Wheat intolerance testing on the NHS? - Thyroid UK

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Wheat intolerance testing on the NHS?

noenergy profile image
6 Replies

Hello, I have always suffered times when my digestive system is giving me lots of trouble. Previously I have came back as not coeliac when I had had the blood tests done. I then paid for a test where an electric pulse was passed through my fingertip. That also came back as non coeliac but with a wheat intolerance (and two other foods) I avoided wheat for 9 months and felt much, much better. Since then I have managed by limiting my wheat intake especially white bread. Since being diagnosed as hypo my problems have got worse. The doctor has agreed to retesting, 4 years since my original test, but says they can only test for coeliac not wheat intolerance. Is this standard?

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noenergy
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6 Replies
Lenny profile image
Lenny

My sister is coeliac and could only be diagnosed by endoscopy as all tests repeatedly came back negative. I had a gastro appointment during the week and have now been referred for an endoscopy to check for coeliac, all my bloods have come back negative as well. The Gastroenterology consultant told me that, occasionally, some people do have negative tests. I suspect I have a problem with gluetin however I'm not sure if it's coeliac as I'm certainly not skinny. I've had a hard time persuading the doctors to continue to test me, probably due to my increasing girth!

If you have a problem with gluetin and want a formal diagnosis you should keep asking for tests. Remember you have to be on a gluetin containing diet to have any positive results.

Good luck x

ChemicalAngel profile image
ChemicalAngel

The electric pulse is really a con. My friend was fed up of stomach problems and decided to go for the testing, to which they said that she was not to touch tomatoes, and if she stays off them she will be fine...... She hates tomatoes and never touches them!!

As far as I was aware, the proper test is with the endoscope, as bloods dont show it up.

Hope you get proper testing sorted soon xx

Ann xx

I had a coeliac test too, although I never had stomach issues - negative as I've avoided bread etc. for years anyway (as it upsets hubby's stomach) - the test does state "provided on a diet with adequate gluten, 2-3% of coeliac poss neg" I think it's likely to be a higher % will be negative. Here's an informative site anyway J

coeliac.org.uk/healthcare-p...

noenergy profile image
noenergy

Thank you for the posts you have sent in. I have started to eat food containing wheat before I go for the blood test- unfortunately this means all my problems have returned but I realise the need for a proper test.

I also wondered whether the electronic testing was a con; however due to being either accurate or my state of mind wanting to believe it had given an answer, my symptoms drastically improved without wheat. Occaasionally if I had eaten something with 'hidden' wheat in I would be ill before finding out the product contained wheat.

A certain make of white bread is definately the worse for me.

By the way I'm certainly not skinny; even less so since an underactive thyoid!

in reply to noenergy

good luck with the test & hope you don't have to 'poison' yourself for too long! J

noenergy profile image
noenergy

Cheers!

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