Gluten free anyone?

[Allyp69]

Just met my 2nd cousin who also has RLS like me. She is convinced going gluten free has stopped her RLS....I'm not sure about gluten but does anyone else think gluten could be a trigger for RLS??

[SueJohnson]

Some people find their symptoms eased by a gluten free diet. You can certainly try it.

[Joolsg]

Everyone is different. Some people do find elimination diets help.If you decide to try diet, eliminate one food or drink at a time for 4 weeks. Otherwise you will not know which food is the trigger.

There are several 'diets' that work for some people. Paleo, low Fodmaps, low carb, low oxalate.

I've personally tried them all for very long periods. I was gluten free for 15 years for my MS. It made zero difference to my RLS.

If you do have gluten intolerance, your gut will be inflamed and will not absorb iron, so that leads to low brain iron. Low brain iron is the main cause of RLS.

I suspect your cousin has low serum ferritin and would benefit from taking gentle iron ( ferrous bisglycinate) at night.

Ask for full panel, morning, fasting blood tests to include serum ferritin. If your serum ferritin is below 100, your RLS will.probably improve by taking iron supplements.

Also suggest blood tests to your sister.

Look at the RLSUK website. All the information is there.

[RCHD in reply to Joolsg]

Ferritin tests need to be fasted for? I asked and they said no ?

[Birdland in reply to RCHD]

My GP and Hematologist both say fasting is not necessary. I’m also wondering where the truth lies.

[RCHD in reply to Birdland]

Yes I was actually told to not do it while fasted, my husband as well. So I’m wondering too .

[Munroist in reply to RCHD]

For my blood test which measured ferritin, TSAT % and serum iron I wasn’t told to fast and then when I turned up they said I should have fasted and I had to reschedule. They didn’t seem clear about the second time. I suspect it’s optional for some blood tests and possibly the admin staff get mixed up. Best to ask the surgery.

[RCHD in reply to Munroist]

My husband who has the RLS was told by his neurologist at that time fasting isn’t required for ferritin. I just happened to have mine recently tested , at a blood lab and they also told me the same.

[RCHD in reply to Munroist]

Mayo Clinic says if you are only doing a ferritin test, you may eat or drink normally beforehand.

mayoclinic.org/tests-proced....

[Joolsg in reply to RCHD]

At the RLSUK on 7th October, both Professor Walker of Queen Sq Hospital AND Dr Jose Thomas of Gwent Sleep Clinic confirmed that FASTING morning blood tests are required.If it's between a GP, Surgery receptionist and two experts in iron treatment for RLS, I choose to follow the experts.

[SueJohnson in reply to RCHD]

You do need to fast after midnight.

[BoldMove]

I have Celiac disease and have been as scrupulously GF as possible. Being GF has not made any difference for me.

[Jumpey]

I have tried being gluten free.It did nothing to improve my RLS sadly.

[67Waterman]

Like Jools below, I came off gluten for two years at the beginning of 2020 because I suddenly found myself suffering from chronic fatigue, and thought it was gluten intolerance (it turned out it was long Covid ....). But being gluten free made absolutely no difference to the intensity of my RLS.

[Helthom]

I have severe RLS and am currently taking Ropinerole 2mg at night with occasional 0.25mg as required when flying or napping during the day. I find if I eat a lot of gluten - usually bread - it brings on RLS soon after. RLS is the bane of my life.

Sending love and empathy to all fellow sufferers ❤️

[Joolsg in reply to Helthom]

If you're taking an extra 0.25 in the day, sounds like the dreaded augmentation.Dr Earley, a top US expert at Johns Hopkins University, has recently done a video. See DicCarlsons post. Dr Earley says EVERYONE on Ropinirole and Pramipexole WILL suffer augmentation.

Look it up on here and in RLS UK website.

[ProudGreatNana in reply to Helthom]

I can sympatsympathize with you. I hate for evenings to come. I tried gluten free for a short while. I guess I didn't give it a chance. I do know I cannot eat anything w/red sauce after lunch time or have any chocolate, caffeine either. It seems to put all my limbs in motion. Sitting very long such as in the dentist chair yesterday sent them in to a tail spin. RLS has consumed any normal life! I have been reading many of the comments on here and last two nites I took vitamin B complex, D and magnesium and 2 oz. of tonic water right before going to bed. First good nites of continous sleep I have had for 7-10 days.

[DicCarlson]

Gluten is a large component in most high carbohydrate diets - breads, cakes, cookies, etc. A better option is to scale back simple carbohydrates and the associated gluten. Keto and Paleo are 2 options with low carbohydrates. Granted they both are difficult to follow, but as Christopher Palmer describes in his new book Brain Energy - keto is a game changer for many mental health conditions. (BTW - not a self-help book, but rather a treatise on metabolism research and mental health). Since RLS has a metabolic/gut health component for many, it is probably worthwhile to explore dietary interventions. Many podcast links on his website...

brainenergy.com/

[Allyp69]

Thanks so much for all your advice etc about gluten, fasting , iron etc...really appreciate it.I will do more research and decide what to try. In the UK I've never had a GP prescribe any meds for RLS...quite relieved when I read about augmentation etc..But, as I keep saying, we need to find the real cause and an actual cure!!

[CORFUORBUST]

I am a coeliac and have been gluten free for 20 yrs. It makes no difference to my RLS. Many people recommend going gluten free without the facts. It does help some people with other auto immune diseases but, unfortunately, not RLS/PLMD.

[BeachGolfer]

I questioned if gluten exacerbated my RLS. I finally came to the conclusion that it was not the gluten but the simple carbs ( white flour, white pasta, pizza and of course sugar) that triggered restlessness enough to override the oxycodone that I take. For example I found that I can’t eat white flour pasta but I can eat a small amount of brown rice pasta not because it’s gluten free but because it’s not a simple carb. Hope this helps you figure out your triggers.

[LoisTonya]

I am gluten intolerant so have a completely gluten free diet. I also have RLS.

[Eryl]

I suspect that is't not the gluten that's directly causing the RLS but the starch in the foods containing gluten. Starch metabolises into glucose which causes systemic inflammation and the gluten causes leaky gut which speeds up the starch's absorption giving a greater spike in blood sugar and causing more severe inflammation causing hypersensitive nerves and RLS

[Hidden]

I tried a gluten free diet for nearly 6 months. I didn't notice any effect on my RLS/PLMD.

I try to follow a low glutamate diet which seems to help a little, especially with RLS.

The cleaner my diet the better.

[nocturne]

I was diagnosed with celiac more than 20 years ago, so have been on a gluten-free diet ever since. My RLS started well after that, so in my case, being gluten-free has made no difference. That said, many people I know who don't have celiac have experienced better overall health by eliminating gluten, so it wouldn't hurt to try.

[ProudGreatNana]

I can't say it has trigger ed mine but my son is mostly gluten free. If he eats pasta or bread that is not gluten free, his joints ache for several days. He says they ache and there is a heaviness to them. Like he is dragging aroung cement in them. I am going to try the gluten free diet because I feel the gluten is contributing to the achiness I have along w/the restlessness with my RLS