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Ataxia?

ZenGrowing

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ZenGrowing Rookie
ZenGrowing
Posted

I had to relearn walking twice as a young child.  Even today, I could not walk a straight line to save my soul.  Periodically I have to use a cane, and twice now, for a year or more each time, I've needed to use a wheelchair. The doctors have never been able to find a definite cause, though they've speculated on everything from MS to spinal impingement exaccerbated by stress.  Could this possibly be ataxia?  How does ataxia present?

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cyclinglady Grand Master
cyclinglady
Posted

Welcome!  The first step is doing some research in gluten ataxia and then ask for your doctor for a celiac antibodies test (full panel and not just the cheaper screening test).  Gluten ataxia is very new and many doctors have not heard about it.  

Here is some information about gluten ataxia:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

 

Testing:

Open Original Shared Link

From what I understand a very strict gluten free diet is required which can be hard, but not impossible.  (As a person with celiac, I am on a strict diet).  Neurological damage can take a very long time to heal.  Often a year or two.  

I hope other members who have had first-hand experience can help you.  I wish you well!  

ravenwoodglass Mentor
ravenwoodglass
Posted

I had severe ataxia before diagnosis. For me the balance issues felt like I was walking on a ship in rough seas. Ataxia started in early childhood but my problems with walking as a child were attributed to some congenital malformations that were corrected. Turned out that wasn't the case. I was undiagnosed for over 40 years and eventually I also had trouble with speech, and even swallowing. They thought I had MS also. Ataxia causes brain lesions similiar to the ones found in MS but a spinal tap didn't show the 'debris' that is found with it. The doctors then told me it was nothing and 'I wanted to be sick'!!!

I also had the skin form of celiac (DH) and for the last 15 years almost constant D.

I did heal but it did take time. However by the six month point I caught myself running up the stairs and when I realized what I had done I sat on the top step and cryed.  I was far from fully healed though that took a few years and the help of a couple of good Physical Therapists.  I still have issues with balance and speech if I get glutened but it does resolve now in a couple weeks.

Did they do an MRI with you? If that is what lead them to think it was MS do be aware that not all Neuro Docs are aware of UBOs (Unidentified Bright Objects) and that they are associated with celiac.  Do get the full celiac screen that Cyclinglady advised and keep eating gluten until all celiac related testing is done. It wouldn't hurt to give the diet a good and very strict try after celiac testing is finished.

I hope you are doing better soon.

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    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
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      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
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    • JoJo0611
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      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

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