Is My Daughter A Celiac ?

[debs626]

Hello. My daughter (11) has been ill since June 2006, she started with what I thought was a tummy bug and couldn't seem to shake it of making her lose weight. In mid November she started with very bad tummy pains, high up, worsening after eating. Her stools are very pale looking and of all funny consistency. 3 weeks after this started she became well again and pains went away. During Christmas the pains came back again, she has become very thin, drawn, dark under her eyes, very tired all the time, very itchy rash all over but mainly hands feet knees.

I have been to the doctors with her and have seen 4 doctors, first suspected indigestion and gave her gaviscon, after no improvement I went back to same dr and he sent her for blood test which all came back fine. 2nd said to go home and give paracetamol, 3rd said its just a tummy bug and allergy rash. On my 4th visit I suggested a gluten intolerance and doctor wasn't sure but said to go for blood test to rule out.

celiac disease is in our family.

what I would like to know is, could the symptoms go away and come back ?

I have started her on a gluten free diet but not seen any massive improvement yet but its only been 3 days and I'm not sure if she is getting contaminated or not.

What do I have to look for on food label's ?

is there a UK version of this site ?

any advice would be appreciated. Thanks in advance

[nikki-uk]

Hi Debs, Welcome to the boards!!

I'm in the UK too (London) and my hubby and son are coeliacs.

My son was diagnosed at age 13 - and although he never really had stomach pains he also had pale stools, tiredness with dark rings under the eyes.

Your daughter does sound as if she has alot of coeliac symptoms.

I also think that it is quite possible for the symptoms to wax and wain - as they did in my son and hubby.

Now I notice that you've put your daughter on a gluten-free diet.

Of course it's your choice but do you know that to get tested for coeliac you must be eating gluten??

As it's only been a few days why not ask your GP to run a 'coeliac screen' as she has alot of the symptoms and it is in your family?

OK , -I've just reread your post...are you saying your daughter has had the blood test for coeliac but it came back negative???

Blood tests are NOT always 100% accurate - my husband had a neg blood test for coeliac but a biopsy showed he DID in fact have celiac disease.

Has any doc suggest an endoscopy with biopsies??

I have got alot of useful info from this site and one that I use which is UK based (see link) which is great if you want to know about a particular food.

Open Original Shared Link

Another idea is to contact Coeliac UK who might be able to advise you and also supply a handbook listing thousands of 'safe' gluten-free foods Open Original Shared Link

Feel free to ask any more questions!

Good luck!

[debs626]

Hiya nikki and thanks for your reply.

The first set of blood tests were not for coeliac. We went for coeliac blood test on weds before we started the gluten free diet. After reading some of this forum I'm not sure as to continue with the diet as, like everyone says, it will interfere with any biopsy she will need. I will ask our Dr but I don't think he will know as I think he was clueless about the coeliac disease until I mentioned it. On our last visit to the Dr he said if there were no improvements within 2 weeks that he would refer her to a pediatrician.

Also, don't know how I could fail to mention this, my daughters passing wind is very fowl smelling too .......... at the time of typing this I have all windows open trying to blow through.

As it happens I have not seen my daughter all day as she has been out with relatives but when she got home tonight, she said her tummy pains were a little better, she seemed in better spirits and she had a little colour in her cheeks too, so maybe the gluten-free diet is having an effect

Thanks for the links too nikki, I will go and take a look now.

[nikki-uk]

Debs, I know all about the foul wind!!

Very common symptom in celiac disease!

I should mention that in the UK docs generally prefer a coeliac to be biopsy proven.

After my son had positive bloods for celiac disease I really pushed for an endoscopy appt with a gastro paediatrician as I knew from my hubby that without a biopsy most docs dismiss the fact that they are a coeliac.

Also - without being biopsy proven you generally do not get any follow up care and are NOT entitled to any prescription gluten-free foods ( which believe me helps with the cost of the diet!)

I suggest that once you get your daughters blood results (whether they be positive or negative) you ask for her to have an endoscopy with biopsies - (biopsies can also rule out any other possible causes)

Your daughter would need to be on a high gluten diet for at least 6 weeks BEFORE the endoscopy.

Take care