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Maybe Gluten Ataxia?

joshy

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joshy Newbie
joshy
Posted

Ill start the story from the start  maybe someone here might know more then some "doctors"  

 

 Im 23 male  start of the year i started doing alot of gym,  Id start at 7pm till 8 30pm  id end up sleeping around 3am - 5am an sleep thru till lunch time   anyways  one day i woke up and was constipated and my vision was weird  it felt like i wasnt here kinda like thru someone elses eyes   week being constipated then started having bad stomach pains an headaches then couple times after acouple pieces of toast my left arm started feeling really numb and weird  started going to the doctors on an off an none could work it out  had ct scans top an bottom, anti acid tablets  nothing worked,  after about 5 months of problems  finally looked up gluten symtoms  and most of mine was there,  so i started a gluten free diet within a week the headaches, stomach pains all went now still hanging out is the vision problems, concertation problems,  if i look at something for too long ill just start day dreaming.....

i have had the anti body test but already went gluten free before that,  then recently had the gene test which came back negative also,  Have been gluten free 7 weeks now

 

 

question is  could i have gluten ataxia? 

Is this something that should repair over time? 

Could any of this be because of the sleep habits ? 

 

 

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nvsmom Community Regular
nvsmom
Posted

question is  could i have gluten ataxia? 

 

You could. Gluten ataxia may occur (as far I understand it) in those that have celiac disease or non-celiac gluten intolerance (NCGI). You were tested for celiac disease, although possibly not accurately due to the short length of your gluten challenge, because many symptoms improved on the gluten-free diet, I would guess that you have celiac disease or NCGI. 

 

You mentioned the genetic tests. Not all celiacs have the DQ2 or DQ8 genes. Most celiacs do have them but not all. The last numbers I saw, in the book Dangerous Grains, said 90 and 94% of celiacs have the DQ2 and DQ8 genes respectively. There are a minority of people around here who had negative gene tests yet still have the disease. There are even more who had negative blood tests and a positive biopsy  or negative biopsy and a positive blood test... And then there are a BUNCH who have NCGI who have suffered terrible symptoms (same as a celiac's except the villi damage isn't there).

 

Is this something that should repair over time? 

 

Probably. Symptoms associated with the nervous system tend to take the longest to heal but not all damage is repairable. Think of gluten induced dementia, the patient can often stop the progression of the problem on a gluten-free diet but they usually won't get better.  :(  I think your age and how new these symptoms are will work in your favour and you will improve; it just may take another few months or a year to get there. One and a half month gluten-free really isn't very long. 

 

In the mean time, be on the look out for other problems. Could you have another food sensitivity? Milk intolerance or something else? A food and symptom journal can help you to see trends.... But I'm betting you just need more time gluten-free.

 

Could any of this be because of the sleep habits ? 

 

 

I would guess yes.  Though are some crazy hours you are keeping! LOL Are you a student? I'm trying to imagine what sort of work you would do with those hours... If you are very consistent with your sleep schedule it probably won't bother you as much but if you vary it a lot (go to bed at midnight one night and then 5am the next) it's going to mess you up.  Could you try for a less nocturnal schedule, and one that is very consistent? Those hours would have me day dreaming too. Heck, being a student had be daydreaming more than I do now... ready boring texts is a killer, especially if tired and not feeling your best because you are still healing.

 

Good luck and welcome to the boards.

joshy Newbie
joshy
Posted
  • Author

I will try to adjust my sleeping pattern wasnt really for any reason just was when id fall asleep, i did gym alot so took afew pre workouts which was a big energy buzz so itd keep you awake

JustCricket Newbie
JustCricket
Posted

I have had some similar symptoms. It was like migraine aura or something. I would turn my head, but the vision wouldn't really match what I was supposed to be looking at. Like the signal from the eyes took longer to get to the brain, than normal. 

 

I did have a headache at the time, as well. 

 

I get dizziness a lot. Less than I used to, but I think I'm still in the repair stages, too. Taking a multivitamin seems to have helped some. I also will eat grits to assist with iron, and I cook in cast iron. I get dizzy when I run, too. I hate that. I never go out without downing some water first, and I eat a light something or other before, too, so I know there has been something going on. 

 

I seem to have a low level of neuropathy in my toes, was dx'd with carpal tunnel, and have a wicked pain in my driving finger. lol. Oh, and I run into things. lol. 

 

Sleep has been important, but sometimes, I seem to sleep too much. As others have stated, I have slept for 14 hours, 2 days in a row. Then, there are times I can't sleep at all. Even when I've slept a lot, I'll get the dizziness, lack of coordination, etc, that is usually associated with fatigue. Right now, I have this weird tingle in my leg that seems different from the sciatica I've experienced since my oldest was born.

  • 1 month later...
Jonvon Newbie
Jonvon
Posted

Ill start the story from the start  maybe someone here might know more then some "doctors"  

 

 Im 23 male  start of the year i started doing alot of gym,  Id start at 7pm till 8 30pm  id end up sleeping around 3am - 5am an sleep thru till lunch time   anyways  one day i woke up and was constipated and my vision was weird  it felt like i wasnt here kinda like thru someone elses eyes   week being constipated then started having bad stomach pains an headaches then couple times after acouple pieces of toast my left arm started feeling really numb and weird  started going to the doctors on an off an none could work it out  had ct scans top an bottom, anti acid tablets  nothing worked,  after about 5 months of problems  finally looked up gluten symtoms  and most of mine was there,  so i started a gluten free diet within a week the headaches, stomach pains all went now still hanging out is the vision problems, concertation problems,  if i look at something for too long ill just start day dreaming.....

i have had the anti body test but already went gluten free before that,  then recently had the gene test which came back negative also,  Have been gluten free 7 weeks now

 

 

question is  could i have gluten ataxia? 

Is this something that should repair over time? 

Could any of this be because of the sleep habits ?

How are the vision problems now?

Thanks and happy new year

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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
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      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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