Do your ME symptoms improve when you exclude wheat/gluten?

[SueJohnPat]

I tried it twice. Once for 4 months, got horrible diarrhea. Weird. I have had " ibs" in the past and went through a period of time in my twenties when I could not tolerate dairy. I now have no issues with dairy.

I then went on my " regular diet which is not anything strict other than buying organic , eating as little/ no processed food. Limiting sugar/ refined carbs, I was then treated for ibs with antibiotic Xiafaxamin then followed up with Vsl 3 probiotic.
Tried gluten free again for two weeks felt terrible. Went on cholestyramine originally for ibs diarrhea but got s super boost when it helped a " mold" issue I did not suspect I had.
Was tested for over 400 food allergies all negative. Maybe Some of us have food triggers some have enviormental.

I also have Hashimotos and had gluten free jammed down my throat. I wanted it to help me but it did nothing still had high tpo antibodies.

 

[HowToEscape?]

I've cut out nearly all wheat/gluten for a while for other reasons, but haven't found it to make much difference, with two caveats.
1. Before getting sick, I rather liked bread (fresh, not stuff in bags from the stupidmarket). If I had a loaf of still-hot bread of some yummy type, let's say rye with molasses, a fig/pepper stick etc, I could demolish it in 2 days. Now, I cannot handle more than modest amounts of bread. If I have an excess amount I'll be in worse shape in general and have digestive problems, neither was the case previously.
2. Having a normal amount of carbs, whether 'good' (whole grain bread, slow digesting) or 'bad' (stuff made with white flour) appears to have boosted my energy level when consumed during a period (more than a week) of low carb eating. It also caused a huge spike in appetite, so I'm cutting them out again.
Try it yourself. Chances are it'll be different for you, there's great individual variance with this stuff.

 

[ChrisD]

I was forced to go Gluten free when I started coming down withh CFS/Fibro symptoms, every time I would eat a Sandwich, pasta, pizza, whatever it may be, I would have terrible Fibromyalgia and Brain fog. So it was easy for me to start cutting it out as I never really craved something that would make me feel so awful about 30 minutes after eating it. A year later I occasionally slip up and have a little bit of gluten in something, yet seem to be more tolerant to it now, however I will stay GF to keep my inflammatory response down

 

[hellytheelephant]

Thanks @ChrisD - I have been off gluten for about 8 months now. Similar to you I can tolerate a tiny aberation but am definately keeping on the diet as it has really helped with the persistent sore throat/sinus problems I had. I don't really eat a lot of processed GF as that feels counter-productive, so I tend to make my own oat soda bread or have porrige but not really bread anymore.

 

[Ysabelle-S]

So, I've just been perusing this thread again, and trying to remember how long ago I gave up gluten. I've commented here before, a while back. I think I stopped eating gluten products around September or October 2014. Not sure, but somewhere around then, or the next month. I had a slip up with the wrong yeast, which gave me two months of cystitis, which I mentioned before. The cystitis is a wheat problem - it started when I was advised to give up wheat back in the early nineties, which did nothing for my ME, but left me with a case of cystitis every time I gave in to a pizza. I gave up with the wheat free diet in the end, so that was months of cystitis, sometimes quite low level, before it disappeared. Then I had cystitis a couple of times a year on average from then on. The last time was shortly after I stopped gluten and added the wrong yeast to bread. So I've been cystitis-free for about two and a half years, which I'm pleased about. However, that seems to be a wheat and not a gluten issue.

On the subject of gluten, I had an upset stomach and diarrhoea every day for quite a while by the time I decided to try giving up gluten. I was surprised at how fast my stomach cleared up. I think now, on reflection, my symptoms have died down a lot, but they flare up again with a day trip, and I mean a day trip by car where I'm walking a shorter distance than I used to. The symptoms flared up after a trip to Loch Lomond this year. The day itself was great, but I had much longer PEM than I used to get, and gut flare ups. So now gut flare ups are more obviously tied to exertion and PEM. And it takes weeks for a flare up to die down, whereas it was more like days when I was younger, providing I didn't go and do something else too soon.

I notice some people saying they can't handle grains - well, sorry, but no one is taking my brown rice away from me. I love the stuff. And the nightshade vegetables.... I'm not giving up them either. As it is, I'm a pescatarian - though I don't drink cow's milk. That was another thing I ditched. I used to love milk, and would buy those small cartons as a student to drink but sometime later milk just seemed to turn sour for me (sometime after the ME had hit), and I could only have it heated for hot chocolate or a sauce. Butter and cheese are fine, unless I'm eating too much of it, which I don't tend to do.

I don't take any pre or probiotics, and don't know whether they would be a good idea or not, or whether it's best to leave well enough alone.

 

[hellytheelephant]

Hi @Ysabelle-S - I totally agree with you- Brown rice is one of life's essentials! Am also a pescatarian and don't drink cow's milk....although I do ok on goats cheese, soya milk. ME ( and menopause) have made me much more mindful about what I eat. Thankfully beaing GF cuts out a lot of pre-packaged stuff.

 

[Ysabelle-S]

Hi @Ysabelle-S - I totally agree with you- Brown rice is one of life's essentials! Am also a pescatarian and don't drink cow's milk....although I do ok on goats cheese, soya milk. ME ( and menopause) have made me much more mindful about what I eat. Thankfully beaing GF cuts out a lot of pre-packaged stuff.

I've never had goat's cheese! But soya milk is what I have either in g-free cornflakes or hot chocolate, etc. A lot of the meals I've made for decades are gluten-free anyway. I wasn't prone to eating much in the way of pies, etc, so it was bread and the odd pizza and cake that was affected. I like gluten-free pizzas, but I'm not a fan of the bread, so I eat less bread and rolls than I used to do.

 

[ChrisD]

@Ysabelle-S @hellytheelephant I was eating a lot of brown rice too but then found out that many dieticians theorise that in actual fact, white rice may be better since it has essentially been bleached and removed any inflammation causing contaminants - just a thought. I avoid Soya complete as it is very inflammatory to the gut and wreaks havoc with hormones, coconut or almond milk is a much better option. Also most gluten free options are filled with even more rubbish than the original food so I tend to avoid them too unless I am really craving a piece of bread and then I will give into one of the more expensive, well-made brands that include ingredients like psyllium and linseed.

 

[MeSci]

Has anyone in the UK tried this site for organic, vegan, gluten-free products?

https://www.artisanbread-abo.com/

 

[Ysabelle-S]

Has anyone in the UK tried this site for organic, vegan, gluten-free products?

https://www.artisanbread-abo.com/

I haven't tried that one.

 

[Ysabelle-S]

I've changed my vote at the beginning of this thread. I had previously gone for some improvements since giving up gluten but I think there's been a bigger change. However, I'm obviously still ill. But getting rid of the stomach problems, the daily diarrhoea, etc, probably helped orthostatic issues too, which is why I've changed my vote. I've always been bad at not taking enough fluids, and I'd think the situation would have been worse before changing diet. Also sorted out the cystitis issue as well, which had dragged on for decades. I'm also of the opinion that the useful supplements I take - CoQ10, L-C, and others - might not have worked so well on a constantly disrupted stomach, or might even have made it worse. So, I'm glad I only took them a long time afterwards. So long term symptom elimination or relief. Obviously, if you don't have stomach problems then you might not notice a difference.

 

[erin]

I should change my vote too. I'm now totally gluten free. Tough still not feeling so good. I've been severely bloated recently. I think I need to stop dairy too. I feel so bad about this as I'm a big fan of natural yoghurt and cheese. I mean today I feel I'm gonna explode, so uncomfortable. I kind of struggle to breathe.

Last week I ended up in A&E with severe vertigo after kefir drink.

 

[Ysabelle-S]

I'm posting this here for anyone who might find it useful: http://www.motherjones.com/environment/2015/02/bread-gluten-rising-yeast-health-problem I know there was an article recently about a bakers' (can't recall if it was in the Republic of Ireland) that made breads that could be tolerated by at least some people with gluten issues, and I think it was because more traditional breadmaking techniques were used.

 

[MeSci]

I'm posting this here for anyone who might find it useful: http://www.motherjones.com/environment/2015/02/bread-gluten-rising-yeast-health-problem I know there was an article recently about a bakers' (can't recall if it was in the Republic of Ireland) that made breads that could be tolerated by at least some people with gluten issues, and I think it was because more traditional breadmaking techniques were used.

Was it this one: https://uk.bfreefoods.com/

I used them, but started finding that I couldn't tolerate them. I wondered if it was the buckwheat in some products, but they don't all contain it. Or maybe I had just been made intolerant by quitting l-glutamine?

 

[erin]

I can tolerate properly made sour dough bread from the market in our town. A lovely villager lady makes some 15 - 20 sour dough bread and brings into our local market once a week. She says she gets the flour from her local supplier which is not an industrial scale producer. She adds her own yeast made by herself and very slow fermenting it with the wheat. Then she bakes in the stone oven in her garden. It's delicious. Very hard texture and you eat a slice you're absolutely satisfied. I don't get bloated with this bread.
However, our local chemist recently started to supply gluten free bread with very reasonable prices. It is never as tasty as the market lady's bread but it is not bad at all.

 

[Ysabelle-S]

If I thought I could eat this stuff I would. It's not stomach problems I'm concerned about, since that would pass, but the tendency for cystitis symptoms to go on for weeks - two months last time.

 

[erin]

@Ysabelle-S are you celiac?

I'm not tested but but I have huge GI issues, I experimented with gluten free that symptoms got better. However now I have very bad new GI symptoms after eating dairy. I probably have Celiac disease.

I had cystitis in the past, earlier days of ME and I had a urethra operation then. 12 years on I rarely get cystitis. Last year in December I had a terrible one though. It lasted more than a week.

 

[Ysabelle-S]

@Ysabelle-S are you celiac?

I'm not tested but but I have huge GI issues, I experimented with gluten free that symptoms got better. However now I have very bad new GI symptoms after eating dairy. I probably have Celiac disease.

I had cystitis in the past, earlier days of ME and I had a urethra operation then. 12 years on I rarely get cystitis. Last year in December I had a terrible one though. It lasted more than a week.

I've not been tested because I wasn't willing to eat it again and risk weeks of painful cystitis just to do the test. I had cystitis for decades, a couple of times a year on average, and it went away when I gave up gluten, barring the one time I accidentally ate bread with some gluten in it - two months of cystitis. Never again! So I don't know.

I gave up milk, and eat far less butter and cheese than I used to and I suspect that's helped some other gut issues.

 

[MeSci]

If I thought I could eat this stuff I would. It's not stomach problems I'm concerned about, since that would pass, but the tendency for cystitis symptoms to go on for weeks - two months last time.

I've been getting urinary discomfort (not cystitis...yet) for a couple of weeks, which I think is when I started taking small amounts of l-glutamine and stopped getting abdominal bloating. Can't be sure though.

Goodness knows with this %&<>#@ illness!

 

[MeSci]

I've not been tested because I wasn't willing to eat it again and risk weeks of painful cystitis just to do the test. I had cystitis for decades, a couple of times a year on average, and it went away when I gave up gluten, barring the one time I accidentally ate bread with some gluten in it - two months of cystitis. Never again! So I don't know.

I gave up milk, and eat far less butter and cheese than I used to and I suspect that's helped some other gut issues.

I don't think many of us have actual coeliac disease, but another kind of gluten intolerance. I had already given up gluten when I was offered the test too, and wasn't willing to risk it, just to get GF products free if I did have coeliac disease. I could have done with financial help, but might not have got it anyway.