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Allergies and intolerances

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Could it be Coeliac disease?

2 replies

ChilliJo · 11/12/2013 13:26

DS is 6. He's incredibly skinny, he's very pale but he is very rarely unwell and has endless energy, although he will sit and concentrate at school and has no behaviour issues.

For the past couple of years at least, he's had very pale poo and it's often very 'crumbly' in texture. For the past few months he's been suffering badly with an extreme bloated stomach. Sometimes he complains his stomach hurts (this seems to go in phases where it'll be an issue for days in a row and then he won't say anything for a week or two) and he'll be back and forth to the toilet but I think that's more a case of trying something to make it better.

A few weeks back when he was really suffering with stomach pain (and he looked full-term pregnant with twins) he ended up being sick. It was 6 hours after he'd eaten his dinner and his sick (TMI) was exactly as his food had been going down, it was completely undigested and just smelt of what it was, not that biley vomit smell at all.

My only thought as to what could be causing this is wheat/gluten but that's pure guess work based on no medical knowledge whatsoever. I haven't cut wheat out of his diet but I have perhaps been serving up wheat free dinners (potatoes as the carb element) most nights and he seems to not have had so much stomach pain at bedtime. Coincidence perhaps?

Anyway, I will be taking him to the GP in the New Year (we're going away for a few weeks soon) but just wondered whether those with experience of either gluten/wheat intolerance or Coeliac have experienced similar? I know there are so many symptoms and testing is the only real way to diagnose. But could it be? Do you think he'd get tested based on his symptoms? What do the tests involve? Is there anything I should be asking for when I see the GP?

Thanks for any responses.

OP posts:
Charmingbaker · 11/12/2013 13:53

It could be coeliac, but even if it's not you need to find out what is causing these symptoms in your DS.
For coeliac testing your GP would initially order a blood test (in my area children have blood tests at the hospital). If this were to come back with raised antibodies your DS would then be referred to a peadiatric gastro team who would do further blood tests to check if your DS has the coeliac gene and also test his antibody levels again. What happens next depends on your results, if they are high enough they can be diagnosed on bloods alone, or the gastro team may want to carry out an endoscopy to confirm diagnosis ( I have 2 coeliac DCs, one was diagnosed on just bloods, one had to have an endoscopy as well).
The most important thing at the moment is that your DS continues to eat gluten until diagnosis is confirmed.
GPs are all different, I had a difficult time getting both my DCs tested, but everyone's experience is different. Write down all your concerns so you know you have not missed anything. Do you have any relatives with CD? If so it shows a family history. Do you still have his red book? If so check his weight and height centimes, if he has dropped down a band then doctors do tend to listen more. If all else fails be stubborn.
Even if the tests come back negative I would still push for a peadiatric referral to find out what is causing the symptoms. Testing antibody levels is not always an accurate indicator of coeliacs, you can get false negatives. Or there could be other reasons for these symptoms, keep pushing until you get answers.

tkband3 · 13/12/2013 19:51

It sounds like it could be - my eldest DD suffered similar symptoms before diagnosis. Vomiting every few days, veering from severe constipation to chronic diarrhoea; on top of this, she had no energy whatsoever despite sleeping all night and napping for a couple of hours each day. She also didn't gain any weight for a year. It took me ages to get the doctors to take any notice of the problem, but this was a few years ago and I think awareness of coeliac is much better amongst GPs now. I think based on the symptoms you describe, your GP should refer your DS for blood tests.

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