To just give up gluten?

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I was diagnosed with IBS at 19 I’m now in my 30’s and have tested negative for celiacs. I have stomach pain every single day, I bloat by around 5 inches each day and I’m never not in pain or uncomfortable, my joints hurt, I’m constantly exhausted, I could quite easily just not move all day and collapse in a heap. I’m desperate to find a solution and have thought maybe just giving up gluten may help, my GP said although tests were negative I could still be intolerant. I have had full bloods done, my iron is fine, thyroid is fine, I do take medication for depression and anxiety which has worked wonders but the physical issues are still there. Has anyone else experienced similar or has given up gluten and found positive results?

It might not be gluten intolerance. It could be something else. You could try reducing the amount of wheat you eat to see if it makes a difference.

Gluten was a suggestion by my doctor as causing my abdominal pain. I gave it up for 2 months and then had some toast. I though 'hey this is ok' but 3 hours later I was in crippling pain, eyes streaming, headache the lot.

So I haven't eaten it since.

My pain has gone from daily 8-9 [sometimes 10 and unable to stand] to about a 3-5...after the toast it went back up to 8. It is coming down ever so slowly but I don't need a diagnosis to know that something is amiss.

It's worth a try, but it could be something different entirely. I tried cutting out gluten and it ended up worse for me because my actual issue was nightshade veg and a lot of gluten free breads etc. contain potato flour. Luckily I managed to work it out because nightshades had always hurt my mouth!

Cut out gluten and see if it helps. It's not that difficult (I'm celiac so it's worse than an intolerance but there's a wide variety of gf alternatives available). My main struggle is going out for meals (I generally don't). If cutting out gluten doesn't help then you can tick that one off and look at your diet again.

I know several people who have given up gluten and felt a lot better for it, gluten intolerance of varying levels is quite common I think.

Yes it helped me. I cut out bread and pasta and the bloating and constipation cleared up. I also had to cut out fruit, chocolate, alcohol, have to only have small amounts of onions and garlic (can’t cope with giving them up entirely)
I avoid the gluten free bread but have started trying some of the pasta. I cook everything from scratch as I love cooking and can control what’s in it. It can be a pain in the arse if you’re out and about and haven’t planned lunch as everywhere is so based around bread for lunch

Generally I feel loads lighter and less sluggish, I’ve been cutting out as much processed food as possible as well. Still having stomach pains but the GP has just put it down to stress and IBS as all the tests have been clear. It’s not but I don’t have the energy to keep fighting.

If your other things like iron are fine, it doesn't sound like a false negative on the coeliac test, which can happen. But there are other intolerances. My son is intolerant to FODMAPs, while I'm coeliac, so we went the distance making sure it wasn't that as his chance is higher.

FODMAPs are basically sugars that exist in fruits, vegetables, grains, milk, etc. They're everywhere. It includes cereals containing gluten, lactose, soya, onions, garlic, peas, legumes, pulses, apples, stone fruit, etc, etc. I could go on. But removing those from his diet means he's now healthy, happy and free from pain and other IBS symptoms.

So I'd recommend getting Prof John Hunter's book Irritable Bowel Solutions, which walks you through an exclusion diet to work out what may be causing issues, with a full list of foods to test, explains the FODMAP thing better than I can in a short post (basically, the sugars are fermentable and for those affected they are fermented in the gut instead of being properly processed, hence wind and pain etc) and give you a place to start finding out what works for you. It's worth every penny I've spent replacing the book when friends have borrowed it and not returned it :)

There is hope in sight, and that book is the best resource I've ever seen to help you get there

Yep my daughter.
She was struggling with awful , constant fatigue- lying in bed until 3-4 pm unless I insisted she got up (I know teenagers like lie ins but this was extreme) didn’t want to do anything or go anywhere.
She was in awful pain most of the time in all her joints - especially her knees and hips and although she was (and still is ) very slim her tummy would often bloat up.
This started when she was 9 and after lots of tests and referrals to different hospital departments over the next three years and no answer other than her being prescribed ibruprofen three times a day every day for the pain and another medication to prevent the ibruprofen damaging her stomach I did my own research and found a possible link to a gluten intolerance.
She gave up gluten two years ago now and the difference was amazing! Almost immediately her pain eased (she does still struggle occasionally but it is just occasionally and probably caused by her walking differently due to the pain which has affected her joints - we are waiting for physio to help with this)
Her stomach doesn’t bloat unless it it the time of the month.
The most amazing change is in her mood, she is much more active, lie ins are until 12 at the latest and she looks and feels so much happier in herself.
If she does eat anything containing gluten (if she hasn’t read the food label properly or she was given the wrong dish in a restaurant when we were on holiday last year ) she feels awful - d&v, headaches, joint pain etc.
It is worth trying, the doctors thought I was being silly cutting it out of her diet and they wouldn’t test her because they didn’t think there was a link but have since agreed that it is most likely that. If we wanted her to have the intolerance tests now we would either have to introduce gluten for three months before the test or have an endoscopy.

Have you tried the low FODMAP diet?

The idea is that you cut out all the possible causes and then reintroduce to work out which things cause you problems.

I'm in the first phase, where I'm not eating any potential triggers and my IBS is completely gone.

In the next couple of weeks I'll be slowly reintroducing things to see what I can cope with.

Ideally, I'll work out what needs to be completely avoided, what I can eat as much as I want, and what I need to keep to small amounts.

I second the low fodmap diet. I'm not great at sticking to it but when I do I feel much better.

I was the same and I've also tested negative for celiacs but years of suffering and I finally gave gluten free a chance. Although I'm still struggling with some health issues a lot have improved dramatically. For me the biggest change was my brain fog and seizures have reduced. I'm also 90% lactose and nightshade free, I sneak in chocolate and tomato sauce but I really feel ill when I eat gluten now. There are a few members of my family with celiacs and a few without that have gone gluten free as they say it has benefited them. I hope if you decided to give it a go it works for you.

A friend of mine is intolerant to something else in wheat, not gluten but not as well known (sorry to be vague, not sure what it is). She is now gluten-free because that was the only way she could avoid the thing that actually bothers her iyswim? You could try just giving up wheat to see if that helps.

Addenbrookes Hospital exclusion diet, list of what you need to cut out and order of reintroduction

Have you been tested for IBD with a fecal calprotection test? IBS can mirror the symptoms but joint pain is more typical for IBD.
It certainly wouldn’t hurt to cut out gluten, there’s many GF products on the market now. I hVe crohns and whilst I’m not allergic to gluten I’m certainly very sensitive to it .

I cut out dairy and wheat and felt much better - now I have goat, sheep or vegan cheese/yoghurt and non dairy milk and, whilst I can get along with homebaked bread and small amounts of pasta, I do noticeably bloat if I have them too much, so tend to get GF products in preference. If my psoriasis/PsA flares up, I go completely vegan and GF for a couple of weeks until it settles down.

I had the exhaustion, bloating, aching joints, terrible stomach. I gave up the gluten because I was trying an arthritis diet because of the aching joints, felt so much better very quickly, bloating went and the aching, I take cod liver oil/omega 3 and tumeric supplements too. I tested negative years ago for Celiac, and Crohns and I still have episodes but the gluten free diet has helped a lot.

I’ve stopped eating it and I’m really happy. It gave me horrific acid reflux and yes constipation and bloating. I’m also low sugar and low starch so I eat low sugar veg and very limited fruit, very dark chocolate, no cereal grains at all no potatoes that sort of thing. Have heard good things about Fodmap too.