Mild Gluten Ataxia - Possible?

[MisterV]

I'm wondering if it's possible to have mild ataxia symptoms that last 2 or 3 weeks after glutinization. I have occasional coordination problems, and slurred speech for a while, then it stops for a day, then comes back...this lasts about 2 or 3 weeks then ends. Other neurological symptoms like twitches, tingles etc come and go too. Anxiety is heightened as well, some of it because I fear other illnesses, but even though I can talk myself out of that intellectually, the anxiety remains.

[Kamma]

Yes, MisterV, that is entirely possible.  For those who react extra-intestinal to gluten with ataxia and neuropathy responses, physiological responses have a longer rate of resolution with some symptoms lasting for up to a year before final resolution and after adopting the gluten free diet.

 

There is less research on accidental or inadvertent gluten ingestion but in my case, I am looking at up to three weeks before seeing an improvement in the ataxia, slurring, tiredness.  It takes a while for the antibodies to leave your system and consequently for your body to quiet down. I also notice the severity in my reaction is increasing the longer I am gluten free and inadvertently get glutened.

 

A word of note:  Hadjivassilliou's research in gluten ataxia points to the fact that the damage to the cerebellum could become permanent due to the loss of the Pukinje cells which are the target of the ttg6 antibodies if gluten is continually ingested.  He highly recommends avoiding all gluten (even processed gluten free products) as gluten ataxia / neurological persons appear to be more sensitive to lower levels of gluten that some other celiacs/NGCI can safely consume.

 

 

"In order to work as a treatment for gluten ataxia, the gluten-free diet must be strict: You can'tOpen Original Shared Link at all, and you may need to eliminate Open Original Shared Link, according to Dr. Hadjivassiliou.

This may be a stricter diet than is necessary to eliminate intestinal damage, he notes. "It is imperative ... that close monitoring should be undertaken with the use of antigliadin antibodies [i.e., Open Original Shared Link] and dietetic review to ensure strict adherence to the diet," Dr. Hadjivassiliou and his co-authors concluded."

 

Good on you for being able to talk yourself out of the anxiety.  Sometimes it's hard once we're in the midst of the anxiety to maintain some distance from it and consequently be able to manage it.  It always helps to remember that the anxiety is 'not you' and it's totally based on your body responding to the gluten.

 

I hope this was of some aid to you.

 

Kind regards.

 

 

Referenced: 1  Open Original Shared Link

 

2. Open Original Shared Link

 

3. Open Original Shared Link

[Lisa]

  On 5/17/2013 at 1:54 PM, MisterV said:

I'm wondering if it's possible to have mild ataxia symptoms that last 2 or 3 weeks after glutinization. I have occasional coordination problems, and slurred speech for a while, then it stops for a day, then comes back...this lasts about 2 or 3 weeks then ends. Other neurological symptoms like twitches, tingles etc come and go too. Anxiety is heightened as well, some of it because I fear other illnesses, but even though I can talk myself out of that intellectually, the anxiety remains.

Have you had a panel test for your mineral and vitamines tested? (It used to be called an Executive Panel)  B-12 and Folic Acid are common in deficiency for many of us. Your symptoms are not uncommon.  It could simply be an inbalance. Check it out.

[Ciel121]

I get the ataxia as well if I accidentally ingest gluten. It lasts for a week for me, but at times it can be frightening. One time I had difficulty moving at all and I had difficulty with my peripheral vision. This only happens when I've accidentally had gluten, but I'm definitely not going to give up gluten-free products. I can barely manage on this diet as it is. After four years I'm really tired of this.

[MisterV]

Thanks Kamma for the links to those resources and for reassuring me. The symptoms have pretty much cleared up since I last posted...a couple little twitches and tongue nips every 3rd or 4th day, if that...so I must be getting clean. That the reaction is more serious the longer I'm off gluten is becoming quite evident. I'm so over not eating a gluten-filled diet that it doesn't bother me. My next step is to talk to my family doctor about monitoring antigliadin antibodies with blood tests, and if that's even an option under my healthplan. The anxiety has pretty much lifted as well...just some minor irritability left.
Again, my gratitude is boundless.

 

  On 5/17/2013 at 10:58 PM, Kamma said:

Yes, MisterV, that is entirely possible.  For those who react extra-intestinal to gluten with ataxia and neuropathy responses, physiological responses have a longer rate of resolution with some symptoms lasting for up to a year before final resolution and after adopting the gluten free diet.

 

There is less research on accidental or inadvertent gluten ingestion but in my case, I am looking at up to three weeks before seeing an improvement in the ataxia, slurring, tiredness.  It takes a while for the antibodies to leave your system and consequently for your body to quiet down. I also notice the severity in my reaction is increasing the longer I am gluten free and inadvertently get glutened.

 

A word of note:  Hadjivassilliou's research in gluten ataxia points to the fact that the damage to the cerebellum could become permanent due to the loss of the Pukinje cells which are the target of the ttg6 antibodies if gluten is continually ingested.  He highly recommends avoiding all gluten (even processed gluten free products) as gluten ataxia / neurological persons appear to be more sensitive to lower levels of gluten that some other celiacs/NGCI can safely consume.

 

 

[MisterV]

Thanks Lisa.

I get bi-weekly b12 shots and take magnesium supplements. I've never had my Folic Acid checked. I should request a complete panel test to see what's up.

 

  On 5/18/2013 at 2:40 AM, Lisa said:

Have you had a panel test for your mineral and vitamines tested? (It used to be called an Executive Panel)  B-12 and Folic Acid are common in deficiency for many of us. Your symptoms are not uncommon.  It could simply be an inbalance. Check it out.

1