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Anyone gone gluten free...?

(41 Posts)
Lumpylumperson Fri 27-May-16 10:39:13

Im suffering with awful fatigue/breathlessness etc and am in the process of being dx with CFS.

I've heard that gluten can contribute to CFS symptoms. I do get bloated and my stomach is constantly grumbling and rumbling.

I accept that I'm grasping at straws here and trying to claw back some control over this situation. Does anyone know anything about gluten aggravating CFS? Would it help to give it up?

I don't even know what gluten is but I know that I love eating and I really, really don't want to be faddy. Life is pretty hard right now with feeling so ill all the time so I don't want to make it harder if it's not going to be beneficial IYSWIM.

Any experience?

Lumpylumperson Fri 27-May-16 10:40:03

I think I should have put this in health. I'll get it moved.

Pagwatch Fri 27-May-16 10:43:15

I'm gluten free and my children are so we all do it.
It's not difficult at home and it's not daddy if you chose not to go on about it. Most of the people I know in real life don't know I am gluten free.

Supermarkets stock gf good which are decent alternatives. Eating on the go is tricky because it's all sandwiches and cakes and bread based products but lots of places do gf products now. It's pretty common.

dementedpixie Fri 27-May-16 10:44:27

Gluten is a protein found in wheat and other grains. I wouldn't go cutting it out without being tested for coeliac disease as you need to have been eating it regularly to get accurate test results.

Pagwatch Fri 27-May-16 10:57:20

I'm not coeliac as far as I know. I am highly intolerant to it. Which is fucking dull but manageable.

I totally agree that if you think you might be coeliac then get tested before you cut it out.
Would your doctor support getting tested?

Lumpylumperson Fri 27-May-16 11:04:30

One of many tests I've had over the last few months has been for celiacs but it was clear.

I literally know nothing if this stuff but I thought that maybe cutting it out could still help as allergies and intolerances are different to celiacs?

I may well just be clutching at straws. I feel really helpless in this situation.

Thanks for the advice. I'm being referred to a CFS specialist so I'll run it past them. I very much a 'fixer' and look for solutions and this waiting around and 'no cure' business is no good for my inner control freak!

ElaeudanlaTeiteia Fri 27-May-16 11:07:38

I'm not coeliac but I cut it out two and a half weeks ago just out of curiosity, to see if it helped with some minor but niggly issues I have (lot of autoimmune probs in my family and I was diagnosed with underactive thyroid, high antibody count).

I rarely eat bread or pasta so haven't missed those, and have always been a compulsive label-reader, so found it pretty easy.

I do feel better. Clearer head, more energy, and to my absolute shock and delight I seem to be losing the extra stone that has been hanging on doggedly for the last two years.

I had planned on cutting it just for a couple of weeks to see what happened, and expected that nothing would happen and I'd go back to eating whatever. But I'm going to keep on with it.

clarella Tue 31-May-16 15:11:34

I was a gluten skeptic (unless coeliac).

However.

My mil was very ill, clear for coeliac, but in the end cut out gluten on the advice of her consultant (they'd investigated lots of things) and was pretty much cured of her issue (which came on over a few months.) one issue was dramatic weight loss and loose stools. She later tried cutting milk on their advice and is now 100% (it's lactose).

I'm hypothyroid and have struggled in the last few years (though actually it's keeping weight on that's an issue) and been tested a couple of times for coeliac. I keep getting a strange pocket of air on the left in my tummy, joint issues and lethargy.

I have decided to try cutting it out for a month 'just to see'.

clarella Tue 31-May-16 15:12:54

With regards to CFS, have you had your ferritin levels checked? I now find I must be over 70, or 100 to feel well. (My thyroid results are very good too so it's not that).

branofthemist Tue 31-May-16 15:15:39

Lots of people are 'gluten free' and yet eat things like vinegar, ketchup etc forgetting they have gluten in.

If you are going to try it, you really need to look into it. Gluten can be in many things that people don't expect.

PiledUpPenguins Tue 31-May-16 15:19:34

I'm gf because one of my children has coeliacs so I cut Gluten from the whole household to keep her clear. I feel more energetic and I am thinner, it also cured ridicule mild acne I has kept since a teenager.

MackerelOfFact Tue 31-May-16 16:53:00

I think a lot of the benefit of going 'gluten free' is basically just that you end up eating fewer carbs full stop, which reduces the glycogen spikes and crashes that make people feel so awful.

You don't need gluten in your diet, it won't harm you to cut it out, but it's a faff to eliminate it completely if you don't need to. If you haven't already tried cutting out refined sugar and caffeine - which have next to no nutritional benefit - I'd start with those first.

MackerelOfFact Tue 31-May-16 16:54:09

Sorry, glucose/insulin, not glycogen.

clarella Tue 31-May-16 19:24:26

Possibly also, lots of gluten foods are sugary too, which can unbalance all the bacteria throughout the gut/ more thrushy etc.

Broken1Girl Tue 31-May-16 19:37:15

I'd try it. You can be non-coeliac gluten intolerant, and false negatives happen. If you don't feel better no harm is done.
I'm gf. It's a bit of a hassle but as ppl said more and more places do gf foods. I will shortly be having gf lasagne from M&S smile. Not going back to the hideous bloating, rumblings, constipation/ diarrhoea, fatigue and joint aches...worth it.

Broken1Girl Tue 31-May-16 19:40:30

And I've never been thought faddy at all. If it was the latest of a new diet fad every month maybe, but my friends and family know I'm not like that.

HmmmHashtag Wed 01-Jun-16 15:31:37

I try to be GF as much as possible. If I eat even a small amount I get horrendous stomach cramps, and feel exhausted, flu-y and achy.
I'm an idiot though because if I eat out and there's no GF option I will just eat it, because I don't want to make a fuss, then I end up in agony confused
I'm ok with dairy but can't have soya and some fruits and veg. Also suffer with chronic pain and weight that won't shift. Being GF does help a little towards the other symptoms but 100% helps my IBS to avoid it.
Also fucks me off that people don't take you seriously unless you're coeliac sad

FoggyMorn Wed 01-Jun-16 17:29:19

You might be clutching at straws, you might not smile

It could be worth doing an exclusion diet for a couple of months, and I'd recommend a fairly radical one such as whole30 or paleo (autoimmune protocol) exclusion diet. If you read Marksdailyapple blog, or RobbWolf.com where you'll find lots of info and "how to" guide with recipes too.

For me it was fairly miraculous. You need to be strict with it and you can expect to feel quite unwell for the first few days, if foodstuffs are causing your issues.

Gluten is one aspect, but it's not the only component of grain foods that people react to. And then there's dairy, eggs, fodmap, histamine sensitivity... It can take a bit of effort to find out what will work for YOU - we are all different!

FoggyMorn Wed 01-Jun-16 17:35:28

Gluten is a protein found in wheat, barley, rye, and in oats too unless it's been grown in a clean field (so that no wheat from previous years crop contaminates it).

Other grains have similar proteins and may cause reactions in people sensitive to gluten.

There are other kinds proteins in grains and some people will react these too.

MerryMarigold Wed 01-Jun-16 17:40:23

I had Cfs. I also have gluten intolerance. I did the lightning process, which was amazing. You should try it. I still have the intolerance, which has got worse the older I've got, and it does make me tired when I eat too much of it. Give it a go, won't do any harm.

FoggyMorn Wed 01-Jun-16 17:41:00

Hashtag

You are not taking yourself seriously if you eat the gluten option when out and you KNOW It will make you ill! Sorry if that sounds harsh.

I've been there, I know what it's like, it took me several years to come to terms with the whole eating out thing, and to develop strategies for coping with it (I hate making a fuss). It's bad enough to get accidentally glutened, don't do it to yourself smile

FoggyMorn Wed 01-Jun-16 17:43:19

And stop giving a shit what other people think about what you eat- I found that helped immensely grin

FoggyMorn Wed 01-Jun-16 17:47:13

Pagwatch, Pret has recently opened a coffee shop in my nearest smallish town, and that's been a revelation, lovely coffee and always GF salad and other lunch options. It's made my life a tiny bit easier smile

pollyblack Wed 01-Jun-16 17:51:53

I have MS and I have been gluten free for five years, as well as grain/sugar/legume/dairy free. Best thing I ever did, I am slimmer, more energetic, no joint pain, no allergies. Totally worth it and not that hard once you get in to the swing of things.

HmmmHashtag Wed 01-Jun-16 20:51:32

foggy you're right... I felt myself getting anxious recently when I met a friend in a cafe where EVERYTHING was bread based... Ended up eating half a sandwich and then being ill for 24 hours angry I'm a twat!!!

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