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Does this sound like coeliac, or something else...

(8 Posts)
BlackInk Tue 20-Dec-16 12:24:42

... 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!

BarbarianMum Tue 20-Dec-16 13:33:58

He
Yes it could well be, and if not it could be another condition like Crohns. Go to your doctor and ask for a blood test for coeliacs (keep feeding gluten before this) - get them to check iron levels and inflammatory markers whilst they are at it too.

If coeliac test comes back negative do not give up - get them to refer him to a gastroenterologist for further tests. They will if you refuse to take no for an answer.

BlackInk Tue 20-Dec-16 14:21:05

Thanks BarbarianMum. I just feel as though there's something wrong, but I don't trust myself as I tend to be anxious about my children's health.

I last took him to the drs about his bowels about a month ago. The dr said something about testing for coeliacs but said "it would come back negative" (because he's not underweight) and to try "toileting him at school".

Was there anything in particular from my OP that made you think coeliacs is a possibility? I obviously don't want it to be that, but I'm starting to really worry about him.

I'll brave it and go back to the doctors!

BarbarianMum Tue 20-Dec-16 14:53:14

<<The dr said something about testing for coeliacs but said "it would come back negative" (because he's not underweight)>>

^And this is why you will likely end up needing a gastroenterologist to find out what is going on. I have coeliacs (now under control) and quite bad (at times) crohns and I'm obese. My blood test for coeliacs was negative, too (but "luckily" by that point I was so ill they proceeded with the biopsy/endoscopy/colonoscopy anyway. Much better to be investigated before things get acute.

BarbarianMum Tue 20-Dec-16 14:55:33

Oh and obviously it might be neither crohn nor coeliacs (other options re available) but it needs investigating.

carries Tue 20-Dec-16 15:02:00

My Dd2 was diagnosed with coeliacs in Oct after nobody really thinking it was. Has had Bowel issues since she was 2 (now 9). Not underweight either but terrible bowels, bloated, tired, irritable and itchy skin. I was surprised and the paediatrician was just doing the test to rule it out. Bloods came back positive she then had a biopsy to confirm and she has rip roaring coeliacs!! So push for a blood test but keep him on a high gluten diet so you don't get a false negative.

All the best.

HOHOHOvariesBeforeBrovaries Tue 20-Dec-16 15:03:02

It's definitely worth checking out, and don't listen to doctors who say "it'll come back negative because he isn't underweight". It caused weight loss in me but I know it doesn't for lots of people.

A check for Crohns might be worthwhile as you mention the mouth ulcers; I believe they're more prevalent in Crohns than they are in coeliac. It's a good sign that he's generally in good health as my immune system gets badly affected if I get glutened, but it could be that his system is used to it by this point. Low energy levels could definitely be coeliac.

One thing that did jump out at me is the clumsiness you mentioned; is he hypermobile? I'm just thinking that Joint Hypermobility Syndrome and Ehlers Danlos both cause hypermobility (causing clumsiness), fatigue, lots of tummy problems etc.

BlackInk Tue 20-Dec-16 15:29:41

Thanks everyone.
HoHoHo - He's not hypermobile as far as I know, but I've noticed since he started school how clumsy and slow-moving he is. His teacher said this year that he "shambles" instead of running but didn't flag it as a concern, more as a quirk smile
I just had a quick read about Ehlers Danlos on the NHS site and it mentioned dizziness - my son has a real problem with heights and climbing (struggles to walk along a low wall).
Having said all this though he's a lovely little boy, doing really well at school and does sometimes have spurts of high energy. Noone aprt from em has expressed any concerns!

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