RLS & Coeliac/Gluten sensitivity - an... - Restless Legs Syn...

Restless Legs Syndrome

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RLS & Coeliac/Gluten sensitivity - anyone found a connection?

Chancery profile image
49 Replies

Hi, I've noticed recently that my RLS either comes on, or is worse, after I've eaten wheat. Unfortunately I haven't done a nice 'clean' experiment yet to be sure it's actually the wheat itself (you eat and drink so many different things, in various combinations, during the day it's hard to be sure!) but it does seem to be an awful strange coincidence that it's always worse on days when I've eaten wheat.

Is there anyone with coeliac disease, or NCGS, who has experienced this? Or have you read/seen any research on it? I believe RLS is a neurological condition and as gluten can bring on neurological problems it doesn't seem so far fetched. Anyone...?

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Chancery profile image
Chancery
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49 Replies

There is so much gluten in things you wouldn't believe. I've seen gluten in kids jelly sweets as a sweetener, its in loads of foods..

I find if I have gluten my legs go bananas. I haven't tried a blind test but I guarantee that if I was fed a gluten product I'd know it from my legs soon after.

Chancery profile image
Chancery in reply to

Thanks Raffs. Just as an aside the wheat in children's jelly sweets is either to act as a thickener but more usually to stop them sticking together! Gluten isn't sweet.

in reply to Chancery

Sorry was thinking of Barley.

Madlegs1 profile image
Madlegs1

The relationship between diet and rls is now extremely conclusive.

Your experience is typical of many others.

You now need to refine your research down to exactly the parameters for your own individual situation.

Good luck, and thanks for sharing.

Chancery profile image
Chancery in reply to Madlegs1

You're right, Madlegs. An elimination diet may be in order eventually - worst luck!

Eryl profile image
Eryl in reply to Madlegs1

I agree. Remember, if the wheat is in the form of bread, it may be another ingredient used in the bread. i.e. a preservative or a sweetener used to feed the yeast, or it may be what you spread on the bread. The E202 preservative in margarine will trigger rls for me, or just the carbs from a lot of bread with jam.

Chancery profile image
Chancery in reply to Eryl

You're right, Earl. Sadly I often think I have a carbohydrate intolerance in general (it's always the fun stuff!). When I did both FODMAPS and low carb I found I felt better both times. While I'd like to think it is only one thing, or a couple of things, that is responsible, I often suspect it might just be general 'Western sickness', i.e. eating too many carbs!

Graham3196 profile image
Graham3196

I am not coeliac but I have definitely found that gluten triggers my RLS. Its actually called non-coeliac gluten intolerance. When I was a teenager I new there was some relationship between "indegstion" and my RLS. 45 years later my RLS worsened and I tried a gluten free diet after reading somewhere that gluten was a trigger for RLS. To my relief it worked. I later found that there were still things causing problems but at a much reduced intensity. I am now on a FODMAP diet and also exclude gluten, alcohol, lactose and caffeine. Its a bit restrictive but there are still plenty of foods available and I sleep soundly most nights.

I'll send some info by private message.

Graham

Chancery profile image
Chancery in reply to Graham3196

Thanks Graham, that's very interesting. I've done the FODMAP Diet in the past, for IBS, and I found it really useful for that. Unfortunately I didn't monitor its effect on my RLS. That said, my RLS is worse now than it was then (2015 I think I did it - for several months), I get it every night, although not usually severely unless I've been eating chocolate or drinking Coke!

CORFUORBUST profile image
CORFUORBUST

I am a coeliac and have been for over 10 years. I have only had RLS/PLMD for just under 2 years, so I do not see how wheat or gluten can affect it. Perhaps it is something else in the food item that you are eating that is causing it to be worse, e.g. yeast or additives. There is also a lot of sugar in modern processed wheat and I have found one of my triggers to be sugar. I have been to the top professor in gluten ataxia in Sheffield. He only deals with patients with neurological conditions affected by the ingesting gluten. The conditions that one would suffer from would be headaches and motor control as gluten attacks the brain, rather than RLS. I am not, however, a specialist and if anyone finds that omitting gluten and wheat from their diet helps them then that is up to them, but, seriously, cutting out items from your diet without medical advice is not recommended. Coeliac UK also state that following a gluten free diet is not advised or beneficial for anyone without diagnosed coeliac disease or NCGS. Unfortunately, as doctors do not really care what causes RLS it is a process of trying what is best for you. Unless you are prepared to pay privately for food intolerance testing then it is really just trial and error.

I also have been following the low fodmap diet and lactose free. I also have a system where if there are too many ingredients on a product I just do not buy it. I am also intolerant to fructose's, glucose's, maltodextrin and sweeteners to name a few. I have been following this diet this for years and years, so I would like to know why the hell do I have extremely severe RLS (38/40) and PLMD with whole body and head jerking. I wake up 69 times an hour according to my sleep study and due to all my illness cannot take any tablets apart from tramadol and melatonin, so I suffer a lot.

I hope it all works out for you though and best of luck for your healthy future.

Chancery profile image
Chancery in reply to CORFUORBUST

Hi Corfu, thank you very much for that info - it's really helpful to meet someone who has coeliac and RLS. And you've actually been treated in Sheffield - I'd give my eye teeth for a chance to be seen there! However, I am pretty sure I read recently that it was Sheffield who made the correlation that there may be a relationship between RLS and gluten - I assume because they've found a lot of their patients have RLS, perhaps? It was that that made me consider coeliac disease again (as a reason for my other complaints).

Can I ask how old you were when you were diagnosed with coeliac, because I'm wondering if it took some years for you to be diagnosed might not the damage have already been done regarding your RLS? Or might your stomach still not be fully repaired yet, hence you perhaps having iron problems or some such? I know it's a reality that some neurological damage is irreversible, hence it being important to be diagnosed promptly. I assume you haven't eaten gluten during the 10 years you've known you have the condition? I don't mean you were too stupid to stop! I mean you were given the full info' and so forth and didn't go on eating it through ignorance or misinformation?

And curious you should mention maltodextrin. I had been concerned about Sucralose for a long time and have actually stopped using it, but only recently started to wonder if it might not actually be Maltodextrin that bothers my RLS.

I'd really love to hear the story of your coeliac diagnosis - when you found out you had the condition and how, and if all is well with your gut now...

CORFUORBUST profile image
CORFUORBUST in reply to Chancery

Hi. You are welcome. I am not sure about Sheffield having correlation between RLS and gluten as I went there to see Prof Hadjivassiliou for mobility problems and I did not have RLS then. I had read his thesis where he states that undiagnosed coeliac disease for long periods can cause irreversible neurological problems. When I went there he did the standard neuro test on me and asked me to pace a few times in a small room (more like a closet) and looked at my recent blood tests and that was about it. When I received his letter he stated that as my blood work contained no gluten antibodies and that I was following a strict gluten free diet he determined that I did not have gluten ataxia. There was no mention of the fact that I was undiagnosed for 7 years and that damage had already been caused. His diagnosis of me totally contradicted his thesis, so I would not worry about wanting to see him as I found him useless.

I was diagnosed with CD when I was 42, so I realise now it has been 12 years!. I had to have a total hysterectomy and oophorectomy when I was 35 and it was a long operation and had to have a blood transfusion due to complications caused by endometriosis. This is now believed to be the major trauma that caused age onset CD. By the way, my brother was born with CD, my other brother has Crohn's and my sister MS, so a long history of auto immune diseases runs in my family, yet not one doctor in 7 years gave me a simple blood test for it. Therefore, I was undiagnosed for a very long time. Hence why I asked to see the renowned professor. I immediately started following a gluten free diet as recommended by the specialist dietician but, after 1 year was still quite ill. This is where I was classed by her as "a sensitive coeliac", whereupon, I cannot tolerate the codex wheat starch, maltodextrin, fructose, etc. I have tried over the years to campaign to Coeliac UK for them to ask for CD to be classified like they do with other illnesses, for example, type 1, type 2, etc. I know a lot of coeliacs who can tolerate small amounts of gluten with no ill effect and yet there are many others, like myself, that can tolerate not a trace of it. I cannot even tolerate food made in a factory that contains wheat. So in answer to your question, I have not eaten any gluten, apart from the codex starch used by companies such as Juvela, in the 1st year, at all. I am extremely strict as the pain is not worth it. Then over the years as I got to know my symptoms, I have cut out more and more.

With maltodextrin and a lot of other manufactured sugars, they can come from wheat. But, Coeliac UK deem them "safe" for "most coeliacs". This is a struggle for many of us that cannot tolerate them as a lot of gluten free manufacturers use it and other manufactured sugars. As they do not have to declare it on their packaging due to new laws that state up to 20ppm can be added to gluten free products, I have now stopped eating most gluten free foods, unless totally necessary, as I feel I am getting trace amounts on a daily basis and this is adding to my problems. When you buy a gluten free loaf of bread and it tastes nice, think again, as that will definitely have trace amounts to make it taste that good!!!!!

I am still struggling with all the symptoms of gluten ataxia, i.e., limbs, balance, vocal cords, bladder and even though 2 neurosurgeons have stated I have ataxia, the others disagree and now they say I have functional neurological disease, which basically, means they have no clue and more than likely think it is all in your head, although they deny that last part, I see it on their faces. I am at a point now where I am giving up. I have one last neuro to see in the next month or so and then I am done with the last 6 years of hospital appointments every other month and being pushed from pillow to post!!

So to finalise, my CD is well under control and I never cheat. I think being bought up with a brother with CD and seeing him suffer helped me to be aware of the problems caused by eating gluten. (He used to often run off and get a chip butty after school and then suffer for days and weeks after) I am at a loss as to what caused my RLS and I have been told that I could have had it for years but, at a level that I never noticed it and that now it has escelated into a more severe level. It's all a mystery and I think that until ALL neurologists take RLS and other neuro related diseases more seriously and stop thinking of their EGO and how if they cannot operate or give you a pill to cure you so that they can "close" your case, we are all in for many years of suffering.

Happy thoughts now :)

Chancery profile image
Chancery in reply to CORFUORBUST

Thanks, Corfu, that was really helpful. Your family is not really adapted for modern life, I fear! You’re not first (or maybe second?) generation immigrants, by any chance, because you do all seem to be terribly sensitive to ‘Western’ food/life. I’ve always felt my Irish ancestors have rendered me sensitive to wheat, since it wasn't eaten there – I think that’s why I’m a potato girl! Either that or we have both been very unlucky in the gene pool, you even more than me. I really feel for you with that history - it's horrendous. I always think it must be terrible to be one of the super-sensitive coeliacs like yourself. Wheat and its derivatives are absolutely inescapable and because being 'gluten-free' is so trendy nowadays it must be really hard to convince people you have a really serious complaint; you’re not being some kind of faddy prima donna. Bad enough to be dealing with that level of illness without people judging you too!

I imagine the Prof didn't see any point to taking your case any further because the only thing they can do for you now is put you on a gluten-free diet, which you're already doing, and then only time will tell if you are going to heal fully. Given the outrageous length of time you were undiagnosed, it is possible that you will never be quite steady on your feet again, but it is equally possible that with a good few years gluten-free under your belt things will start to reverse, so fingers crossed!

I've had RLS since I was in my 20's, I suspect, and definitely since my 30s, but it only used to be triggered by certain things. Nowadays (I'm 61), I have it most nights. I'm lucky, in that an iron tablet damps it right down for me, but I'm hoping it doesn't get any worse; I don't need more drugs in my life! As I think I mentioned, I have trigeminal neuralgia, a rare neurological condition, and I find it very suspect when you have more than one neurological condition. To me it smacks of an over-arching problem (like coeliac) but doctors don't want to know. Like you say, they want you labelled, dosed and flung out the door. Still, doubtless one day they will add up their twos and get fours, but I doubt if it will be in our lifetime - sadly! Thanks again for your help, I really appreciate it.

CORFUORBUST profile image
CORFUORBUST in reply to Chancery

Thanks Chancery for such kind words. I was told that there is no Irish in my history but, I definitely love a spud too!!

I wanted to add that when I was 1st diagnosed and then went gluten free, apart from the 1st year, after 3 more years I was good. I have only been falling over and not able to walk properly for the past 4 years. So I had roughly 4 years of a "normal" life. So I don't see it improving now as I appear to be going backwards, hence the visit to Sheffield. I am. however, forever hopeful of a cure. :)

I am sorry you have suffered so long too and wish you well.

Brenda x

Chancery profile image
Chancery in reply to CORFUORBUST

Oh Brenda, I didn't realise that. So you had a gap of good health and then the ataxia started? What a bummer. That does seem to suggest another problem, doesn't it? Unless, as I say, the nerves were already damaged and it just wasn't apparent and then aging shanghaied you! I assume they've checked you for other autoimmune issues, since they seem to run in packs? One autoimmune issue always seems to bring its distant cousins along!

CORFUORBUST profile image
CORFUORBUST in reply to Chancery

Yes I have been checked for everything!! This is why I was certain I had ataxia as the Prof said in his thesis that following a strict gluten free diet will see almost all symptoms disappear but, those undiagnosed for extreme lengths of time can see neurological symptoms reappear and at a much worse rate than they were originally and these are irreversible.

Chancery profile image
Chancery in reply to CORFUORBUST

And yet he didn't think that was the case for you. Did he say why, or did he just pronounce you didn't have ataxia at all and therefore he thought you had no problem, or did he feel you might have another, different problem?

CORFUORBUST profile image
CORFUORBUST in reply to Chancery

Hi, he just said I did not have Gluten Ataxia.

Chancery profile image
Chancery in reply to CORFUORBUST

Not the height of informative, that!

in reply to Chancery

Wow Chancery you are one of only about 4 people I've seen on here who get immediate relief from an iron tablet. It seems like the list of substances that can temporarily worsen RLS symptoms is endless as well as the comorbid illnesses. And then there are some fascinating substances like melatonin that seem to initially worsen RLS but who knows in the long run may actually improve our pathetic dopamine receptors. Maybe that's why some people get improvement with melatonin. I also agree with you about the post gallbladder surgery "dumping" syndrome as I like to call it where every time a person eats a deluge of bile hits their small intestine and causes the runs. The gall bladder is the great bile regulator and with that gone you run the risk of IBS-D. Would never have dreamed it could initiate other disorders such as Crohns. I like to believe, although maybe wrongly so, that the things and substances that help non-celiac, non-Crohns sufferers with their RLS stand a chance of helping those with these diseases. Because of the strong correlation doctors are finding between RLS and low brain iron (and recently high brain hepcidin) I tend to think that these diseases discussed in this link are causing the body to release hepcidin in an effort to sequester away the life giving iron from these bodily enemies and in the process worsening RLS. When I hear someone who has crohns or celiacs and a relatively high iron store it really makes me think that the body has clamped down on the release of iron from those stores as well as any iron that may want to come in from the small intestine.

Chancery profile image
Chancery in reply to

I want to say 'I wouldn't say it was instant' but do you know, I take the damn things and then don't actually notice how long it takes, which kind of suggests it is fairly fast, doesn't it? The only time I do notice it is when it doesn't work and I have to get up and take another one. That happens so infrequently I think it's fair to say the iron tablets manage it well. I just wish they actually treated it too, as in you could take an iron regimen and things actually improved, but that never happens.

I got some bile dumping when I first lost my gallbladder (that always makes it sound like you misplaced it in a car park!), but it was only triggered by things like chocolate or cheese or fried food. It didn't last long. A long time ago now, but I'd guess about 2 months? I actually liked it because it was a nice change for me, after that I went right back to my classic (chronic) constipation. That hasn't got better with time! Whatever makes my gut unhappy has been doing it since I was about 14. I got an anal fissure when I was somewhere between 15 & 17, and I was only a few pounds overweight then, and fit, so it has never been diet, lifestyle or weight that caused it in me, although I'm sure things I've done since haven't helped! But docs aren't interested in ancient forever symptoms like your gut NEVER working - constipation is just something people get - yeah, but ALL the time?

I've never heard of the hepcidin thing though. I'm going to look that one up right away - thanks for the heads up! I spend months at a stretch sometimes trying to link up pieces in my health puzzle, but nothing is ever concrete enough, so I give up in disgust for 6 months until I fall over something new that piques my interest because it feels like another piece, then I exhaust that and give up again, but I STILL feel there is an overarching 'thing' wrong with me, if I could only see what the damn thing is!

in reply to Chancery

Well for you and I if there is a connection between our illnesses I would point the guilty finger at our gut microbiome which includes not just bacteria but fungus and viruses as well. All play an important role and are generally welcome guests except when they're not if that makes any sense. For me it's not so much a constipation issue as a motility one. From mouth to the finish line nothing seems to move right or coordinated - meaning in one direction. With that said over the decades I've found a few things that help beginning with more vegetables and fish and less of everything else. Then taking a tablespoon of "insoluble" fiber. The only insoluble fiber I have found is called Unifiber. Causes no bloating and helps with constipation. The other things that seems to work (sometimes) is Pantethine (b5). I also take a small amount of B6 and acetyl l carnitine which are supposed to be pro-motility and I really can't say for sure. The only time my intestines ever felt completely normal was during a trial run of anti-virals/anti-bacterials I was taking for another condition. I was taking Artemisin and USNEA and relief was within a few days. Please don't try any of this stuff without researching it, especially the last two. My colonoscopy revealed a somewhat redundant colon which I'm sure doesn't help my motility issues. My spouse also has a redundant colon without any motility issues so can't completely blame that. The fact that the anti-virals/anti-bacterials helped the motility (and I wasn't taking it for that) leads me to believe there is a micro-organism connection for me.

Chancery profile image
Chancery in reply to

Just had a look, Eitheror (thanks again!) and it's really interesting. High hepcidin can be caused by inflammation. I wonder if my current nightly RLS is something to do with the fact that my whole body feels inflamed. I hurt my back badly 3 months ago and despite the injury itself being better, although not healed, the rest of my torso has got sore, I assume from over compensating, and any level of standing or, God forbid, bending or lifting, and it's burning hot all over. It literally aches from my neck to my thighs some days. So I'm guessing my inflammation is very high. I'm kind of cheating here because I had to take steroids about a month back, only for 5 days, and the effect was amazing. Suddenly I could move again and felt like getting up in the morning, and, and, and... I could see, after I came off them, why some people find them addictive. Feeling that good would be something else! The only trouble is, what do you do about high levels of inflammation? Your body is kind of in control of that, and no amount of Turmeric eating is going to change that!

Graham3196 profile image
Graham3196 in reply to CORFUORBUST

Perhaps Coeliac UK know what's good for Coeliacs but don't know much about gluten and RLS. It probably doesn't affect everyone but I am sure it affects me and therefore it probably affects some other people.

Have you tried an iron infusion? Perhaps you will get some relief if you get your ferritin up to 300 or so.

Cheers

Graham

Chancery profile image
Chancery in reply to Graham3196

Absolutely Graham - they recently told me that there was no connection between oedema and breathlessness and Coeliac, but oedema is actually mentioned commonly in research from coeliac specialists like Sheffield and breathlessness is a prime symptom with iron and B12 deficiency, both of which are common in long-standing undiagnosed coeliac disease, so their expertise, at least of the volunteers (?) who are answering their emails, is not to be taken as gospel.

As for the iron infusion, I am definitely tucking that one away for future use - I don't know if the NHS (in the UK) does that but no harm is asking!

CORFUORBUST profile image
CORFUORBUST in reply to Graham3196

Hi. You are probably right, I only state what they say and do not necessarily agree with them on this, or on many other things, truth be told.

I had the blood test for ferritin and I was 178 and they asked me if I took iron supplements as it was so high. I said no. They said my iron was fine.

I have had struggles and am now starting to get to grips with diagnosing myself and treating myself too. I am looking into getting an iron infusion and getting B12 injections, hopefully I will get some relief. I must say the melatonin is quite good for putting me to sleep, although when the RLS and PLMD is bad I obviously still wake up all night long.

Cheers to you too :)

Graham3196 profile image
Graham3196 in reply to CORFUORBUST

From all that I have read in the last few weeks about ferritin I think its worth bringing your iron infusion forward to get your level up to about 350. Who knows, that might be the only thing you have to do to find a good nights sleep.

Cheers

Graham

CORFUORBUST profile image
CORFUORBUST in reply to Graham3196

Thanks for that info and I will definitely try to get that done.

involuntarydancer profile image
involuntarydancer in reply to CORFUORBUST

Corfuorbust, I have read a number of people say that melatonin adversely affects their rls so you might try discontinuing that for a few days to see if there is any correlation.

Also given the severity of your symptoms I wonder are you one of the small numberb who augment on tramadol. It might be an idea to try a different opioid such as OxyContin to see if that makes a difference. Your symptoms are too severe - they will cause you to be very sleep deprived which, in a cruel irony, exacerbated the rls. If you got the symptoms under control you might find that the rls settles down and you don’t need so many drugs ultimately.

Also have you had your serum ferritin checked? It should be over 100 (not just ‘normal’ which can be as low as 20). Raisingviron levels frequently results in a considerable improvement.

CORFUORBUST profile image
CORFUORBUST in reply to involuntarydancer

Hi

I did not know that about the melatonin and so far have found it to be very good at sending me to sleep. I do know that I still have RLS quite severe at times but, mainly I wake up all through the night so I am sleep deprived and have migraines when I wake up. I did recently run out of the tablets and had to wait about 5 days to get them as it was a bank holiday and it was terrible. I was back to not being able to sleep at all and being awake all night and then falling asleep all day. When I went back on them, after a few days I was back to how I am now, which is able to fall asleep most nights.

I have also come off the tramadol over the years at various times and for various lengths to see whether that was causing me more problems. I was desperately in so much pain that I did not last more than 2 weeks without the tramadol and could not do no more and succumbed back to it. I have noticed from other users that they have augmented on it and I suppose it would not hurt to ask the GP for something else.

My first serum ferratin was 178 and the most recent one I had was 161. The GP has said no iron supplements are necessary and that was also said at the sleep clinic 2 weeks ago.

Thanks again for your answer. :)

Chancery profile image
Chancery in reply to CORFUORBUST

I found melatonin quite useful too, Corfu, and it didn't give me RLS or worsen it. However, I prefer good high dose Valerian - that's my 'alternative' drug of choice to help me sleep, although truthfully there is nothing I can take, except maybe Diazepam - which doctors won't give you - that can actually be relied upon to send me off.

P.S. Migraines are related to trigeminal neuralgia, I suffer form both - so that's another neurological connection for you!

CORFUORBUST profile image
CORFUORBUST in reply to Chancery

Thanks for the info, I will look into all of that.

I just yesterday found something about how both gluten and casein (milk protein) can wreck your gut and trigger all kinds of trouble including RLS. The gut biome is becoming a focus issue- it affects so much of your health. Will be interesting to see where research takes this. What's With Wheat is a good documentary on Netflix.

Chancery profile image
Chancery in reply to

Hi Iv2sew, funny you should bring up casein. I've found A2 milk, which has a different milk protein that is more easily digested much less likely to irritate my IBS than ordinary milk. Likewise, chocolate (especially dark) irritates my gut something awful (it actually caused my first full IBS flare) and apparently it contains a very similar protein to gluten. It's a funny old world, food!

in reply to Chancery

A2- I'd heard about that awhile back but forgot. Thanks for the memory jog!

BoldMove profile image
BoldMove

I have latent celiac meaning it was adult onset caused by gallbladder surgery. There is a neurologic component that accompanies latent onset celiac. With me it turned out to be RLS. I am as GF as humanly possible, it makes no difference in my life.

Chancery profile image
Chancery in reply to BoldMove

I'm absolutely fascinated, Boldmove, how was your "latent celiac" caused by gallbladder surgery? Did a doctor tell you this and was it a doctor who diagnosed you with the latent coeliac? I've never heard of either of these things - I'm a gallbladder casualty myself - so I'm intrigued. Did s/he also say that there is a neurologic component that accompanies latent onset coeliac? Again, I know of the neurological things that occur with coeliac (although they seem to be finding new ones every day!) but I've never heard of it being connected particularly to latent onset. Tell me all...!

BoldMove profile image
BoldMove in reply to Chancery

First of all I went into surgery never having the first sign of CD. I work up with GERD, but didn't know what it was, then after about 2 or 3 months my finger nails turned to paper, hair falling out, stomach pains, gassiness, stomach pain, migraines, rashes, and many more symptoms. I researched each symptom individually, the common thread was CD. I immediately had the colonoscopy and blood tests and it was positive. Also before GB surgery my ALP was normal, after the GB surgery it was high. I had a fractionated test which showed it was coming from the intestine - another CD marker.

I have an official diagnosis of CD and RLS. I belong to numerous CD sites such as Beyond Celiac, Gluten Free Works and Celiac.com. Celiac.com collects every item of research done on Celiac and there is an extremely strong link between CD and GB surgery. Before I read about GF being a specific on Celiac.com, I saw a ad for a symposium on stomach surgery as a catalyst for CD. I went and their contention and "violent stomach surgery" can be a trigger.

I later researched using Celiac disease RLS connection and came up with articles on it.

This is all I have time for - as you may understand coping with both CD and RLS, I cook everything from scratch to stay healthy and RLS is my nightmare that slows me down in the daytime. I don't want to live on GF junk food.

Chancery profile image
Chancery in reply to BoldMove

Thanks a lot, Bold, that's riveting stuff. I hadn't heard of the gallbladder connection so I'm going to look into that now - thanks for alerting me to it! It never ceases to amaze me how much stuff can slip under the radar even when you are researching diligently. My IBS became a proper 'thing' after I had my gallbladder removed. Before it was just a spastic colon and attendant constipation along with bloating and a LOT of gas. Afterwards it was much worse reflux, Sphincter of Oddi problems, constant bloating, pain on defecation and alternating runs and constipation. So the operation definitely acted as a catalyst for worsening problems, but I just put it down to Cholecystectomy Syndrome. Makes you wonder how many people have been diagnosed with the Syndrome when they've actually developed another condition like coeliac!

BoldMove profile image
BoldMove in reply to Chancery

I have an extremely busy week. If you don't find the connection/research between the 2, get back to me over the weekend and I'll see if the article is in my archives. Though, I'm sure just doing a search for gallbladder celiac connection. We spell Celiac differently here and I think it was a US study.

Chancery profile image
Chancery in reply to BoldMove

Will do, Bold, thanks again!

CORFUORBUST profile image
CORFUORBUST in reply to BoldMove

Wow, I have had my gallbladder removed too, mind you it was only 4 years ago. Maybe that is what caused my RLS as I was already diagnosed CD with adult onset CD due to trauma from surgery.

Chancery profile image
Chancery in reply to CORFUORBUST

Yes, apparently there is a strong link between gallstones and coeliac - CD causes the gallbladder to slow right down, hence stones being formed - yet there's no mention of it on Coeliac UK and certainly, although I had IBS and low IgA, me getting gallstones never made any doc suggest a gluten connection or test me for coeliac. I've had to ask for every test I've ever had, and occasionally fight for them too!

BoldMove profile image
BoldMove in reply to CORFUORBUST

In the most compelling research article I read, the researcher said he and his colleagues could not yet determine which came first, A-symptomatic (showing no symptoms) CD causing the gallbladder to go bad, or the GB becoming diseased and causing the CD. On the run - can't write more.

Chancery profile image
Chancery in reply to BoldMove

I don't suppose you can remember the article, Bold, or have a link for it? I'm having a hard time getting my head around the idea of gallbladder illness or removal triggering CD. I've no idea how that would work!

BoldMove profile image
BoldMove

I did a quick search, u can google variations of what u r looking for yourself and come up with more.

this will get u started.

The Link Between Gallbladder Disease and Gluten Sensitivity

thepaleomom.com/the-link-be......

If you have been diagnosed with gallbladder disease, it is important to investigate gluten sensitivity or celiac disease as the possible cause.

Celiac Disease Linked To Gall Bladder and Liver Problems ...

glutenfreesociety.org/celia...

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Celiac testing is too inaccurate and ... Linked To Gall Bladder and Liver Problems ... on computer and saw that there was a link to gallbladder problems and ...

Gall Bladder Disease and Celiac Disease - By Ronald Hoggan

celiac.com/articles.html/ce...

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Have been tested prior to the celiac diagnosis for gallbladder disease but the scan did not prove any ... I decided to check to see if there was a link to celiac.

The Link Between Gallbladder Disease and Gluten Sensitivity

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Guest Post:

The Link Between Gallbladder Disease and Gluten Sensitivity by The Paleo Mom ... There is a strong link between gallbladder health and celiac disease.

The Link Between Gallbladder Disease and Gluten Sensitivity …

lifewithnogallbladder.com/a... ...

We use “gluten intolerance” when referring to the entire category of gluten issues: celiac disease, non-celiac gluten sensitivity and wheat allergy.

How Celiac Disease Can Affect Your Gallbladder

verywellhealth.com/how-celi... ...

It's not unusual for people with celiac disease to report having problems with their gallbladders. As it turns out, the link between celiac and gallbladder issues may not be just an anecdotal one: several studies have linked celiac disease and certain types of gallbladder disease.

Why Liver Problems Require a Look at Celiac Disease ...

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Gall Bladder Disease and Celiac Disease - By Ronald Hoggan

celiac.com/articles.html/ce... ...

Due to an apparent link between the two ailments, those with liver disease are advised to be evaluated for Celiac disease, and vice versa.

Long-Term Health Conditions - Celiac Disease Foundation

celiac.org/celiac-disease/u... ...

Long-Term Health Conditions. ... couple of decades have suggested some link between ... even suggest that celiac disease is the cause of gallbladder ...

Gallbladder Symptoms And Menstrual Cycle - celiac.com

celiac.com/forums/topic/729...

Chancery profile image
Chancery in reply to BoldMove

That's great, Bold - thanks a lot! I'll have a good read through those.

gypsymooms profile image
gypsymooms

My son swears that it is the gluten! He is gluten free and it has made a big difference. But everybody is different.

Chancery profile image
Chancery in reply to gypsymooms

They are indeed. Looks like I'll have to try Gluten-free sooner or later!

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