Gluten Ataxia

[mbeezie]

If we think that diagnosising gluten sensitivity is difficult when we have GI symptoms, it is nearly impossible when the symptoms are neurological. I know a woman in her mid 60s who I believe has gluten ataxia. She had knee surgery 2 years ago for knee pain and gait issues and has never recovered. Since then she has experienced vertigo, continued unsteady gait, knocking into things and a few other symptoms this article describes. http://www.livingwithout.com/issues/4_1 ... 366-1.html

I encouraged her to consider food sensitivities a while back, but she dismissed the idea and beleived her docotrs. Now the neurologists and orthopedic doctors are telling her she is fine and they can't find anything wrong with her, but they might consider doing some tendon surgery to see if it will help. She is finally ready to consider removing gluten, but it may be too late . . . this is one type of gluten sensitivity that is not fully reversible. The brain gets damamged.

I had bad neurological symptoms along with GI symptoms before I went gluten free. I am 1000% certain neuroligical gluten sensitivity runs on my mother's side of the family. She is deceased now but she had unexplained vertigo (along with GI symptoms), my brother had epilepsy, my uncle was schizophrenic. I saw a neurologist when I first got sick and she was the second worst doctor I had seen (top honors went to the GI who sarcastically asked me if I could tolerate water when I listed off my food sensitivities). This is just another area where the medical community will be quite resistant to looking at gluten sensitivity.

Mary Beth

[Polly]

Hi Mary Beth,

I believe this runs in my family too: brother with Asperger's and depression; mother with D, dementia, and ataxic gait, etc. I am slightly off-balance myself (and have had knee surgery!). I know Tex believes he has had neurological symptoms from gluten, too. Thanks for bringing up this important topic.

Love,

Polly

[tex]

Yes, I have permanent neurological damage that I'm sure is due to years of untreated gluten-sensitivity. I've seen 3 neurologists over the years, and though the first one misdiagnosed me with Parkinson's disease (based on my neurological symptoms), none of them believed that it was possible for gluten to cause neurological damage (even though Dr. Hadjivassiliou has been researching and publishing reports about it for over 10 years).

My mother also had similar neurological issues (though she was never diagnosed with anything). Could this be strictly a maternal genetic effect?

Love,
Tex

[MBombardier]

The comment about vertigo made me think of my father. I found out recently that he has had vertigo since he was a young man. I thought the flight surgeon (my father was an Air Force pilot) grounded him because of incipient glaucoma, but apparently the vertigo was affecting my father's ability to fly long distances. It was even one reason he retired at age 48 after only 30 years. I must have been totally self-absorbed as a child/teenager not to know this.

Dad has it all the time now, though it is better in the evenings. He has taken to using my mother's walker when he gets up in the night, and finds the hand holds he put up for her all over the house to be very helpful.

At almost 89 years old, though, he doesn't even let his diabetes interfere with his quality of life. I have talked about how I got my gluten genes from both him and my mother, but neither he nor my brother is interested in going gluten-free. Interestingly, cousins on both my mother's and my father's side have gone gluten-free in the last year or so.

[Zizzle]

I think my husband has neurological gluten intolerance. Every time he tries to add a little gluten back into his diet, even something as little as a light beer, he gets an immediate headache. He was a frequent headache surferer (all types, not just migraines) before going gluten free. He also has hearing loss in one ear and frequent head congestion and snoring that improved dramatically after going GF.

[brandy]

Yes, I'm in the maternal club. Mom has celiac. Both Mom and I suspect her mother was celiac as she had stomach issues all of her 96 years that she blamed on being dosed with liquid mercury for migraines as a young child. She said the liquid mercury came out solid at the other end kind of like when she swallowed it. That was the treatment offered I'm guessing around 1916 or so. She blamed her stomach issues on the liquid mercury treatments. Mom's younger brother was a very small male schizophrenic. Mom's older brother got alzheimer's at a young age in his 50's. I had the extremely severe neurological issues that Mary Beth mentioned concurrent with my CC. In many respects the neurological issues were worse than the WD which resolved quickly with yoga, GF and Entocort.

Tex...I'm doing a 6 month trial of the vitamin version of Metanx. I'll report back on how it goes....I guess around the holidays. I've also increased my fats: avacado, olive oil and coconut to help with brain issues.

Polly and Mary Beth my uncle's story (schizophrenic) is pretty interesting. He was very intelligent like a lot of schizophrenics. He was a Wharton Business School grad as well as a University of Chicago grad. Diagnosed I'm guessing between 17 and 24. He spent 3 years in a mental hospital in the early 1960's I guess mostly dosed on thorazine playing bridge non stop with the other schizophenics. In the early70's he hooked up with a Philadelphia osteopath. The osteopath got him riding the exercise bike for 1-2 hours a day to get off/reduce psych drugs. I'm guessing in the mid 70's he started GF diet SCD. The SCD diet and exercise bike routine must have helped his symptoms as he stayed on this routine for 25 years until his death. I clearly remember him walking with ataxia so he must have had significant gluten damage b/f going SCD. The SCD diet and exercise bike routine didn't heal him.....i.e he was still extremely eccentric/paranoid and possibly may have been on some meds but I'm not sure about that. I think the SCD diet and exercise allowed him to live his life with less or no psych med side effects.

After I was diagnosed and found this forum and made the connection that both Mom and my uncle were/are on GF diets for decades I googled schizophenia and gluten. I went through 10 google pages and found the connection mentioned but it seems like the really strong psych meds are still what are routinely offered to patients.

Tex....I'm bouncing back to the Metanx topic. I lurked on fibromyalgia forums and it seems that the Metanx or vitamin version are used pretty commonly for the fibromyalgia brain/neurological symptoms. One thing that struck me upon lurking in the fibromyalgia forums was the similarity in our symptoms: joint pain, dizziness, inability to concentrate, ataxia-----it made me wonder if some if the fibromyalgia folks are undiagnosed gluten sensitive? Fibromyalgia also appeared to be to me somewhat of an IBS type of diagnosis and the folks also have GI issues.

Brandy

[tex]

it made me wonder if some if the fibromyalgia folks are undiagnosed gluten sensitive? Fibromyalgia also appeared to be to me somewhat of an IBS type of diagnosis and the folks also have GI issues.

I have a hunch you're on target with both observations.

Tex

[Deanna in CO]

I agree about fibromyalgia. My best friend, a nutritionist and naturopathic doctor and the one who helped me get on the road to healing with a diet-based approach to MC, has fibromyalgia. Unfortunately, no matter how much I encourage her to give GF a real try, and in spite of how much she knows about grains and gluten and everything, she just won't try it for more than a couple of weeks at a time. It grieves me to see her suffer when she might very well find relief if she stayed off it for several months. (Of course no one knows better than we do how difficult it can be to give up favorite foods, right?)

Deanna

[Lesley]

I have been dx'd with it. I have all the pain spots and the aches of intractable pain. I also have gluten ataxia (called clumsy all my life) and fall a lot.

Hasn't really improved since I went gluten free, but it's been going on for so many years I am guessing it's too late.

[brandy]

Hi Tex,

I thought I would report in early as I'm having good results on the vitamin version of 1 pill of metanx. (I'm actually a little under the 1 pill version of metanx for the absorbable folic acid.)

I tapered up--easy to do with all the little vitamins and within 5 days at full strength the brain issues had significantly improved. I've been taking approx the 1 pill dose for about a month. When I take the absorbable B vitamin version I no longer have the troubling transposed letters on the keyboard issue and for the first time in probably 10 months I can do more complex brain tasks in the evening. Today I overslept and did not take the metafolin folic acid until much later than normal and I could tell the difference on the keyboard.

Tex do I need to have this monitored? i.e. bloodwork? I've had bloodwork done as recently as February and specifically told them to check "B"s and two doctors who read the report said "normal." I thought I had a copy at the house but I guess not. I'm thinking I was probably low normal.

I seem to have some kind of weird tie out to brain issues and HRT. I recently tapered down to the lowest dose of HRT to work on getting off of it and seem to have more brain issues now. I was the member who couldn't do math during big flare until I got on HRT. I've picked up some fish oil and curcumin to taper in. It is tough to find fish oil without soy or vitamin A issues.

I guess my main question is about monitoring. I'm restraining from taking the two pill version but actually feel like I could be helped by the higher dose. I'm taking 3 metafolin (800mcg) at present and maybe go 4 which would put me at 3200 mcg. I think the Metanx version is 3000mcg.

I'll probably stick to the current regimen while adding in fish oil and curcumin for the next 3 months but was curious if anyone is taking anything else for the brain? There seemed to be some other OTC counter supplements that some of the fibromyalgia folks are taking for brain issues. I thought I'd ask you folks---it is kind of depressing to be on the fibromyalgia forum and everyone seems to be taking at least 6 or 8 prescription drugs.

Tex another question....do you think you had impovement over time with Metanx? i.e. Should things get better with time?

Regards, Brandy

[tex]

Hi Brandy,

I've been taking it for almost exactly 3 years now. The only vitamin that I've had checked (other than vitamin D), is B-12. I had it checked a year after I started taking Metanx (IOW, it was checked 2 years ago), and the level was 903 pg/mL. The normal range was listed as 180 to 914. My GP takes it also, and when I asked him if there was any reason to be concerned about the level, he said that he doesn't worry about it -- IOW he never even checks his levels.

I noticed very slight improvement after I began to use Metanx, but progress was slow. After about 9 months, some of my feeling had returned to my feet (I could feel a pin prick everywhere), and my knee and ankle reflexes were almost normal (when checked by a neurologist). After about a year and a half, I noticed that my balance had improved significantly. After about 2 and a half years, I noticed that my balance was almost normal again, and now I would say that it's very close to normal. So for me at least, progress has been slow but steady.

Tex

[brandy]

Hi Tex,

Thanks for the feedback. I'm not going to stress about testing and will probably do testing at my next blood draw but I'm not going to worry about it. I've decided to stick with the conservative approach. The metafolin I'll stick to slightly under 1 metanx at 2400 mcg (3 pills at 800 mcg). I'm getting a little of the other kind of folate in a small b multivitamin. The methylcobalamin I'm at 2000 mcg per day and the P5P I'm at 50 mg every other day. The 50 seems to be the only way to buy it and the pill is too tiny to split. It's a conservative approach but seems to be working.

Brandy

[Leah]

So, if you get headaches from gluten, that means neurological response? That is what happens to my 22 year old daughter ( and a rash) She has gone gluten free and her headaches are gone, but I know she "cheats" sometimes ( chinese food...etc.). Will the occasional cheat do a lot of damage down the road?

Leah

[tex]

Yes, gluten crosses the blood-brain barrier.

Will the occasional cheat do a lot of damage down the road?

It depends on how vulnerable she is to neurological damage from gluten. We're all different.

Tex