Help with figuring out what is wrong with ds - fatigue, recurrent stomach issues, etc.

[Buttonlamp]

DS(9) has, since he was 1, has had recurring bouts of illness. As a baby, he was tired, washed-out and had foul nappies. With a paediatrician's help we worked out that he was milk and gluten intolerant. As an older child he experiences fatigue, is small for his age (about a year behind his average-sized peers) and has recurring bouts of diarrhoea and/or sickness. Unless he's eaten something he really shouldn't (when it comes straight back up again - last summer's Magnum ice cream will stay in my memory forever) his sickness involves nothing of substance - just wretching and a bit of mucous, but he really feels sick and says his tummy feels 'big' and 'like there's a knot in it.'

We did think he had outgrown the wheat intolerance but have more recently realised that it's more likely build-up: he can eat it for a while with no visible effects, but eventually problems will start again and it's as if his system has been overwhelmed. We took him right off gluten at that point. He misses a lot of school, school trips, fun outings, football training...the list goes on, so we thought he'd probably be better off right off the gluten. I do make sure he has a balanced, healthy diet. He eats well and is not a picky eater.

He saw a paediatrician again last year, who tested him for coeliac disease. He was eating wheat at that point. The blood tests came back with zero coeliac antibodies. The GP was so baffled by this that she tested him again and, again, zero. Both coeliac and gluten intolerance run in my family. We concluded that it must be gluten intolerance.

He's also hypermobile (as diagnosed by 'it's really obvious on him' and a podiatrist) but neither the GP nor the paediatrician will entertain the idea of that being an actual condition, so I've got nowhere on that score. I do wonder if his other problems are related to that.

Just recently he's started falling over nothing. I do this and have done since my teens. I am also hypermobile and have numerous other health conditions, all autoimmune ones. He seems to do this only when unwell with his mysterious illness, so I'm thinking it's either hypermobility and fatigue or gluten ataxia. (I don't know exactly what my random falls are due to, either.) Unlike me, he normally has good coordination, is good at sports (when he's well enough) and falling over is really out of character for him.

I know I sound like we make up a lot of his treatment as we go, but it has been really, really hard to get help from the GP. To get the most recent paediatrician referral (and he had been really ill for about a year - well in between, but not really well by your average 9 yo's standards) I had to go to the GP so many times, make so many phone calls, to so many different departments and, in desperation, cry at them.

Having read all that, if you can offer any suggestions or advice, I'd be really grateful. I'm at my wits end, really. I want more of my occasionally crazy, energetic boy and less of having to watch him suffer.

[MissAmandaJones]

Go back to your gp. Tell them enough is enough. You want a referral back to either paeds or gastro. I remember faffing with our gp for a year who simply just didn't know enough info about allergies until I said I wanted a referral. It's awful when your children are unwell and you want desperately to help them, it's like banging your head against a brick wall sometimes.

[bellbottomedtear]

Have they tested your thyroid? If they have done normal thyroid check ask for a tpo blood test

[Oly5]

You need to demand a referral back to a paediatrician with expertise in gastro issues. Say you have been waiting long enough and you're not happy to deal with GPs anymore.
If they refuse I would say you are going to start a complaints procedure.
Once you get past GPs, paeds can be brilliant. But getting past the GPs can be hard

[Addictedtohotbaths1]

I have gluten and wheat intolerance and Hypermobility and I've just been diagnosed with Ehlers Danlos Hypermobility. Clumsiness is another sign. Might be worth you reading up on it to see if it makes sense.

GP was very condescending and only gave me a referral because I was going private. You might look to go private if you can afford to. Look at the Hypermobility unit at St John and St Elizabeth in London.

Hope you get some progress, it's such a shame for him to be suffering and missing out on things.

[Addictedtohotbaths1]

That was meant to say gluten and dairy..

[Buttonlamp]

Thanks everyone. Going to see the GP on Monday. I will let you know how it goes.

[Buttonlamp]

GP was good. She referred him to the paediatrician and to a dietician. She's asking the paediatrician to investigate the possibility of joint Hypermobility Syndrome.

[NicknameUsed]

I was wondering about Ehlers Danlos as well.

[ipsogenix]

My ds has very similar problems and had just been referred to a pediatrician too. I' be interested to hear what you find. We had seen ENT and Allergist privately but an NHS pediatrician is new for us.

[cestlavielife]

If he was eating very little gluten then might have tested negative for coeliac but could still be coeliac...

Is he misting school ?