Talk

Advanced search

Here are some suggested organisations that offer expert advice on SN.

Daughter recently diagnosed with Celiacs Disease

(5 Posts)
NuttyMummy3 Fri 10-Jun-11 14:52:36

She's 9 yrs old and has been suffering with urine infections for 5 yrs and constipation and soiling since Dec last year. She's recently come back as positive for coeliacs via blood test. Just wondered how many of you have kids with this and your experiences from pre-diagnosis to post-diagnosis.

TIA

feynman Fri 10-Jun-11 17:44:08

Hi nutty mummy, my son doesn't have coeliacs but does have severe wheat allergies which is a different thing but amounts to the same in terms of avoidance of wheat etc. I believe that there is quite a difference if you avoid wheat but would advise you post on the allergies board as I know there people with (or who have children with) coeliacs on there.

moosemama Fri 10-Jun-11 18:30:34

Same here, my ds tested negative for coeliacs, but we were advised to remove gluten from his diet as a result of keeping a food and digestive diary. He suffered from diarrhoea from weaning and wasn't night dry until we took him off gluten at the age of 7.5, then started night wetting again when we had to put him back on it for three months prior to his blood test.

General feeling was that his blood test could very possibly have been wrong, as a result of him having a d&v virus that involved him barely eating anything and no gluten whatsoever for 10 days ending just a few days before the test, but as he'd already had bloods taken twice (they lost the first sample hmm angry) we didn't want to put him through it all again.

Are you going to have the villi sampling for your dd?

As feynman said, the allergies board is probably your best bet for more coeliac specific advice, there are quite a few adults with coeliac and parents of children who have coeliacs over there.

One thing I would say - is definitely go sign up on the Juvela website, as you get a massive box of free gluten-free samples, worth well over £50. Coeliac UK is also really useful for information and support.

nightcat Fri 10-Jun-11 20:54:29

I often go on celiac.com forum, people there are awesomely knowledgeable. My ds has improved dramatically after removing wheat, definitely worth the hassle of home-cooking.

Pigglesworth Sat 11-Jun-11 13:36:08

As someone with similar issues I would like to hugely recommend the following book:

www.amazon.com/Breaking-Vicious-Cycle-Intestinal-Through/dp/0969276818

It would be especially helpful to read all the reviews/ testimonies.

Other helpful sites:

www.breakingtheviciouscycle.info/

www.pecanbread.com/

Join the discussion

Registering is free, easy, and means you can join in the discussion, watch threads, get discounts, win prizes and lots more.

Register now »

Already registered? Log in with: