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Restless Legs Syndrome

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Food allergy tests that might help with an anti-RLS diet??

UsableThought profile image
9 Replies

I have previously expressed skepticism on this forum about using diet alone to not just lessen, but completely eliminate RLS. For myself, I know that certain foods are no-nos, e.g. balsamic vinegar or anything else with added sulfites; chocolate; and a few other items. On the other hand, some years ago I ate a paleo diet for some time - no grains, no nightshades, no wheat, no dairy, no soy - but it made no difference.

And yet I just came across this article by Janice Hoffmann, former RLS Foundation board chairperson, and I am quite struck by her assertion that food allergies testing led her to a diet that completely eliminated RLS:

rlsfoundation.blogspot.com/...

The thing is, she doesn’t say what type of testing she had done. There are many methods available; plus, if you read up on this subject, you find that experts say such testing is extremely imprecise. A more accurate approach is said to be an elimination diet - but that seems like it would be really, really difficult to carry out in a rigorous way.

So I’m curious to know if anyone has tried allergy testing on a wide range of foods to identify possible diet triggers of RLS, as opposed to just eliminating the more common triggers such as caffeine etc.?

Or for that matter, has anyone done an elimination diet for the same purpose?

And with either, how did it work out?

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UsableThought profile image
UsableThought
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9 Replies
ChrisColumbus profile image
ChrisColumbus

This doesn't directly answer your question, but I know people who've had allergy tests which suggest that they really shouldn't eat anything. Which I guess is a solution of a kind!

You'll know that there are some prominent members on here, such as Joolsg , who have tried several strict diets without any impact on RLS.

And others such as Eryl who have successfully eliminated RLS by excluding quite a wide range of foodstuffs.

On the other hand, there are people like me who have eliminated RLS by just making a handful of changes to diet, simply identified by matching inputs against symptoms (e.g. a food diary, although I didn't formally do so), alongside other simple changes.

(See profile if interested, but note that I'm not promoting anything I did, just an example of what worked for one individual).

But having said that, I've never had low ferritin, and perhaps most importantly never damaged my system with dopamine agonists: I have an untested theory that the latter makes it very difficult to eliminate RLS without another medication.

And of course, as you'll know, there are many prescription and OTC meds and supplements that trigger or exacerbate RLS other than statins. Luckily I don't take any of them (except one night in the last week where I took Night Nurse in desperation, and suffered one of my now very rare bad RLS nights).

nocturne profile image
nocturne in reply to ChrisColumbus

I loved reading your description of people "who've had allergy tests which suggest that they really shouldn't eat anything." I've had no allergy tests, but just about everything I ingest causes my autoimmune arthritis to flare. The only time I was pain-free was when I fasted. I was on an anti-inflammatory diet for 9 months recently, which helped my arthritis a little (and I mean little), but had zero effect on my RLS. Thank you for acknowledging that everybody reacts differently.

Joolsg profile image
Joolsg

I had kinesiology testing decades ago when first diagnosed with MS. Not as rigorous as full food allergy testing.As ChrisColumbus mentions, I tried several very restrictive diets for long time periods. Paleo, Low Fodmaps, Vegan and I was gluten free & saturated fat free for 14 years after MS diagnosis.

Diets made zero difference to either my MS or RLS.

However, many people clearly DO have dietary triggers. Finding them is the problem.

There are some who find sugar is a trigger, others alcohol, others coffee.

I never had caffeine in my diet. I hated coffee and used to drink hot water.

I read on here that someone drank coffee when experiencing an RLS attack and it reduced the symptoms. So, around 2017 I started to drink coffee. And it helped.

So I now drink at least 6 cups a day.

We really are all different when it comes to RLS.

There are certain meds that work well for many, but not for others.

Good luck in your search.

You may not have any triggers.

Goldy700 profile image
Goldy700

I have had RLS since I was in my 20's - over 50 years - it has gradually become worse and I got full body RLS in my back, legs and shoulders. I have been curious about diet and RLS forever and as a result have been eating a very clean organic diet, lots of vegetables, no vegetable oils, some fruit, eggs, meat fish etc. I was still finding my RLS was getting worse. I was fascinated listening to a podcast on keto diet and as a result started watching videos by Dr Ken Berry, Dr Chaffee, Jordan Peterson, Dr Baker, Dr John Burke, Dr Georgia Ede (nutritional psychiatrist) Dr Ben Hickman. They advocate a keto diet, carnivore, and Lion diet for any illness that involves inflammation, allergies, weight gain, etc and the most powerful to eliminate food as a cause of any problem is to go on the Lion Diet. This involves only eating high fat meat, salt for a time to see if you get any improvement. The reason to eat just meat is it is one of the least allergenic foods and does not contain any of the lectins, phytic acids (grains) oxalic acid (most vegetables) pesticides, fungicides. I tried this and to my surprise my RLS substantially reduced and is now so much better although I still get it mildly. I was taking iron pills before so not low in iron - but I think the heme iron in the beef is a very absorbable form. I have been eating low oxalate, low lectin veg with the meat and my RLS although not as good as when I was on the pure Lion diet is so much better than when I was eating loads of vegetables and carbs. I would advocate listening to some of the doctors listed above and consider whether you might like to go on an elimination diet for a time to assess.

Eryl profile image
Eryl

An allergy is an "Immune system response to a substance that most people tolerate well" whereas rls is caused by anything which causes inflammation in the nerves, which is not the same thing

There are tests which could be helpful but they're not for allergies. youtu.be/d_E4ekxzzlg?si=ywL...

Restless10 profile image
Restless10

My wife spotted a connection between increased vegetable consumption and my RLS.

It turned out to be a sensitivity to a chemical spray used on commercial vegetables.

Which one? There are 100s of possibilities

I now eat only organic vegetables and my RLS is 90% gone

What is the other 10%?

The odd ice-cream? Pastry? Do not know yet

amrob123 profile image
amrob123 in reply to Restless10

That's a remarkable discovery on your wife's part. What a great outcome for you.

amrob123 profile image
amrob123

I had food sensitivity testing done eons ago. The foods that were identified as problematic aren't ones that trigger RLS.

The testing didn't identify the foods that are actually problematic for me (eg ice-cream, excess sugar, parmesan cheese, most Asian style sauces and other high glutamate foods).

I have found that when i follow a whole foods diet (negligible sugar, limited grains and only wholegrains, fruit, veg, clean dairy, fish, chicken and meat, no processed ingredients, no additives etc) i don't or rarely experience RLS. I still have periodic limb movements however.

If you don't want to do a true elimination diet, you could start by adopting a whole foods diet and seeing if it reduces your symptoms.

Obviously different people find that different diets work for them, however i find this a relatively straightforward diet to follow and is good for general health anyway.

Mongolia2020 profile image
Mongolia2020

I have been working on an elimination diet, but it is really hard. I strongly suspect oxalates or sulphites, or both, but it is proving difficult to be sure as they are in so many foods.

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