Ten year old with chronic pain

[OneSmallPieceOfCheese]

My ten year old has had abdominal pain for years, and we haven't been able to discover why. She has cut out gluten which has helped a bit, but the low level constant pain is still there. It is always hurting in the same place, around the belly button. Painkillers don't help. She had toddler diarrhoea which resolved (when she stopped having Weetabix for breakfast) but then became long term constipation. She still takes medication for this and is much more normal now, but still has some trouble with it. No gas, burping etc, not really bloated. It seems to be linked with her headaches and anxiety, but I don't know whether one is causing the other. We are waiting on an ultrasound.
I'm really don't know what to do as I can't reassure her when I don't know what's causing it. If anyone has experienced something similar, I'd be grateful for any advice.

When you did the tests for coeliac I hope it was when she was still eating gluten otherwise you would have got a false negative.

@Pigeonqueen yes, tested while eating additional gluten to be sure!

Mum thought it was celiac and went to docs a lot and they thought it was IBS. Did a test and was low thyroid and then poos went normal on treatment.

Oh if she has hypermobility that is defo linked to gut issues. London hyper mobility unit is very good for adults.

So if she's tested positive for coeliac (you said initial blood tests were high) then is she not under the care of a dietician and a specialist coeluac nurse at the hospital? DD is coeliac and sees the team yearly.

Is she strictly gluten free, including cross contamination?

Her very first blood test suggested coeliac. But the subsequent two tests were lower, with the last one being in the normal range. While still eating gluten.

Any blood test indicating coeliac should be referred to a gastroenterology consultant for further testing, perhaps endoscopy. If you weren't referred I'd push for that.

We've been under peadiatric Gastroenterology for a while now, just waiting for tests.

Hi OP, your DD sounds just like my DD pre-coeliac diagnosis. My DS (silent coeliac) also had awful stomach pains and he was "mildly coeliac" with a TTGA level of 45 - he had an OGD last year and his coeliac was confirmed that way. I would ask your GP for a referral to a paediatrician and push for an OGD - yes, it isn't pleasant but children are under GA and you get a confirmed diagnosis. Good luck.

My ten year old is the same. Also under the hospital. Nothing revealed on the scans. Blood tests were supposedly normal. Then six months later on another hospital visit the bloods were re read and they told us she had a milk protein allergy. Not sure if that explains all her symptoms but I’m hoping cutting out milk might at least make her more comfortable. Worth asking for a recheck of any blood tests that have been done

Thank you @bluebellsanddaisies23 and @toomanyleggings , it's reassuring to know we're not the only ones in this situation. It's just so draining for the entire family as nobody can make it better. And it's just endless waiting for the NHS appointments. My worry about having a biopsy taken is that she'll have to be on gluten for six weeks and that will be just awful for her. Her pain is very near her belly button, near the front and not all through her gut as I'd have expected with something food related. I've been reading up on things like hernias in case it's that.

Crohn's or Ulcerative Colitis is worth considering. Mine came on in teens and at first presented as stomach ache and constipation.

Update: we are on the waiting list for an endoscopy. They want to check for coeliac disease and Crohns. Unfortunately it's back to a gluten diet again 😕
Thanks to everyone who replied so far. I am grateful for the information about what others experienced, especially the less common symptoms that might be missed because they aren't so well documented.

Hopefully not a long wait so you can get answers!

Thank you. Fingers crossed.