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Kamma

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Everything posted by Kamma

  1. Kamma
    Thanks for the linked article, Naturechick. It's totally correct in it's premise that we normally consider wine 'unprocessed' and elemental. For those of us in the world who are trying to be mindful of what we are putting into our bodies aside from just gluten (and mindful of what effect massive production/agricultural processes are doing to the ecosystems...
  2. Kamma
    I'm wondering if there is an issue with lower levels of cross contamination of the nut flours you are using. They could be certified at 20 ppm but perhaps they contain lower levels of gluten. When you remarked that you had been recently tested for ttg iga (?) levels, it showed you were fine. Did that mean your numbers are decreasing and you are now...
  3. Kamma
    You're welcome, Gladgirl. When do you go in for your next MRI? I also have a brain tumour in the pituitary/optic chiasm called a craniopharyngioma. Slow growing. At this point they don't want to operate as the symptoms are far more preferable to the excision. Kamma
  4. Kamma
    Hi Christiana Gluten Ataxia only shows up in some people's MRI as shrinkage of the cerebellum region in the brain. I say some people because if the ataxia is caught soon enough, there is no shrinkage of the cerebellum. I'm not sure if there is a different set of protocols that Neuroimagers use in setting up the MRI for suspected different diseases...
  5. Kamma
    Jonvon, Check out this site for information / research papers of Dr. Marios Hadjivassilliou, a U.K. neurologist and the leading expert on Gluten Ataxia. Open Original Shared Link After being diagnosed with gluten ataxia a few years ago, my vertigo took months to resolve on a strict gluten free diet (i.e. I don't eat any 'gluten free' products at...
  6. Kamma
    That's the beauty of reading of others shared experiences: you are encouraged that there is a light at the end of the tunnel or it gives you ideas to try. I'm a little shy of saying to people, you have this or that as it could be totally off base but it helps to figure out a possible path to pursue medically. Check out the symptoms for meneire's disease...
  7. Kamma
    Here's a list of the food triggers. Some affect people while others don't. You have to do an elimination rotation and introduce them back one at a time to see if they are a trigger for you. Cheeses that are aged or ripened (such as Blue cheeses, Cheddar, Gouda, Brie, Parmesan, Romano, Gruyere) Alcohol, especially red wine or beer Chocolate, cocoa...
  8. Kamma
    I was diagnosed with a couple of labels and went through a year of testing with different specialists before they decided on MAV. I don't have migraines so when they came up with that, I was like, waaaahhhht??? But they explained to me that you can have migraines without feeling them which seems ass backward to me. I also have tulio's syndrome which is...
  9. Kamma
    Migraine Associated Vertigo. I was diagnosed with it around the same time I was diagnosed with gluten ataxia. The rocking is horrible isn't it? There's a whole forum dedicated to it at the name mentioned above and you can access some good reading and research there. Basically, there's two ways of treating it and neither are 100%. Some choose the...
  10. Kamma
    Hello mdohtnla It is frustrating and not just a little frightening to have something wrong with you and take a battery of tests to have them come back negative when all you want is a diagnose and a plan of action to get better. One thing you might want to investigate further is Gluten Ataxia as some of the symptoms you described closely fit with it such...
  11. Kamma
    Thank you for the update, Gatita although it isn't as good of news as you probably hoped for. I'm sorry about that and yes, it's hard to see someone disintegrate in front of your eyes. Your heart gets wrenched around and you want to do as much as possible to bring them back to health. Your brother is fortunate to have a sister such as you. Remember...
  12. Kamma
    Morning, coil. Have you ever had what is called vestibular testing? This usually involves an ENT (Ear, Nose and Throat) specialist and one of the tests is to pour water in your ear and measurement of your eye movements (nystagmus) in response to it. If the testing was abnormal, then it would show the problem to be your vestibular system in your ears...
  13. Kamma
    Morning, Designer Stubble... Tissue Transglutaminase (ttg) is actually an enzyme contained in your body that cross links with the gluten proteins in wheat, rye and barley stimulating the immune system to respond with B Cells (White Blood Cells) to produce the Anti transglutaminase antibodies IgA and IgG to go on the attack. I'm reading your results...
  14. Kamma
  15. Kamma
    The laws in Australia require that for a product to be labelled gluten free, it must contain no detectable gluten and the current standards test down to 3 ppm not 8 ppm. Products that test above that and up to 20 ppm can be labelled 'low gluten'. Gemini, I find dilettantesteph's posts to be very informing and she provides her experience which can be...
  16. Kamma
    Sounds like you really suffered a lot that summer, Fire Fairy. Sorry to hear that. I agree with Steph - be very careful with CC so you don't get inadvertently glutened. Your safety is at stake as Steph's friend's experience demonstrates. If you haven't had one since going gluten free, I would say that there is a chance of a link between the two. ...
  17. Kamma
    Thank Heavens for that. I know I was quite relieved to find out that the seizures were not caused by epilepsy. Researcher's don't quite know why gluten can cause non-epileptic seizures but it's documented throughout out the research on the neurological presentations of gluten intolerance/sensitivity.
  18. Kamma
    Hello Fire Fairy, I had clonic seizures (jerking in rhymic motions - my torso and head would whip back and forth, round and round) that lapsed upon going gluten free but return as a symptom of inadvertent glutening. I did not have calcification on the brain which would denote epilepsy. Your 'spaced out' times definitely sound like absence seizures as...
  19. Kamma
    Here's an article from a newspaper in Sydney. The push to change the labelling comes from inside the industry. Excerpt: Australian food manufacturers and suppliers are pushing to increase the amount of gluten allowed in so-called ''gluten-free'' foods on which thousands of people with digestive problems rely. The Australian Food and Grocery Council...
  20. Kamma
    Oscar, you're a peach. Thanks for catching that and will edit.
  21. Kamma
    I like Australia's labelling requirements and cannot understand their reasoning why they would want to bring them in line with Europe and North America. In my opinion, the goal is to protect and inform people with gluten intolerance, not to create standardization internationally. Especially when there are many that still react to less than 20 ppm and are...
  22. Kamma
    You're welcome. When you first start out examining everything it can seem daunting at first. But as time goes by, and the more knowledgeable you become and tuned into your body's response to different foods (if you are going to pursue the food sensitivity angle) things will start 'clicking' for you. Your body is your best guide. Keep me posted...
  23. Kamma
    Hello Allie, The twitching in your muscles and tingling and tingling in your hands and feet is called "peripheral neuropathy" and is common in gluten ataxia. Some studies that you can read on this are: Autonomic neuropathy and coeliac disease Open Original Shared Link Sensory ganglionopathy due to gluten sensitivity. Open Original Shared...
  24. Kamma
    Good morning, Kham Another thing to consider would be gluten ataxia of which you share some of the symptoms. G.A. is caused by an immune response to gluten but it manifests itself neurologically (poor balance, vertigo, pins and needles (which is called neuropathy), slurring of speech, extreme fatigue, cognitive difficulties). Some people who have gluten...
  25. Kamma
    Yes, MisterV, that is entirely possible. For those who react extra-intestinal to gluten with ataxia and neuropathy responses, physiological responses have a longer rate of resolution with some symptoms lasting for up to a year before final resolution and after adopting the gluten free diet. There is less research on accidental or inadvertent gluten ingestion...
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