celiac gluten ataxia or epilepsy???REMSSION
 

:) Hi every one ive just been reseaching aura (seizuer or migraine) can take many forms, one of the most comen is a smoky haze, every aura is different and very rarely can be triggered by photsensitive people sunlight ,computors,some and other things, tv's, ect, some people hear things ringing phones that just arn't ringing, unusaul smells,tastes,zigzag patterns, horse shoe colored lights before their eyes.and many more. mine was jittering furniture like everything was behind heat on a road rising on a hot day, wavy like fire, so now i'm investergating this as well. my quest for health is on going and i'm slowly getting there with help from people like every one on this forum, as dr's just put me in the tooo hard basket. which i do understand now, if you dont understand you're own symptoms and be honest about them, then how can drs help, you can read about epilepsy from these sorces they are the only ones ive found so far that explain seizure types ect, <H1 class=main_copy>The National Society for

Epilepsyhttp://www.epilepsynse.org.uk/</H1>
or http://professionals.epilepsy.com/pa...raine_mes.html

or http://www.ilae-epilepsy.org/Visitor...a_continua.cfm

told my dr about my visaul issues the other day and he has put my on valium, and with in three days i'm now walking and the visual stuff has cleard up, i feel like the pain and stiffness has redused from my legs, so i looked up what valium was and it seems to help with seizure and anxiety, so now i'm asking what tha!!!! was it a migraine , seizure, or am i just plain full of anxiety which saddens me a lot,

but for now i take 2 mg at night before bed and 2 mg on waking, i'm highly excited that i have some relief to be honest. i'd sworn i'd never take another drug that could effect my brain,and i feel i've broken my own rule sadly , but remission is soooooo sweet right now. so what tha heck! after 12 years and little remision i'll do anything to help myself. good luck guys and hope you start having some good days soon, as i'm having right now.but having said that i do not intened to take valium for long as ive heard it's very addictive and hard to come off, not to forget the toxic implications ect.hugs from me

jenny ataxia,

Hi Jen,

My daughter had phantom odors and noises, and some visual disturbances with her seizures.

I had wavy heat/mirage lines, trailing lights, some mild jittering vision, blurriness, etc... all with my B12 deficiency. Course, B12 deficiency can actually cause seizures, too... so who knows! And I also had just a couple of episodes of some white lightning bolt lines stuck in my vision for hours at a time... those I'm told were visual migraines.

It can be a guessing game about what is causing what, especially if symptoms come and go, like some did for me. But, keep at it. It might be many things; some related and maybe some unrelated. My guess is mostly related. It has taken many of us many years to figure things out, and some of us are still a work in progress.

Cara

negative gene test for celiac. totaly confused
 

sorry guys i'm back again, just took some time out to ball my eye's out, dont know how to feel or what to think,i'm happy my family dont have to worry about celiacs now , which is why i had the test in the first place so it's all good.

gluten sensitivty wheat allergy????? epilepsy doc still wants me to stay on valium. every day till we get the MRI and EEG. i trust him so i'm keeping my fingers crossed. its not MS now time will tell .but if gluten sensitve people can have gluten ataxia, and how dose someone test for wheat allergy. isnt it all the same thing????? some one at some stage mentioned skin scratch test is this a reliable test? ive heard conflicting reports on that test. bogus or not.when ever i eat gluten or wheat i go completly nut's in the head dyas later.itch all over no rash, crying fits ect , head wont relaxe. and i get a very tender tummy all over especaily on the side of my to the right side of my navel.chronic constipation. just recently my lips have just in the last 2 months to swell (no ulcers though) why would this just start to happen now and not before.

or is it something else. and why do all these things go . when i'm gluten free. soooooooooooooooooo confused. thanks guys. love jen from oz



jenny ataxia,

Hi Jen,

If your doctor ruled out celiac disease by genetic blood testing, he probably only looked for the main celiac genes, which are HLA DQ2 or HLA DQ8.

What Dr. Hadjivassilou's research on gluten ataxia points out is that 20% of his patients had a different genetic type... HLA DQ1. Has that been tested for? Typically, it is not.

Dr. H's research is all relatively new, most of it in the past ten years... which means it is just beginning to cross over into "real time" medicine.


The only place I know of where you can easily get testing done for HLA DQ1 is via Enterolab in Texas. However, any doctor could order the testing to look for HLA DQ1. They just don't know to look for it because it isn't considered a main celiac gene.


Wheat allergy is an IgE immune system response and is different than gluten sensitivity (which involves and IgA or IgG immune system response). Wheat allergy will show up on an allergy skin prick test. Gluten sensitivity will not.

Cara

Amazed as similar problems
 

I have similar auras but gave up talking about it as no one seems to understand. I was just told I am celiac about 4 years ago and then it was confirmed about two. Sometimes I have gluten ataxia which was previously thought to be ms! I often see floating purple light, have very blurry vision and sometimes a migraine comes but not always. I have about 30 food allergies and citrus is a big trigger of migraine for me. I have been told that my food allergies are due to my celiac but in celiac support group no one else mentions this problem. One of my doctors told me that I have seizures due to odors and sprays which I do believe may happen. They are not typical tho.
Thanks to all of you who posted thereby helping me to understand this better.
Canaryalice

I have not had this aura thing since going gluten-free. Must be connected somehow. I am neither DQ2 or DQ8, I suspect DQ1 because of the neurological symptoms.
The floor seems so far away when glutened (might be a symptom of gluten ataxia)
The gluten ataxia comes form antigliadin antibodies attacking the brain. Not from flattened villi...

nora

please check out tyramine+migraine, good luck