Coeliac

[annieigma]

Hi,

Went to doc with O.h. today to get results of coeliac test. apparantly the first test they did was negative, but they then did a second test which came back positive. ( on the same blood sample). As o.h. was diagnosed with this disease many years ago, but after a year of gluten free diet seemed to return to normal, the doc at that time advised adding gluten to the diet slowly, which is what o.h. did, and has been eating as normal ever since, but has always been nervy, irritable, never puts on any weight no matter what is eaten etc. Doc said that if you were feeling o.k. then carry on as normal, as gluten diet is not tasty.
Suggestions please,
annie.

[Sqad]

Difficult eh?

All about quality of life.

If his only symptoms are those of nervousness and there is no indication of malabsorption on the blood tests, then personally, I would continue on a normal diet, but of course if he develops deficiency anemias or abdominal pain, bloating etc, then i would return to a gluten free diet.

It is HIS call.

[slaney]

When you say results of tests, do you mean blood tests?
If the blood test is positive, then the diagnosis needs to be confirmed by biopsy (usually done by a gastroenterologist)
If the biopsy is positive then it is important to keep to a gluten-free diet to avoid future complications.

[Sqad]

slaney

\\\\but they then did a second test which came back positive. ( on the same blood sample).\\\

[slaney]

I wondered if many years ago, when it was first diagnosed he had a biopsy.
And yes, things do go back to normal after a gluten free diet, but this is no reason to stop it.

[annieigma]

Yes, there was a biopsy, and it seems it is not needed now as the latest blood testing is 100% correct, plus, the doctor informed us, a bipopsy would cost around £3000 and of course its invasive and unpleasent.

[slaney]

I can't think of any blood test that is 100% accurate:)
Do you live in the UK, as the biopsy is something which should be able to be done on the NHS?
But if the biopsy was positive in the past, he perhaps does not need another one, and if the recent antibody test is positive maybe that is enough.
Usually one does not grow out of Coeliac disease, and has to carry on a gluten-free diet for life.
Some more information on these sites...
http://www.coeliac.org.uk/coeliac-disease/myths-about-coeliac-disease
http://www.nhs.uk/Conditions/Coeliac-disease/Pages/Introduction.aspx

You could perhaps ask for a gastroenterology opinion.

[annieigma]

Hi,
Yes it would be free on the n.h.s, the doctor was pointing out the cost to the government, as everyone in the UK is on a money saving bender.
There is no doubt, I think, that its coeliac, its just the point of should we carry on as normal or would a gluten free diet make o.h. feel that much better? ( dosn't feel bad ill anyway at the moment, and hasn't for many years) just a bit tired and run down.
Annie.

[slaney]

Hi Annie - if the diagnosis of coeliac disease is not in doubt, then your OH should be on a gluten-free diet regardless of how he feels.
If you read through the links I have given you will see that this is necessary to prevent complications. From the NHS site...
"If you have coeliac disease, it is crucial you do not eat any gluten. If you have untreated or undiagnosed coeliac disease and are still eating gluten, several complications can occur"

[annieigma]

thanks slaney,
food for thought, as they say. interesting about complications later. Not so difficult to be gluten free these days, Asda sell gluten free stuff, and a local butcher makes gluten free sausages, just need to be careful about sauces and gravy etc. will try to convince o.h. worth a try.
thank you,
annie.

[slaney]

It's far from easy I know especially in the beginning.
Coeliac UK have much useful information about diet, recipes, local help groups etc - and they do have a helpline.
http://www.coeliac.org.uk/coeliac-disease
Good luck!