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kathryn md

Member Since 22 Apr 2013
Offline Last Active May 05 2013 06:39 PM

Posts I've Made

In Topic: Ataxia Response To gluten-free Diet?

24 April 2013 - 05:14 PM

Celiac disease is an autoimmune condition where gluten triggers your body to attack itself. One of the parts its known to attack is your nervous system. Most of your symtpoms, legs moving, speech slurring, are best explained by a neurological issue.
While my neurological issues are far less severe and don't react nearly as quickly as yours are, your smelly urine reminded me very much that I used to, before being gluten-free, need to change my underwear twice a day because it would just smell too bad. I never pinpointed the issue, but I always thought it was vaginal discharge, but that also used to be much worse too.
In any case, if you do have celiac disease where your body is damaging your nerves, (which I would say it is), it's very, very important you be super strict about your diet. Different tissue heals differently and unfortunately, the nervous system isn't known to good at repairing itself.
It's possible that you won't test positive even on a biopsy, yet you still have celiac neuropathy.
A peer-reviewed summation article that goes into depth about this stuff. It's long but as far as papers go, it's an easy read.

Thanks cavernio,
I wonder how common the urine smell is? I've only heard of it anecdotally, but some of the other 'probably msa' people I know also have this symptom. smell is still gone... Saw my gp yesterday, he was floored at my improvement over last visit 6 weeks ago. Said last visit I had the parkinsons mask and a grey colour, and i had so much more expression and colour and energy. Having an off day today tho, have to use my walker continually, balance is off and left leg is dragging, eyes watery and sensetive,  nose runny. I'm still getting the hang of this, i had some fries that i thought were ok, but were probably contaminated from frying chicken or something. I think i best not eat anything unless my own two hands have  prepared it!

In Topic: Ataxia Response To gluten-free Diet?

22 April 2013 - 06:49 PM

Hi Kamma,


So pleased to hear back from you  (and a  big thanks for the Edit. link , so useful and I hadn't found that site yet...).

I am still fairly mobile ( use public transit, walk almost every day...) and intend to stay that way. I believe one of the reasons I may have stayed mobile is that I "use" it  each day , including physio exercises for strength and  balance . I too was surprised that my diagnosing specialist ( a top researcher at U.B.C., whose name I won't mention... ) didn't pursue this BUT then she even forgot to notify me of my M.R.I. results- I had to get my G.P. to phone her office 1 YEAR LATER! I was going nuts! Anyway , as you say "that was then, this is now". Yes,  despite what should have happened, it didn't and I am THRILLED at finally seeming to find an answer...even if others "dropped the ball". In fact, I immediately switched to another neurologist and he didn't pick up on anything either. Of course, I was diagnosed in 2004 and knowledge of gluten ataxia was still in it's infancy (  although I discovered info and took it to my specialist, who seemed to know all about it...)


Interestingly enough, I have been keeping a journal because it's easy to lose track of how I'm doing/feeling on any given day. This is where  I'm at right now, and I'm curious so maybe you have some ideas. AND I know everyone is different  but there seems to be so few of us out there ( at least, online and sharing!). In my second  gluten free week I had tremendous improvements , even though I probably had a lot of trace and C.C. happening). I could almost run....no kidding. Just before this happened though I had extreme aching and leg pain in my upper right thigh, the very leg that always been the most troublesome. After it went away *( 36 hours) it stopped hurting and straightened out, my balance improved, I became very steady/stable, and , best of all, my mood lifted. I no longer felt "darkness" all day but  had optimism and motivation. Also less fatigue, better fine motor and I wasn't constantly clearing my throat. Now , I'm not doing as well, gait-wise, and I've noticed that my mood and speech improve in "waves", this doesn't seem to be related to what I'm eating or drinking either-like you, I am learning that "whole"  foods are a must and even "gluten free" can be deadly. Do you think it's, "normal" especially early on, to be experiencing these ups & downs"? I Keep in mind that I'm doing much better than I was a few weeks  ago, many of the improvements I've retained even when my gait isn't great and I know it can take A LONG TIME for such long-term neurological damage to respond to treatment and improve . I am pleased to be seeing any improvements-it's all a bonus to me! At Rehab, back in 2004, they laughed at my not being able to use a cane properly. I've encountered this from almost every medical professional I've visited over the years-this might explained why I decided to "drop off the radar" as far as doctors were concerned  .... Thanks again for your good wishes and feedback  =)


P.S. After re-rereading your comments you say that healing is not a straight line so I guess my fluctuations are  part of a slow recovery ( even partial ) and not unusuall at all. C.

Hello, so happy to find you all! :)


I'm Kathy, 55, on Vancouver Island. (also a UBC patient). I've been 'diagnosed' with probable multiple system atrophy, My symptoms however sound like everything ive read on gluten ataxia, plus i have a few that sound more like ga than msa. I went gluten-free March 25th 2013 and in the first two weeks noticed an immediate improvement in my speech: more volume, less slur, easier breathing, less choking. By the end of the third week i noticed a much reduced tremor.


In the 4th week I noticed that leg spasms and muscle twisting inward of my l leg was absent during the night, when it had woke me up consitantly before. During that time however, I have  had two accidental ingestions of gluten. The first time i noticed my tremor went from very mild to very pronounced. It was still that way  10 days later when i had the second accidental ingestion of a small amount of flour. This time, during 10-36 hours after i noticed a spread of the tremor to include a quaking thru my legs, voice fading and slower, and a bit of slur returning. My left leg dragged for the whole day and leg spasms woke me up again. And my left leg and foot pulled inwards, I couldnt straighten it.


Now it is approx. 48 hours since the last gluten, and those symptoms have lessened. Can you kind folks tell me please from your own experience does this resemble gluten ataxia and the changes associated with going gluten-free? I had a gluten test in dec that was neg, however i'd been off it then since nov, then went back on. It felt like my symptoms were gradually getting worse since, so  i decided to give it another go. I feel so on my own, drs dont seem to be informed, either of msa or gluten ataxia! Oh ps... is a strong  urine smell a gluten symptom by any chance? I had it for a couple of years, no infection no diabetes etc, just drink more water say the drs. didnt  help . But it dissapeared with the gluten-free diet, and returned with the gluten ingestion.


Thanks for your input, Kathy :) 

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