Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    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 ? 

 

 

Link to comment
Share on other sites

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.

Link to comment
Share on other sites
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

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
  • 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

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,091
    • Most Online (within 30 mins)
      7,748

    Grammar B
    Newest Member
    Grammar B
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Oh, okay. The lower case "b" in boots in your first post didn't lead me in the direction of a proper name. I thought maybe it was a specialty apothecary for people with pedal diseases or something.
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! There are other things that may cause elevated tTg-IgA levels, but in general a reaction to gluten is the culprit:    
    • cristiana
      Hi @trents Just seen this - Boot's is a chain of pharmacies in the UK, originally founded in the 19th Century by a chap with the surname, Boot.  It's a household name here in the UK and if you say you are going to Boot's everyone knows you are off to the pharmacist! Cristiana
    • Denise I
      I am looking to find a Celiac Dietician who is affiliated with the Celiac Disease Foundation who I can set up an appointment with.  Can you possibly give some guidance on this?  Thank you!
    • Posterboy
      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
×
×
  • Create New...