9yo with massive swollen belly

[mawbroon]

DS1 is almost 9yo and has a history of allergy/intolerance and gut problems.

He had an egg allergy which he outgrew by age 4 and an intolerance to dairy (following a horrendous D&V bug) which stopped around the same time.

He described reflux like symptoms when he was 5yo, but I don't know how long he had been suffering from it. Those symptoms stopped overnight after having his tongue tie revised.

Although he had outgrown the dairy intolerance, he never liked milk as such, he only ever took dairy in other forms.

So, I thought that the swollen belly was perhaps from swallowing down a lot of air when he was unable to chew properly before his tie was revised, but it seems that it's something else. It seems to have got worse than ever in the last few weeks.

He is otherwise fit and healthy except that his poo recently has not been great. He has been doing lots of little pale and skinny poos rather than his normal ones. I have the pleasure of seeing them in the toilet when he forgets to flush

He has loads of energy and runs around playing football with his pals at every opportunity. His height and weight are on the same centile. He is not skinny by any means, he is pretty solid, but i can see his ribs front and back when he has no top on. It's just this massive belly.

I am trying to make a plan of action to help him. He has recently started taking cereal with milk, so milk in milk form is a suspect. He eats loads of bread and porridge so wheat and gluten are suspects too. Also, we all had a particularly nasty vomitting bug at the beginning of August which is another suspect. I think I will start giving him probiotics (proper ones, not Actimel or the like!)

Coeliac is unlikely I think. He was screened for it when he was younger because he was also anaemic (OK now). I know I can't rule it out completely, but he is otherwise fit and well which makes me think it's not that.

Any suggestions where I should start? And have I missed anything?

[ClapHandsIfYouBelieveInFatties]

You need to take hum to the GP. A swollen abdomen needs checking out....I see that he's had a history of allergies but don't be tempted to assume it's due to that.

[ClapHandsIfYouBelieveInFatties]

To expand and without wanting to frighten you, thin or ribbon-like stools can indicate a blockage. Not saying he has something awful but he could have a build up of hard poo or something inside could be swollen.

[mawbroon]

You're right. I do need to have him checked out to make sure it's nothing serious.

I have found GPs to be less than helpful before now when it comes to intolerances though I wouldn't be surprised if they just told me he was fat (which he's not)

I didn't really mention in my post that his tummy has never been flat, it's just that it's worse than normal just now. If I look at the other kids at swimming lessons, none of the others are the same shape. The overweight kids have bigger bellies, but they have a layer all over IYKWIM.

[ClapHandsIfYouBelieveInFatties]

Yes I know what you mean. You can tell it's not just fat because of the way it's "coated".

Do take him then the GP can palpitate it and feel if it's sore or if he's suffering from impaction or something.

[titchywitchy]

Bloated belly is a common coeliac symptom. My DS had it - his belly was hard/firm (like a pregnant belly) rather than podgy like a beer belly IYSWIM. The inability to digest food properly causes lots of gas to be produced which distends the belly. Stupid initial paediatrician did a scan of his belly and just said 'it's gas' - no investigation into what was causing it. Took another 18 months for us to get to the actual problem - the coeliac diagnosis.

Unhelpful GP will probably pooh-pooh the idea of coeliac if your DC has lots of energy and good weight/height. However, many coeliacs are not underweight/anaemic at diagnosis. If I were you, I'd insist on a blood test to rule it out at least.

[titchywitchy]

Whoops - forgot to say that pale poo is another coeliac symptom - especially if they are 'floaty' (incomplete digestion means that there's lots of fat in the poo, which causes this).

[titchywitchy]

And coeliac can 'switch on' at any age, so a previous negative test doesn't exclude it.

[mawbroon]

Does a blood test give a definite answer re coeliac?

[titchywitchy]

A negative blood test is not definitive. (some false negatives occur, plus you can develop coeliac at any age).

A positive blood test makes it very likely that you are coeliac. For children, they now say that if the test is over a certain level (not sure exactly what the level is, but Coeliac Uk will have the info) AND the child carries one of the coeliac HLA-type genes (DQ2 or DQ8) - also ascertained through a (separate) blood test, that is enough for a diagnosis of coeliac.

Adults, and children with a positive, but less high, blood test result, have to also have an endoscopy (biopsy of the small intestine) to confirm the diagnosis.

[GoldiandtheBears]

My DD had similar belly symptoms and had impaction, a very serious case of. It required a hospital stay of a few days. She was able to poo prior to it, the blockage was further up and poo moved around it. There was months and months worth in there. I simply could not believe it when it all came out. Her belly was very round and she hardly ever ate and had tummy pains.

[GoldiandtheBears]

She also won't touch dairy! Except chocolate of course.

[tkband3]

As soon as I read your thread title, I thought coeliac disease. DD1 used to have a huge belly before she was diagnosed, which wasn't healthy (as I thought) but actually down to her being malnourished . The poo you describe is also symptomatic of coeliac. Testing is better these days, but it used to be quite common to get false negatives, so I would definitely insist on a blood test, if only to rule it out.

[mawbroon]

Well, he had no dairy today and his stomach was definitely not as swollen at bath time.

But I know that I still need to get him checked out.

He is also really hungry all the time and I wonder if he is unable to absorb nutrients properly. Does that fit with coeliac?

[tkband3]

Yes, coeliac destroys the gut, so that sufferers don't absorb any nutrients from what they eat. So they're at risk of calcium, iron and vitamin deficiency. There is also a strong link between undiagnosed coeliac disease and lactose intolerance, so if coeliac was diagnosed, you might find that the dairy issues would subsequently disappear.

[titchywitchy]

Yes, coeliac causes malabsorption. Eating gluten triggers the immune system to produce antibodies which then attack the villi lining the small intestine. It's these villi that absorb nutrients from the food passing through. As they are slowly destroyed, the nutrients can't be absorbed. The cells which absorb lactose are right at the tips of the villi, so lactose-intolerance is a common side-effect of untreated coeliac. (After going gluten-free, the villi regrow and the lactose-intolerance disappears).

The malabsorption gradually leads to anaemia, vitamin D deficiency, calcium deficiency etc. etc. Again, after going gluten-free, this all self-corrects. It can also lead to extra hunger - Coeliac UK reports that over half of coeliacs are actually overweight at diagnosis, and this may be the reason: over-eating to satisfy the body's need for nutrients, which are still not absorbed, so you can be overweight but malnourished at the same time.

It's really really really important not to cut gluten out of the diet before diagnosis though, as that will cause the test to be negative. And it's really really really important to get a proper diagnosis - basically however well-meaning you are, you will not be as thorough about avoiding gluten if you haven't had the proper diagnosis. Nor will you get the medical follow-up (annual tests etc.) to support you.

It may not be coeliac, but it's well worth finding out. I really wish someone had alerted me to what my DS's symptoms meant as it would have saved him 18 months of increasing unwellness. And it would have saved me 18 months of being patronised by the bloody paed who should have known to test him instead of telling me I wasn't feeding him a varied enough diet. Luckily he went on holiday and the doctor standing in for him recognised the symptoms and sent us for an immediate test - transformed my DS's life.

Google the NICE guidelines for testing children for coeliac and take them with you with your DC's symptoms highlighted. Doctors can't ignore those guidelines, even if they are not well-informed enough to know them without prompting.

[mawbroon]

Thanks for all your replies. I have not ruled out coeliac as a possibility but am pleased to report that after cutting milk out completely, his tummy is much, much smaller, almost normal I would say.

I really think it's the milk but will be off to the docs if this happens again.