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Celiac disease

(4 Posts)
Fifi2406 Sun 22-Sep-13 18:45:12

If you have a toddler with this...Tell me about your toddlers symptoms? What their poo's were like etc how you've managed it and how did you get a diagnosis because my flipping doctors are absolutely useless! angry

freefrommum Tue 24-Sep-13 12:27:21

No toddler experience but didn't want your post to go unanswered. DD was 9 when diagnosed and her only symptoms were chronic tummy pain. Have a look at Coeliac UK's website for advice and maybe give their helpline a call - they're really helpful. Initial diagnosis was via a simple blood test (Ttg) then we had to wait for a biopsy to be carried out in hospital to confirm the diagnosis. There are NICE guidelines on this:

Don't be fobbed off by your GP and whatever you do, don't remove gluten from your child's diet until you've ruled out coeliac disease completely as you need to be eating gluten for at least 6 weeks before the tests for them to be accurate. Good luck.

PrimalLass Tue 24-Sep-13 13:26:22

My 5-year-old has had the blood test and it came back negative. However, I have been told that the hospital we went to does not do a sensitive-enough test.

The GP was great, incidentally, so I am going to go back to him.

Charmingbaker Tue 24-Sep-13 20:41:11

My DS2 was diagnosed at 20 months. He caught a normal tummy bug that had been doing the rounds which seemed to triggered his coeliac gene into overdrive and he was vomitting every over day, lost his appetite, had chronic fatigue, a swollen belly and was losing weight fast. Even with these classic symptoms I had difficulty getting my GPs to see anything was wrong. I kept taking him to GP over a 3 week period and kept being told if symptoms he was fine. I started looking up Dr Google and noticed his symptoms matched coeliac. Told the doctor, doctor gave me an exasperated look and said there was nothing wrong with him. I then lost it in the doctors surgery and said I wasn't leaving til someone took me seriously, they ended up sending me to A&E just to get rid of me. As soon as we got there the triage nurse knew something was wrong with him (he looked like a famine child- you could see his ribs yet his tummy was swollen and tight). The paediatric doctors where great and he was soon diagnosed.
Although he wasn't ill before the vomitting started he did have some classic signs, he had always had very pale smelly poos, was pale and had a bloated tummy. But we are fair skinned and he was chubby so his tummy didn't seem out of place until he lost weight.
Once DS2 was diagnosed I got DS1 tested. GPs again very reluctant to do this and felt it was unnecessary as he had no symptoms yet his test came back positive. He was
14 at the time and we thought a typical lazy teenager. Turned out coeliac had given him a severe vitamin D deficiency. As soon as he went GF he had so much more energy.
If there is any family history of coeliac then NICE guidelines say immediate family members should be tested. Don't be afraid to be pushy with doctors, many know very little about coeliac disease.

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