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Member Since 22 Oct 2011
Offline Last Active Jun 12 2014 06:43 PM

Posts I've Made

In Topic: Safe Wines For Super- Sensitive People?

12 June 2014 - 06:40 PM

Here is a link to an article that talks about why vintners don't list ingredients. And grapes are often a crop that is doused heavily in pesticides and herbicides so if you react, it might even be to a residue of something toxic left on the grapes themselves. When I buy wine, I buy organic. But you might also have luck by going to a local winery near you where you can ask them about their ingredients. I also presume that the more commercial the process, the more likely the ingredients lists were determined in a lab rather than just being good, old-fashioned wine making.


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! :)


In Topic: It Was Supposed To Be Over At Gluten Free! Help :(

04 May 2014 - 06:46 AM

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'?

In Topic: Tinnitus And Balance Problems/mild Vertigo

07 January 2014 - 08:27 PM



Hi, Kamma,

I thought I would send some notes from my neuro surgeon that approaches the protocol of my own new MRI...his concerns were as follows:



My impression is that Mrs. Pfeiffer is a 61-year-old female with a left

temporal lesion. I cannot differentiate at this point a brain tumor, primary

or metastatic, versus cavernous malformation that is less likely.

The tumor seems to have a dural-based component, but it is very worrisome the T2

abnormalities surrounding the mass. The plan is to repeat an MRI of the head

with gadolinium with T1 stealth sequence and also GRE. We will make further

recommendations after the MRI. I discussed all this with Mrs. Pfeiffer. She

understood and agreed to proceed with the plan. I am also providing her a

prescription for levetiracetam generic per her request. Her insurance

company does not cover Keppra. Once again, I appreciate the opportunity to

participate in the care of the patient very much.


His further comments were also related to stating my cerebellum was unaffected.  So there are certain pieces as you indicated that the protocol is specific to certain types of MRI's.  Thanks for being here.  


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.  



In Topic: Tinnitus And Balance Problems/mild Vertigo

06 January 2014 - 01:00 PM

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.



In Topic: Tinnitus And Balance Problems/mild Vertigo

02 January 2014 - 10:03 PM


Sorry for the long post.

I'm new to this. I has experienced some lightheadedness at time last summer. It made me nervous as the summer went on, I decided to quick smoking cold turkey September 22. I smoked for 20 years. The quitting went well. About a month later I was more dizzy. The doctor blew it off, along with my heart burn, tingly toes and fingers and intermittent diarrhea. After a second visit he put me on a antibiotic for a "possible ear infection". Then thing became worse: sever dizziness, ear pressure and tinnitus. I also had non stop diarrhea. I should have never takin the amoxiciline. My fiancée sent me to the emergency room, that doctor ordered a MRI, visit to a ENT and neurologist. What happened! I was healthy maybe a lite overweight 2 months before this.

We'll my primary doctor did not like me going to the other doctors and stated you are perfectly healthy and maybe had the start of meniers.

Neurologist suggested B12 deficiency. Turns out my dad has this and gets shoots. Not the answer for me my B12 is fine. Each appointments is one month away.

ENT and audiologist. Dizzy chair test and ear tests revealed nothing. They do think it is inner ear related.

I found one guy posting about dizziness much like mine and after six months it turned out to be celiac. I read the Mayo clinic symptoms and it mentioned: Nervous system injury, including numbness and tingling in the feet and hands, and possible problems with balance. I also have some rashes on my butt, elbow and shoulder. The rashes aren't supper bad or supper itchy. My teeth are dis colored which is mention on the university of chicagos web site.

I have cut gluten out of my diet. Maybe a bad move before it can get in to a gastro doctor. I did not want to wait because I have been dizzy for 3 months now and want relief ASAP so I can help my family and play more with the kids. After being gluten free I might have some slight improvement in my dizziness, brain fog has improved greatly, heart burn gone, stomach still very burrpy at times. I have lost about 22 lbs since mid October (lucky it have some pounds to spare). I do eat and never go feeling hungry.

Does anyone know how long it would take the dizziness to get better? Any thoughts on this story?

Thanks and happy new year




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.../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,


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.  

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