Coeliac or something else?

[Madaleinemoo]

Hi all

My dd is 3 years old. She suffers from diarrhoea, tummy pains, bloating, fatigue and is low weight. The diarrhoea has been a consistent from birth.

She's recently been for tests which came back that she was low in a few things, including iron. It also showed signs of inflammation.
The doctor originally thought that she probably had coeliacs disease but the results have come back negative.

Does anyone have any idea as to what else it could be? I can't imagine you can get false negative results for coeliacs?
We've been referred on to paediatrics but the wait is longggggg!

TIA

Was she eating gluten containing foods twice a day for six weeks prior to blood test?
My son was diagnosed with coeliac disease when he was 16 months but symptoms became notice from 10 months of age. My son was severely anaemic at diagnosis so you daughter showing low iron levels is a sign.

Has she been tested for lactose intolerance? You can be gluten intolerant and have negative coeliac test. My other two sons are both gluten intolerant, one lactose too, and both have to restrict gluten.

@DeerWatch hey!
So she wasn't strictly gluten free prior to the tests but I was definitely mindful to not consume lots of gluten so I can't be sure she had enough then. I wasn't told that she'd need to have that much for it to be accurate!

Coeliacs was the only one they tested for but now shes been referred, I'd imagine they'd test for further things.
The wait is 16 weeks!! So in the meantime we are eliminating certain food groups for 4 weeks a time.

Hi there,

My daughter was reffered to the Gastro depth after months
of stomach issues, low iron, fatigue, loss if weight etc.
First they did their own blood test and stool sample test which is called calprotectin test, this checks for any inflammation in the gut. My daughters came back quite high which turned out as to why she was low in iron etc, the inflammation meant her gut could not absorb enough nutrients.
She ended up having tests done to check for IBD inflammatory bowel disease. Her diagnosis was chrons disease.

I am only telling you my story so you know what to expect it's nit to worry and scare you.

My daughter was 12 years old on diagnosis and is now almost 18.
She was put onto treatment straight away and has led a normal active life since.

Please feel free to get in touch if you want to chat at anytime.

Blood tests for coeliac disease can be a false negative, the only way to be sure is a gastroscopy and biopsy, but understandably doctors would be reluctant to do that on a child without positive bloods. I would tell the doctor that she might not have been consuming enough gluten so the test could have been inaccurate and ask to retest in a few months.

But with the diarrhoea being present from birth, that isn't going to be caused by gluten because it was present from before she would have been eating gluten. Lactose intolerance sounds a strong possibility. When I thought my DS might be lactose intolerant his nurse said to cut out all lactose and see if it made a difference rather than any testing, she said that's how they diagnose it.