Coeliacs 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

I have no advice but my 4 year old is exactly the same. We are waiting for blood results for him for coeliac disease. The paediatricition we saw did say that often in cases like this they find no reason for the issues and they simply grow out of it.

@Newuser75 aww bless him, it's not nice for them is it.

GP was so sure it was coeliac but they were negative.
Also just to warn you, it took 7 weeks for our results to come back! I'm not sure that's the norm but just a heads up!

Lactose or CMP intolerance ? Non coeliac gluten intolerance ?

You say she’s been like this since birth, how was she fed as a tiny baby ?

Have you tried a gluten free diet ( it’s not hard once you get the hang of it ) and see if it improves her symptoms ? you need to diary everything - every single thing she eats and drinks and every single symptom, even if you think it’s not related.

There’s plenty GF products in the shops, your child won’t even notice . This seems like a risk free and low inconvenience option.

If gluten is the culprit you should see a difference in a few months.

But you must MUST be 100% careful and read labels of all processed foods. Don’t assume that things like yoghurt or grated cheese or crisps are GF, they often are not.

Has she been tested for crohns or colitis? This requires a cal protectin test [ stool sample looking for inflammation ]. If the inflammation is high, they will then do a colonoscopy to say for sure whether it is this.
Have you seen a gastro doctor?

My dc4 is in exact same position. 2 celiac blood tests negative but anemic (which won't respond to iron supplements) and growth issues. We are seeing a gastroenterologist soon and hope they'll do an endoscopy to properly check for celiac as we've heard from lots of people including the doctors that the blood tests are often false negative.

The consultant also suspects EoE which has a long name that I can't spell but if you Google it it'll come up.

Growth issues / anemia / failure to thrive and tummy issues point to crohns or ulcerated colitis - gp should have offered a stool test to rule this out.

We have just got our sons blood results back with were negative for coeliac disease. Need to speak with the doctor but not sure where to go next. He was also low in iron too. It's a nightmare isn't it?