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caek-is-a-lie

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Everything posted by caek-is-a-lie

  1. caek-is-a-lie

    ARCHIVED Quack Treatments?

    caek-is-a-lie replied to GF avenger's topic in Doctors

    My ND has a Celiac son, so she knows a lot. I'm sure it's an exception to the rule, though.
  2. caek-is-a-lie
    There are some people who believe that gluten intolerance/Celiac can also cause Narcolepsy. Narcolepsy involves degeneration of neurons in the hypothalamus and several labs have been working on proving it's an autoimmune disorder. I don't know of any work off-hand that looks at Narcolepsy as a result of another autoimmune disorder, but I wouldn't rule it...
  3. caek-is-a-lie

    ARCHIVED Quack Treatments?

    caek-is-a-lie replied to GF avenger's topic in Doctors

    I had the EAV test done a few months ago. I'm always a skeptic, but I already had a list of foods I avoided so I figured, I'll go in, have the test, and see if it correlates. I really wanted to learn if I was avoiding everything I needed to or not. I'm happy to say it mostly did correlate with my list. I tested negative for several fruits that I'm sensitive...
  4. caek-is-a-lie
    Oh that's super close to me! Did it take you long to get in and did you need a referral? I think my insurance will let me go anywhere. I like your description...I need someone who listens and knows I'm not crazy.
  5. caek-is-a-lie
    Wow thanks for all the great suggestions. I feel a lot better now that I've had a couple days to sit and think about it all. I'll probably make an appointment with a specialist...knowing the place I go to, it will probably take awhile to get in which will give me time to round up that copay. lol I really would rather not go through 3 months of a gluten...
  6. caek-is-a-lie
    I know this is an old post, but I have to step in here to make a comment about this. This is not true. Research has shown that Narcolepsy is a very likely an autoimmune disorder, just like Celiac. During disease onset, the immune system kills off 90% of the hypocretin cells in the hypothalamus. And, just like Celiac, the triggers and predisposition to...
  7. caek-is-a-lie
    Wow I've recently had a painful lump between my sternum and my navel, too. Like in the small intestine just below my stomach. No one can figure out what it is. I went in to the dr. for something unrelated, and she found this stomach lump during the exam. They did an ultrasound but didn't see anything like a hernia or a mass. But it's there and you can...
  8. caek-is-a-lie
    I get seizures from gluten, too. For years they told me it was just psychogenic and sent me to psychological testing and therapy. All they found was that I had PTSD from seeing doctors! lol I've had epilepsy tests and MRI's and all sorts of tests, all negative. Then I go gluten free for about a month and accidentally eat gluten last week and I have seizures...
  9. caek-is-a-lie
    I'm only recently gluten free so my systems aren't perfect yet, but I have quite a few food allergies so we've lived with the concept for awhile. We don't keep flour or sugar in the house and haven't for awhile. I have my own shelf in the fridge and we often cook separate dinners for ourselves since my son hates eating what we do anyway. His father is...
  10. caek-is-a-lie
    Genetics research in Narcolepsy is far from complete. They still don't really know what causes it and not everyone with Narcolepsy has the first gene they found. They've since found a couple more, but the research is still pretty new so I don't know if you could get tested for it yet. However, the Celiac genes and the first Narcolepsy gene they found...
  11. caek-is-a-lie
    I have Narcolepsy and have to avoid gluten and a few other foods to feel well. If I eat properly, I don't have many symptoms, although I still have some daily fatigue and I have Cataplexy if I'm laughing at a funny movie or something. But for the most part I feel alert and can think and I don't fall down spontaneously. And I don't have to take a nap every...
  12. caek-is-a-lie
    Hi, I'm new to this forum and new to avoiding gluten. I'm getting kind of frustrated with a few things and wondered if anyone had any suggestions. First of all, I have a family history of Celiac. 2 immediate family members were diagnosed formally with Celiac years ago. I had a blood test but it came back negative so I was told I didn't have it. That...
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