The conclusion expressed my frustration today. The paper covers everything from nicotine to yoga, supplements etc...
"In conclusion, although there are more holes than cheese in Swiss cheese, the nonpharmacologic treatments for RLS are worth considering given the limitations and partial success of the currently approved methods. Additional research to establish the efficacy of nonpharmacologic treatments for RLS and to separate the myths from the science is very much needed."
From
Sharon, Denise (2015). Nonpharmacologic Management of Restless Legs Syndrome (Willis-Ekbom Disease). Sleep Medicine Clinics, (), S1556407X15000533–. doi:10.1016/j.jsmc.2015.05.018
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WideBody
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Thanks for that, but I really hope they have a open and enquiring mind if they ever do the research. My RLS (from childhood) went away in my 50s- I suspect it was quitting gluten for me, as that resolved other symptoms unexpectedly, whether it was the gluten directly or the absorption issues it caused (but the RLS went before I'd fixed the absorption to any degree noticeable in bloods, so likely the gluten itself). I also quit dairy and started to use magnesium at about the same time, so could be any/all - and COMT is a magnesium dependent enzyme which some have suggested is involved, although more so for fibro (which I've had since childhood) also MAO-A - I have SNPs on both. Can't be vit B12 directly for me as I'd been taking that to some extent for years and I didn't add methylfolate until later (many other benefits, but not the RLS in this case). Iron was pitiful still, long after it had gone. I use vit E, D and C but nothing changed close to the right time. At least for me, for now, it has resolved as has the beginnings of a familial tremor. Wish my grandmother could have tried gluten free as her RLS was apalling. Coeliacs aren't the only ones affected neurologically by gluten and coeliac testing only picks up about 30% of coeliacs (usually misses those who don't yet have severe disease, just the ones who can do most to benefit). You can do so much to shift your epigenetics. Cheers
Bookish, could you explain more about how only 30% of celiacs are picked up by testing? I had had gut problems for years, and when my dad was diagnosed with celiac, I got tested. The doctor told me it was positive. Strangely, though, recently and with a new doctor I was given a genetic test which came back negative for celiac. I haven't eaten gluten for years, though have accidentally a few times and had very uncomfortable reactions. Unfortunately, the first doctor destroyed my records, so I can't get copies of the original testing. At any rate, I'm glad the you're doing so well with a gluten free diet : )
Hi, if you'll forgive me I'll use something I wrote recently for someone else (at which point I understood that even less get a result than 30%, which I've read since) in the hope that something will be useful. Pity about the destruction of your records, happens too often. Such a lot of our ability to deal with glutens is down to gut health. With a coeliac parent, likelihood is you'll be better off than on, whatever the testing says and your reactions are telling you that, as mine did. Interesting that you had presumably +ve bloods/antobodies/biopsy but -ve genetic, but so much is environmental and epigenetic you can be coeliac or NCGS without the genes.
NCGS is non-coeliac gluten sensitive, another gluten related disorder, not coeliac - which gets the most attention but is far from being the only problematic form. Coeliac testing, be it blood or biopsy or normal genetic, will not be looking for enough to definitively rule out coeliac, never mind any other form of GRD. Unless the damage is significant, from late stage disease, it is easy to miss. Only a relatively small number of those who are actually coeliac have a diagnosis (the UK is better than some, but still only about 15-20%). And there are lots who are not coeliac but still react to glutens (not just wheat, but potentially any grains - I went traditional gluten free first, which means you eat more of the things that are used as alternatives, like corn, millet, rice starches, and I found that I reacted and had to remove the lot, so have been grain free for 5 years until just starting to reintroduce rice in the last month). Remember that genetic susceptibility still needs triggers to express - far more will have gluten related gene variants than will actually develop a GRD - but we shouldn't be looking only for traditional coeliac genes, and antibodies may well not show without significant or even total atrophy. We also don't generally look for enough transglutaminases - tTg2 is generally thought to be related to gut-centred gluten illness like coaeliac, but not exclusively, and tTg3 may show for skin reactions and tTg6 for general gluten related disorder including brain, neurological and nervous system. Gluten doesn't only affect the gut, even for coeliacs, and may well be neuro or skin first.
HLA-DQ2 is the usual genetic marker for coeliac susceptibility, but can also appear with NCGS, and HLA-DQ8 may also appear with either. HLA-DQ1 and HLA-DQ3 are more common in NCGS and there may well be others that we don't yet know about. If you have the genetics and the symptoms, best to assume that your genetic vulnerability has expressed, even without antibodies. If you have the genes but not the symptoms then monitor regularly as some will express and some won't and no-one can predict who.
Gluten is associated with poor sphincter of oddi function and chronic pancreatitis as well as decreased pancreatic enzymes and bile acids and stomach acid, associated malnutrition and inflammation.
In my personal experience, worth testing and then trialling a gluten free (autoimmune/anti-inflammatory) type diet if at all possible.
Hi, I think that 'I love bread' may be the clue that you need - I adored it, as did my mum, we even used to joke about having been bakers in a previous existence, and she had craved bread when she was pregnant with me (and thought that was good, as it was healthy - yeah, right!). My reaction on stopping was significant and I wish she had been around still to know and try it herself. But traditional gluten free wasn't enough for me and I am grain free, having eaten nothing with flour of any kind for 5 years ish. I changed body care products and supplements as so many are corn based. I too am happy to feel better although still work to do. Best wishes
Thanks so much for this information! I have been on a GF diet for a long time now, and keto mostly until about a year ago, and which I'm now restarting. It was about a year and a half ago that I started developing weird leg pain and other symptoms--one leg collapsing, loss of reflexes, inability to bend one knee. I was at the time being treated for long-term gut infections--SIBO and candida by a functional medicine doctor, and my gut issues were improving, but then the neuro pain happened. I talked to my regular doctor, had tests done, explained that I was a celiac, and that's when they insisted on testing. Here in the states, everything is costly, and I had no idea that the genetic testing that I didn't see any need for would cost me $500. They did the HLA DQ2, 8, A1 and B1. Interesting that DQ3 might be a possible marker that wasn't looked at.
I know from experience that I'll have to spend a lot of time in the bathroom if I eat gluten, and the last time that I did ingest the stuff, I had 3 days of horrible stiffness in my legs that made it impossible to walk my dog (but then went away). So though I don't understand the mechanisms or the genetics, gluten does not agree with me. It's also intriguing that you brought up pancreatitis; I was hospitalized for that a couple of years ago.
I'm currently taking pancreatic enzymes and ox bile (no gallbladder since infection and gallstones were found at the same time as the pancreatitis). I'm giving myself b12 shots since it was discovered that I don't absorb b12 (parietal cell antibodies), but I'm convinced that I'm also b1 deficient, and that's what's causing the awful leg pain. My regular doctor doesn't think so, but my functional medicine doctor is fine with my supplementing with b1 high dose, very incrementally, thinking it should help. The research I've seen has correlated b12 malabsorption with sometimes b1, folate, and iron deficiencies.
I'm one of those people that had RLS and got great relief once on a sugar free diet and I started taking iron twice a week. But my RLS came back when the leg symptoms started. Though my ferritin levels are above 100, my iron/total iron binding capacity is only 22%, so I've been taking 50 mg of iron bisglycinate every other night before bed, and the RLS is definitely improved, though not gone.
I feel for everyone here; RLS is hellish.
I'm glad you've had so much success by reducing inflammation and cutting out gluten and dairy. Ditching the dairy is probably something I should do.
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RLS and cheese
Retren
This might be found useful?
I’m Coco & today Joolsg suggested I post re upcoming NHS Iron Infusion 
