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marciab

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Everything posted by marciab

  1. marciab

    ARCHIVED Chronic Fatigue And Coeliacs

    marciab replied to Billygean's topic in Doctors

    Sorry to hear your docs not concerned about you laying around. I got this too ... Fatigue doesn't seem to get a lot of attention. I understand that some of the tests they are using now to diagnose celiac won't pick up gluten sensitivity. So you may want to go ahead and give up gluten to see if you feel better. Even at my sickest I didn't feel fatigued...
  2. marciab
    Belinda, I get nocturnal myoclonus everytime I went into REM sleep from gluten as well as a host of other neuro symptoms. I went off my Klonopin veeery slowly. Have you asked his doctor about this ? I didn't have my docs permission to eliminate it totally, but she thought CFS/FM was an anxiety disorder ... HA ! I simply cut back on a tiny piece...
  3. marciab
    I used to fall asleep at the drop of a hat and sleep for days on end before eliminating gluten. And when I first went on this diet and was glutenned again, I noticed that I was doing it again. Not so much now, but I'm using DPP-IV nowadays if I think I've been glutenned. It's funny, I get insomnia at bedtime and nocturnal myoclonus too if I get glutenned...
  4. marciab
    I know we need iodine too, but I never specifically looked into how much ... You may want to google "foods iodine" to make sure you are getting enough in your diet. Here's what I researched and am using. Redmond's Real Salt gourmet natual sea salt - it has iodine too ... Celtic Sea Saltby Nature's original seasonings ... I don't see Iodine listed...
  5. marciab

    ARCHIVED Chronic Fatigue And Coeliacs

    marciab replied to Billygean's topic in Doctors

    I was diagnosed with CFS/ME/FM back in 1990 and mine started with a virus too. I responded immediately to the Gluten-free Casein-free + diet back in 2005, but it's taken me awhile to feel good again. I wasn't diagnosed with celiac until 2007, 17 months after going on the gluten-free diet, so I'm not sure if I was a celiac at first or if it happened in 2...
  6. marciab
    Ursula, Have you tried re-introducing these foods into your diet a little at time ? And back off if you have a reaction to a small amount ? I did this with cantaloupe, walnuts, eggs, etc ... I'm still working on tomatoes, but can handle them raw. This is what my GP told me to do when I first went on this diet. I realize that some say you should overload...
  7. marciab
    That's interesting. Mine was 78/58 the last time I had it taken at my docs. When I commented to the nurse that my BP was incredibly low, she just told me that it was ? /62 last month and that I run low. So apparently to my doc, this wasn't a big deal. I haven't seen it that low in a month now ... It's good to know it's working somewhat for you. I'm...
  8. marciab
    This article does a good job of explaining all of this ... Open Original Shared Link
  9. marciab
    Thanks Ursula, Now that most of my symptoms are gone just by changing my diet, I'm not interested in taking medications. If the salt loading / excercise protocal stops short of correcting my OI, then sure I'll try it, but not until I've looked at a more natural approach. As in dietary changes or whatever excercises JH has found that helps OI. Also...
  10. marciab
    Ursula, I've enjoyed chatting with all of you, but this thread has too many posts about things other than OI/NMH/POTS, so I wanted to try to reel it back in. Besides if someone is coming here looking for info on Humaworm or parasites they'll never think to look here. : ) I've found that I have to take on learning about one protocal at a time. I...
  11. marciab
    Um, excuse me, but if you want a thread on humaworm or parasite or lyme treatments or anything other than treating OI/NMH/POTS could you please start one ???? I was really hoping to get some feedback on what I'm going through with the sodium treatments ... And I'm sure anyone who comes here to read this is looking for the same thing. Thanks .. Marcia
  12. marciab
    No, you have to get your iron and B vitamins from somewhere else. This protocal will only increase blood volume and your sodium levels. I don't know why you can't do both at the same time though. Here's a link that shows what sodium does for our bodies. Notice the RDA is 2400-3000 mg a day. Since I've been making my own food for almost 3 years, I never...
  13. marciab
    Ursula, Sorry to hear that your husband isn't being supportive. I'm divorced because of this DD. Well, who am I kidding ? He wasn't much of a husband to begin with. He flipped out when I got sick. I was just suggesting juice but any kind of liquid with sugar in it might help. Water with honey or molasses should work, etc. Diabetics use those glucose...
  14. marciab
    I've never had these cysts on my scalp, but I have one on my knee which has been there since I was a kid. It's not a problem though. It doesn't fill up anymore. TMI .. While the salt water is helping, I'm playing with glucose and licorice root / or chocolate (supports / bumps adrenals) to see if this will keep me from getting fuzzy headed or weak when...
  15. marciab
    Rachel, Are you saying that I can still have Lyme even though I don't have any nuero symptoms left ? I actually don't qualify for CFS or FM anymore now that I don't have nuero symptoms and I'm sleeping normally. These symptoms will come back if I get any gluten whatsoever though. I'm terribly sensitive ... I can't eat foods processed in a facility...
  16. marciab
    I'd read that about the die-off, but I didn't know it could happen in the calf muscles. From what I understand, the amount of salt + water is heavily dependant on how much a person sweats. And that if you drink plenty of water with this, it should make it out of our kidneys ok. I'm at 5 - 16 oz bottles of this a day now. Thanks for the info though....
  17. marciab
    Hi Rachel, I'm so glad you and Ursula responded to this. I was hoping to hear from some of you who've been at this as long or longer than me. I keep telling myself I'm peeling away the onion layers. : ) I'm doing really well so I really don't think I have Lyme. I was tested and it came back negative, but I understand that my test done by Quest was probably...
  18. marciab
    Hi Shay, Good to know it's helping you too. I need a lot more salt than that though. I cook all my own food so I wasn't getting anywhere near the RDA for sodium. And now that I'm sweating from hot flashes ... I really needed more. Hi Ursula, Good to hear from you ... Love the grandkid pics ... I was thinking there were some over here that...
  19. marciab
    I was diagnosed with CFS/ME/FM or CFIDS back in 1990 and have been GFCFSFEFCF + chemical free since July 2005. I've improved quite a bit (nuero symptoms are gone) but I'm still working on my energy / muscle fatigue. I was recently re-diagnosed with OI/NMH (orthostatic intolerance). I was too sick to understand what this was before I had resolved most...
  20. marciab
    I'm not sure what kind of ataxia I had, but it went away after one year on the Gluten-free Casein-free + chemical free diet. My digestive tract wouldn't allow much of anything by the time it gave out on me in 2005. I was diagnosed as a celiac in 2007. A little late, but ... I didn't see any reference to other foods that you eliminated and since you...
  21. marciab
    Thanks for your replies. I just started looking into the different types of digestive enzymes available, but I've been eating raw papaya, pineapple, mango and ground up dried papaya seeds and taking probiotics for over 2 years now. These have really helped anytime I've felt like my food wasn't moving through me or I was gassy or cramping. But, after reading...
  22. marciab
    This article states that digestive enzymes will work on undigested foods in our bodies if taken on an empty stomach. I'm not eating gluten on purpose, but since I'm super sensitive I wanted to try this to see if it would help me with CC. I started taking this 2 weeks ago and right away had smelly poop and watery "D". I'm currently taking 1 - 2 a...
  23. marciab

    ARCHIVED Paleo Diet

    marciab replied to lisaemu's topic in Related Issues & Disorders

    Here's a good explanation of why the Paleo diet works. Open Original Shared Link I've been on it since November 1st, 2007 and haven't noticed any improvement in my energy, but I am getting fewer hypoglycemia symptoms. I started taking GlutenEase 2 weeks ago. I had a detox period with smelly poo and watery "D" for a couple of days, but that's gone...
  24. marciab
    I have a 20 year old DD, and if it were my daughter, I would say something to her about the DH on her face. She's already seen the look on your face and she knows that you saw it. I'm one of those people who can't tell a lie though, so my face speaks volumns. You know, even if it is stress, letting the skin on her face get damaged from lesions isn...
  25. marciab
    Thanks Amy, I was asking about CC on another gluten-free board yesterday and a friend said that she had some luck with DPP-IV from the Houston company and I noticed one mother of an autistic child recommending it for other autistic kids. So I figure it's worth a try. However, I noticed when googling DPP-IV that there's info on the web about the benefits...
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