Tansy, Kholmes,anyone - ? about gluten & myoclonous/seizures

Discussion in 'Fibromyalgia Main Forum' started by xchocoholic, Aug 15, 2006.

  1. xchocoholic

    xchocoholic New Member

    Hi there,

    I am trying to understand why my myoclonous went away and also make sure it does not come back.

    Since I have been so sick for so long, I'm not convinced that this is over.

    From what I understand myoclonous has only been linked to gluten and no other foods. Do you know of any other foods tied to myoclonous / seizures ?

    Did your myoclonous came back after you had been off gluten for awhile ?

    And what other benefits did you see from going gluten free ?

    I'm still amazed that food can make such a difference.

    Thanks X

    [This Message was Edited on 08/16/2006]
  2. tansy

    tansy New Member

    In my case going gluten free was only part of the solution, myclonus and RLS went away after deficiencies were corrected; these deficiencies are commonly found in gluten intolerance.

    The link I posted on your other post covers the effects gluten and dairy (casiene) can have on the nervous system; that may explain why your myclonus went away with your new diet. In gluten intolerance the proteins can have a neurotoxin effect; hence the gluten (and caseine) free diet often recommended in programmes aimed at treating the autism spectrum.

    Not everyone who has gluten intolerance etc will have myclonus, but it in your case it was clearly the cause of them. This may have been due to it's neurotoxin effect or because food intolerances like gluten can prevent absorption of nutrients, these deficiencies can cause myclonus and RLS.

    TC, Tansy
    [This Message was Edited on 08/16/2006]
  3. xchocoholic

    xchocoholic New Member

    Thanks, I think I get it now.

    Myoclonous is not just a symptom of celiac. It can be a symptom of nutritional deficiencies or the gluten intolerance /caseine connection.

    I appreciate the article you gave the link to, but it's too difficult for me to understand at this point. And maybe forever - LOL

    Any chance I will get my IQ back ?

    I hate to think that I may not be able to handle caseine again. I'll miss that more than the gluten.

    Could you eat caseine after you had been gluten free for awhile ? Are you a celiac ?


  4. tansy

    tansy New Member

    gluten and caseine free. I had all the Sx of celiac disease including diarrhea, dramatic weight loss, muscle loss, etc. Because ME (CFIDS) is not taken seriously I was Dx with anorexia; but I was eating all the time because I felt so hungry. My husband (ex now) said I looked like the starving in Africa, wasting away with a swollen abdomen.

    Fortuantely my chiro recommended a doctor in London who immediately suspected gluten and dairy intolerances along with candida etc. He also confirmed my Dx of ME. Tests for nutritional deficiences indicated poor absorption, I was low on many vits and mins. Later tests for vit/mins showed deficiencies in the nutrients that can cause RLS.

    The RLS went away; the myclonus became less severe and they stopped being so consistent. I have mechanical problems, issues with toxins, and infections, that adversely affect nerve function.

    When I tried gluten again, I found it had body wide efects. It would cause joint pain and stiffness, intrestingly glucosamine can block toxins from wheat, and this is used for joint pain, OA etc. It also effected my mood, good enough reason to avoid it.

    I have made progress but it took more than a gluten and dairy free diet. On my good days, providing I don't overdo it, my IQ and cognitive function come out of hiding for a while; so it can happen. Incidentally it can take a long time to get the full benefits from a gluten free diet, if that's a major contributor to your cognitive problems, then it may take a while longer before all the adverse effects of gluten are gone.

    That article is long but one of the best explanations I have found at explaining symptoms related to ME/CFIDS, MCS, GWS. Here's a short piece from that relating to gluten and caseine

    "Compromised digestion releases opioid fragments from proteins in milk and gluten, the casomorphins and gliadomorphins. These pharmacologically active peptides are carried through the permeable gut wall and can then exert their effects locally in the gut and at other sites particularly in the central nervous system."

    This might go some way to explain why your myclonus have gone since you have been avoiding gluten.

    I suspect anything that can act as a neurotoxin in the body can trigger myclonus. Mg deficiency can cause myclonus and RLS.

    TC, Tansy[This Message was Edited on 08/16/2006]
  5. xchocoholic

    xchocoholic New Member

    Hi again,

    I really appreciate you taking the time to explain all of this to me : ) I copied that article into a work file so I could edit it and try to read it again sometime.

    Actually, I know it didn't feel good, but having the classic celiac symptoms was probably a good thing. At least you could treat it right away. Anorexia, GEESH !!

    I've had stomach problems (IBS-C) as far back as I can remember. This turned out to be mostly, if not all, wheat related. DUH !!! It comes right back if I eat wheat.

    I've been working on the candida angle too, but I haven't done the candida diet yet. I drink kefir and pau d'arco tea and eat raw garlic and limit my grains.

    Did you find clearing up the candida helpful ? I am thinking that could be part of my brain fog.

    How long ago did you give up gluten and caseine ? Do you mind me asking what have you tried other than going gluten and caseine free and treating the candida ?

    I will be trying something else if this doesn't help : )

    Thanks again .. X

  6. tansy

    tansy New Member

    since the 80s. Originally my Candida was treated with nystatin, amphotericin, and a homeopathic nosode. In more recent years I found alternatives a lot better and it was easier to control die off.

    Candida has been found to produce 79 distinct toxins, and some of these affect the brain. Candida albicans can synthesize acetaldehyde, a toxic metabolite that causes cross-linking, damages organs, and interferes with the synthesis of acetylcholine and other neurotransmitters.

    This disruption of the nervous system can cause mental disarrangement, abnormal behaviour, and memory loss. Candida toxins can also alter the functioning of the central nervous system leading to distorted thinking, mood swings, depression, agitation, impaired intellectual functioning and emotional disturbances. It’s even possible for candida to produce symptoms of alcohol intoxication by fermenting simple sugars.

    Candida can decrease suppressor T-cells by a factor of 15; this is what’s often found in ME/CFIDS.

    I cycled a whole range of alternatives starting with berberine complex, then wild oregano oil, and grapefruit seed extract (the latter only for a very short time since GSE can kill off the goodies as well). I used garlic but found what I thought was die off was actually problems with sulphur/sulphites; hence the use of molybdenum. Digestive enzymes and probiotics helped. I found wild oregano oil the most effective, and still use it for bacterial infections.

    If I were starting now I would try Candex or Candigest first -

    Candex: extract from Pure Essence’s website

    “….candida’s cell wall is made mostly of fiber, fiber digesting enzymes can break it down. When this occurs, the yeast dies. The enzymes that best digest the cell wall of candida are cellulase and hemicellulase.

    ….Because Candida cannot change the structure of its cell wall, it cannot become resistant to these enzymes. And, because the enzymes do not stimulate the yeast to release toxins, they do not trigger a die-off reaction. In short, you won’t have to feel worse before you feel better.”

    Product info on Candigest

    "Candigest Plus contains six key enzymes. Five of these digest the carbohydrates off which the candida feeds. In effect, the candida is starved. The sixth enzyme – Protease - is the secret weapon that no other anti-fungal product has. It can digest the protein nucleus of the candida organism to remove it entirely from the body."

    There are many alternatives that can treat Candida; coconut oil is a popular one, but I cannot give you any personal feedback on it because I don’t tolerate coconut.

    It would take a tome to go into everything I tried for over 2 decades, but I have consistently benefitted from the basic supps still being recommended now.

    TC, Tansy[This Message was Edited on 08/16/2006]
  7. xchocoholic

    xchocoholic New Member

    It's 11:30pm here and my one and only brain cell is falling asleep on me : )

    So, I'll be checking this out tomorrow. Caught the tomb line though : )That's how I feel about all the meds and tests I have had over the last 16 and 1/2 years.

    Zzzzzzzzzzzz X

  8. Theresa

    Theresa New Member

    Hi there,
    I found your thread interesting because I suspect a problem with wheat or gluten. However, my doctor did a Celiac blood test which turned up negative. Did either of you test positive for Celiac disease?

    I have been back on gluten for the last 3 months to finally rule it out but have been experiencing terrible joint pain and stiffness and digestion problems. My rheumatologist says it's osteoarthritis. I really believe there is a connection to the diet. I find out the results of the biopsy in a week but no matter what the outcome, I will be staying away from gluten as much as I can.

    I'm just so frustrated no tests can confirm my problem. I wish it was more clear cut. Thanks for the helpful info.
    Take care, Theresa
  9. xchocoholic

    xchocoholic New Member

    My GI doc did not test me for celiac even though he did an endoscopy and colonoscopy and ran bookoo labs. According to him, I am to take Nexium, Miralax, Imodium, Donnatal, Zelnorm, etc. and follow at least 4 different diets for rest of my life. HAH !!!!

    My GP refused to run the labs. She told me that the best way to diagnose celiac is through the gluten free diet. And when I asked her to do the DNA test, she said that it wasn't her specialty. HMO !!!

    My GP diagnosed me as gluten intolerant, but not celiac, 3 weeks after going gluten free because I was no longer hyper.

    I honestly never knew I was hyper until I got the gluten out of my diet and felt normal for the first time in my life. Everyone thought I was just antsy and got bored easily.

    This really makes me wonder how many ADD kids are gluten intolerant or celiac.

    From what I have learned on the celiac dot com website, the gluten free diet is the best way to determine whether or not you will benefit from the diet.

    Check out the message board for more info on tests. Many have NEGATIVE test results, but POSITIVE dietary results.

    Three months is really not long enough to see any dramatic benefits as far as your osteoarthritis. The villi don't heal until at least 6 months. That is when I started feeling drugged from the Klonopin. Both because I started absorbing it better and the myoclonous was not as bad.

    You probably need to get the dairy out of your diet too. Problems with dairy and other food sensitivities become more prevalent once you get the gluten out of your diet.

    I "used to" wish I had been tested, but at this point, my positive results from going gluten free (and in my case dairy, soy, corn, eggs) are enough to keep me on the diet.

    Hope this helps. X
  10. Theresa

    Theresa New Member

    I guess we are on the board at the same time.

    I have given up dairy already as I started having problem with it several years ago when all of my fibro symptoms started. Plus, I tested positive for dairy allergies through the Elisa blood test. My results for wheat/gluten were low positive so I never really took them seriously.

    I got allergy shots several years ago and mold and corn were my big problems. I have problems with soy as well. Seems we have similar allergies - I guess those are the most common.

    The reason I don't think I have Celiac is that I don't have diarrhea - I suffer mostly from constipation and severe digestion problems. In any case, I think my body is sensitive to the wheat/gluten.

    Recently, I went back on gluten for 3 months so that the doctor could perform the Celiac test (endoscopy). Before that, I was not completely 100% gluten free but trying.
    I was the one who asked for the celiac test! He had performed both an endoscopy and colonoscopy on me 6 or 7 years ago and never performed the celiac test! I don't get it.

    Glad you are doing better.
    Take care, Theresa

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