Gluten Damages Purkinje Cells In Brain Resulting In Gluten Ataxia

[marciab 2]

Since eliminating gluten, etc. my ataxia, myoclonus and insomnia have been completely resolved. My vision is no longer going out of focus when I walk. I no longer feel like the floor is moving out from under me when I stand in one place (orthostatic hypotension). And my brain fog and fatigue have dramatically been reduced too, but not completely. I'm guessing that since I've been sick for 17 years, this is probably going to take awhile.

I believe my heart has healed too since it doesn't pound for 15 minutes when I lay down. But, I don't know what this is called, so I can't google it. I know my EKG looked better the last time it was checked.

I've found plenty of info about how gluten damages the brain (gluten ataxia). Dr. Hadjii. proved that gluten damages the Purkinje cells in the brain causing leg and arm ataxia, ocular ataxia, etc. And now

this has been re-proven by many other doctors.

http://brain.oxfordjournals.org/cgi/content/full/126/3/685

Yesterday, I have found out that the heart has Purkinje cells. I copied this in from wikepedia.

Purkinje fibers (or Purkyne tissue) are located in the inner ventricular walls of the heart, just beneath the endocardium. These fibers are specialized myocardial fibers that conduct an electrical stimulus or impulse that enables the heart to contract in a coordinated fashion.

I have / had a left bundle branch block. Meaning, my Purkinje cells were not functioning. Since this feeling went away at the same time as the ataxia and orthostatic hypotension, I have been looking for a cause.

Dr. Hadjj. studies on gluten ataxia say that the Purkinje cells healed when gluten was removed. I've seen other studies that prove that diabetes and thyroid diseases are eliminated when gluten is removed to.

Soooo, Do you think it is safe to conclude that any body part that contains Purkinje cells can heal by eliminating gluten ????

I can be a little slow, so did you all know this and I am just now figuring this out for myself ???

Thanks .. Marcia

[VydorScope 31]

As a person WITH OUT celiac disease, who has a MUGA verified and monitored LBB, and has tried the gluten-free diet I can say that at least in my case there is no connection to the damage, and no healing from it. Is is possible that if you have celiac disease it could cause heart damage, and look like a LBB? Sure, I would buy that... and in that case it could be reversible. But I get a yearly MUGA test and I can tell you that there has been no correlation to gluten in or not in my diet.

I hope in your case, it works out that you heal, but in LBB (at least like I have) the nerve in question is dead, and not coming back.

Please keep us advised on how it goes!

[marciab 2]

Vydorscope,

My LBBB has been proven by the MUGA, etc. too. I'm still in the process of understanding how the body works so, I'm not sure what symptoms I had are attributed to LBBB. Or what all tests they did on me prove the LBBB. YET ... But, I do have to have cardiac approval prior to any procedures where they put you out.

I had all the tests run again last year around May, prior to my gluten ataxia resolving, so I am curious as to what my results were now ...

Just curious.. Did you try the gluten free diet for at least one year ? Have you researched Dr. Hadjii's info on gluten ataxia ? I believe he said that patients have to follow a strict gluten-free diet for at least one year in order to reverse gluten ataxia. I know some have healed faster though ...

Marcia

[VydorScope 31]

Other then diet challenges for testing, I have been gluten-free since my son was dx'd. Its just easier. I was gluten-free at the time of diagnoses with the LBB (if I remember all my dates right). I have been dealing with the LBB for going on 4 years now, and in the beginning I was getting 2-3 muga's a year, so any CHANGE in condition would have been picked up (thats why they do the monitoring to make sure I am not about to die or something). EKG can not track that like the MUGA can, nor can the Echo tests. IF a pure gluten-free diet were to effect it, change would have shown up in the years of testing and monitoring.

[marciab 2]

I'd have to do a lot of reading in order to understand what all the different tests I had meant. I had a complete work up in the hospital years ago in order to rule out a heart attack. Even the one where they run a tube from your groin into your heart. So, we are certain it is a LBBB. BTW, These do show up on an EKG. They are blips in the rythym.

I used to get so winded by the time I got up the stairs in my condo that I had to sit and catch my breath. OF course I got winded other times too, but this gives you the idea. This is gone.

And the problem where my heart would pound for 15 minutes when I laid down is gone now. It went away at the same time the ataxia did.

Just to help you understand the last symptom .. I used to be tired and weak most of the time. Sometimes I could barely stand up, sometimes I would last for 5 minutes and other times I felt ok UNTIL I laid down. I have always had to lay there while my heart pounded for at least 15 minutes before I could sit up.

Are your symptoms similar ? Marcia

[VydorScope 31]

I'd have to do a lot of reading in order to understand what all the different tests I had meant. I had a complete work up in the hospital years ago in order to rule out a heart attack. Even the one where they run a tube from your groin into your heart. So, we are certain it is a LBBB. BTW, These do show up on an EKG. They are blips in the rythym.

I used to get so winded by the time I got up the stairs in my condo that I had to sit and catch my breath. OF course I got winded other times too, but this gives you the idea. This is gone.

And the problem where my heart would pound for 15 minutes when I laid down is gone now. It went away at the same time the ataxia did.

Just to help you understand the last symptom .. I used to be tired and weak most of the time. Sometimes I could barely stand up, sometimes I would last for 5 minutes and other times I felt ok UNTIL I laid down. I have always had to lay there while my heart pounded for at least 15 minutes before I could sit up.

Are your symptoms similar ? Marcia

YES it does show up on the EKG, that is how mine was found. I said you can not MONITOR with the EKG like you can with the MUGA. Sorry for the confusion. I also have a fairly Low Ejection Faction because of it, so they really watch me. I at one time got educated on how to read an EKG to see for myself, and I need refresh that ... been a while.

I do 30 mins of cardio 3 times a week to keep my heart going, so I do not get winded easy any more. I not had had the heart racing that you describe. I push my self pretty hard in my cardio and that keeps the fatigue issues that you mention away. CHECK WITH YOUR DOC before doing cardio, but it has been the biggest help of anything. That and getting on a high fat diet for my hypogylcemia.

[sunshinen 2]

I don't know much about this, but I have read that gluten reactions can cause nerve damage that does not always heal once a gluten-free diet is started. So even symptoms that do not go away on a gluten-free diet may still have stemmed from gluten.

But I would say there is always hope. The body's ability to heal can be amazing when it is treated well.

[marciab 2]

YES it does show up on the EKG, that is how mine was found. I said you can not MONITOR with the EKG like you can with the MUGA. Sorry for the confusion. I also have a fairly Low Ejection Faction because of it, so they really watch me. I at one time got educated on how to read an EKG to see for myself, and I need refresh that ... been a while.

I do 30 mins of cardio 3 times a week to keep my heart going, so I do not get winded easy any more. I not had had the heart racing that you describe. I push my self pretty hard in my cardio and that keeps the fatigue issues that you mention away. CHECK WITH YOUR DOC before doing cardio, but it has been the biggest help of anything. That and getting on a high fat diet for my hypogylcemia.

Oh, sorry, I read that wrong. The MUGA is for monitoring the LBBB.

So, that is what they mean by heart racing.

I have actually been able to walk my dogs every day for 20 - 30 minutes for 6 weeks in a row. Previously, even walking my dogs 1 - 3 days in a row would have made me sick with exhaustion (post exertional fatigue) and a flu like feeling.

KNOCK ON WOOD !!!

By cardio, do you mean aerobic excercise where you keep your heart rate up for X amount of time ?

DO you get post exertional malaise / fatigue from cardio ? I still am and I haven't found info yet that explains this.

Marcia

[Canadian Karen 9]

marciab,

You need to PM "tiredofdoctors!!!" a.k.a. Lynne. She is an expert in this field......

Hugs.

Karen

[VydorScope 31]

By cardio, do you mean aerobic excercise where you keep your heart rate up for X amount of time ?

I presently do 30 mins on the elliptical machine maintaining 155-165 heart rate. When I get up to liek 170, o r 180 I back off. I do not want to push it do hard.

DO you get post exertional malaise / fatigue from cardio ? I still am and I haven't found info yet that explains this.

Please define what you mean by this? The only place I know that term from is Chronic Fatigue Syndrome. In that case it can take poeple over 24 hours to recover from exercise. I certainly do not experience anything like that. I struggle with hypoglycemic crashes if Im not careful post cardio, but thats it I guess. Other then what I think to be normal tiredness after working hard.

[marciab 2]

Please define what you mean by this? The only place I know that term from is Chronic Fatigue Syndrome. In that case it can take poeple over 24 hours to recover from exercise. I certainly do not experience anything like that. I struggle with hypoglycemic crashes if Im not careful post cardio, but thats it I guess. Other then what I think to be normal tiredness after working hard.

Post exertional fatigue is a hallmark symptom of CFS, but so are the other symptoms that I no longer have. The best way I know to describe it is like your brain and your body have gone on vacation after having worked a month of double shifts.

This article is about CFS and post exertional fatigue, but it also gives a really in depth look into how exercise affects the body. I only copied in a little ... I am still trying to understand it ...

http://www.aacfs.org/p/260.html

CFS and the Exercise Conundrum

CFS and the Exercise Conundrum

Lucinda Bateman, M.D.

The key is patience--not doing too much at once and learning not to exceed the threshold that results in

[marciab 2]

marciab,

You need to PM "tiredofdoctors!!!" a.k.a. Lynne. She is an expert in this field......

Hugs.

Karen

Thanks Karen ... How would I PM someone without having their post to link to it for me ??? Marcia

[VydorScope 31]

Thanks Karen ... How would I PM someone without having their post to link to it for me ??? Marcia

Lots of ways, umm one is to find her in the member list, click her name, then click the PM button (migth say Private Message instead, forget exact wording)

[VydorScope 31]

Post exertional fatigue is a hallmark symptom of CFS, but so are the other symptoms that I no longer have. The best way I know to describe it is like your brain and your body have gone on vacation after having worked a month of double shifts.

This article is about CFS and post exertional fatigue, but it also gives a really in depth look into how exercise affects the body. I only copied in a little ... I am still trying to understand it ...

....

Marcia

What are your symptoms then that you are calling post exertional fatigue? And I am sorry if you said this already, but how long have you been 100% TRULY gluten-free? Did you check all you soaps, detergents, lotions, perfume, makeup, shampoo, conditioner, etc? How good are you about watching for CC risks?

I personally think that celiac disease can "fake" so to speak (probably a poor choice of word) a lot of other conditions, ADD/ADHD for example, Anemia as another, but it simply just might be that you have more then one problem. (side note: other issues like, Lymes can "fake" celiac disease. )It seems that it is hard for ppl to think there might be more then one unrelated problem for them to deal with and the natural course (seemingly esply for docs) is to blame everything on one underlying condition. You need to isolates the root causes. If 100% pure elimination of gluten did NOT fix all things , then you likely need to explore other things that might be wrong, esply other food intolerances since they never seem to travel alone. One example is to eliminate dyes, additives, and preservatives from your diet. They are well know to cause problems for some people and really not good for anyone. I have seen "incurable diseases" cured just by doing that alone. Dr Fiengold had a diet based on that as I recall, been a while since I looked at it though....

[aikiducky 1]

I just wanted to add that I've been gluten free for two and a half years now, and i wasn't anything like as sick as marciab's signature says she was, but sometimes i still get something that I could call mild post exertional fatigue. A bit like feeling like I have the flu. Especially if I've been recently glutened - or caseined. I've actually started to avoid exercising right after a glutening, because it doesn't make me feel better and sometimes makes me feel way worse.

I has gotten much better though compared to a couple years ago, and I hope things will keep improving. But I think it's possible that this may always be a glutening symptom for me. Of course I do my best to not get glutened!

Just my uninformed opinion but it does sound to me like your two cases (marciab and Vydorscope) might have different causes.

Pauliina

[gfp 0]

Thanks Karen ... How would I PM someone without having their post to link to it for me ??? Marcia

But please ask her to contribute to the thread! Don't just pm forwards and back (please)....

[marciab 2]

Vydorscope,

The best way I know to describe it is like your brain and your body have gone on vacation after having worked a month of double shifts.

I said this previously, but let me just add that I feel like this for 2 - 3 days after being active a full day. And it always starts about 24 - 28 hours the day after. Basically I am a zombie ... Albeit a functional zombie ... Just don't ask me to make change.

It's not nearly as bad as it was. KNOCK ON WOOD I used to feel flulike, have trouble sleeping at night, feeling excessively sleepy during the day, severe brain fog ... And now it is just a feeling of malaise. The article quoted earlier does the best job of describing this that I have found.

http://www.aacfs.org/p/260.html

One thing patients and medical providers agree on is that CFS is characterized by post exertional malaise, a term that often understates a “payback” that varies from escalation of widespread pain, to exhaustion requiring a recovery day in bed, to serious relapse of the entire CFS symptom complex:the cognitive dysfunction, flu-like achiness, fatigue, low grade fevers, lymph node tenderness and disturbed sleep patterns of weeks or months duration. Post-exertional malaise has always been considered a defining feature of CFS, although we are still uncertain why it occurs (Fukuda).

I found this today. This website explains how the Purkinje cells cause the heart to beat ... Notice the Purkinje cell network

sends the impulse to the muscular walls of the ventricles, causing them to contract.

http://www.medicinenet.com/heart_how_the_h...works/page4.htm

How Does the Heart Beat?

The atria and ventricles work together, alternately contracting and relaxing to pump blood through your heart. The electrical system of your heart is the power source that makes this possible.

Your heartbeat is triggered by electrical impulses that travel down a special pathway through your heart.

The impulse starts in a small bundle of specialized cells called the SA node (sinoatrial node), located in the right atrium. This node is known as the heart's natural pacemaker. The electrical activity spreads through the walls of the atria and causes them to contract.

A cluster of cells in the center of the heart between the atria and ventricles, the AV node (atrioventricular node) is like a gate that slows the electrical signal before it enters the ventricles. This delay gives the atria time to contract before the ventricles do.

The His-Purkinje network is a pathway of fibers that sends the impulse to the muscular walls of the ventricles, causing them to contract.

I was hoping one of you knew this and I wasn't going to have to reseach it ... I didn't find a connection between LBBB and celiac yet though.

Marcia

[marciab 2]

I found this again today ...

Gluten sensitivity as a neurological illness

M Hadjivassiliou, R A Gr

[VydorScope 31]

I know how the heart works, and what a LBBB is. I do not recall you asking anything about that. I thought you were asking if Gluten COULD cause a LBBB, and IF IT DID would "get better" going gluten-free. And I think we all said its possible. I am sorry if I misunderstood your question.

SIDE NOTE: For others reading the thread, here is a nice easy to read explanation of the typical Bundle Branch Block (can be left or right, in our cases its left).

http://www.mayoclinic.com/health/bundle-branch-block/DS00693

There are a very large number of things that could cause it, so no cause really can be ruled out.

Marci,

As for your other symptoms, if your SURE your 100% gluten-free, and the other symptoms have not gone away, then you likely need to seek testings/research in to other issues, like I mentioned before. There is no silver bullet here, it takes time and dedication, lots of both really, to track this stuff down. Post your symptoms in a new thread with subject something like "Need help finding cause of symptoms" or something and surly you will get a broader reading audience to look at them and make suggestions. None of them match mine, so they are less likly to be related to the LBBB.

[marciab 2]

I know how the heart works, and what a LBBB is. I do not recall you asking anything about that. I thought you were asking if Gluten COULD cause a LBBB, and IF IT DID would "get better" going gluten-free. And I think we all said its possible. I am sorry if I misunderstood your question.

SIDE NOTE: For others reading the thread, here is a nice easy to read explanation of the typical Bundle Branch Block (can be left or right, in our cases its left).

http://www.mayoclinic.com/health/bundle-branch-block/DS00693

There are a very large number of things that could cause it, so no cause really can be ruled out.

Marci,

As for your other symptoms, if your SURE your 100% gluten-free, and the other symptoms have not gone away, then you likely need to seek testings/research in to other issues, like I mentioned before. There is no silver bullet here, it takes time and dedication, lots of both really, to track this stuff down. Post your symptoms in a new thread with subject something like "Need help finding cause of symptoms" or something and surly you will get a broader reading audience to look at them and make suggestions. None of them match mine, so they are less likly to be related to the LBBB.

Actually I was just looking for research data to back up the idea that Purkinje cells are damaged in other parts of the body than the brain. Hence the name of the thread ...

Dr. H proved that gluten damages the brain causing ataxia AND since my ataxia and heart problems cleared up (or have at least become unnoticeable) at the same time, I was wondering if the two were related.

He also proved that gluten damages other parts of the brain, but I'm still in research mode and am not as familiar with that data yet.

All the data I have seen todate states that celiacs can have heart problems, but I haven't seen any reference to LBBB. But, like I said I have just begun to research this. I was hoping someone here had already found a link ... It would save me some time ...

We got side tracked with the LBBB issue. I know you know what LBBB is, but I figured it anyone else was reading this I would provide links that explained it ...

AS far as the Post exertional fatigue goes, I am still researching the cause of that too ..

I hope this straightens things out and we can get back to the jist of the thread .. marcia

[marciab 2]

I don't know much about this, but I have read that gluten reactions can cause nerve damage that does not always heal once a gluten-free diet is started. So even symptoms that do not go away on a gluten-free diet may still have stemmed from gluten.

But I would say there is always hope. The body's ability to heal can be amazing when it is treated well.

Thanks for adding this. And of course, you are right. Unfortunately, some damage is permanent.

BUT, since we are dealing in unchartered waters here and no one knows how much gluten damage can be repaired, I have been looking into providing all the nutrients the brain / body needs to heal itself.

These websites are a good source of info on what to feed the brain and there are plenty of sites online that tell you what other nutrients your body needs. JMHO, those of us with damage need to eat as healthy as is humanly possible.

http://www.fi.edu/brain/fats.htm

http://www.mindscience.org/Test.htm

http://www.newscientist.com/channel/being-.../mg18625011.900

Marcia

[marciab 2]

I just wanted to add that I've been gluten free for two and a half years now, and i wasn't anything like as sick as marciab's signature says she was, but sometimes i still get something that I could call mild post exertional fatigue. A bit like feeling like I have the flu. Especially if I've been recently glutened - or caseined. I've actually started to avoid exercising right after a glutening, because it doesn't make me feel better and sometimes makes me feel way worse.

I has gotten much better though compared to a couple years ago, and I hope things will keep improving. But I think it's possible that this may always be a glutening symptom for me. Of course I do my best to not get glutened!

Just my uninformed opinion but it does sound to me like your two cases (marciab and Vydorscope) might have different causes.

Pauliina

Pauliina

Thanks for replying. It's like 4 am here and my kidney stone pain woke me to let me know it is still there ... ow ... Thank God for Percocet ...

Have you checked out that website for post exertional fatigue ? It goes into all the reasons that could be causing it. There is a lot of info there, but that doctor does a good job of explaining it.

http://www.aacfs.org/p/260.html

Post-exertional malaise has always been considered a defining feature of CFS, although we are still uncertain why it occurs (Fukuda). A recent genomics paper clearly demonstrated a difference, using gene array technology, between CFS patients and controls before and after exercise (Whistler). VanNess, et al recently produced an abstract demonstrating inability of CFS patients to replicate VO2 (measured oxygen consumption) in the second of two graded cardiopulmonary exercise tests separated by only 24 hours of rest, although effort was identical as measured by RQ (VanNess). This finding may be unique to CFS. The CFS patients had almost a 20% drop in VO2 on Day 2 compared to normal, deconditioned controls who achieved the same VO2 on Day 1 and Day 2 of exercise testing. In another study, the same research team objectively demonstrated a decline in cognitive function in 20 CFS patients 30 minutes and 24 hours after a graded cardiopulmonary exercise test compared to pre-exercise levels, with no such observed change in the 20 age matched deconditioned controls (VanNess, unpublished manuscript).

A related concept is the idea that a

[aikiducky 1]

Pauliina

Thanks for replying. It's like 4 am here and my kidney stone pain woke me to let me know it is still there ... ow ... Thank God for Percocet ...

I hope the Percocet kicked in...

Have you checked out that website for post exertional fatigue ? It goes into all the reasons that could be causing it. There is a lot of info there, but that doctor does a good job of explaining it.

Yes, thank you for that link! The suggestions in the end were very sensible I think, and pretty much what I have ended up doing (drink lots, not get overheated, not pushing it too much in one go, the fact that even seemingly insignificantly small amounts of exercise help if you stick to it).

In each case, exercise is safe if the underlying condition is well defined and under good control, a safe level and type of exercise are prescribed, and the patient is meticulously educated regarding how to exercise and how to recognize signs that exercise should be limited.

This describes me EXACTLY. As I said, I only experience this when I've been glutened, and obviously when I've been glutened the underlying condition is NOT under good control at that moment! Sometimes it's hard to accept, if I want to work out, that this or that particular week it's just not going to happen. When I haven't been glutened for a while, I can push myself and do much more than I expect, and I only feel pleasantly tired after quite strenuous exercise. So for me it's not a constant thing, but clearly related to gluten.

I am definitely suffering from PEF not glutenning. It has taken awhile, but since I have so many of my other symptoms under control and I don't eat out or take any risks of CC, I have narrowed this particular fatigue to PEF. (Famous last words ) Ok, I am 99.9% certain.

I don't have any idea about why you would still feel fatigued. Do you mean that you try to exercise but then invariable end up fatigued? Or that your are always fatigued even when you don't exercise?

Have you considered other intolerances? I get the same symptoms, including PEF (I love that I have a name for it now), from dairy...

Wouldn't it be nice if we had answers to all of this ?? Take care ... Marcia

I suspect noone really has answers to a lot of this yet. But I'm really glad for this discussion, because it has given one of my symptoms a name.

Pauliina

[Aunt Poppy 0]

Marcia, Can you or anyone describe your ataxia. Three months ago I was hospitalized with diarrhea and dehydration following three rounds of antibiotics. The colonoscopy showed IBS and all Celiac blood test were normal. However, when I was discharged from the hospital, I had difficulty walking and now periodically, especialy with anxiety, have a little trouble. It is like my legs don't want to work correctly. No one else notices, but I feel it. I also noticed some spacicity in my arms upon waking in the morning. This is all much better (only occasional episodes now), but I have pretty much gluten free for the last month. I just wondered how anyone else would describe theri ataxai.