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Need help as think son has wheat intolerance

(14 Posts)
Ceecee73 Sun 13-Jan-19 08:33:22

Hi, wondering if anyone could give me advice. My 12 year old has been having sickness and upset tummy on and off since November and missing a lot of school. I’ve started a food diary and it looks like it could be wheat but symptoms don’t appear immediately. Been to to docs who just advise to keep food diary going as he wasn’t sure what it could be as said there’s usually a rash with intolerances? Is there anyone been through the same?
Thanks

OP’s posts: |
dementedpixie Sun 13-Jan-19 09:05:35

Maybe should be tested for coeliac disease. Don't give up wheat/ gluten before testing

Ceecee73 Sun 13-Jan-19 09:24:33

Hi the docs have said they wouldn’t test for coeliac disease until ruled out intolerance

OP’s posts: |
dementedpixie Sun 13-Jan-19 09:45:24

How do you rule it out? If you cut it out of his diet then if he subsequently needs coeliac testing he will have to go back to eating it for 6 weeks before they can test

redoval Sun 13-Jan-19 09:51:41

You've been given bad advice I'm afraid. I would go back to your GP and ask for coeliac testing.
Check this link from Coeliac UK

https://www.coeliac.org.uk/coeliac-disease/getting-diagnosed/

Whatever you do don't cut out gluten until you have tested for coeliac disease.

seanceinterrupted Sun 13-Jan-19 20:02:18

My ds has a delayed reaction to wheat - tummy pain, toileting issues, no rashes. Not celiac here but agree that should keep wheat in diet and test first. You can also buy a test at boots to do at home (about 20 pounds) ... as accurate as the gp.

Ceecee73 Sun 13-Jan-19 21:16:29

Hi thanks for all responses do you know what the test from boots is called as I would just do that instead of waiting on doctors

OP’s posts: |
seanceinterrupted Mon 14-Jan-19 06:40:36

I used something like bio card about 2 years ago. I had to order it online then I picked up at my small, local boots . I'd bet it would be more widely available now if you google home celiac test - in fact my nearest amazon country sells it at a quick glance ...

Ceecee73 Mon 14-Jan-19 07:48:53

seanceinterrupted thank you x

OP’s posts: |
grumiosmum Sun 20-Jan-19 17:03:41

OP my son's symptoms were similar & it took 4 years to get coeliac disease diagnosed.

Insist on a referral to a gastroenterologist and get a gastroscopy done.

I would not rely on a test you can get over the counter.

TalbotAMan Sun 20-Jan-19 21:47:10

The preliminary screening for coeliac is a blood test, which should be no real problem for a 12 year old. The blood test can show false results, so if it is positive then they are likely to do an endoscopy.

As someone who has had symptoms since childhood, which were attributed to IBS, I was diagnosed at 60(!) by a doctor who was investigating the nerve damage which resulted from eating gluten and was the first of the many I've seen to do it, I'd recommend you insist on the blood test at the very least.

Because on diagnosis the recommendation is that first degree relatives (parents, siblings, children) be tested, my two DC had the blood tests at 13 and 11 and weren't particularly bothered (even when the nurse who was supposed to have been trained to take children's blood made a complete mess of it).

anniehm Sun 20-Jan-19 22:16:05

I would simply cut out wheat for a week and see - no need for expensive substitutes just stick to rice and potatoes etc and if he seems ok gradually reintroduce - I can tolerate spelt fine, shop wholemeal ok but shop made mass produced white gives me really bad bloating and pain. Homemade bread and sour dough is ok in small amounts.

Beware of testing kits, not very reliable I read

BCBG Wed 23-Jan-19 16:03:37

Complete rubbish re rash with coeliac disease I'm afraid. You can have no obvious symptoms (like me) or complete gastric collapse (my mum, my niece). The symptoms you describe could be a number of things though, so a detailed food diary is essential. Unfortunately to diagnose coeliac disease with a blood test your DS needs to have been eating wheat - preferably bread - in at leat two meals a day, in quantity between two and for slices or the equivalent per day for six weeks before testing. You could also track dairy as it is a widespread intolerance that produces the symptoms you describe - and dairy products are in so many foods that exposure is widespread. Lactose intolerance is also an early sign of coeliac disease in many kids. Hope you get it sorted soon.

Ceecee73 Wed 23-Jan-19 17:49:00

Thanks for all advice. I will continue with food diary in the meantime x

OP’s posts: |

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