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Could this be coeliacs, something else...

(7 Posts)
BlackInk Tue 20-Dec-16 12:34:40

<<also posted in children's health>>

... or am I worrying about nothing?!

My son is 7 and has had bowel issues for the past 3 years. He has good days (sometimes good weeks) but generally we're talking explosive, VERY windy, splattery, wet and sticky with regular accidents. He tends to be ok at school but the evenings can be terrible. We make sure that he goes every day (on bad days it is multiple times anyway) - he's definitely not constipated.
He gets extremely bloated, but rarely complains of tummy ache. He almost always looks uncomfortable, although will claim not to be.
His general health is pretty good and he is a normal weight and height - although he was a tall and chunky toddler and is now average in height and much slimmer.
He seems very low on energy and very clumsy compared to his peers, and can be extremely emotional and angry at times.
Recently he has also been suffering with mouth ulcers (small white sores) and seems to constantly have a low-grade fever - it's between 37.5 and 38 every evening. I only noticed the ongoing fever as he'd been poorly with a cough and had quite a high temp for several days so I was watching to make sure it was coming back to normal and it never has.
We've been the the drs several times over the years and have always been told it's behavioural or constipation causing the bowel issues - apparently very common.
There's no family history of coeliacs, although we do have type 1 diabetes in the family, which I've heard can be connected.
I just feel so sorry for him, but can't work out whether I'm over-reacting.
Sorry for the mammoth post - thank you if you made it to the end!

Amin141 Wed 21-Dec-16 14:42:20

I'm sorry to hear this about your son. As a nutritionist, what would be recommended would be to take a food diary, and record what your son is eating. You can also track the time-lag between meals and symptoms. This may help the dietitian decide what exactly is going on, and also you decide what foods may be problematic. At least then you can be sure of what is definitely exacerbating symptoms and what isn't. A good app that is built for just this is www.alliapp.com and is recommended by the NHS. Hope it helps!

SerialGoogler Wed 21-Dec-16 17:43:20

It certainly could be but only a doctor can tell you. That said, because my DS is tall I had to badger and badger more than one doctor to get a referral and even then it took a review visit to be believed.
It will start with a blood test but DS is a different child GF. He has colour, he put on weight, he came out of his shell and his confidence grew.
He also had random fevers and I would see pain wash across his face but he would deny any discomfort. I think he was just used to feeling rubbish all the time.
It all started with his poo which made me dread going out of the house because I would have to bring toddler wipes, spare pants and do my best to clean up the loo.
I would say the smell is also the biggest marker. I know instantly when he's had something he shouldn't by the smell when he goes.
I wish I had connected the dots early but I didn't.
Of course it could be something else but it doesn't sound normal or behavioural to me and ultimately you know your child better than anyone. I ended up making a private Paediactric appointment on the basis that the doctor would have to give me more time as I was fobbed of by GP when I told them how worried I was about anemia and was told there was plenty of iron in bread. Oh the irony.
We're back with the NHS now but it has taken 18 months to get to where we are from when I first asked to be taken seriously.
And he gets ill far far less these days. He was the permanently snotty kid and had so much time off with various viruses. Oh and random vomiting. I didn't realise how constantly ill he was until we came out the other side and he's not needed a day off and how little his brother has been ill in comparison. I believe it was all connected to how malnourished he had become and how difficult his body found it to fight bugs because it was too busy fighting itself. Sorry for the ramble but I could have written your OP once and now I have answers.
Whatever the cause it needs identifying. I'll say it again, you know when something isn't right with your children. flowers

Oh and he is IGA deficient which means the screening test can't be accurate and there is a higher prevalence of IGA deficiency in Coeliacs. And it was still an uphill battle!

Frankley Wed 21-Dec-16 18:05:29

My son had vague stomach problems when a child. After he was 'grown up I became anaemic and after tests was diagnosed a coeliac. He then asked two different GP's if he could be tested (family members of coeliacs are recommended to get tested) and they put him off.
He was more forceful with a third GP and was reluctantly tested. The GP was a bit surprised when the test came back positive.
He says he did not realise till he went gluten free that he had never felt really well. Stomach problems sorted.
It can not hurt to get your child tested. Coeliac disease presents in very many ways .

BlackInk Thu 22-Dec-16 10:31:57

Thanks for your help everyone smile
Amin - we've tried linking his symptoms to what he eats in the past, but haven't been able to put our finger on anything. His diet doesn't vary that much and he eats wheat and dairy in similar quantities every day - yet his bowels go through good and bad phases which can last days, weeks or months at a time. He's always worse in the afternoons/evenings.
SerialGoogler - I worry that he's just got used to being uncomfortable too. Smell-wise not too bad here, but the mess and noise is incredible - the whole toilet is splattered. I find it really hard to trust my instincts when it comes to this though because I tend to over-think and worry about things, so put off seeing drs because I presume I'm just being paranoid!
Thanks again, and I will definitely go back to the doctor's soon.
xxx

SerialGoogler Thu 22-Dec-16 16:41:20

Take a photo of the bowl- I treated the consultant to a lovely image explaining this was after we'd flushed! It helped make my point!
And as for over thinking - I too worried I had made it up in my head because he was functioning and getting on with life but those fears were proved unfounded. All you are saying in the first instance is that something isn't right, it's physical not behavioural and you want to move on to the next step in sorting it as your son can't continue as he is. Be firm but nice. You are not asking for a first class trip to the hospital you are asking for doc's help in finding out what is going on with your son.

BlackInk Fri 23-Dec-16 10:37:22

I think I will take a photo of the (pebble-dashed) bowl. I actually tried to video him the other day (the noise from the wind and the force of the pooping is something to behold) but he wouldn't let me!
Thanks SG!

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