Non coeliac gluten sensitivity, is the only diagnose via food elimination diet?

[thecatstrousers]

...or are there others tests? I have failed Coeliac blood test, which was no surprise really considering that by the time I took the test I had already figured out that gluten was causing me massive problems and couldn't bare to go back to the old way of living even for a few weeks (tmi, but neither did I have the time, with small DC I need my bathroom visits to be very short and sweet).

I'm off to see the doctor again to see if there is a test for NCGS, or if an endoscopy procedure would show up any historic damage from eating gluten. I'm asking here for advice because the doctors that I have seen over the years have not always been very informed. I was waived away with IBS about 20 years ago, went home, researched and realised that it wasn't that at all. Then followed 20 years of elimination diets and research.

Any information would be helpful in case I have missed anything.

You still need to go back on gluten to have the endoscopy for coeliacs.

Did you have your IgA level checked? Low IgA gives false negatives for coeliacs (but not necessarily positive for coeliacs)

I will ask that when I go back bedtimestories , I would be surprised as it wasn't mentioned at the time.

Rather than go back to eating gluten I will have to see what else I can do to move forward, the problem is I get fatigue and brain fog (as well as digestive issues) once I'm eating gluten and that makes it far harder for me to speak up and state my case to the doctor.

I've also read that work is being done to find a test for celiac that can be done without the need to re-introduce gluten to the diet. Perhaps I may just have to wait.

Non IgE mediated allergy (ie slow allergic response, non coeliac) is only diagnosable by removal from diet for around 4 weeks (gold standard would then be reintroduction to check whether symptoms recur).

Sounds as if you don't want to go back on gluten to get a reliable coeliac result (and the bloods are frequently false negative anyway, so you'd only be certain with endoscopy and biopsy).

So - basically if you don't want to go that route, and you know you're feeling better off the gluten, just stay off the stuff!

I tested negative although I was eating gluten. I now know I have EDS which probably explains why I can't eat gluten. The dr said that I could eat gluten again at a later time and have another test but would it change how I ate? To be honest I can't imagine eating gluten again. Even tiny traces make me feel ill so I am quite obsessive about checking food. It is annoying that some people think that coeliac is the only legitimate reason to exclude gluten but I figure that it is my health and my choice.

As far as I'm aware the only way (if you are lucky and have a good doctor) to get a diagnosis of NCGS would be through an elimination diet and other factors being ruled out.
A GP recently said I probably had an issue with gluten after years of food diaries and obvious reactions, but she wouldn't formally diagnose anything as she said there was no test that could be done, she just told me not to eat it if I feel better without it, to be fair she did admit that intolerances do exist and there was growing evidence for it(she was one of the slightly better GP's Ive seen over the years)
The process is very hard, they don't seem to take allergies or intolerances very seriously even though they obviously exist. Which makes it all the harder to get family and friends to understand, which is what I struggle with the most.

I've resigned myself to the fact that I will never have a formal diagnosis but will not be eating it again. Ive recently read its very common for the blood tests for coeliac to be inaccurate, which makes me wonder whether I could actually have the disease, but I will never know unless they make a tests that can detect it without having to eat gluten for 6weeks and deliberately make yourself very sick!

Eliminating is the only way to confirm a non-ige allergy (what used to be called an intolerance). Coeliac UK have a very helpful website and a helpline which anyone can call - number on their website.

Thank you for your replies. My doctor was good, I had been tested for IgA levels. Not surprisingly she is more than happy for me to stop eating gluten.

I also called the helpline, thanks for that suggestion, they were very helpful, specially around the subject of getting freinds and family to understand Jessie06 . I was brought up not to make a fuss or to put people out on my behalf, I often wouldn't say anything and then feel ill. I think confidence is a large part of the solution, and facts help too. I would also recomend giving them a call.