Jump to content
  • Welcome to Celiac.com!

    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):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.