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Kamma

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by Kamma

  1. 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. 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...
  3. 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...
  4. Hello Gatita, I hope your brother responds to going gluten free. It would be great news if this is what is causing his ataxia and you can eliminate the cause (as opposed to it be idiopathic.) Keep us posted on how he makes out. Kind regards.
  5. Good point. To clarify: the washing is effective on removing the pesticides that are on the surface of the plant and not in the pesticides that have been incorporated into the plant while it was growing.
  6. Soap is an excellent cleanser because of its ability to act as an emulsifying agent. An emulsifier is capable of dispersing one liquid into another immiscible liquid. This means that while oil (which attracts dirt) doesn't naturally mix with water, soap can suspend oil/dirt in such a way that it can be removed more efficiently than using just water. It...
  7. Ciel, Eating whole foods is the best way to go. Fruit, vegetables, meat. I stay away from grains as well because of the cross contamination. In the beginning it is difficult but the better you feel, the more momentum and motivation you have to stay on the path. The real confirmation that you're doing the right thing is when you accidentally ingest...
  8. M. Hadjiivasilliou is doing clinical trials on the ttg6 blood test. He just released confirmation of a recent study that pointed that ttg 6 antibody response can be used as a marker in gluten ataxia. It will takes some time for the test to make it it to the mainstream. He's been working on this test for the last couple of years so perhaps it will be ready...
  9. One of the tell tale signs is the shrinking of the cerebellum in the brain. This will show up on an MRI. Some people have extensive damage that it will show up others don't have enough to show the shrinkage. Another thing is the current blood tests only test for the skin and intestinal manifestations of gluten intolerance and they will not not catch the...
  10. Pleased to meet you, yolo. Thanks for sharing your story. I was wondering if you could speak more about how gluten affects your kidneys. I have tested positive four times in the last two years for protein in my urine.
  11. It takes a while for the antibodies to leave your system. For example, AGA antibodies have a half life of 120 days. So even if you stopped all gluten now, the antibodies would still be circulating your system full on for almost half a year. Hadjivissilliou seen the most improvements after one year. That's of course if you can keep the trace gluten out...
  12. clevercate, that it is absolutely wonderful that you are responding! Especially after so long of just 'suffering through things and being told not not worry about it. Arrrrgh, doctors make me so mad sometimes. I'm not surprized you would test negative on the blood test. Hadjivassilliou's research shows less then 30% of gluten ataxia patients will...
  13. Gatita, I was diagnosed with gluten ataxia in January 2012. I immediately stopped ingesting gluten and within weeks I felt my fatigue lessening. My balance issues and drunken walking still continued however. It was only by going super clean and only eating fresh foods (absolutely no processed foods including 'gluten free' replacements foods as most...
  14. Yup, there's tons of things with soy in them. Even margarine. Every margarine container that I looked at one day had soy in it. The only soy free substitute I have ever found is Earth Balance Almond Spread. Canola oil is naturally gluten free. It has the potential for cross contamination in the processing but there is something to do with the seed...
  15. Yeah! I heard that was good! I can't have it cause it's dairy...but damn, if I only could!
  16. I had no clue either until I started getting sick and looking at the ingredients of food that I used to take for granted. No worries. By the way, I use a mayonnaise that uses canola oil instead of soy oil. There's quite a few out there that do. Try doing the switch and see if that helps. Or, if you don't want to invest in a jar of mayonnaise that you...
  17. Yes, yes, yes to all the symptoms you mentioned and most of the other ones that the other posters mentioned. I was diagnosed tentatively in November and confirmed after the gluten challenge. How long were you experiencing your symptoms before you were finally diagnosed? Mine started about three years ago with severe vertigo that was then accompanied...
  18. I could just picture you biting into your piece of heaven. You know, one thing (out of the many) that I'm learning is it's the small things that were once taken for granted that come to be special. Happy cheese eating.
  19. That must have been a heaven sent moment, biting into the Cheddar. I kind of stopped drinking milk when I had my kids (save the milk for the kids!) and totally fell out of the habit of drinking it even after they grew up and moved away. Cheese was my only dairy source. I'm assuming the stomach can't handle the proteins in dairy because of the...
  20. That is a possibility that I never considered to tell you the truth. I love cheese too but had cut it out of my eating habits in the past year because whenever I would eat it, my ankles, hands and face would puff up from water retention the next day. I was assuming it was the salt though and have tried to eliminate most of salt/processed foods from my diet...
  21. I'm on gluten right now in preparation for testing and the super sensitivity to sound is a huge factor for me. Water running, vehicular traffic, voices over the telephone, floor boards creaking...all of them and more make me cringe. In addition I have vertigo, balance problems and total exhaustion. If I am under flourescent lights, this seems to trigger...
  22. That's actually what my neurologist said when I brought up celiac as a possible cause to my problems. In effect his words were, "wow. I never thought of that but you could be right. It's your lucky day cause alot of doctors havent even heard of gluten ataxia as its on the fringes of medical research yet. The only reason I know of it is my sister who had...
  23. Hello Meegan, My brother was diagnosed wiith MS when he was thirty five. He has the steady decline progession one. Within the first year he had changed his diet to mostly to a raw food diet but kept cooked chicken in for the protein. After almost fifteen years, he's still able to walk albeit it's very difficult for him at times. I acutally think its...
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