5yo DS poss coeliac disease what do we do?

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DP and I are becoming increasingly worried that ds might have coeliac as he has a lot of the symptoms including a v.distended abdomen, wasted arms and legs, pale, tired, problems with his bowel for some years now plus height & weight v.v.low for his age.

We had previously seen paed about bowel (chronic constipation so he's on movicol) but nothing ever mentioned about coeliac, they've never done a blood test. Then they picked up at preschool check in Dec that he had dropped several % in height and was on 2nd, plus has now lost several pounds in weeks.

DP went to our new GP who promptly referred him to Endocrinologist and we're also getting a referral to a 'poo nurse'. But when/if will he be tested for coeliac, should we be pushing for gp to do the test, she seemed against it last time but I gather it's fairly straightforward? We thought we just had a major problem with soiling as it's been over 2 years now, but am starting to think it's not that at all and something's been missed. V frustrated as he's seen a paed, attended a constipation clinic (due again next week) and school nurse also getting involved but he's no better, just getting worse (physically & behaviourally).

He sounds as if he needs a blood test for coeliac and sooner rather than later.

My dd was always very very pale, with a bloated toddler tummy, then became very tired, lacking energy etc in her first year at school and was tested for coeliac and positive. It was only picked up because her younger sister was the same height and weight and shoes size tho 2 yrs younger. The HV measured her, she was on the 0.4 centile having been a 10 lb baby!! HV thought it might be a growth hormone problem - but the GP she sent us to has a relative with coeliac so is more clued up than most, blood test positive plus VERY anaemic, biopsy confirmed coelaic.

Had previously seen another GP when DD was 2 concerend about excessive and very foul nappies - there came a point each nappy would be dirty to overflowing, several times a day. we were fobbed off then and became used to her bowel habits...in all other ways she was a clever sociable child, eating well, and we had no concerns.

You might need to push and push to get a referral to a dietitian, or for a blood test. Coeliac uk are REALLY helpful, they can advise you what to ask for/do if you are getting nowhere with Gp - might you get a second opinion with another GP or change surgeries?

Sorry this is waffly am very tired, what i am trying to say is it is much more common and underdiagnosed than you might think, and most GPs are really NOT experts on this issue.

Hope you get some answers and you DS improves - feel free to ask me any Qs - DD is now 9 and so I AM an expert, LOL!!

you might also get a temporary improvement if you remove all dairy, as the damage caused by coeliac often leads to a temporary inability to digest dairy too

Please also be aware of type 1 diabetes - if he starts to be very thirsty and wee a lot, straight to the dr's. We thought ds2 was coeliac like his dad - he was wasting away, but the tests came back clear. It was type one diabetes which presented in its full 'glory' a few months later.

All the best.

thanks, all. Still trying to get an appt with my gp to ask for a blood test, sounds like I need to ask them to check if he's anaemic too. No signs of diabetes that I've noticed though. Loobeylou, why do you think it's the first year of school that it showed up for your dd? Sounds so like ds1. He's ill again for 3rd time in a month.Doesn't want to do anything.

He's seeing a dietician tomorrow about the constipation but it wasn't v.helpful last time.

OP - to answer your Q about "why in 1st yr of school....."

I think it was a combination of many things -

the longer days/busy week, which tires out LOs anyway, no more weekday lie ins or occasional afternoon naps

and picking up all sorts of bugs/getting run down

and having bread based lunches EVERY day

and just that it was when her gut had become SO damaged and she SO anaemic, it began to be noticable.

I still kick myself that we did not know sooner. looking back at photos now it is obvious she looks so pale compared to now but then it was what we were used to, there was no noticable decline in her appearance, we thought she was just very fair skinned

I second the comment about diabetes too, DD friend has SUDDENLY, since Christmas, been diagnosed diabetic, slight weight loss over the autumn, then SUDDENLY drinking and weeing lots. Family history so went straight to Dr who said another 48hrs & she could have been in a coma!

Your Little boy is not right and I hope you get some answers so he gets better

Oh, and if you do need to change his diet then try posting on the allergies board too, lots of good advice on there

AQ- this is from the coeliac uk site

"What are the symptoms?

The symptoms of coeliac disease vary from person to person and can range from very mild to severe. Not all effects of coeliac disease are related to the gut.

Possible symptoms include:

bloating, abdominal pain, nausea, diarrhoea, excessive wind, heartburn, indigestion, constipation
any combination of iron, vitamin B12 or folic acid deficiency
tiredness, headaches
weight loss (but not in all cases)
recurrent mouth ulcers
hair loss (alopecia)
skin rash (dermatitis herpetiformis- 'DH')
defective tooth enamel
osteoporosis
depression
infertility
recurrent miscarriages
joint or bone pain
neurological (nerve) problems such as ataxia (poor muscle co-ordination) and neuropathy (numbness and tingling in the hands and feet).
Some symptoms may be confused with irritable bowel syndrome (IBS) or wheat intolerance, while others may be put down to stress, or even getting older.

Contrary to popular belief, you don't need to be underweight or have lost weight to have coeliac disease: most people are of normal weight or even overweight at diagnosis.

In babies, gut symptoms may develop after weaning onto gluten cereals.

Other symptoms in young children include muscle wasting in the arms and legs, a bloated tummy and irritability. Some infants may gradually fail to gain weight, or lose weight after previously growing well. Symptoms in older children vary as they do in adults, and can include poor growth, short stature, anaemia and recurrent mouth ulcers.

Our leaflet describing how to get tested for coeliac disease can be downloaded here.

If you think you or your child has coeliac disease, it is essential to continue eating gluten and speak to your/their doctor for advice. "

Loobey

thanks, loobeylou, I looked at that leaflet last night (and cried because he has so many of the symptoms). Rang dr today and she said she'd really rather leave the blood test for the Endocrinologist she's referred us to = we're seeing him next week and she's assured us he will test for coeliac so I feel better about it although not all the blood tests he's going to have.

He's lost a kilo in 2 months, dropped a percentile in weight now so on about the 5th for weight. If I see any evidence he's drinking and weeing more shall rush to the dr, thanks for the warning.

Are siblings likely to have it too? I was wondering if he's positive whether I shall have to be careful weaning the dt's onto gluten.