Should I go gluten free or am I just grasping at straws?

[awaywego1]

So I've had 15 years of chronic fatigue (diagnosed with ME). I've also got ibs-terrible bloating regularly with intermittent cramps and diaroeahh. In the last year I've also developed some odd neuro problems-lots of neuropathic pain, blurred vision, difficulty word finding.
Whatever's wring with me is ruining my life. I constantly feel 'ill' exhausted and not quite with it. All tests are generally normal.
I've got low vit d which is being treated.
I had a neurologist appt yesterday and e mentioned non-cealic gluten intolerance as a cause of unexplained neuro problems.
I've had a AGA test done. But I've had this in the past and its been negative-I also had an endoscopy which was negative. So I suspect that the test and most likely the MRI will come back negative.
So my question is should I just give gluten free a go anyway or is it pointless? How common are false negatives?
Sorry this is so long, but id appreciate any suggestions :)

I had chronic fatigue and ibs bloating/cramp/runs problems for years, but not the neuro pain you are experiencing. I went for a electronic allergy test and the chap said I was overrun with sugar hungry candida in my gut and a wheat intolerance.

I had to clean out my diet, no sugar and nothing fermented for 3 months and it was really hard, but afterwards I felt so much better.

I can now manage my wheat intolerance really well, but I can also feel the after effects of a baguette/pizza! I feel low and depressed, my ibs comes back with a force and I lose energy very quickly.

I'll be honest, it doesn't seem like you have much to lose by trying!

I have never felt better since I cut out the wheat, so even if it only alleviates your symptoms, then its worth a shot.

You can buy so much gluten free stuff now, it makes it a lot easier!

Yes it's absolutely no harm in trying it.

Thanks Pig! That's helpful-glad it helped you! I'm sure there is no harm in trying-I guess I've resisted it because I don't want to get obsessed with 'shopping for health' and try to just 'accept' how things are. I should also mention I have asthma and persistent hives so even if it doesn't help with the other stuff it could well help with those things.

Give it a go, I try not to be too over the top enthusiastic about it, but it is difficult because it made such a big difference in my life.

My health chap explained it to me like this...I was eating wheat cereal, sandwich for lunch and pasta for tea. He said that before modern farming techniques, wheat was harvested, got used up and then our bodies recovered whilst we ate other things until the next harvest came along. We just aren't used to having it all the time. Plus modern mass baking methods somehow increase the power of the gluten (but that is a bit lost on me)

I think there is a thread below about where to get good gluten free food from and most supermarkets have a range now. Perhaps spend a few hours thinking about your meals, then stocking up and ....away you go! ahem

Have you definitely had an endoscopy and biopsy to test for coeliac disease? The Ttg blood test can have false negatives but the biopsy is considered the 'gold standard' so if you haven't had this yet then I'd push for a referral to gastro specialist and NOT go gluten free until you've had a biopsy. This is very important as you can't be tested unless you have been eating gluten regularly for at least 6 weeks.

However, if you have already had a biopsy and it was negative then I see no reason not to try going gluten free. I believe that most of us would feel better if we ate a lot less wheat, we're simply not designed to consume the amount we do (or dairy for that matter).

I see no harm in going wheat free but make sure you not going short on b vitamins as that will make you tired..you also need to make sure you having a balanced diet..when wheat gluten free..no harm in trying this provided you sensible..

Thanks that's all really helpful. I'm not 100% sure on the biopsy but what the neurologist was suggesting wouldn't show up as damage in the gut anyway I don't believe-its essentially cealic in the brain or 'gluten ataxia'.
Good advice on the b vitamins ill get a supplement. I'm going to start cutting down now with a view to starting after Xmas I think.

Please get tested for coeliac (if you haven't already). Although some GP's disagree that it's a symptom, my DH gets neuro problems when he's been glutened. He gets the difficulty word finding that you mentioned, has problems concentrating, very tired, irritable, etc. He was diagnosed with mild depression a couple of years before his coeliac diagnosis and we now believe that this was caused by the coeliac disease. If you have coeliac disease, you may be able to get gluten free food on prescription if you have a proper diagnosis (depending on your area). If you cut out gluten before a test you will get a negative test anyway.

2madboys thanks I have been tested but the test was negative.
I saw my GP today who was lovely, she was totally on board with the idea and felt that a false negative test was plausible. Spoke to DP and friends who feel it would totally make sense of all my symptoms and have been very enthusiastic..So I'm going to go for it, have cut down the past few days and will de gluten my kitchen and start properly on Monday. Eek.