Went gluten free and off Klonopin as of 8/4/6

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

  1. xchocoholic

    xchocoholic New Member

    Hi Folks,

    Just wanted to let you all know that I am off of the Klonopin finally after 16 and 1/2 years and I am not jerking anymore.

    It took me 4 months to wean off of it. I spent the last 2 months trying to get off the last 1/4 of a .5 mg tablet.

    I attribute it to getting the gluten out of my diet, since myoclonous is a symptom of celiac.

    I have a long way to go yet, but I wanted to update those of you who have myoclonous, that the gluten free diet might help.

    I feel like I am finally taking control of my illness.

    Thanks for your support.


    Edited - Tansy has informed me that my success could also be because I eliminated dairy / caseine too. The website that explains this is listed in her post below. Thank you Tansy [This Message was Edited on 08/16/2006]
    [This Message was Edited on 08/16/2006]
  2. xchocoholic

    xchocoholic New Member

    Me neither until this past year. Then I went on a serious health kick. I'm not convinced that it will cure me, but I am trying.

    I am just trying to help anyone with myoclonous realize that it could be from gluten.

    Myoclonous from gluten is a documented symptom. Not that means anything to me anymore ... LOL

  3. NyroFan

    NyroFan New Member


    Please be careful about the Klonopin.

    It is good to know you do not need it, but please never rule it out for good if there is a problem anywhere along the line.

    No, not a doctor, just a suggestion. I hope you do not mind.


  4. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    Those are some pretty amazing perks to being gluten free. I don't want to imagine how hard it is to maintain that kind of diet though. For myself anyway.

    If you can sleep w/out meds, then that's that much less burden on your liver. I say do it, if you can manage. I'm managing pretty well. I've only had a sporadic sleep disorder and have needed sleep meds for rrough patches, but I've been learning how to ride those out w/ other methods. Alkalizing near bedtime works great and a multimineral is relaxing too in a pinch. Good sleep hygeine is the most important thing for me though. I absolutely can't do activities right before I retire. All the toothebrushing, and other bedtime rituals have to be done ahead or I wake myself up I do a flurry of even light activities on the way to bed.

    I'm curious if you noticed immediate benefit to going gluten free. I ask because my env. doc wants me to do an expensive out of pocket test, I've already done the standard blood test and it was negative. I've also done a gluten/all grain free diet for up to a mth and though it did knock back candida, I was quite weak w/out my grains. It seems grains are the best way I can get B vitamins, and even though I supplement, that's not enough. My bowels also get very buggered up too. I'm guessing w/ 2 serious detriments like that, then glutens probably aren't a problem for me.

  5. NyroFan

    NyroFan New Member


    I am doing the doctor route the next week and a half. Thank you for asking how I am doing.

    Good news on your new sleeping patterns. It just goes to show that we can resolve some things little by little.

    This is an example of it.

    Hang in there.

  6. xchocoholic

    xchocoholic New Member

    The diet was hardest in the beginning while I was still dealing with cravings. Now, I am craving the new foods.

    I noticed the very first day that I eliminated oats that I was no longer hyper. It didn't last but about 3 weeks, but it was enough to catch my attention.

    I bet that was about the time I started with meal replacements. I didn't realize at the time that I was getting gluten in my meal replacement. DUH !!!!

    Thanks for the tips on sleeping without meds. I was going nuts the first few days. Mostly, anxiety over whether or not I was going to be able to sleep without Klonopin.

    I used chamomile tea a couple of nites and benadryl a couple of times too. Last nite was my first attempt with no meds at all. I got 7 hours uninterrupted. YEAH !!

    I had the weakness in the beginning too, but I also didn't eat enough food. My calories were way too low.

    I get my B vitamins through veggies, sprouts, spinach, etc. And I take a dropper of baby vitamins a day divided into 2 or 3 doses. If I take more than that it makes me hyper.

    I got my bowels moving by using EVOO, grapeseed oil and flax oil. And papaya. Now, my bm's are normal by eating tons of fruits and veggies. And just a little meat.

    My stomach was a disaster before I started this diet. IBS, GERD, diverticulitis, etc. but this diet is helping all of that.

    Let me know if you try it. Xchocoholic

    [This Message was Edited on 08/15/2006]
  7. kholmes

    kholmes New Member

    How many milligrams of Klonopin were you taking daily during the 16 and 1/2 years.

    My diet is wheat and dairy free, very high in fruits, veggies, and fresh juices, but I do eat some meat. Very little sugar. I definitely feel better on this diet. I hadn't heard about the wheat/myoclonus connection.

    I weaned down from 1 mg to 1/2 mg of Klonopin over a period of two months. I'd like to take something like Lunesta for sleep instead. If I decide to wean off of it completely, I plan to take another two or three months to do it.

    How bad was the jerking you experienced, especially during that last 1/4 milligram? Also, did you have any of the myoclonic jerking before taking klonopin?

    [This Message was Edited on 08/15/2006]
  8. tansy

    tansy New Member

    Myclonus is one of the markers that a doctor picked up in the 80s alongside a long list of my deficiencies; going gluten free got rid of some of my symptoms too. The myclonus and RLS improved and then were successfully treated with supps based on follow up tests for remaining vit/min deficiencies.

    Gluten and dairy (both lactose and caseine) intolerances are fairly common in these DDs. It can take up to 3 weeks for improvements from avoiding dairy to become clear, and 3 months or more for symptoms related to gluten to start to ease down. Most specialists now recognise it can take 12 - 18 months to gain all the benefits from avoiding gluten; it's a very toxic substance for some of us whether celiac disease is present or not.

    I will post the link to an article by Malcolm Hooper called "Engaging with MCS" below; it features some excellent information including problems with gluten as experienced in autism, ME (CFS), MCS and GWS.

    Great news especially not needing Klonopin any more.

    TC, Tansy
  9. tansy

    tansy New Member

    as mentioned, in the above post, can be read at http://www.satori-5.co.uk/word_articles/mcs/engaging_with_mcs.html
    [This Message was Edited on 08/15/2006]
  10. Mikie

    Mikie Moderator

    I am so happy for you.

    Love, Mikie
  11. xchocoholic

    xchocoholic New Member

    I was up to 1.5 mg at one point and supplemented with Trazadone, Sonata, etc. My nocturnal myoclonous was documented in a sleep disorder study back in 1990.

    I didn't realize I was jerking in 1990, I was just exhausted from lack of sleep.

    BTW, it is a gluten connection, not just wheat. That means oats, rye and barley too. These are very hard to get out of your diet unless you go to whole foods.

    The gluten free ready made foods are famous for containing small amounts of gluten. By law, they can contain a small amt, don't remember how much, and still be labelled gluten free. I can't have any gluten at this point.

    I didn't jerk that much during the last 1/4. I was jittery and unsteady. I had to reduce it down to 1/8, the 1/16, then a single bite. I knew it was time to reduce it again if I was not jittery during the day and I had slept peacefully several nites in a row.

    Several times over the last 16 years, I could have been the stunt double for Linda Blair in the Excorcist. : ) My legs jerked most often, then my shoulders and arms, but when my abdomen would jerk, I felt like I cleared the bed.

    I am completely drug free at this point. YEAH !!!!!

    Hope this helps. Keep me up on your progress. Xchocoholic
  12. kholmes

    kholmes New Member

    Oh, actually, I've been entirely off of gluten, not just wheat. I have far fewer headaches and muscle aches when I'm off of gluten, dairy, and sugar.


  13. xchocoholic

    xchocoholic New Member

    I just realized that you both said that you had been gluten free for awhile now. Do you mind telling what your symptoms are at this point ?

    Did your myoclonous come back ?

    Also Tansy, I can't understand the article (not that smart yet : ) does it say that myoclonous can come from other things besides gluten ?

    Thanks xchocoholic
    [This Message was Edited on 08/15/2006]
  14. Scapper

    Scapper New Member

    Good for you! I love to hear when hard work pays off.

    I seem to not be able to stick to any rigid diets, which leaves me thinking I could be feeling better than this!

    I started weaning off klonopin 1 year ago.....I was up to 3mg for sleep and still not sleeping.....it's been quite the journey. I am amazed that you're able to sleep w/o meds.....that is so great. I'd like to get there one day.

    Congrats on your success :)

  15. xchocoholic

    xchocoholic New Member

    Hi there,

    Thanks for your well wishes.

    I actually walked through the mall today without feeling dizzy : ) Oh, and I don't get that dizzy feeling when I stand in one place anymore either : )

    [This Message was Edited on 03/20/2007]

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