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I have been gluten free for over a year now and done pretty good finally, until last week. Full blown gluten ataxia episode right now. I have investigated the "four" gluten free proccesed foods and discovered that a gluten free (local) pizza I've been eating had "less than 20 ppm" of gluten. I am hypersensative. No more of those of course, but my question is: although I know one has to be eating the gluten before any of the standard tests, but in reading that the "IgG" (non-demiated) with "Quest" Labs can determine it you have gluten ataxia, do you have to be eating gluten for that one? Thanks

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I would imagine that yes you would need to be eating gluten. The best way to get an answer to this though would be to call the lab.

Gluten ataxia can also be diagnosed through an MRI. They would look for something called UBO's or unidentified bright objects.

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I would imagine that yes you would need to be eating gluten. The best way to get an answer to this though would be to call the lab.

Gluten ataxia can also be diagnosed through an MRI. They would look for something called UBO's or unidentified bright objects.

Duh!!! Yea, contact the lab. Of course!! My brain is not working right now! I will, thanks. I know that when the ataxia is to the point that you can't walk, etc. then an MRI shows cerabellum atrophy. I have seen some pictures of MRIs like that on line. The quack neurologist that I saw said my MRI was okay even though the balance tests indicate that it coming from my brain. The eye movements too. But she diagnosed me with "Hperventalation Syndrome". I have an extesive list of symptoms which she did not go over with me and she was extremly lacking knowledge of the "Brain Grain Connection." I am considering requesting my MRI for another doc. to look at. I was told by some in the medical community that UBO's are often ignored if they are an "unknown" kind of thing. Anyway, I can't find a doctor around here that knows anything about gluten ataxia, just Celiac, and not too many know much about that!!! They all better get a clue, because 1 in 8 have Celiacs or Gluten Intollerance!

Speaking of which, I really feel so alone in this, I appreciate so much that I have you all, but I need help from a knowledgable doctor at this point. I am walking with me feet apart again to hold me up! I am discouraged again. I was doing so good, I don't really know what happened. I am (other than the pizza) so careful and eat mostly fresh and organic foods. Right now, and for days I have had my neck a mess and up from the base of my head to my crown feeling like I am going to have a seizure or somehting. Twitching and numbess and tingling in face, mucles contracting here and there and a pulling sensation on the left facial area, ocular pain, visual disturbances, dizzy and sick to my stomach. Constipation, etc, etc. It's messing up my life!

Thanks for reading my "VENT"!

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I get neuro symptoms from gluten too.

I am really concerned about the new EU law that permits foods to be labeled gluten free as long as they are under 20 ppm.

I cannot have any ppm.

Here where I live most celiacs eat wheat starch. I cannot have any of that. I have to cook everything from scratch.

I would make pizzas from scratch myself, tried it once and it was good. (I do not eat much bread etc)

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I get neuro symptoms from gluten too.

I am really concerned about the new EU law that permits foods to be labeled gluten free as long as they are under 20 ppm.

I cannot have any ppm.

Here where I live most celiacs eat wheat starch. I cannot have any of that. I have to cook everything from scratch.

I would make pizzas from scratch myself, tried it once and it was good. (I do not eat much bread etc)

I am DQ 1 and 3 which are the genes for imulogical gluten sensitivity and gluten ataxia. I also do not carry DQ 2 or 8. The research on gluten ataxia comes with any of those genes, but no digestive symptoms in alot of DQ 1 or 3. (although I tested negative for Celiac after being gluten free for too long, I did have some upper digestive and bowel problems too)

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I just googled gluten ataxia, and found this article. May be worth looking into Candida?

http://www.denvernaturopathic.com/news/celiac.html

Great article, thanks so much. I am geting ready for a round of antibiotics, couldn't have come at a better time. Thanks again!

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Great article, thanks so much. I am geting ready for a round of antibiotics, couldn't have come at a better time. Thanks again!

I hope your feeling better by now. For me it can take up to 3 weeks for the ataxia to go away after I am glutened. Make sure you double check and make sure that the antibiotics are for sure gluten-free and I hope the illness your taking them for resolves quickly.

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I hope your feeling better by now. For me it can take up to 3 weeks for the ataxia to go away after I am glutened. Make sure you double check and make sure that the antibiotics are for sure gluten-free and I hope the illness your taking them for resolves quickly.

Ya, I am still a mess. It's been about 3 weeks now. I am better early now and worse by evening. It's starting to leave. The thing is, I know I did not get glutened! After reading the article and doing the "spit" test for Candida, and realizing that my tongue is white for a reason (duh!) along with many other things, and knowing I have increased my sugars and other carbs since going gluten free and reading research that says the candida infection has similar protiens that cause the body to react like it has been glutened, I now think I am reacting with the ataxia to the candida.

I spent alot of time on this site reading about the candida, but because I did not have a vaginal yeast infection, I did not think I had a problem. I was lacking knowledge on the slubject. I spent half the afternoon today at the local health food store being educated by the owner, Bob. Thank God for you all and Bob! I picked up the (expensive) probiotics today and found a all natural sweetener, "Stevia Plant". I start tonight.

Is it true that I may feel worse for a bit (a few days)???

Also, I noticed you have double DQ 3 genes! Know wonder you have Ataxia. Do you at least have a doctor that knows something about it? (I hope) Wish I did.

And, good news, I had the IgG blood test today by "Quest". The "NON DEMEATED" Quest lab said I did not have to be "gluten free" to have it, thank God. I'll post when I get the results. If I come up negative for antibodies, where does that leave me? Could it be the Candida? I have DQ 1 and 3 (Imulogical gluten sensitivity and ataxia genes)

Anyway, I must lay this tired body down. I have cried a lot today, I just want to get well again. Thanks people!

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I just googled gluten ataxia, and found this article. May be worth looking into Candida?

http://www.denvernaturopathic.com/news/celiac.html

Wolicki, I just want to give you a special Thank You! This may be what will help heal me soon. I should have listened to others before on the issue of Candida, but for some reason this article made it click for me. I wrote a post this evening here on my day with this stuff, hope you read it. Thanks again!

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Also, I noticed you have double DQ 3 genes! Know wonder you have Ataxia. Do you at least have a doctor that knows something about it? (I hope) Wish I did.

I wish I had a good doctor who knows something ataxia, or even celiac for that matter. My ataxia has gotten much, much better since I went gluten free but it was not a quick process. I had the most remarkable amount of healing in the first six months but continued to improve over the next couple of years. By the end of two years I had regained weak reflexes in my legs, something I hadn't had since childhood. I still get off balance very easily even when not glutened but I was really pretty far advanced in the nerve destruction by the time I was diagnosed and don't expect a full resolution but at least I don't need canes anymore.

I should mention that I have to be really, really strict with the diet including personal care products but as the years go by it has become easier.

Be patient with your body, I know it is hard but nerves do take a while to heal. But heal they will. I did have the coated tongue you refer to before diagnosis but never addressed any possible issues with candida. It resolved on it's own after I had been gluten free for a bit. I don't know if the candidia diet would have healed me quicker but with all the other restrictions I had I didn't want to restrict any farther than I already had. I did do very low carb and only natural sugar for awhile but that was due to a misdiagnosis of diabetes. If you decide to do the candida diet let us know if it helps.

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I wish I had a good doctor who knows something ataxia, or even celiac for that matter. My ataxia has gotten much, much better since I went gluten free but it was not a quick process. I had the most remarkable amount of healing in the first six months but continued to improve over the next couple of years. By the end of two years I had regained weak reflexes in my legs, something I hadn't had since childhood. I still get off balance very easily even when not glutened but I was really pretty far advanced in the nerve destruction by the time I was diagnosed and don't expect a full resolution but at least I don't need canes anymore.

I should mention that I have to be really, really strict with the diet including personal care products but as the years go by it has become easier.

Be patient with your body, I know it is hard but nerves do take a while to heal. But heal they will. I did have the coated tongue you refer to before diagnosis but never addressed any possible issues with candida. It resolved on it's own after I had been gluten free for a bit. I don't know if the candidia diet would have healed me quicker but with all the other restrictions I had I didn't want to restrict any farther than I already had. I did do very low carb and only natural sugar for awhile but that was due to a misdiagnosis of diabetes. If you decide to do the candida diet let us know if it helps.

I am giving up sugar and using "Stevia" sweetener, but I know I will still eat Pamalas Pancake mix, unless I have to give it up too, but only for awhile maybe. I am on my first day of "mega" doses on probiotics and my mouth broke out tonight. Not sure why, (its all gluten, etc. free), but I did read it might get worse for a bit before it gets better, so maybe that's why. I will be hanging in there.

The lab called today, I had to go do the IgG draw again because the lady that took my blood was so worried about refrigerating it, she forgot to put my name on the tube!!!! The lab would not except it. Cute, but I forgave her and laughed when she owned up! Just a day delay, I can live with that. I'll be in touch. Thanks

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I am giving up sugar and using "Stevia" sweetener, but I know I will still eat Pamalas Pancake mix, unless I have to give it up too, but only for awhile maybe. I am on my first day of "mega" doses on probiotics and my mouth broke out tonight. Not sure why, (its all gluten, etc. free), but I did read it might get worse for a bit before it gets better, so maybe that's why. I will be hanging in there.

The lab called today, I had to go do the IgG draw again because the lady that took my blood was so worried about refrigerating it, she forgot to put my name on the tube!!!! The lab would not except it. Cute, but I forgave her and laughed when she owned up! Just a day delay, I can live with that. I'll be in touch. Thanks

What do you mean by 'broken out'? Are you talking about a rash outside the mouth or are you talking about blisters inside? If you are talking about blisters inside your mouth do call the doctor that diagnosed you with candida and tell them about it. That does not sound like a 'normal' reaction to probiotics to me. If you should start to feel your throat constricting get yourself to an ER quickly.

Also have you already switched to stevia? Are you using pure stevia? There is at least one brand that I have heard of that is not gluten-free so be careful. Also if you are allergic to ragweed the mouth reaction could be from the stevia as they are closely related. There is also agave nectar that can be used as a sweetener that is low on the glycemic index and if the breakout is associated with the stevia it might be something to try.

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What do you mean by 'broken out'? Are you talking about a rash outside the mouth or are you talking about blisters inside? If you are talking about blisters inside your mouth do call the doctor that diagnosed you with candida and tell them about it. That does not sound like a 'normal' reaction to probiotics to me. If you should start to feel your throat constricting get yourself to an ER quickly.

Also have you already switched to stevia? Are you using pure stevia? There is at least one brand that I have heard of that is not gluten-free so be careful. Also if you are allergic to ragweed the mouth reaction could be from the stevia as they are closely related. There is also agave nectar that can be used as a sweetener that is low on the glycemic index and if the breakout is associated with the stevia it might be something to try.

I broke out in what appears to be cold sore blisters inside my bottom lip. This has happened a lot in the last 2 years, mainly when I eat corn. The ingredients in everything I bought seems to be good. The Stevia is Pure, I contacted the company. One container is pure and the other (packets) has "Inulin" fiber made from Chicory root.

My lips feel swollen, but don't look it. I know what a severe reaction and ER required is, believe me, I've been there from Soy, more than once when I was younger. Inside my mouth seems fine except the white tongue.

It's kind of funny because other than the breakout, I actually felt better today than I have in weeks.

On another note, my daughter said to me last night, "I think you dream some of this up." Nice. I was really hurt. As sick as I have been. Whats really funny is that she has at least one of my genes and 3 auto-immune diseases (had graves, thyroid nodules-had if removed and just had major back surgery for bone degeneration etc. two months ago) She will not hear anything about the gluten. It really makes me sad that she won't read about it and face the facts. I feel quite confident that she and my grand-daughter have some problems. She is 35, I can't force her to deal with it.....I breaks my heart.

I am hoping for improvement daily! Thanks for all your support, I don't get it from some of my family.

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