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Kamma last won the day on July 30 2013

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About Kamma

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  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), it's a great starting off article to investigate it further. Organic wine - I'll have to look harder for it. Thanks! Kamma
  2. 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 in the 'normal range'?
  3. 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. 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. For example, in a suspected cause of multiple sclerosis, the MRI is set to scan only those probable areas of the brain where multiple sclerosis leaves lesions. Kamma
  5. Jonvon, Check out this site for information / research papers of Dr. Marios Hadjivassilliou, a U.K. neurologist and the leading expert on Gluten Ataxia. https://sites.google.com/site/jccglutenfree/ 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 all and stick to eating vegetables, legumes, fruit and some fish). The brain fog slowly disappeared as well. After about a year I felt 'normal' for the most part but still have seizures and/or vertigo if I inadvertently get glutened. It's not a quick fix (sorry!) and Dr. Hadjivassilliou recommends to be very strict in what you eat as it appears by the research that gluten ataxia/neuro people are extremely sensitive to the lower amounts of gluten that can be found in 'gluten free' products. Please note that if you do have gluten ataxia and got a celiac test done, it will most likely be negative as gluten ataxia actually involves a different enzyme than what the traditional celiac panel tests for. The celiac panels only test for ttg 3 and ttg 2. (ttg is Tissue Transglutimanase enzyme) Gluten ataxia is caused by an antibody reaction to ttg 6. There are tests being developed by Dr. Hadjivassilliou but they are not on the market yet. The best indicator at this point if you have gluten ataxia is to go gluten free and if the symptoms resolve chances are you have it. Take care, Kamma PS - Prior to getting my diagnose, I went through three years of increasing dizziness/vertigo, stumbling, falling/walking like a drunk and seizures. The neurologist kept sending me to all these other experts for testing which included the ENT/Vesitibular Testing which came back normal.
  6. 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 as well as tinnitus (ear ringing) is a predominant symptom in that while it occurs sporadically in MAV. If you're able to afford it or have coverage, get a hearing test done. You can also get vestibular testing done which is pretty straightforward. Interestingly enough, there was a study on people with Meneire's in which they were put on a gluten free diet and 30% of those in the study had a reduction in their symptoms. Grain free for me means all the grains (gluten containing ones of course but also others such as Teff, Sorghum, Corn, Soy and so on. Technically they do not contain the gluten protein but are often contaminated in the production process with gluten grains. There was a recent analysis by the Gluten Free Watchdog on both certified gluten free non-gluten flours and uncertified non-gluten flours. You can find it here: https://www.glutenfreewatchdog.org/blog.php?id=6 Rice is considered a pseudo cereal along with quinoa, amaranth and buckwheat (there are a few other pseudo cereals in that group but I can't think of them at the top of my head. I eat rice occasionally and it's always from a brand that assured me that they don't use wheat in the rice-wheat rotation planting. Other people use nut flours like coconut, almond flour and so on but I'm in the place where I"m just happy to eat my veggies, fruit and fish and don't need or want the complex carbohydrates from substitute non-gluten flours. Hope this helps!
  7. 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, or carob Milk products – sour cream, yogurt, cheesecake, buttermilk Asian foods such as miso, tempeh, and foods prepared with soy sauce or Monosodium Glutamate (MSG) Smoked, processed or cured meats (such as hot dogs, bacon, sausage, bologna, salami, ham) Pickled foods (such as pickles, sauerkraut, herring, olives) Nuts and peanut butter Baked items with yeast (yeast doughnuts, raised cakes and hot breads) Certain fruits (citrus fruits, bananas, pineapple, avocados, figs) Caffeine from coffee, tea or cola drinks
  8. 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 noise induced vertigo. The process to healing started for me in going absolutely grain free as I was diagnosed with gluten ataxia and was reacting to minute amounts of gluten. As my balance and gait started to steady and the seizures started lessening, I tackled the other food triggers to see if it helped with the vertigo and it did. I'm very strict on it and don't cheat. I notice that other people on the MAV boards are not as strict and don't have as much of a success. Adhering to the diet and lifestyle changes is so important and I was so desperate to get better that it gave me great motivation. Being in motion is actually a lot better than being still with MAV so driving and feeling okay makes sense. My attacks would last for weeks. It was maddening. I don't have the spaced out aura but other people on the MAV forum do. Do you sometimes have pain in the ear and/or ringing with the attacks?
  9. 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 medication method, others choose avoiding the designated food triggers (caffeine, salt, yeast, msg, citrus fruits, nitrates, etc.) and others choose a combination of both. For myself, I eschewed the medication part of it and solely avoid the food triggers. The feeling behind it (and there's not much there as it's a relatively new diagnose) is that your brain has been overloaded and can't react to certain triggers any longer. This is the best hypothesis that they are able to come up with. It shares some of the same symptoms as Meneire's Disease and can often be confused with it. However, Meneire's Disease has the additional symptom of hearing loss of which is missing in MAV.
  10. 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 as trouble walking, motor skills impeded, seizures and slurred speech/brain fog. In addition, there are a large amount of gluten ataxia patients that have the bright white spots on the brain and also suffer migraine as a reaction to gluten. If you found some relief of the symptoms going gluten free, this could be the underlying cause. People with gluten ataxia appear to be very sensitive to minute levels of gluten and the symptoms take longer to subside than for people with celiac. Recovery can take anywhere from a few months to up to a year. It also involves an immune response different than celiac in that it is the TTG6 enzyme that the immune system reacts to (as opposed to the TTG2 enzyme in celiac) and the antibody attacks the Pukinje cells in the cerebellum part of the brain. A large number of people with gluten ataxia test negative for celiac. There is a test being currently developed for the TTG6 enzyme but it's not on the market yet. Damage could be permanent if gluten is continually ingested. I'm unclear from your post if the nerve in your neck was discounted by the neurologist as being the culprit of your symptoms. If so, and you want to investigate gluten ataxia further, Dr. Marios Hadjivassilliou is the leading researcher on gluten ataxia and you can google for his research papers. A quick overview can be found on Jane Anderson's site here: http://celiacdisease.about.com/od/GlutenAtaxia/a/What-Is-Gluten-Ataxia.htm I hope you're able to find some answers. Take care, Kamma
  11. 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, it it's gluten ataxia it will take longer to recover than what the normal recovery course is for celiac. If there is no damage to the cerebellum, you should see incremental improvements over months. If there is damage to the cerebellum, which is permanent, recovery might look a little different. Also, people with gluten ataxia seem more sensitive to lower levels of gluten so it might be wise to go super clean and really watch for cross contamination in other grains and definitely reduce 'gluten free' processed products if you haven't already. I'm glad you have Dr. Hadjivassilliou looking at your brother's records and I hope he can provide some answers and a way to go from here. Half the anxiety is not knowing and once you have a diagnosis you can find a path to treatment. Keep me posted. A big hug to you. Kamma
  12. 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. If these tests were normal, then the next step would be to look for neurological causes originating in the brain. Some of the underlying conditions for a neurological cause are: Multiple Sclerosis Gluten Ataxia Brain Tumour Migraine Associated Vertigo Meneire's Disease Vitamin Deficiency Superior Canal Dehisence There is much overlap between Meneire's Disease and Migraine Associated Vertigo. Vertigo plays heavily in both of them but Meneire's Disease also has tinnitus and some hearing loss. The experience that you described as having is similar to what I went through for about three years. Horrible, isn't it? I really empathise with you. In my particular case, I was diagnosed gluten ataxia and migraine associated vertigo. I had extreme problems with vertigo, balance, walking properly and seizures. Migraine associated vertigo does not mean you feel migraine headaches but that it manifests as vertigo. Gtuten Ataxia is where the reaction to gluten proteins takes place in the cerebellum (balance centre of the brain) and your body starts attacking the Pukinje Cells that make up the cerebellum. I've been on a grain free/gluten free/processed food free diet regime for a year and a half and I am now back to normal. I would strongly urge you to try and get tested for the above conditions if you have not already done so. If there are obstacles in obtaining testing here are some websites that would help in determining the direction you think you should go. Meneire's Disease Forum http://www.menieres.org/ Migraine Associated Forum http://www.mvertigo.org/forum/ Dr. Timothy Haines (North American Renowned Neurologist who works with balance disorders) http://dizzy-doctor.com/dhd.php The Gluten File (a depository of research articles on gluten ataxia, gluten sensitivity, neurological manifestations of gluten reaction, etcetera) https://sites.google.com/site/jccglutenfree/theneurologicalmanifestationsofgluten and of course, here at celiac.com Hope this helps in some way. Please do remember, that with proper treatment, the vertigo will go away. You won't be stuck like this forever! It might take some diligence on your part at the beginning to start digging and figuring out the causes and what you can do to manage it, but you have already started that process by asking here. Vertigo is not a forever thing and it pays to keep that in mind when you're having a really crappy day and can hardly walk without holding on to walls and you feel your life crashing in on you. You'll get better. Keep holding onto that. Kind regards, Kamma
  13. 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 as the normal range is 1 - 10 and the equivocal range (antibodies are present but not enough to confirm celiac disease causing an inconclusive test result) is 7 - 10. Anything above 10 would be confirmation of celiac disease or not responding to the diet. Kind regards, Kamma
  14. 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 valuable for some celiacs who are still reacting to lower, trace amounts of gluten. Her reactions to gluten at lower levels are proof enough that she is reacting and she has always been diligent in testing out her reactions against the suspect food, ruling out different causes and sharing that here. She is not an off the cuff poster and has always provided much detail in her experiences and what she has done to make herself better. Please do remember that the 20 ppm is a recommendation/suggestion from the studies and is always said in conjunction with "safe for the majority/most celiacs". Dilettantesteph's posts reflect the experience of a celiac that is outside of the majority of celiacs but is esteemed in providing information for those that still have problems with the 20 ppm gluten levels. There is very little research on these sensitive celiacs (but are confirmed by Fasano's recent study) so first hand knowledge shared here by posters such as herself is valuable to those still finding their way.
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