Further Testing And Nhs Prescriptions

[VeggieGal]

Last October I had positive blood results for celiac so i went gluten-free for about 3 weeks before been told by a dietician I had to ingest gluten for a gold standard dx with biopsy. I had an awful time with gluten and then was supposed to have biopsy on 4th jan but unfortunately i couldnt tolerate the procedure even with sedation as I suffer severe anxiety due to a thyroidectomy where my vocal cord got cut in error...(doubt i can claim). Anyway, due to symptoms, blood results and previous ai graves, the consultant dx me as 98% celiac in two letters.

The hospital is now treating me as celiac ie, seeing a dietician, bone density test etc.

Yesterday the hospital took my order for my first nhs prescription of bread, however this morning I had a phonecall saying they now can't give me a prescription as I never had a biopsy and they need to discuss with my consultant about me having other tests.

My questions...

1. What other tests can they do? (i'd previously asked if they'd do a skin biopsy as i had a rash on my scalp for years (its now gone since ive been gluten-free for 7 weeks). They originally said no to my suggestion.

2. If they can only give prescriptions based on biopsy then why look into other tests? (also my consultant agreed that biopsys can be false negatives).

3. It worries me that because the nhs is so concerned about not giving out prescriptions then are they deliberately not testing for potential celiac patients? I feel I shouldve been tested years ago due to symptoms and graves disease (Im sure people would rather have their health than a prescription)...but surely by more testing it would save money long term...thoughts anyone?

4. If ive got to have other tests then obviously I have to go back to eating 'poison' again....so isnt this kind of contradicting themselves, when Ive been told how dangerous even cross contamination is......

I can't understand why they can't take the word of one of their own professionals who put it in writing twice.

Sorry for my long rant but would really appreciate any views on this.

[auzzi]

You would be better off posing your questions to your national Coeliac Society. They will be able to tell you definitely what paperwork/diagnoses you are required to present NHS. 

 

Prescriptions for gluten-free foods are specific to UK - most other countries do not provide them for coeliacs ..