Jump to content
  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Maybe Gluten Ataxia?


joshy

Recommended Posts

joshy Newbie

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 ? 

 

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

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

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

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

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

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,079
    • Most Online (within 30 mins)
      10,442

    jchamp080
    Newest Member
    jchamp080
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...