Posted by: eaubeauhorn | March 9, 2008

Restless legs syndrome

The purpose of this post is that people searching on RLS or restless legs syndrome could possibly benefit from what I have found that helps me.

After reading somewhere on a message board that gluten could be a causal factor in RLS, I gave up gluten a year ago. I had a distinct lessening of symptoms. Last summer I noticed that within an hour after I ate dairy, I had a very bad flareup of RLS symptoms, so I gave that up too.

I don’t have “just” RLS; it started out that way, more maybe more technically as a combination of RLS and nocturnal myoclonus, but it progressed over a few years to a combined mental/physical syndrome of much greater impact that a simple set of uncomfortable senations in the legs. Without medication, my body has an uncontrollable jerk, (think of a full-body hiccup) every four seconds, around the clock. In addition to that, there is a mental/emotional/psychological symptom that is almost indescribable; it is a feeling of “going crazy,” of extreme frustration, of literally wanting to pound my head against a wall to make it stop. As described below, I assign this full set of symptoms to something I label a brain allergy.

The medication I take is gabapentin; I don’t like taking it, especially since it causes me to lose my memory, but it is better than not taking it. I refuse to take parkinson’s drugs because of their association with uncontrolled gambling; I already have poor impulse control, and the very last thing I need is a drug that has a possible side effect of making that worse.

After a few months of not ingesting gluten, I noticed that eating dairy (milk, cheeze, yogurt, even goat milk) or anything containing casein (milk protein) would cause a very bad flare-up of my worst symptoms within an hour or so. And it would last a while too, 18-24 hours. So since I was eating dairy daily, my worst symptoms were being exacerbated continually.

So I gave up dairy, completely and totally.

Without gluten (wheat, oats, rye, barley, even vinegar….if you want to find out what contains gluten you should do a search on celiac sprue, or celiac) and without dairy, I was able to cut my medication in half, from 1200 mg to 600 mg.

Three supplements have also been helpful; the most helpful is to take a time-release iron supplement. There is one called Slow Fe that you can get at the drugstore; currently I take a generic form of this that I get at Walgreens, and it seems to work as well for me. Without the iron (and I am not and was not anemic) my symptoms require much higher medication to control.

Way back when I first got RLS, an ND told me that folic acid was very helpful for some people, but the amount needed to stabilize the symptoms could not be achieved via supplements and had to be done by injection for a few months to start. I took one injection, saw no change, and stopped that course as the injection was painful. Later when talking to a Life Extension Foundation physician, folic acid was again recommended, at 4 mg per day (a huge dose) and I do take that. I can tell a difference but it is slight.

Magnesium has also been helpful (Mg citrate, in either pill form or via the powdered supplement called Calm,) but if I take that in a large enough dose to do me any good, I get diarrhea so severe that I can’t leave the vicinity of a rest room. So I take Mag-Tab SR, which is highly absorbable and allows me to get the Mg I need without causing intestinal problems.

My conclusion is that my own RLS/myoclonus is a brain allergy to peptides (incompletely digested proteins) that leak through my intestinal system into my blood stream and somehow cross the blood-brain barrier. RLS is NOT a muscle problem, hence the directions to rub your legs or exercise, or whatever, are off the mark if you have severe RLS. If you have mild RLS, sometimes a change in the sensation level, such as putting on socks, or whatever, can help, but that is only because it confuses the brain enough to have an effect. Signals do go both ways.

So it appears that the problem is intestinal; it could be a candida infestation problem, causing leaky gut syndrome or a too-high level of intestinal permeability. It could be due to the very high levels of lead that are in my tissues, from some unknown source. (Note that a standard blood test for lead level will not show what is present in your tissues, just residing there from having had lead exposure; it only shows what is running around in your blood.) If all the “slots” for minerals are being taken up by a “bad” mineral such as lead or mercury, the “good” minerals such as magnesium, iron, and calcium, cannot get in those slots. Sort of like trying to find a parking space in a lot that is already full. You can ingest the minerals but they can’t get to where you need them because the spaces are full.

If in fact I am celiac, which it appears I am, at my age it can take two to three years for the small intestine to heal. Note that I have had the blood test for gluten intolerance twice, and it comes back “completely negative.” I had one doctor tell me it was very rare for so low a reactivity level to come back. However…..why the negative blood test and the reaction I have, at the same time? Science and medicine do not know everything, for sure. When I eat gluten, I get flatulence; that is one of the standard symptoms of celiac sprue. So I do not give a damn what the blood test says and I will stay off gluten. And dairy; the truth is in the observation of cause and effect.

So I am hoping that with the continued avoidance of those substances that have shown themselves to be problematic, that in time I will conquer this problem that complicates my life so much. I continue the iron, magnesium, and folic acid supplementation, I continue to take anti-candida supplements, and I continue with heavy supplementation of probiotics (currently Garden of Life’s Ultra Primal Defense.)

A major problem with having to avoid both gluten and dairy is eating anywhere away from home; restuarants are generally off limits although I have found a very few local ones whose cuisine causes no observable symptoms. Another exposure is when other people try to cook for me; often they do not understand the allergy nature of the problem, and think “oh, a little bit will not hurt her,” or “she is just a picky eater, and if she can’t taste it she won’t know the difference.” And then I have to not let them know that their food made me very ill; but I do have to find ways of avoiding having them feed me again.

If/when I find other causal factors I will post them here, and also if I do find a solution I will definitely post it here.

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Responses

  1. Hello…it’s certainly possible that RLS is related to peptides, similarly to what they think happens in autism, etc. But, anyone who reacts positively to a removal of gluten could easily have celiac disease, as you think in your case. Since blood testing isn’t 100% accurate and only an endoscopy is, even people who’ve had negative blood testing could have celiac. In one recent study, those with few or no symptoms were missed by blood tests a large percentage of time. Even a small percentage of those with severe symptoms had negative blood tests. About 90% of celiacs in the US are undiagnosed. And, many doctors (even gastros) are ignorant about the current research regarding celiac.

    While they used to think the symptoms had to be gastrointestinal, they now know that a huge percentage of people have neurological symptoms, many have RLS, and many react to dairy, too.

    Good luck with gluten free. I have a celiac in the house and we’ve been doing it for about 11 years. He still has RLS sometimes, though I have it daily (I am not a celiac and being GF does not help me). One thing you may or may not have checked is your ferritin level. Celiacs are often anemic and that in itself can cause RLS. But, for those of us without anemia, we can sometimes find great improvement in RLS by increasing ferritin levels to over 50 (which is MUCH higher than any doctor or lab thinks it needs to be). While iron doesn’t remove my RLS, I am better when my ferritin is higher.

  2. Thanks for the comment. You may notice above in my original post that I said I take a time-release iron supplement, that has been highly beneficial. However, I have found that increasing the amount of iron does not increase the benefit; back when I first had the myoclonus and before I went on the gabapentin, I could take a high dose of the time-release iron (three pills at once, when the problem was very bad) and sleep blissfully within about 30 minutes. However, at this point in its progress, that amount of iron does not help, so I take only the single dose daily. I’ve never been diagnosed as anemic, and my ferritin levels have been “within the norm,” but that doesn’t stop me from doing my own experiments. I’ve gotten much, much better results from my own controlled experiments than I have from anything else. I find that going on a particular supplement for a period of time, for example a month, and then going back off it, often will give me insight as to what it was doing, when it is stopped. I went off the iron for a week and a half recently, and the symptoms became unmanageable over that period of time, proving to me once again that the iron is doing something measureable.

    I haven’t requested an endoscopy; no point in paying for a test when I already have positive results from going off gluten. I’m that way in general with respect to medical tests; I find that symptomatic relief is much more important, to me, than diagnosis.

    Thanks again for your comment. I agree that celiac sprue is highly under-diagnosed, and most doctors when presented with symptoms that could be due to celiac sprue, don’t even consider it because the patient is not presenting with the textbook symptoms that they learned in medical school.
    EBH

  3. Aaack….sorry, I thought I was replying to Laura’s comment when in fact I was editing it. I lost her comment and can’t get it back, but I’ll still leave my reply.
    Phooey.
    EBH
    ———-
    Laura,
    I just got back to my blog after some weeks away from it. I’ll be curious to hear if giving up various foodstuffs is helpful. I find it can take a couple weeks, and often the real eye-opener is to re-start the food after being off it for two weeks, and seeing the negative result.

    My doctor has decided to agree with me that the cause of my particular problem is actually leaky gut, which is usually caused by an invasive candida infection. Since I react to a food within about 30 minutes of eating it, that indicates that it is getting through the intestine before it is completely digested; undigested proteins are called peptides, and in my case, they irritate my brain, and my brain sends out signals that give awful sensations and cause muscle jerks. The leg problems don’t have anything to do with my legs. If changing the sensation to your legs (like wrapping them or hitting them) has an effect, that could be just because the new sensory signals interfere with the signals the brain is sending out, so you feel better.

    I think an allergy to wheat is often a mis-diagnosis of a gluten allergy, and much better results will be gotten by going completely off gluten for several months. It is difficult to do, but worth it in results. I don’t bother with medical tests; I just do my own tests and seem to get more reliable results.

    Best of luck…I know this is a maddening problem. My latest reaction is to the intestinal fiber I was taking; I was about going nuts before I figured it out. Something new is always showing up for me, and I wonder if I’ll end up not being able to eat anything at all.

    EBH

  4. Hi Eaubauhorn. You are so right about the mental allergy thing. It’s like a fever with me and I’m sure it’s related to brainwaves hence the fact it comes in the middle of the night for 2 or 3 hours then goes around 4am before deep sleep.
    I’m still looking for the miracle cure. But these things work very well for me: a big mug of tea (not tea bags but proper indian leaf tea, strong). The burning in back and legs goes in 15 mins most times I have tea but not every time and somehow the caffeine doesn’t stop me getting to sleep. Sleeping on a very hard surface and/or rough surface. Best combination is on the floor with just a thin rug under me and a rough old towel that’s been drip-dried and not folded so its slightly rougher than if it’s tumbled and folded.
    I might try the diary thing. I have a bad allergy to brazil nuts and if I get a reaction by eating some by mistake the same very specific areas for rls in my back and legs go into cramps half an hour after eating them.
    It would be very interesting to know if anyone has had same experience as me on any of these things/ remedies. Andy

  5. Congratulations on your persistence and discoveries.

    In fact, the ONLY things that give me RLS-like symptoms are milk protein and dehydration, so I can add to the voices saying you’re not alone in your reaction.

    You’ve also caught on to something key: celiac disease is really a distraction. The operative problem is intolerance to casein and/or gluten, quite often due to exorphin stimulation. Of course celiac disease is the only form of non-anaphylactic gluten intolerance coventional medicine currently recognizes in its protocols, but only a fraction of people with significant gluten reactions have actual celiac disease. And some with celiac disease do NOT have neurological symptoms.

    But the statement that 90% of people with celiac disease never get diagnosed is actually very optimistic. Based on random testing of the U.S. population, it is apparent that at least 19 out of 20 cases go undiagnosed and quite possibly as many as 59 out of 60. So that would be 95-98% that never get the right diagnosis.

    I certainly agree with the exorphin model to which you allude. Absolutely it applies to some people and it’s a tragedy that because it is not a universal explanation for the diseases it can cause (or mimic), it has been cast aside by most researchers. That means that many people who WOULD be helped never receive the benefit of that insight. And the researchers will toil in vain for their universal explanation. In the end, the truth about hyperstimulation conditions will encompass a variety of explanations and treatments.

    But the problem with dairy and RLS may also relate in part to dairy’s potential interference with magnesium absorption, especially since you are helped by magnesium.

    Be your own advocate, trust yourself best, and be heartened by the knowledge that people like us participate in the leading edge of science. Of course there are those who say that we are not scientific at all and that anecdotal evidence is meaningless. But that’s because they live so far at the trailing edge of science, the edge that cross-checks to the umpteenth degree and rejects everything that can possibly be rejected. There’s a vital place for that part of science, too, but it does attract a certain limited and aggressive kind of personality. What they too often forget is that most science BEGINS with anecdotal observations and speculation. We may not all live to see our vindication in these things, but there is no doubt that if civilization and scientific progress continue long enough, what we see already will become part of scientific canon.

    • I guess it’s been a while since I posted to any RLS topic.
      What my problem turned out to be was a reaction to toxic mold in my house, that has now rendered me essentially homeless even though I can afford to rent or buy, because my now-extreme reaction to molds has put in in the small subculture of MCS/mold illness that is essentially not able to find a safe place to live.

      The misdiagnosis of “RLS” instead of the proper diagnosis of mold toxicity, has taken the life I had and could have had and replaced it with one that no one can imagine unless it happens to them. For more information, read almost anything by Ritchie Shoemaker, MD. I am one of the people he is talking about. I now know my HLA gene type, and I have the blood test results proving the presence of extreme inflammation; this is not an “imaginary” or “psychological” disorder. It is “unfortunate” that the ten years I heard of “all your tests are normal,” were based on not doing the tests that would have showed abnormal results. If you don’t test for it, you won’t find it. Tests: HLA gene type; c4a; MSH; leptin, done BY THE RIGHT LABS.

      EBH

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  7. My (and my son’s) symptoms are incredibly similar to Eaubeauhorn’s. I had multiple symptoms including: RLS, rosacea, ocular rosacea, acne, depression, generalized pain, brain fog, fatigue after eating, phlegm, mushy stool. These symptoms worsened after shoulder surgery. I gave up gluten and experienced relief from my RLS. I took out all grains. I then discovered the Paleo diet – once again it helped enormously. I switched to a similar diet called the Specific Carbohydrate Diet – with some improvement. During this time I had to supplement with Gabepentin but I could see I would need a higher dose soon and I did not want that. I am now off all medication and this is what did it. No dairy, no soy, no grains, no sugar except honey, no potatoes, no additives, no caffeine, no alcohol except for dry “organic” wine. For us we needed a combination of the Specific Carbohydrate Diet and the Paleo diet. Good luck everybody.

    • I’ll add another bit of info. My learning curve continues. I found out that my own food problems were due to heavy parasite infestation, totally unknown to me and with no positive lab test. I have since found out that a person can send an intact worm to the lab and get a negative report; in short, lab testing for parasites is pretty much going to be a false negative. The only true test is to treat and see what you get, which may astonish and disgust you. Reactions to foods are very often actually your reaction to “parasite poop.” They eat what you ingest, digest it for themselves, and then you get what is left over. I have been doing the Kalcker parasite protocol (OTC) and am still midway through but gratified with the results. There is nothing like concrete evidence to cement the diagnosis. People who can’t eat carbs very likely have a heavy candida load on top of whatever other parasitic problems they have. In my case, I appear to have both flukes and (MANY) ascaris, with less candida, so I don’t have much problem with carbohydrates. My problems are all from protein, glutamates,and oxalates, so eating paleo makes me worse, not better. Everyone is very different and we all have to wend our way down the health path, most without the help of medical practitioners because the ones who have a clue are few and far between.


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