Success.. 3 months now without RSL after food intolerance diagnosed

[anitasancha]

After being diagnosed with ME and low iron.. I had a food intolerance test ... I had 19 really bad food intolerances. ...Including dairy yeast, gluten, wheat soya. My doctor could not understand why iron was not being absorbed. The food was just passing through in my opinion, I now eat a very strict diet and I am sleeping like a baby. But I now can tell if there was any missed yeast in my diet that I had not noticed, i.e. hidden vinegar or yeast hydrolised veg protein, or mouldy food, as I get little bit of RSL. So I advise get a food intolerance check.... I bet this is a candida problem with yeasts.. a leaky gut letting poisons in...

[Hidden]

RLS is a neurological condItion, i have Primary RLS, the type that is hereditary, and i have very low iron, due to having very low Ferritin levels, so my body doesnt store the iron very well.

jean

[Hidden]

Some people are lucky to find out what causes their RLS, It doesnt follow for everyone. I also have Primary RLS, inherited.

But i am pleased you have found the answer for your RLS.

[BobM in reply to Hidden]

Not familiar with term Primary RLS, what do you mean?

Kindest

Bob

[Hidden in reply to BobM]

hi Bob, basically it means that it runs in your family, as it does in mine, mum my son and i have it.

jean

[BobM in reply to Hidden]

Thanks Jean

[Hidden in reply to BobM]

your welcome Bob, just read another one of your posts, wow your taking a lot of meds there, i was taking 900 gabapentin at night, but ive cut it down now, terrible weight gain with it, and noe i just take 300 at night, it helps with the sciatica.

jean

[BobM in reply to Hidden]

Yeah I am on a lot and that was just for the RLS!! I am loathed to mess with any meds as after 4 years I seem to have found a working level. . A Dr removed (interfered!) the Pramipexole 3 years ago and it was hell. And like you these meds also assist with my sciatica.

What causes you most trouble? RLS or Sciatica?

Kindest

Bob

[Hidden in reply to BobM]

i thought i answered you this morning Bob, oh well, never mind.whats worse rls or sciatica, well the rls i think, because how ever my other problems are, if the RLS plays up, it seems to set everthing else of, and i allways wake up with bad Sciatica, in the early hours.

jean

[BobM in reply to Hidden]

And there is the issue, RLS is worse, thats the same with me. Whenever I ask an RLS sufferer with multiple prolems ( we all seem to have) RLS is almost always top of the problem list, yet I dont feel the NHS give RLS the same priority?

Kindest

Bob

[Hidden in reply to BobM]

You are sooo right, Bob. I have RLS and Ms. The RLS is far, far worse for me.

[KellyDBrille in reply to Hidden]

Even with so-called 'familial' or Primary RLS, some nutritional or supplement treatments can help. Like FOLATE:

pubmed.ncbi.nlm.nih.gov/176...

[anitasancha]

I asked if there were any surveys, but the pharmaceutics industry makes no money out of food elimination... but here is part of a report. maybe this is helpful.

Display Settings: Abstract

BACKGROUND:

METHODS:

RESULTS:

CONCLUSIONS:

Sleep Med. 2011 Jun;12(6):610-3. Epub 2011 May 13.

Restless legs syndrome is associated with irritable

bowel syndrome and small intestinal bacterial

overgrowth.

Weinstock LB, Walters AS.

Department of Internal Medicine, Washington University School of Medicine, St. Louis, MO, USA.

[e-mail]

Abstract

Restless legs syndrome (RLS) is linked to gastrointestinal

disorders. The prevalence of irritable bowel syndrome (IBS) and small intestinal

bacterial overgrowth (SIBO) in RLS patients was determined.

RLS subjects were recruited from unbiased ads that did not mention

gastrointestinal symptoms. RLS diagnosis was confirmed by a neurologist and

utilized the International RLS Study Group criteria. General population controls

(GPC) were spouses of gastrointestinal clinic patients and were excluded for RLS.

Completely healthy controls (CHC) were excluded for RLS and gastrointestinal

symptoms. IBS was diagnosed by Rome II criteria. SIBO was diagnosed by the

lactulose breath test (LBT).

There were 32 RLS subjects (23F/9M; 57 yo), 25 GPC (13F/12M; 58

yo) and 30 CHC (19F/11M; 44 yo). Twenty-nine had RLS unassociated with other

GI diseases, one had celiac disease, and two had gastric resections. IBS was

diagnosed in 28% of RLS subjects compared to 4% GPC (p=0.0317). SIBO was

diagnosed in 69% of RLS subjects compared to 28% of GPC (p=0.0033) and 10%

of CHC. Using a false positive rate of 10%, 59% of positive LBT results are

associated with RLS.

IBS and SIBO are common in RLS. Three hypotheses

developed are (a) RLS patients are selectively immunocompromised or genetically

predisposed and thus more subject to SIBO; (b) SIBO leads to autoimmune

changes, and subsequent auto-antibodies attack brain and/or peripheral nerves

and (c) SIBO inflammation leads to increased hepcidin and CNS iron deficiency

which, in turn, leads to RLS. These hypotheses bear further investigation.

Copyright © 2011 Elsevier B.V. All rights reserved.

PMID:21570907[PubMed - indexed for MEDLINE]

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Restless legs syndrome is associated with irritabl... [Sleep Med. 2011] - PubMed - NCBI Page 1 of 1

ncbi.nlm.nih.gov/pubmed/215... 1/18/2012

[Hidden in reply to anitasancha]

hi Anita, well we are all so different, ive had RLS since i was 19, im 63 now, and never had any food allergies, or IBS. no wonder they havent found a cure yet,

jean

[KellyDBrille in reply to Hidden]

One can have SIBO without ANY symptoms. Same with food allergies, especially if the reaction is delayed.

[Hidden]

Interesting. Thanks.

[Kaarina Administrator]

Hi Anita

It is great that you have found a solution to your RLS. It is interesting but unfortunately it would seem there appears to be no cut and dried rules that apply. Worth looking into for anyone who would like to rule it out though.

When my RLS started in my late teens, I had no IBS. Only in the last two years was I diagnosed with IBS D but no allergy to products containing gluten although it was suggested to me that for breakfast to go for cornflakes or rice crispies rather than wheat cereals. I was put on Amitriptyline (25mgs) for about a year, came off it and 99.9% of the time I am fine. If I have the occasional blip I take imodium. I still get the RLS though but this has always been intermittent so I am one of the lucky ones. Very recently the jerking of the legs started but only since a spinal operation and the jerking has much improved in the last 6 months. I have not been on any medication for RLS.

Kaarina

[lainey2465]

It's great to hear all the possibilities of what it could be. I've had mine for well over 30 years and I've not yet found out why I get it. It might be an idea to do a test! Thank you. Laine

[anitasancha]

Hi all, thanks for your comments, I understand that there may be an issue for many RSL that this may not help but it is without doubt that this has made a difference. I would also state that iron appears to be a key factor. Even if tablets are taken or Floridix this must be up to a good level,

I have had RSL for about 15 years. I was working in my factory I was always eating white sliced bread butter and marmite as snacks. I grew tired was often very thirsty and in the end was given amitriptiline, for the RSL after 2 years I got excessively thirsty with this drug, 11 mugs before lunch time so the Docter withdrew this. About 10 years ago they could not find anything wrong as ME was decided upon as well for the tiredness, migraines, thirst, could not concentrate. When I was on the ME group help with the NHI, I discovered the effects of just eating better, for about a year I tried a sort of elimation diet, but I knew I felt better but could not pin point the actual foods. Now this will seem strange. at the same time I was getting excessive flatulence about once every 5 mins and this has been going on for the full 10 or so years as well. If the flatulence was bad so was the RSL, the Docter just laughed at me......... she said there was no connection.

Anyway after ages trying to work out what food was the problem I had a food intolerance test, not on the NHI they don't believe in this, I went to the York testing is one of many and did a blood private blood test. (must be a blood test) for IgG antibodies, I gave it to my self as a Xmas present. So 19 foods for me this was dairy, yeast,gluten,kidney beans,soya,sunflower,wheat,coca bean,coffee,cola nut,haricot bean,hops,lentils,tea,. ... I was amazed, no wonder the food elimation was so difficult to pinpoint,. Now the interesting thing is food intolerance leads, to LEAKY GUT, , you can find out more on the internet.. The undigested food particles get into the blood stream along with other chemicals added to processed foods, so I now cook EVERYTHING for fresh and raw. I get no migraines, thirst is normal,.... and RSL gone. If I have even an egg cup full of wine of larger, the RSL starts again. I have to stick to the diet for about a year so that the leaky gut repairs and all this does not go into the blood stream. But it is the yeast intolerence that's the one to watch... the vinegar, the wines, the soya the hydro yeasts in all salty stock cubes, .... this is the candida, out of balance. I take probiotics each day to try and balance this.... if it is out of balance the flatulence builds up the head aches, and the first and the RSL .

My iron was not being absorbed and after 2 years on Floridix still making no difference I went for the tablets, I eat much less and the body is now hopefully absorbing this properly. the iron must be got up to normal, if you are not absorbing it, then this may be a reason. This takes time but after 3 months, I am sleeping for hours and hours, I have lost about a pound a week in weight, I am running about again, I am 62 and feel like 42 again, after a lost 15 years of RSL.

hope this helps... go for the best orgainic, non additives and learn to love salads, veg stews, and very plain cooking. who ever you are.... don't let chemicals into your blood stream, aflatoxins are found in many cancers, how did they get into the body in the first place, food intolernace = leaky gut = chemicals and yeast into bloodstream = candida..... yeast is the problem I believe, .... but this is only my story.. also you my want to cheack out the PH levals of the food. again you can find this on the internet... Anita

[sleepdeprived]

hi just had more reading and i am goin go ask my gp to do a test for vitamine D.i read it can be a cause of RLS

[janland]

Hi..I'm very interested in your post about food intolerances..

Can you tell me more please?

I am suffering really badly with rls.. hardly any sleep.

Thanks Jen.

[Leelee49 in reply to janland]

Hi jen. I don’t know if you will get a reply, only that post was 6 years ago. Maybe they still come on here though hopefully.