - very similar symptoms and also on less than 80% attendance - it was terrible. She could barely get out of bed some days as she was so exhausted. I know they’re unpleasant but could you push for an endoscopy perhaps? I have read about bloods coming back negative despite all signs to the contrary so I don’t think you’re alone - at least with an endoscopy they could check to see if there is damage.
good luck, keep pushing - no 13 yr old should have to suffer like that.

Also ask for a stool sample to be sent to the lab to test her for Helicobacter pylori

Source: Patient.info share.google/E9TZjbjRJbwK1rSZE

Thank you. We had stool samples run twice this year as she was bleeding from her stomach after taking ibuprofen. I think she has a very sensitive stomach because of all the inflammation. It was slightly elevated but they didn’t mention anything else.