Ds (7) gastro issues, all tests clear - what am I missing?

[mayaknew]

Ds has suffered chronic constipation form birth. For the past 2 years he has developed these symptoms

Reflux
Vomiting
Nausea
Loose stools
Soiling clothes/bed
Upper and lower abdo pain
Anal fissures
Piles
Lethargy
Loss of appetite
He becomes very pale even his lips

He is on laxatives/ppis/buscopan for all above and creams for his bottom.

He has had plenty of investigations - bloods/stool samples allergy testing and even had scoping done.

But nothing seems to explain his symptoms. What am I missing?

when they did scopes did thry do biopsoes for thongs like EGID
also non ige allergies dont show on any tests could be that

Yes they did biopsies. Showed some inflammation in stomach but they didnt think it was significant.

I know I've asked for a referral to dietician for some advice on non ige

I think they are just hoping he grows out of it. Which would be great but I want to try and resolve it now

Is he hypermobile?

Could be non-ige. Dietician will just advise cutting foods out, monitoring symptoms and then reintroducing to see if symptoms return so you could go ahead and start with dairy as most common allergen

Sounds suspiciously like food intolerance to me. Have you tried cutting the major culprits out of his diet and seeing how he gets on?

Not that I've noticed and I think I would have as hes very athletic when hes well.

His sister is non ige to dairy so he doesnt eat a lot of dairy anyway.

He actually has a really healthy balanced diet. He puts me to shame 😳

Have a look at Eosinophillic Esophagitis. Does he have any asthma/eczema/allergy issues? This can only be diagnosed by biopsy - did they check this already? It will not show up on any other test. Did they check biopsies for Crohns too, much more accurate than other tests?

Have they ruled out Coeliac? Another vote for allergy here. Try removing wheat, but you know these things take weeks. Also some dairy would still do it if it was that.

Yup. Negative for coeliac. And h.pylori

Have they done stool testing for parasites? Bloods been run? Get them to do the easy tests first. Everything else is a very long game.

Fructose malabsorbtion?

Sister being 'intolerent' (ie non-ige?) to dairy would suggest that would be first thing to try. Even a tiny amount sets off reactions in my DS and constant irritation of the gut could make symptoms a lot worse.

Crohn's disease? Not common in children, so easily missed.

Our paed consultant said a negative coeliac's result doesn't mean they don't have coeliac's. An exclusion diet would give you a better idea but don't do it until you've discussed with his medical staff.

Has he been tested for Cystic Fibrosis? It's unlikely but not impossible so if lots of other things have been ruled out might be worth considering.

Negative for crohns.

They've said they're not doing any more tests on him because the medication he is on helps they're just going to keep giving medication and hopw he grows out of it.

He was on the 90th centiles at birth and now is on 25th but hes maintaining that and he is growing so they just aren't that bothered. But it affects his quality of life.

They did do biopsies but they didnt tell me what the biopsies were for just that they were negative except for inflammation

Did they check the small bowel, you can't do that via scope and would be a barium X-ray, CT or MRI scan. Crohns disease won't always show on blood and stool tests.

Following but sadly no advice. DD has had chronic constipation since birth - not as severe additional symptoms but I have also been lost as to cause despite investigations. It must be very stressful for you

Hes not had a ct MRI or xray. And no plans to do any of these.

Could be worth investigating Gastroparesis x

Those symptoms could all be caused by constipation

Has he been on lots of antibiotics at any point?