Fredriech's Ataxia

[rkd]

I am new here, and I have Fredriech's Ataxia, hypothyroidism, IBS and am on a gluten-free diet (which has improved almost all of my other symptoms). Is there anybody out there who is dealing with Fredriech's Ataxia?

[AndrewNYC]

I had a type of ataxia before going gluten free. It took me about 6 mos on the diet before I felt like it was corrected/reversed. hope this helps.

I am new here, and I have Fredriech's Ataxia, hypothyroidism, IBS and am on a gluten-free diet (which has improved almost all of my other symptoms). Is there anybody out there who is dealing with Fredriech's Ataxia?

[rkd]

I had a type of ataxia before going gluten free. It took me about 6 mos on the diet before I felt like it was corrected/reversed. hope this helps.

I've been on the diet for almost 6 yrs., and the ataxia is only slightly better (I still can't ride a bike or ski!)...I guess it's a good thing that it's not any worse. I'm lucky to not have a worse case of this ataxia...

[April in KC]

Welcome! I do not have Freidreich's Ataxia, but I did have some subtle symptoms of ataxia prior to learning I had Celiac Disease and going gluten free. I still have the symptoms when I get glutened. I had balance and coordination problems. I tended to misjudge distances and run into doorways, etc. I stubbed my toes and bruised my hips/knees, etc., much more than the average person. It seemed really bad in middle of the night for some reason, if I had to get up - I would just bounce off the walls of the hall. Occasionally I had spinning sensations.

I also had other neuro symptoms, similar to central auditory processing disorder.

That is all resolved now unless I accidentally ingest gluten. My husband says it's like I "get drunk" on gluten. I can't talk well, type well, walk well, etc., until it wears off.

I know there are others here who have gluten ataxia - including some whose symptoms have stabilized but not improved. Also on the BrainTalk communities (different board) there are some others in the section relating to gluten intolerance.

April

[April in KC]

A recommendation to get vitamin levels checked...including the fat-soluble vitamins A, D, E and K...

I have a seven-year-old son who had gross motor delays compared to kids his same age - problems descending stairs, acquiring skills jumping, hopping, skipping, etc. He could not be blindfolded (as in Pin the Tail on the Donkey) without falling over. When assessed for physical and occupational therapy, they said that he has problems with "proprioception."

HOWEVER - his newest GI saw all of this on a report and said that these types of symptoms can sometimes come from Vitamin E deficiency. The deficiency is rare in humans but can occur in conditions like Celiac that cause malabsorption. So he tested his Vitamin E levels - and found they were low. We began supplementation with 200 IU capsules of Dry (Natural) Vitamin E back in November. He seems to be making some improvements. He jumps with a lot more confidence, from greater heights - and he handles the stairs a lot better.

Doc said there is a window of opportunity for this type of problem to be corrected before it becomes permanent.

I don't think this is the cause of all balance and coordination problems, and I'm not sure it's the cause of my own issues (gluten seems to be the culprit in a very direct way). I just wanted to mention it - never hurts to have vitamin levels checked.

April

[April in KC]

Oops - double post.

[rkd]

Oops - double post.

Thanks for your comments and advice, April in KC. I've been given every possible test there is. My condition is a degenerative one, but so far I'm doing very well. Yes, by the end of the day, at night and in the middle of the night I stumble into everything in my path...etc...

[dbmamaz]

I'd read about Fredriech's ataxia when I was researching on the web to figure out what is wrong w my husband (he's not interested in any testing or evals). I think that Fredriech's was the one that matches his symptoms the best, except for the degenerative aspect of it. My husband had extreme nystagmus (eyes moving side-to-side) from infancy, was very clumsy (but believed it was due to his vision problems), has a very wide-footed stance, has sensory integration issues, and has signicant differences in the way he processes language (genius IQ but processing speed barely average). However, his vision has been improving his whole life - they would have put him in a school for the blind except that he had taught himself to read by age 5, with the book touching his nose . . . 5 years ago he got a drivers liscence . .. so whatever is going on inside of his brain, its not Fredriech's. I also believe he has food issues, but of course he's not intersted in getting those tested either.

[April in KC]

I'm sorry to hear that it's considered degenerative. Has your overall condition changed in the years you have been gluten free?

Once again, welcome and thanks for sharing on the board.

I was 34 when diagnosed, but I am positive that I have been gluten intolerant since early childhood. I get the dermatitis herpetiformis rash (related to gluten), and my parents and I remember me getting the rash intermittently as a child. A few other symptoms, too.

My Celiac Disease was/is a fairly atypical case. It didn't progress into a serious weight loss crisis until last year, and even then I was losing weight through the big D without feeling any GI pain whatsoever. I think perhaps the neuro issues were allowed to get a foothold because I kept eating gluten for so many decades after becoming intolerant.

One thing I consider a blessing about the neuro side of this, however, is how quickly I respond to gluten by getting a headache and/or other symptoms now. My husband also has "classic" Celiac Disease with all the tummy woes, and he doesn't react until well after he eats. Consequently, he doesn't always know to stop eating something, and suffers for it. I am considered the family's early warning system.

[rkd]

I'm sorry to hear that it's considered degenerative. Has your overall condition changed in the years you have been gluten free?

Once again, welcome and thanks for sharing on the board.

I was 34 when diagnosed, but I am positive that I have been gluten intolerant since early childhood. I get the dermatitis herpetiformis rash (related to gluten), and my parents and I remember me getting the rash intermittently as a child. A few other symptoms, too.

My Celiac Disease was/is a fairly atypical case. It didn't progress into a serious weight loss crisis until last year, and even then I was losing weight through the big D without feeling any GI pain whatsoever. I think perhaps the neuro issues were allowed to get a foothold because I kept eating gluten for so many decades after becoming intolerant.

One thing I consider a blessing about the neuro side of this, however, is how quickly I respond to gluten by getting a headache and/or other symptoms now. My husband also has "classic" Celiac Disease with all the tummy woes, and he doesn't react until well after he eats. Consequently, he doesn't always know to stop eating something, and suffers for it. I am considered the family's early warning system.

I was diagnosed when I was 33, after I had my 2nd baby. Yes, I have been a little better since being on the diet, but I am also being treated for hypothyroidism, so we're not sure which is helping the most. It has really been good to "talk" to others dealing with some of the same issues.

[rkd]

I'm sorry to hear that it's considered degenerative. Has your overall condition changed in the years you have been gluten free?

Once again, welcome and thanks for sharing on the board.

I was 34 when diagnosed, but I am positive that I have been gluten intolerant since early childhood. I get the dermatitis herpetiformis rash (related to gluten), and my parents and I remember me getting the rash intermittently as a child. A few other symptoms, too.

My Celiac Disease was/is a fairly atypical case. It didn't progress into a serious weight loss crisis until last year, and even then I was losing weight through the big D without feeling any GI pain whatsoever. I think perhaps the neuro issues were allowed to get a foothold because I kept eating gluten for so many decades after becoming intolerant.

One thing I consider a blessing about the neuro side of this, however, is how quickly I respond to gluten by getting a headache and/or other symptoms now. My husband also has "classic" Celiac Disease with all the tummy woes, and he doesn't react until well after he eats. Consequently, he doesn't always know to stop eating something, and suffers for it. I am considered the family's early warning system.

I was diagnosed when I was 33, after I had my 2nd baby. Yes, I have been a little better since being on the diet, but I am also being treated for hypothyroidism, so we're not sure which is helping the most. It has really been good to "talk" to others dealing with some of the same issues.

[marciab]

I am new here, and I have Fredriech's Ataxia, hypothyroidism, IBS and am on a gluten-free diet (which has improved almost all of my other symptoms). Is there anybody out there who is dealing with Fredriech's Ataxia?

I'm not sure what kind of ataxia I had, but it went away after one year on the Gluten-free Casein-free + chemical free diet. My digestive tract wouldn't allow much of anything by the time it gave out on me in 2005. I was diagnosed as a celiac in 2007. A little late, but ...

I didn't see any reference to other foods that you eliminated and since you say you still have IBS, I thought I'd tell you that you may need to eliminate some other foods too.

I have a friend who's wife has ataxia and and has been on the gluten-free diet for at least 2 years, but hasn't responded to it. She had gluten antibodies, which are now gone, but she recently found out that she has rather high casein antibodies too.

I started this diet back in 2005 and most of my nuero symptoms are gone now. Many of us find that we have to eliminate other foods like casien, yeast, soy, sugar, etc. The idea is too eliminate anything that could cause problems.

Hope this helps ... Marcia