Hi all, hope you’re not suffering too much today. Just wanted to bring to your attention an article I was reading today about gluten, which you can find on google. en.m.wikipedia.org/wiki/Non...
I’ve recently been trialing a gluten free diet, which has helped me considerably. I was suffering from abdominal pain and bloating, which I just put down to another of fibromyalgia’s symptoms. However the document I read on the link above does say fibromyalgia can be a symptom of gluten sensitivity. It’s worth reading up on and takes a different direction from the endless pills we’re all being prescribed.
On the subject of pills. I was prescribed Lansoprazole for my stomach problems and was taking vitamin D tablets because my levels were down, both of which can cause kidney disease, which I’ve just been diagnosed with. So be careful and always research your medication.
Hope you have the best day possible. Keep fighting 👍
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Kryptonite59
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I avoid gluten because it aggravates my ibs. Eliminating gluten (or any food group) will only help if you have a sensitivity to the food to start with.
Keeping a food/symptom diary can help to identify foods that might be an issue - as you may not react immediately but might see a pattern where the day after eating something you have an increase in symptoms.
Also I would disagree with the point that fibromyalgia is a symptom of gluten sensitivity.
I also do not eat gluten (in fact any grains at all) but I only found out by accident that it was causing symptoms - firstly because some significant symptoms were skin related (which is common with NCGS and coeliac but not always mentioned, as on this list) and secondly because until you stop eating something, have a reasonable gap and then slowly reintroduce you don't know that it is the cause or a cause. Your body adapts to what you take in on a regular basis, it becomes your 'normal' and it takes a break to find it. So a food diary, while helpful, would not have found this for me. As you say, some reactions take a day or two, but this can make it really hard to pin down, particularly for the common ones of grains and dairy. My neurologist said that the gluten reaction would also have contributed to my neuro symptoms, which some might confuse with fibro. I have had the fibro for so long that I doubt that it will resolve enough for me to say if gluten was contributory.
Hi Hazel, I have had Fibromyalgia most of my life , I was also diagnosed celiac disease when I was 40 , it's he'll for me living on gluten free diet, I hate the food lol, but if you go gluten free when you don't have celiac disease it can give you stomach problems if you eat wheat when you haven't eaten it for long time ,
Sorry to hear that you've just been diagnosed with Kidney disease. It's awful that you take a med for one thing but that ends up causing more problems. I took Lansoprazole for years, and I then suffered with Nausea, but didn't link it to the Lansoprazole, so then it was another med for the nausea. The GP stopped the nausea tablet because of some health scare, so I then read the leaflet with the Lansoprazole, and yes nausea is one of the side effects. I spoke to my GP about it and she said that it couldn't be the Lansoprazole, but I insisted I needed something else. I now take Omeprazole and no Nausea. The problem with my stomach etc was caused by taking Diclofenac for my arthritis.
Thanks for the heads up about Gluten, I will have a go at trying to eliminate it from my diet to see if I am sensitive to it.
Hi Welshcatlady. I’m no doctor, so can’t definitively say the lansoprazole caused my kidney disease. It’s just a very strange coincidence that I started having problems after taking it and since coming off it, my back pain around the kidney area has stopped. What damage it’s done, I’ll have to wait to find out I suppose. You’re right to challenge your doctor if you feel something isn’t right, so good on you.
Just to add to my last reply, sorry, glitch when typing. You might be a little disappointed with the variety in the gluten free sections of the supermarkets and the cost, as they’re a little more expensive. Tesco seem to be extending their selection, but remember, not all foods contain gluten, so a bit of research is necessary unfortunately. Good luck Welshcatlady, hope all goes well.
Hi, keep an eye on your vitamin B12 level - PPIs (Lansoprazole/Omeprazole) reduce your stomach acid which makes it hard for you to absorb B12 (which many find hard anyway, especially as we get older). Testing isn't infallible, but you don't want a deficiency to get severe. Worth getting a coeliac check before going GF, just in case. If you get a positive reaction to GF you would not want to have to go back on it for testing (which they would expect you to do, but would restart the inflammatory cascade which you had just stopped, so not a great idea if it can be avoided).
Hi, Ive found that food can have a massive impact on your body and health. I was diagnosed with ibs over 30 years ago. I was prescribed various different meds but reacted very badly to just about every thing that i tried. It has been a long drawn out process but eventually i appear to be getting on top of it. My diet is ridiculously restrictive and cannot eat out etc, no dairy, eggs, mushrooms, no gluten, no sugar no additives basically, but feel i have my life back. After constant pain with fibro being diagnosed amongst others for years and years it appears to have been predominantly down to food. So yes food can have a massive impact on pain especially gluten for myself the pain was unbelievable, but please be careful everyone out there with trialling eliminating foods, after quite a lot of research etc it can do more harm than good sometimes.
My sympathies erasurefan. I know exactly what you’re saying. Glad you’re in a good place now. I’ve had times when I thought I can’t eat anything and like you, when someone mentions restaurants, I have to consider my options. It’s a continual battle that hopefully we eventually learn to manage, albeit it takes a few years going through the process. Good advice about eliminating foods too. Take care .
I tried a GF diet for a month or so. It was dreadful for my digestive system and I was in agony for some time afterwards due to constipation. Took a few months to recover.in the meantime the best thing I have ever done wrt pain is to give up diet coke and absolutely everything else with artificial sweeteners in.
Bit concerned to hear that you have been diagnosed with kidney disease. I hope you don't mind me asking the following -Do you know what basis this diagnosis was made on? Was it on blood tests or a scan?
What stage of kidney disease do you have? And who diagnosed it-G.P., hospital specialist?
Are you receiving specialist treatment/ monitoring for it?
The reason I ask is in case you have actually developed another condition other than fibromyalgia - or indeed that the fibromyalgia diagnosis was not the correct one in the first place.
Many other conditions present with fibromyalgia-type symptoms - e.g. lupus, small vessel vasculitis - and have the potential to affect the kidneys. As up to around 20% of patients with these conditions can be sero-negative when tested for the usual autoimmune markers, it can be quite easy to end up with an incorrect diagnosis of fibromyalgia as a result.
I don't say this to worry you, but merely to point out that it's always worth checking, especially in the light of kidney involvement.
GPs are encouraged to make a diagnosis of fibromyalgia without referral to rheumatology these days (presumably to save money) and as they cannot run the full range of blood tests a hospital consultant can, the chances of missing other conditions can only increase.
Hi Hoofprints, thanks for your concern . The GP diagnosed me with stage three kidney disease after blood tests. The doctor is keeping an eye on it with future blood tests. The rheumatologist diagnosed me two years ago with fibromyalgia after spending the first year in and out of hospital every other week. After numerous tests and three stents put in, I can only assume they got it right . To be fare I have a very conciencious doctor who’s helped me get to where I am now. I also have an upcoming appointment to see the vascular team soon. I seem to be managing the condition reasonably well, with the occasional relapse. I’m nowhere near the person I once was, but dealing with it. I appreciate your advice and will look into the vasculitis. Thanks again.
Yes please do look into the vasculitis side of things, as well as the possibility that sero-negative lupus could be involved.
I was diagnosed with ME and fibromyalgia for decades before a new rheumatologist took up the challenge of checking my bloods 'for anything that i might just have been not tested for '. He was confident in my diagnosis of fibromyalgia at the outset, but ran tests, including a test for the anti-C1q antibody, which I believe I was never tested for and which was extremely high! He surprised himself.
On the basis of that blood test result, I was then diagnosed with urticarial vasculitis syndrome (hypocomplementic but now normal complement with treatment on Hydroxychloroqine). It is very much like lupus, but without the positive ANCA & ANA tests you would see in lupus. All my usual inflammation markers had been negative for years even though I was getting sicker.
Can I suggest you might find it useful to contact two charities? The first is
vasculitis.org.uk
The second is lupusuk.org.uk
They can give you a steer as to what tests you could ask your rheumatologist to run. Please do consider asking for the anti-C1q antibody test because this is one that even very good drs often omit. Trust me, I was misdiagnosed for years by the best!!
Also ask for your complement levels to be checked. These are a part of your immune system and can help form part of the picture when something autoimmune is going on.
Top tip is to ask for a copy of your blood results and do not just accept their word that you are within normal range. My immunology drs told me that my blood were normal: when I saw my complement levels myself I remarked they were outside the normal range. They just said it wasn't significant!!
It was significant, and if they'd paid proper attention to it I could have been diagnosed and treated 5 years sooner and at a point when I was not as ill or immobile as I now am.
Lastly, I don't know where in the country you live, but as your kidneys are involved if you ever need a good nephrologist may I recommend professor Salama at the Royal Free in London. He's not only a brilliant practitioner but a very humane man. The charities I've outlined above can help you further with recommendations.
Sorry for the long reply but I really do think you would benefit from more pro-active and timely intervention than you are receiving right now. There are many forms of vasculitis and countless examples of patients being undiagnosed for years until they end up as acute hospital admissions with kidney failure. Again, not meaning to frighen, just to inform you honestly as I'd never heard of vasculitis until I was diagnosed.
Good luck with your appointment and do update us all on how you get on 🤞🏻🤞🏻🍀🍀
Sorry I forgot to clarify if your stents are kidney stents? Assuming so. Fibromyalgia doesn't affect kidney function, so curious to know what they attribed the kidney failure and need for stents
Wow, you’ve given me a lot to take, which I will definitely take on board. The stents were for arteries from the heart which were ninety five percent closed. I put that down to my two years of inactivity.
Sorry if I've overwhelmed you! Autoimmune disease can affect heart vessels - vasculitis included. Lots of different types of vasculitis that will affect different vessels of different sizes in different places.
Again, not wanting to overwhelm you, but if your heart vessels AND your kidneys are involved, it makes me even more suspicious that something autoimmune, and treatable, may be going on.
Might be worth you taking a look at the Health unlocked sites for PMRAUK & Vasculitis.org.uk.
Feel free to message me going forward if there are any specific things I can help with. Take care
#The wiki article is very wide ranging and having once been tested negative on Coeliac tests (without having been instructed not to eat gluten for weeks prior to the test) I am interested by the reference to 'markers' on people who are deemed to be negative. When I feel energetic and well enough to follow those up I shall try to do so. Also when I can manage to read all of this article and take it in through the b fog that too will be good!
I keep off gluten pretty much all of the time except when other people 'cater' and then I 'test' out whether I really have problems with this in preference to going hungry and also through a) greed and b) social cowardice! - Being gluten free will help you but oh how one misses things like marmalade on toast! (Pain des Fleurs is a make of crispbread I can recommend to take the place of bread. Is really nice as I can't take the yeast of gluten free bread. The yeast in food connection might surprise you if you follow that up too. It's my worst headache!!!)
- My daughter in law who throws up after eating even small bits of gluten put me on to Daosin which I take occasionally when eating out to help with other reactions but it's a bit expensive so I don't use it as a matter of habit. - My son just mentioned that after his coeliac test was negative, the doctor insisted that it proved he was not affected by gluten. W R O N G!!!
Thanks K for posting the Wiki link. May we live to reap the improved health of better times!
Hoofprints makes some excellent points. You could also consider Sjogren's sjogrensadvocate.com/ another autoimmune which is more common that you'd think, often overlooked and can affect kidneys and heart and many other places, as well as the fibro links. Best wishes
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