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

Gluten Ataxia

Marz

By Marz
in Coping with Celiac Disease

Recommended Posts

Marz Enthusiast
Marz
Posted

So I stumbled on a website talking about ataxia, and the link to gluten-intolerance. The symptoms are listed as :

* Poor coordination in physical movements and poor control of muscle movement

* Inability to control the speed or the power of a physical movement

* Headaches

* Inability to speak or form words correctly; speech impediments

I just remembered a problem I was having last year before going gluten free, where I was having difficulty getting words out of my mouth. It was the strangest thing to experience. My sentences were also sometimes very slow and I had to really concentrate to form the words. It would happen in episodes - some days I was fine, other days I really struggled. It didn't help having brain fog at the same time, made me feel like I was getting dumber.

Just realised I haven't had this problem in a *long* time... like I had forgotten I even had this problem. Strike off yet another random issue that I didn't realise was gluten-related!

Other random ataxia symptoms I had - poor coordination yes, but not too bad. I would sometimes close my hand in a drawer because I didn't move it fast enough for my other hand's liking, or scuff my hand against a cupboard because I miscalculated where my hand was and should be :)

Lots of bruises from bumping against desks, and again I haven't noticed many bruises lately at all.

All this has cleared up quite quickly - gluten free 8 months and counting - but I only had these symptoms for a few months before I figured out the gluten culprit, so I probably didn't have much damage.

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

Celiac.com Sponsor (A8-M):


Fire Fairy Enthusiast
Fire Fairy
Posted

Congratulations! I had similar issues and have not noticed any problems of this nature in the past couple months. :) (gluten-free since November 2nd 2010) So glad to be free of this and the brain fog!

Marz Enthusiast
Marz
Posted
  • Author

Here is an extensive write up about gluten ataxia, if anyone is looking for more info, and some success stories :

Open Original Shared Link

ravenwoodglass Mentor
ravenwoodglass
Posted

That's wonderful. So glad to hear your symptoms are resolving. Feels great doesn't it.

hnybny91 Rookie
hnybny91
Posted

Add me to the list of having this symptom go away when I went gluten free. It really is amazing all the things that gluten causes!

kb23 Newbie
kb23
Posted

I began a gluten free diet about three weeks ago for ataxia. I've read so much on it that I am convinced that it has something to do with the symptoms that seem so random, but are connected. Hearing that others are finding relief gives me great hope. Thanks!

  • 1 year later...
Marz Enthusiast
Marz
Posted
  • Author

Oh hey, I just another look at this article, and the lady on which it was based commented an update on her progress. She also left her email, if anyone would like to contact her.

Great news is she's slowly getting better!

Open Original Shared Link

Sarah Bosse here. I just realized today that I could comment on the article above and give an update. I'm glad to see so many comments here.

If anyone would like to email me, n a t u r a l l y g u t s y at g m a i l dot com.

I have not been glutened since January 2010. My balance and coordination has continued to improve, as well as my visual problems. I don't think the peripheral neuropathy has improved; my legs still burn. The visual problems were the last to improve. I don't think I'll ever be 100%. I still fall over easily, cannot look up while standing/walking, and I cannot walk in the dark (I use vision to compensate for balance problems). I cannot kick a ball, even a large one. But my hand coordination is near-normal now. My speech still slurs at times.

I'm glad that those who have gluten ataxia do have a chance of getting better when gluten is 200% avoided. I take extreme precautions, but it's worth it. I feel that if I got glutened again, my symptoms may take me back to where I was several years ago within just a few weeks and I may or may not recover to where I am today.

I noticed several folks mentioned Paleo/Low Carb diets. I have been on the Specific Carbohydrate Diet for over a year now (also treating Small Intestine Bacterial Overgrowth, IBS, Celiac, etc). I've added Atkins restrictions and eat about 35 net grams of carbs per day. No starches, no grains of any kind, no grain products, specific fruits and veggies allowed, all uncured meats that are unprocessed are allowed as well, and most fats. The progress I've seen has been somewhat slow but quite remarkable. I feel like God has used this diet to save my life.

I'm glad to share my experiences and listen if you need an ear. Just email me (my address is above, no spaces).

Sarah Bosse (Gutsy Girl)

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,964
    • Most Online (within 30 mins)
      7,748
    Cbear
    Newest Member
    Cbear
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.