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Gluten ataxia: Wondering if I have it?

lrlazarov

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lrlazarov Newbie
lrlazarov
Posted

Hello, everybody!

It's my first post here on the forum. :) I'm 25 year old and I leave in Bulgaria, Europe. I've been gluten free for the last 5 years. Initially when I started my gluten-free journey I didn't have ataxia symptoms but I wasn't very careful then and I often got glutened. Then the ataxia showed up gradually. Now I have slight unsteadiness almost all of the time and when I get accidentally glutened my symptoms get worse. I wanted to share my experience and hear about your experience too so that I get a better understanding if it's really ataxia or it's something else. Here are some of my questions:

  • How quickly does the ataxia symptoms return after you get glutened (mine come in a matter of minutes, if not seconds - and I am curious if that's even possible or my mind is playing tricks with me)?
  • Is the ataxia the first symptom to show after a reaction (even before the abdominal cramps, etc.)? Or they are the last to show up for you (or they don't show up at all because you've healed, etc.)?
  • After going gluten free did the ataxia completely resolved or it's still there but just less noticeable?

...And I can probably ask you a lot more things but that's a good start :) Any comments are welcome and appreciated because I've been fighting this battle on my own for years now – no one in my country is even aware of things like non-celiac gluten intolerance, gluten ataxia, etc.

I should also point out that for the last 3 years I've been eating only WHOLE, REAL foods and nothing else. I am really careful about cross-contamination. So I feel like I am doing my absolute best to avoid all gluten but the unsteady feeling and lack of balance is still there. It's not like I am falling or anything, but it's very disturbing and sometimes scary – and most importantly it stops me from fulfilling my full potential and going after my dreams.

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kareng Grand Master
kareng
Posted
24 minutes ago, lrlazarov said:

Hello, everybody!

It's my first post here on the forum. :) I'm 25 year old and I leave in Bulgaria, Europe. I've been gluten free for the last 5 years. Initially when I started my gluten-free journey I didn't have ataxia symptoms but I wasn't very careful then and I often got glutened. Then the ataxia showed up gradually. Now I have slight unsteadiness almost all of the time and when I get accidentally glutened my symptoms get worse. I wanted to share my experience and hear about your experience too so that I get a better understanding if it's really ataxia or it's something else. Here are some of my questions:

  • How quickly does the ataxia symptoms return after you get glutened (mine come in a matter of minutes, if not seconds - and I am curious if that's even possible or my mind is playing tricks with me)?
  • Is the ataxia the first symptom to show after a reaction (even before the abdominal cramps, etc.)? Or they are the last to show up for you (or they don't show up at all because you've healed, etc.)?
  • After going gluten free did the ataxia completely resolved or it's still there but just less noticeable?

...And I can probably ask you a lot more things but that's a good start :) Any comments are welcome and appreciated because I've been fighting this battle on my own for years now – no one in my country is even aware of things like non-celiac gluten intolerance, gluten ataxia, etc.

I should also point out that for the last 3 years I've been eating only WHOLE, REAL foods and nothing else. I am really careful about cross-contamination. So I feel like I am doing my absolute best to avoid all gluten but the unsteady feeling and lack of balance is still there. It's not like I am falling or anything, but it's very disturbing and sometimes scary – and most importantly it stops me from fulfilling my full potential and going after my dreams.

Have you been to a doctor about this?  This seems serious and may have nothing to do with gluten. Don’t mention gluten, just tell the doctors what is happening

Ennis-TX Grand Master
Ennis-TX
Posted

My ataxia hits before the cramps, vomiting, or anything else, it will appear mildly with even supposedly gluten-free foods that are contaminated. Mild and slight exposure will cause me to get numbness in the hands, drop stuff like crazy, and not notice when stuff is hot. Last major straight up gluten food back in 2016 from eating out caused to complete motor control and collapse. Then the vomiting hit while I was unable to move on the floor.....

Now one thing that concerns me if you mention a whole foods only diet. Take it a varied diet and well balanced nutrient wise? Another limitation other then celaic that might cause a nutrient deficiency? This makes me think you should get a full panel done on your nutrients and see if their might be other issues.
A B-vitamin complex like Liquid Health Neurological Support and their Stress & Energy formula would be a big help, 1 tbsp each 3 times a day see about finding it on amazon.

One other thing that comes to mind is your glucose, get a monitor and test your blood when you feel "off" see if it might related to it. Diabetes goes hand in hand with celiac often, and this way you can get a idea if the issues are glucose related
It could also be thyroid, hormone, or chemical imbalance issues.

As to how long it last, the initial motor loss ends in 2-12 hours for me, dropping stuff in coordination will restore mostly in the next 24 while the numbness and temperature issues will last over a week. But I had it before going gluten free, so I also got some brain damage and according to the chiropractor some spine damage that might be related. My immune system was attacking my brain and nervous system. It was crazy the brain issues it used to cause with extreme brain fog and loopy thoughts that drove me mad.

lrlazarov Newbie
lrlazarov
Posted
  • Author
2 hours ago, kareng said:

Have you been to a doctor about this?  This seems serious and may have nothing to do with gluten. Don’t mention gluten, just tell the doctors what is happening

Yes, I've been to many doctors through the years - gastroenterologist, neurologists, etc. and it's been all the same - "you're fine boy, it's all in your head". I've had MRI scans and all kinds of other tests. And I am pretty sure I cannot make this up. Now I am working with a gluten specialist from the UK. She thinks the ataxia might also be due to nutritional deficiencies (B12, Vit E, magnesium, etc.) and I am working on fixing those now.

ch88 Collaborator
ch88
Posted
5 hours ago, lrlazarov said:
  • How quickly does the ataxia symptoms return after you get glutened (mine come in a matter of minutes, if not seconds - and I am curious if that's even possible or my mind is playing tricks with me)?
  • Is the ataxia the first symptom to show after a reaction (even before the abdominal cramps, etc.)? Or they are the last to show up for you (or they don't show up at all because you've healed, etc.)?
  • After going gluten free did the ataxia completely resolved or it's still there but just less noticeable?
  • I never had ataxia but I did have confusion before I went gluten free. I feel very anxious within about 2 minutes of eating gluten. Before I went gluten free I was extremely paranoid about certain things but not other things. I could barely understand social interactions before I went gluten free. 
  • The anxiety comes back within a couple minutes. Other symptoms (like extreme hyperfocus) take a day or two before they come back. They last for about a week and then all of them go away.
  •  My symptoms cleared up about 90 to 95 percent.  The differences that I still have are very minor in comparison but some are still there. Fortunately I don't have the emotional problems that I had before.

I have been recovering in steps. Going gluten free helped and there were extreme changes the (things looked and sounded way different to me after I went gluten free) that happened suddenly. Others slowly went away over about a year. Eliminating cross contamination, and avoiding oats helped tons. Also I think if I avoid corn, milk, alchohol take L-glutamine powder, and a complete multivitamin/multi mineral tablet every day I feel best. 

I don't know if I have celiac disease, NCGS, and/or a wheat allergy. 

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