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Gluten Ataxia (only)?


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#1 tiredofdoctors!!!

 
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Posted 27 September 2005 - 08:10 PM

I have been off the Celiac forum for several weeks. I am pretty frustrated. I have no antiendomysial antibodies, no transglutaminase antibodies, and my small bowel biopsy was negative. Hence, no celiac disease. The neurologists, however, still insist that because my antigliadin antibodies are so elevated, that gluten is destroying my cerebellum.

I am now in a wheelchair. I thought things had plateaued, but found out yesterday from the neurologist that I'm getting worse. I've been to Hopkins and Mayo, and have found out that basically, the neurologists there pompous ( s) insert whatever expletive you choose.

Every article I have read about gluten ataxia gives a really grim prognosis for my symptoms improving. Each says that the goal is to stop the progression, but none that I've read mention return to prior function.

Does anyone know ANYTHING that can help me with this?? My neurologists have suggested (months ago) that I apply for Social Security disability, but I have refused, continuing to believe that I'm going to get better. Am I fooling myself?

Any help you can give me would be greatly appreciated
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Lynne

Courage does not always roar. Sometimes it is the quiet voice at the end of the day that says, "I'll try tomorrow".

"There's not a word yet, for old friends we've just met. Part Heaven, part space, or have I found my place? You can just visit, but I plan to stay, I'm going to go back there some day." Gonzo, in the Muppet Movie

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#2 Guest_nini_*

 
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Posted 28 September 2005 - 02:52 AM

sorry you are having such a rough time of it.

chiropractic really works for me, and I don't know if you have considered it or not. It helps to keep the Central Nervous System free from impingement and keeps it functioning better. Years ago I was told that I would be in a wheelchair within 5 years. Well, it's over 10 years since then and no wheelchair.
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#3 tarnalberry

 
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Posted 28 September 2005 - 09:37 AM

The neurologists, however, still insist that because my antigliadin antibodies are so elevated, that gluten is destroying my cerebellum.

<{POST_SNAPBACK}>


Regardless of the tTg, EMA, and biopsy results, the fact that you have elevated anti-gliandin antibodies means that your body is immunologically reacting to gluten, so the right thing to do is maintain a gluten free diet. If the damage wasn't severe enough (some doctors require completely flattened villi, not merely damaged) or if enough samples were not taken, then a false negative is quite likely.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#4 skbird

 
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Posted 28 September 2005 - 09:47 AM

Have you had your B12 levels looked at? Many people are B12 deficient and this can present in many neurological ways. If you are deficient, you need to be taking sublingual B12 or getting shots. It can be several months of supplementing before you notice an improvement but people have had many neurological symptoms improve from B12 supplementation. This is a serious condition and should be looked into, if it hasn't been already.

My best to you

Stephanie
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Diagnosed by food challenge, 10/04
Gluten-free since 10/04
Gluten-sensitive genes: HLA-DQ 1,3 (Subtype 6,9)
Interstitial Cystitis, 7/07
Fibromyalgia, 6/11

#5 tiredofdoctors!!!

 
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Posted 28 September 2005 - 04:18 PM

Thanks for all your input. I read the biopsy of the intestinal villi -- they are pink, healthy, and plump. B12 levels are great -- I just had them checked again. I've tried chiropractic, as well -- no luck there, so far. My biggest concern, I guess, is whether the ataxia and neurological pathologies in my muscles are reversible. If you stumble across anyone who has had their neurological conditions reversed, I would REALLY like to hear that! I'm looking for a support group in my area -- my endocrinologist suggested that I hook up with them, also, so that they can help me learn what to do and what NOT to do. I had thought I was doing O.K., but it appears that I'm not doing as well as I thought I was at reading labels.
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Lynne

Courage does not always roar. Sometimes it is the quiet voice at the end of the day that says, "I'll try tomorrow".

"There's not a word yet, for old friends we've just met. Part Heaven, part space, or have I found my place? You can just visit, but I plan to stay, I'm going to go back there some day." Gonzo, in the Muppet Movie

#6 bluelotus

 
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Posted 28 September 2005 - 04:45 PM

i have never heard of gluten destroying the cerebellum - can anyone please elaborate on this? scary to me b/c i get "brain fog" after being glutened as well as intense headaches (maybe migranes, but I don't really know what the difference is)......do all of us need to be concerned with brain health? are we more prone to problems in that aspect? any input is appreciated
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The temple bell stops
but the sound keeps coming
out of the flowers
-Zen Haiku Master Basho

#7 Claire

 
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Posted 28 September 2005 - 06:11 PM

I have a fairly recent diagnosis of cerebellar ataxia. I have a medical background, am familar with neurological diseases (in general) and am doing ongoing research on the subject.

I will provide here a little personal history before discussing ataxia.

I may or may not have celiac. As I was on a diet (for 15 years) that eliminated bread and just about everything with flour in it, the celiac blood work was negative - more than likely a false negative. Because grains rather than gluten was identified as my problem - I just cut out the big offenders containing grains but did not go 'gluten free'. Big mistake.

I am now into the third year of neurological symptoms - these worsening in the last year. Needless to say idiot doctors have complicated the issue. If I told about that it would be much too long a message. I am slowing approaching some definitive conclusions but much too slowly for my liking.

The second neurologist that I saw suspected celiac ataxia- a degeneration of the cerebellum (the area of the brain that governs conscious motion - balance, gait, talking, swallowing, etc.) When blood work was negative (never should have even done that test) he handed me off to another neurologist - a motion specialist involved in ongoing studies at NIH.

This guy diagnosed the ataxia - but he thinks it is a genetic ataxia rather than a gluten induced ataxia - although he recommends that all patients with cerebellar degeneration be on gluten free diet - celiac or no celiac. I personally think he is wrong about my problem. Soon we will find out. I am scheduled for genetic counseling and gene mapping in mid October. If there is no gene marker, then I most likely have celiac. I have asked them to do the mapping for celiac at the same time they do the other mapping. Hopefully they will

I will make a few remarks here about ataxia but anyone wanting any info that I have gathered can just email me and I will get something out to you. I will be glad to communicate off line.

As most of you know - celiac is not a new entity but it is definitely the new kid on the block as far as doctors are concerned. It has long been considerd a gastrointestinal disorder. The neurological aspects of it are very new in all but the most sophisticated medical circles - think researchers etc. Cerebellar ataxia is one of the many neurological disorders that can be traced to celiac disease. There are other possible causes (B12 deficiency, serious Vit. E depletion, genetic disease etc.). MS, Lupus are two autoimmune diseases that have the same type of cerebellar degeneration - and these have both been related to Celiac - thus to gluten.

Neurologoical damage of this type is not considered to be reversible. It may be slowed down, even halted (if it is gluten related) but generally what is lost is lost. You are better if you are not getting worse.That must be the goal. Physical Therapy (vestibular training exercises) won't make you well but may give you some improvement and doing these exercises 'uses' the neurons - helping to keep them alive.

Anyone with ataxia must be totally, totally gluten free. The neurologist told me that a single grain of gluten put in a petri dish with a drop of blood from a celiac disease patient will activate immediatley and can sustain activity for days - even weeks. This 'activity' even without conscious symptoms is what does the damage.- silently attacking the cells in the brain (or other body cells).

Supplementation with 200 - 400 units of CoQ10 has helped some people. I take this and it has significantly helped my energy level. I may be tired but I am not comletely wiped out as I was.
I do not know if it will improve the gait and balance problems for me - he has done so for others.

I have consulted a Naturopathic doctor and am taking MediClear - Dietary supplement - Thorne Research Inc - Dover, Idaho. This is for inflammation, allergies, detox, and gastrointestinal integrity. Also probiotics. I will have my first accupuncture treatment with the Naturopathic doctor later in October. I am anxious to see if this has any effect.

There is an abundance of material on this subject. I will be more than glad to provide any help I can and to correspond.

The rest is in the details.

Gluten is a demon. Hope these lengthy remarks are not too overwhelming. Claire
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#8 Claire

 
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Posted 28 September 2005 - 06:18 PM

i have never heard of gluten destroying the cerebellum - can anyone please elaborate on this?  scary to me b/c i get "brain fog" after being glutened as well as intense headaches (maybe migranes, but I don't really know what the difference is)......do all of us need to be concerned with brain health?  are we more prone to problems in that aspect?  any input is appreciated

<{POST_SNAPBACK}>


HI - I have already posted a long reply (see below)to the initial message. Yes, yes, yes - be concerned about brain health. I am a good/bad example. Note my comments about the neurologist who recomments gluten free for all his patients with cerebellar degeneration. Even if it is not the cause, apparently it acts as an irritant and can make bad matters worse.

Also it is rather intimidating to know how little gluten - just a grain - can set off a reaction - even when you don't 'feel' a thing!

What to do? Eat really really smart. Claire
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#9 Claire

 
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Posted 28 September 2005 - 06:19 PM

i have never heard of gluten destroying the cerebellum - can anyone please elaborate on this?  scary to me b/c i get "brain fog" after being glutened as well as intense headaches (maybe migranes, but I don't really know what the difference is)......do all of us need to be concerned with brain health?  are we more prone to problems in that aspect?  any input is appreciated

<{POST_SNAPBACK}>


HI - I have already posted a long reply to the initial message. Yes, yes, yes - be concerned about brain health. I am a good/bad example. Note my comments about the neurologist who recomments gluten free for all his patients with cerebellar degeneration. Even if it is not the cause, apparently it acts as an irritant and can make bad matters worse.

Also it is rather intimidating to know how little gluten - just a grain - can set off a reaction - even when you don't 'feel' a thing!

What to do? Eat really really smart. Claire
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#10 Claire

 
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Posted 28 September 2005 - 06:20 PM

Sorry for the double post. I was trying to correct the 'see below' and I messed up. Claire
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#11 Eliza13

 
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Posted 28 September 2005 - 06:33 PM

It is truly amazing what the little bugger (gluten) can do to us. I have a looooooonnnnnggggg list of complications. I've had them for years, but was only recently diagnosed. The one thing that I can say for sure is that most doctors are indeed clueless. My doctor sent me home after telling me I had fat in my stool and a high WBC, and after I complained about an elbow rash (on both elbows!), after I told him that I poo 10X per day.....He was also aware of my symptoms below, chalking it all up to STRESS. I know that I am not a doctor, but even I knew that it was odd and not a coincidence that I had a very itchy rash on BOTH of my elbows. He said it was exzema!!!!

SKAR
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Diagnosed by my doctor on the basis of symptoms only (May 2005). My symptoms include:

-amenorhea (all my life)
-high prolactin levels
-major bloating ("Are you pregnant?")
-swollen ankles
-possible DH: had the rash on my elbows and scalp (gone now)
-joint pain
-childhood arthritis
-all dairy allergy
-dry skin
-fat in stool sample (no connection was made at the time...I was being tested for something else...When the doctor told me of the fat I replied by saying: "I eat alot of olive oil". DUH!!!!)
-mother is allergic to wheat
-ravenous appetite: I eat for 5 people
-light coloured stool
-pass stool 7 times a day sometimes
-hemorrhoids
-get the hiccups alot (not sure if this is related)
-some reflux

I'm sure there are more that I don't recall at the moment. SIGH.

#12 Nevadan

 
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Posted 28 September 2005 - 08:10 PM

I'm an apparent non-Celiac gluten sensitive person. My symptoms include such things as osteoporosis (male dx'ed at 55), mild anemia, mild peripheral neuropathy, etc. You might want to read "Dangerous Grains..." by Braly and Hoggan, a book which focuses on gluten sensitivity without celiac disease. You might also want to get DNA tested for this as well. It won't prove you have anything, but it will indicate what you are subject to having. I had mine done by Enterolab and found I have a double DQ1 gene pair which makes me unlikely to ever have celiac disease but makes me very likely to have gluten sensitivitly (which I had alread self-diagnosed by diet) with lots of undesirable neurological problems. That was enough to motiviate me to be gluten-free.

Hope this helps.

George
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#13 tiredofdoctors!!!

 
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Posted 29 September 2005 - 11:49 AM

Great info -- thank you. I, too, am a medical professional -- I am hoping that someone out there will have developed alternate neuropathways in the cerebellum which restores normal function. There are exercises "Frenkel's Exercises" which were developed in the late 1800's for patients with Parkinsons -- they are also used for patients with ataxia, but very few practitioners know of these. I have BARELY been responding to these, but maybe someone else can find a physical therapist who will know how to implement these and can get better results.

My neurologist has been asking many questions with regard to family history. I have a grandfather who was diagnosed with "Parkinsonism" by a quack old-time family doctor. He had the exact same symptoms as I do: Marked fatigue, ataxic gait, dysphagia, intention tremor, hyperreflexia, spasticity, dysarthria, proximal muscle weakness, dysmetria and arthralgia. In addition, he did not respond to L-Dopa or Sinemet. My father has idiopathic polyneuropathy (often diagnosed in alcoholics as Werneke-Karsakoff's syndrome, but my father is not an alcoholic). The neurologist has also asked if we have had any children born with mental retardation. That has not happened.

My limited understanding of gluten ataxia is that it may very well be linked to a genetic predisposition. Most of what I have read has also indicated that, in addition to antigliadin antibodies, you will also produce anti-perkinje cell antibodies. The cerebellum is made up, in large part, of perkinje cells. The cross-reaction of the antigliadin and the antiperkinje cell antibodies is the process by which the cerebellar tissues are destroyed.

A question which I have not found an answer to is this: Is there a blood test for anti-perkinje cell antibodies? Are the antibodies found in CSF? Are antigliadin antibodies found in CSF?

I am going to try to CoQ 10 which Claire suggested. I am also taking probiotics, and have in the past tried Biozyme and Inflaguard, which have helped with the arthralgias.

I didn't mean to scare anyone out there. Again, I have been confirmed negative for Celiac disease (multiple times over). A personal message to bobcatgirl -- I would talk to my physician about the headaches, brainfog, etc. after ingesting gluten. Also, start looking at your family tree for any neurological diseases any of your "forefathers" or "foremothers" may have had.

Another personal message to Claire: I am VERY interested in what the results are of your genetic counseling and gene mapping. In as much as I am concerned about myself, I have two children. My daughter, who is 19, has already displayed the same thyroid signs which I displayed as a teenager. My son, who is 23, had cerebellar damage during delivery (high forceps -- 9lb 13oz first born to a young mother after 48 hours of labor -- very cruel and incompetent obstetrician). He is fortunate that it is limited to a positive Rhomberg's and the inability to perform tandem gait. The thought that it could get worse, though, frightens me. Please keep me informed with regard to the findings, if it is not too intrusive that I ask.

Sorry this is so lengthy, but I'm starting to get more and more frightened -- I think that, as a healthcare professional, I have chosen to ignore my symptoms too long this time. If I had a patient with these symptoms, I would have insisted that he/she pursue this with a vengeance two years ago or more.
  • 0
Lynne

Courage does not always roar. Sometimes it is the quiet voice at the end of the day that says, "I'll try tomorrow".

"There's not a word yet, for old friends we've just met. Part Heaven, part space, or have I found my place? You can just visit, but I plan to stay, I'm going to go back there some day." Gonzo, in the Muppet Movie

#14 Claire

 
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Posted 29 September 2005 - 01:39 PM

Great info -- thank you.  I, too, am a medical professional -- I am hoping that someone out there will have developed alternate neuropathways in the cerebellum which restores normal function.  There are exercises "Frenkel's Exercises" which were developed in the late 1800's for patients with Parkinsons -- they are also used for patients with ataxia, but very few practitioners know of these.  I have BARELY been responding to these, but maybe someone else can find a physical therapist who will know how to implement these and can get better results. 



A question which I have not found an answer to is this:  Is there a blood test for anti-perkinje cell antibodies?  Are the antibodies found in CSF?  Are antigliadin antibodies found in CSF?

I am going to try to CoQ 10 which Claire suggested.  I am also taking probiotics, and have in the past tried Biozyme and Inflaguard, which have helped with the arthralgias.


Another personal message to Claire:  I am VERY interested in what the results are of your genetic counseling and gene mapping.  In as much as I am concerned about myself, I have two children.  My daughter, who is 19, has already displayed the same thyroid signs which I displayed as a teenager.  My son, who is 23, had cerebellar damage during delivery (high forceps -- 9lb 13oz first born to a young mother after 48 hours of labor -- very cruel and incompetent obstetrician).  He is fortunate that it is limited to a positive Rhomberg's and the inability to perform tandem gait.  The thought that it could get worse, though, frightens me.  Please keep me informed with regard to the findings, if it is not too intrusive that I ask. 


<{POST_SNAPBACK}>



I like your name. Aren't we all.

I will be trying the Frenkels but right now am having the vestibular training and after a month or so with that will be going to Tai Chi exercises. This was recommended by neurologist.

As you no doubt know. Parkinson's is a catch all for everyone of has a tremor or a gait problem that doesn't have some very obvious explanation. Just like 'stress' gets blamed for everything- an overused cop out.

Gluten ataxia is associated with celiac disease and with non-celiac gluten sensitivity - both genetic disorders. From what my most recent neurologoist says, gluten can be a factor in many ataxias where it is not the primary cause. I asked him if he was describing an 'irritant' and he said that more or less was it. He referred to MS and ALS impatients whose symptoms improved when gluten was removed from the diet.

This may be the test you are looking for: Anti-Purkinje Cell Cytoplasmic Antibody.

Good luck with CoQ10. It certainly has been good for me.

Indeed this is a bit scary. I am most anxious to know for certain what I am dealing with.

I will be glad to share the results of my upcoming NIH experience. Claire
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#15 bluelotus

 
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Posted 29 September 2005 - 07:16 PM

Thanks for the advice, claire and tiredofdoctors. I have looked into migraines more and am pretty convinced that this explains my headaches and vision issues (prior to headache). Problem with my family - my mother was adopted, so no history there. Do you two think that ataxia is something that those with celiac disease or gluten sensitivity should be monitored for? I wonder if we do, in fact, have a predispositiion. This is just so scary to me. Some people fear heights - I fear things like brain issues or brain tumors (I'm weird, yes, but the idea that these things are often misdiagnosed and the tests used to diagnose them are usually used last minute.....so scary to me). Anyway, best of luck to the two of you. I appreciate the both of you sharing your stories for everyone's benefit. Thank you.
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The temple bell stops
but the sound keeps coming
out of the flowers
-Zen Haiku Master Basho




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