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

Your Experience With Ataxia

cmoore

By cmoore
in Coping with Celiac Disease

Recommended Posts

cmoore Apprentice
cmoore
Posted

I had a question about anyones experience with Ataxia and how long after going gluten free did you notice significant change for the better?

Thanks for sharing.

C. Moore

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I had a question about anyones experience with Ataxia and how long after going gluten free did you notice significant change for the better?

Thanks for sharing.

C. Moore

I noticed a great improvement in about 6 months. Mine had progressed to the point where I had no reflexes and needed canes or walls to walk. When given an electromylogram my right leg was basically flat line. At six months I ran up the stairs without thinking and when I realized what I had done I burst into tears. By the time I had been gluten free for 2 years I had reflexes again and now am able to walk normally. It may not take that long for you to get some relief as mine had been progressing since I was a child and I was in my 40's before I was finally diagnosed. Be patient and if you can get an appointment with a PT they may be able to help you progress a bit faster.

cahill Collaborator
cahill
Posted

Mine greatly improved within the first year. Like Raven I had issues since childhood and was in my 50's when I went gluten free.

I dont walk into walls any more ,, not as often as I did anyway :P ,, and this is the first time in a very long time I remember getting thur the winter with out taking a severe fall.

When I get CC from soy I do notice some hand tremors and slurred speech along with other neurological symptoms, but I am not sure if that is from the soy CC( my reaction to soy is mainly neurological ) or if it is remaining damage from the ataxia that is intensified by the neurological symptoms caused by soy CC.

cmoore Apprentice
cmoore
Posted
  • Author

Wow, thanks so much for the information. I'm not having this severe a reaction yet. Until talking to someone who runs a Gluten free store in my town, I was not aware of this. In her case, if she gets Gluten from some source, in an hour or to, she said she is bumping into walls.

For a few years I noticed I had days when words would not come out of my mouth properly ... like being tongue tied. Problems with typing, both with intermittent spasms in my fingers and with just processing information properly. My equilibrium has been getting messed up, Im not falling or anything but I bump in to things now and then. For the most part Ive been able to cover up this so no one notices what Im feeling but I know I need to do this. Ive never had a test, other then when I was 9 years old.... and then the DR. just said I had a mild allergy to wheat. Manifesting in sleepiness or lethargy for the most part. My guess is now at 55, its more severe. I don't have medial insurance right now, so Im just going to work hard to get Gluten free and see how it shakes out. There are other symptoms of course other then Ataxia but I wont go into that part right now.

What you folks replied with so far is great thanks. I have many questions but will not try and post them all at one time and before I read other information on this site. Ill be keeping an eye on this forum for sure.

PS: I hate the brain fog and feeling like my mind is swiss cheese. Even with this, I pent the last 15 years working in the high-tech field where my brain was everything.

sandsurfgirl Collaborator
sandsurfgirl
Posted

Mine went away fairly quickly and I didn't even realize it had gone away until I stubbed my toe. I thought wow I haven't bumped into anything in such a long time! So I'm not sure exactly when it went away. I had so many symptoms I lost track of that one.

  • 10 months later...
cmoore Apprentice
cmoore
Posted
  • Author

I noticed a great improvement in about 6 months. Mine had progressed to the point where I had no reflexes and needed canes or walls to walk. When given an electromylogram my right leg was basically flat line. At six months I ran up the stairs without thinking and when I realized what I had done I burst into tears. By the time I had been gluten free for 2 years I had reflexes again and now am able to walk normally. It may not take that long for you to get some relief as mine had been progressing since I was a child and I was in my 40's before I was finally diagnosed. Be patient and if you can get an appointment with a PT they may be able to help you progress a bit faster.

My God, I shudder to think about all the people on god knows what RX's when its just their gut being trashed by Gluten Good Lord!

tom Contributor
tom
Posted

My ataxia was gone for good w/in maybe 4-6 wks of 100% gluten-free. (It actually first started while I was uninformedly 99% gluten-free)

Barely being able to complete sentences didn't go until I was also soy-free for a couple wks. What sucked was that i'd already done multiple elimination trials of soy over a couple yrs for 3 days, 5 days, a week & it didn't make a difference until I tried 2 wks w/out soy.

D'oh!! Just saw that this thread started 10mos ago! So, Clayton, everything good?

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

Celiac.com Sponsor (A8-M):


cmoore Apprentice
cmoore
Posted
  • Author

Ive not really started this in earnest until the last day or so. I just got back on the forum in the last 48 hours. Honestly I found it hard to believe this was Gluten related and as far as SOY thats a whole other thing I never heard of before. As I said on another thread, Im 56 years old now and virtually grew up on vegetable protein which was all gluten and soy. My father has been a vegetarian since he was 17 and our whole family just did things that way. Clearly its caught up to me after all these years. I started having issues with balance about 4 years ago but its been getting worse in the past few months. I have yet to go 100% gluten or soy free. I thought it was all Candida related. My Step daughter and her boyfriend recently went on the paleo diet which by design excludes both gluten and dairy. Perhaps to make is easier for me at the start I should buddy up with them, get some menus and try that out for a while.

Gluten AND Soy wow... I wonder. There have been other issues as well. I think its time to get serious about it. All of you folks have been really great I keep it coming.

Clayton

Archived

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

Go to topic listing

  • 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
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748
    VanessaC
    Newest Member
    VanessaC
    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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.