Calling All Mother Hens
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi again Wayne,
If you have PD, it is an on again, off again condition, I have found. You seem to have already noticed PD-like symptoms that went away at a time in the past.
My mother was on Sinemet for some time, and did well on it, but that is what they used to start people out on. I hadn't remembered the trade name of the medication you mentioned, but, after looking up the generic name, I remember hearing about it at PD meetings, so it must've been out a while now.
I believe that the research people were trying various things, and that, at least at one time, they were trying to postpone putting people on Sinemet til later in the course of the PD by using some of these newer medications first. Perhaps that turned out well, so they are still doing that.
Back when some of these things had been out just a little while, there was a combination that Mother tried, but she ended up being put back on her original prescription for the Sinemet by itself. If she had been diagnosed today, I doubt that they would've started her immediately on Sinemet, but I really should do more reading before making that statement. I do know they were talking about doing that for a while.
There are a pretty full arsenal of things that can be tried based on why each thing is given nowadays. For certain, I would keep the neuro informed as to exactly how you are feeling on the medication, particularly right at first.
You will find that you may do well on some things while another person doesn't, so that person will be switched to something else. Who knows why it's like that?
Be sure to read carefully the official instructions as to how to take medication.
I know with Sinemet, the effectiveness of it may be substantially reduced if it's taken with protein. Some people notice that more than others. Your medication may be different in that respect as it works in a completely different way.
A while back, I did some googling and couldn't find much to connect gluten sensitivity (gs) and PD, although there was obviously much to connect other neurological conditions with celiac disease/gs, mostly the work of Dr. Hadj-a-ma-call-it at Sheffield U. in Sheffield, England. I guess I need to do some searching on line to see what comes up more recently.
You may remember this, but my mother has a double HDL-DQ2 phenotype, and tested positive for gliadin antibodies in the higher than normal range.
A few years before she was diagnosed with PD, she saw the neurologist for neuropathy in her feet. The tests proved negative, so it was ruled idiopathic at that time.
Due to her genes and gs test results and other history, I went ahead and eliminated gluten in her diet. (Thankfully, she can have everything else!)
Mother wasn't too happy with my doing that, but as time wore on, she slipped up and made the "mistake" of telling me that since she'd been "off the bread" her "feet didn't hurt anymore." That was the main reason I'd wanted her off of gluten, so she wouldn't have to have pain, so I'm glad she let that slip! Ha! In terms of helping with her PD symptoms -- who knows?
The particular add-on to her PD is that she has orthostatic hypotention, controlled with medication. This is over and above a low BP that might be caused by medications for PD, although those can sometimes make BP's lower, requiring one to get up a little slower from a bed or chair, etc. I took her to a doctor who deals with autonomic nervous system problems to see what he thought about the OH. At her age, we didn't put her through the tilt board tests, etc. The medications worked fine.
Mother had always run higher than desireable BP's in the past, and was on Aldomet originally for that until she was switched to Tenormin. That is why it seemed so strange to be dealing with hypotension following the Parkinson's Plus condition she got much later.
As I said, she has had funny reactions to medications. Before her PD, the cardiologist said that she should really be on a calcium channel blocker, but when they switched her to one, it made her feel awful, and one time we even took her into the ER with an arrhythmia from that. They didn't think that medication should've caused that. When she started it again and had the same reaction, she was put back on Tenormin, and her BP was fine up until she started to get the OH.
Anyway, you can see how difficult it is to have someone who doesn't react the same as everyone else to medications. With her, particularly given her age, we have had good success with minimal doses of things, but one has to be careful as some medications have a totally different way of acting at lesser doses.
This is an illustration of why I suggest letting your doctor know what's going on with you whenever you are put on a new medication...or an old one, for that matter.
Getting sleepy now.
Yours, Luce
If you have PD, it is an on again, off again condition, I have found. You seem to have already noticed PD-like symptoms that went away at a time in the past.
My mother was on Sinemet for some time, and did well on it, but that is what they used to start people out on. I hadn't remembered the trade name of the medication you mentioned, but, after looking up the generic name, I remember hearing about it at PD meetings, so it must've been out a while now.
I believe that the research people were trying various things, and that, at least at one time, they were trying to postpone putting people on Sinemet til later in the course of the PD by using some of these newer medications first. Perhaps that turned out well, so they are still doing that.
Back when some of these things had been out just a little while, there was a combination that Mother tried, but she ended up being put back on her original prescription for the Sinemet by itself. If she had been diagnosed today, I doubt that they would've started her immediately on Sinemet, but I really should do more reading before making that statement. I do know they were talking about doing that for a while.
There are a pretty full arsenal of things that can be tried based on why each thing is given nowadays. For certain, I would keep the neuro informed as to exactly how you are feeling on the medication, particularly right at first.
You will find that you may do well on some things while another person doesn't, so that person will be switched to something else. Who knows why it's like that?
Be sure to read carefully the official instructions as to how to take medication.
I know with Sinemet, the effectiveness of it may be substantially reduced if it's taken with protein. Some people notice that more than others. Your medication may be different in that respect as it works in a completely different way.
A while back, I did some googling and couldn't find much to connect gluten sensitivity (gs) and PD, although there was obviously much to connect other neurological conditions with celiac disease/gs, mostly the work of Dr. Hadj-a-ma-call-it at Sheffield U. in Sheffield, England. I guess I need to do some searching on line to see what comes up more recently.
You may remember this, but my mother has a double HDL-DQ2 phenotype, and tested positive for gliadin antibodies in the higher than normal range.
A few years before she was diagnosed with PD, she saw the neurologist for neuropathy in her feet. The tests proved negative, so it was ruled idiopathic at that time.
Due to her genes and gs test results and other history, I went ahead and eliminated gluten in her diet. (Thankfully, she can have everything else!)
Mother wasn't too happy with my doing that, but as time wore on, she slipped up and made the "mistake" of telling me that since she'd been "off the bread" her "feet didn't hurt anymore." That was the main reason I'd wanted her off of gluten, so she wouldn't have to have pain, so I'm glad she let that slip! Ha! In terms of helping with her PD symptoms -- who knows?
The particular add-on to her PD is that she has orthostatic hypotention, controlled with medication. This is over and above a low BP that might be caused by medications for PD, although those can sometimes make BP's lower, requiring one to get up a little slower from a bed or chair, etc. I took her to a doctor who deals with autonomic nervous system problems to see what he thought about the OH. At her age, we didn't put her through the tilt board tests, etc. The medications worked fine.
Mother had always run higher than desireable BP's in the past, and was on Aldomet originally for that until she was switched to Tenormin. That is why it seemed so strange to be dealing with hypotension following the Parkinson's Plus condition she got much later.
As I said, she has had funny reactions to medications. Before her PD, the cardiologist said that she should really be on a calcium channel blocker, but when they switched her to one, it made her feel awful, and one time we even took her into the ER with an arrhythmia from that. They didn't think that medication should've caused that. When she started it again and had the same reaction, she was put back on Tenormin, and her BP was fine up until she started to get the OH.
Anyway, you can see how difficult it is to have someone who doesn't react the same as everyone else to medications. With her, particularly given her age, we have had good success with minimal doses of things, but one has to be careful as some medications have a totally different way of acting at lesser doses.
This is an illustration of why I suggest letting your doctor know what's going on with you whenever you are put on a new medication...or an old one, for that matter.
Getting sleepy now.
Yours, Luce
Cristi,
Thanks, I appreciate your good wishes.
Incidentally, I forgot to post about the "Original" Hempmilk you sent. I've tried it several times now, and it does indeed seem to work better than the "Vanilla" version. At least, I haven't noticed any bloating, after using it with Corn Chex. Thanks again, I appreciate your kindness and thoughtfulness in sending that to me.
Love,
Tex
Thanks, I appreciate your good wishes.
Incidentally, I forgot to post about the "Original" Hempmilk you sent. I've tried it several times now, and it does indeed seem to work better than the "Vanilla" version. At least, I haven't noticed any bloating, after using it with Corn Chex. Thanks again, I appreciate your kindness and thoughtfulness in sending that to me.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Luce,
Hmmmmmmm. I hadn't given any thoughts to the possibility that PD symptoms could wax and wane. I wonder if the progression of the disease is put on hold during the times when symptoms are in retreat. I'll have to try to remember to ask the neuro doc about that when I see him again.
Here's my initial impression on the meds:
Sinemet is a combination of L-dopa, (the most widely used form of treatment for PD), and carbidopa. L-dopa is transfomed into dopamine in the dopaminergic neurons, (by L-aromatic amino acid decarboxylase). Unfortunately, however, only 1-5% of the L-dopa actually enters the dopaminergic neurons, and typically, the remaining L-dopa is metabolised into dopamine somewhere else, causing a wide variety of side effects. Because of feedback inhibition, L-dopa tends to result in a reduction in the native, (endogenous), formation of L-dopa, and so eventually, it's use becomes counterproductive.
Carbidopa is a dopa decarboxylase inhibitor. It helps to prevent the metabolism of L-dopa before it reaches the dopaminergic neurons. How effective the addition of carbidopa to the L-dopa might be, for reducing the problem of loss of endogenous production, is beyond me - I haven't the slightest idea.
Rasagiline, (Azilect), which is what I started taking today, reduces the symptoms by inhibiting monoamine oxidase-B, (MAO-B), which inhibits the breakdown of dopamine secreted by the dopaminergic neurons, so I think that it may avoid the issue of progressive loss of endogenous production of L-dopa. That's not saying that progressive loss of native L-dopa production will not occur, it's just saying that the drug shouldn't hasten that process along.
Selegiline, (Eldepryl), works the same way as rasagiline, except that it creates by-products, which include amphetamine and methamphetamine - each of which can have side effects that damage the Dopaminergic neurons. Because of that, rasagiline appears to me to be the safest, effective treatment, for early stages of PD, so that's why I've decided to start taking it.
Rasagiline can be taken with or without food, except that foods high in tyramine, and medications or supplements containing amines, must be avoided at all times, during treatment.
The doc seemed to think that I should be experiencing problems with orthostatic hypotention, but so far at least, I haven't noticed that effect.
I wish someone had suggested the GF diet to me back when my earliest symptoms began.
Thanks,
Wayne
Hmmmmmmm. I hadn't given any thoughts to the possibility that PD symptoms could wax and wane. I wonder if the progression of the disease is put on hold during the times when symptoms are in retreat. I'll have to try to remember to ask the neuro doc about that when I see him again.
Here's my initial impression on the meds:
Sinemet is a combination of L-dopa, (the most widely used form of treatment for PD), and carbidopa. L-dopa is transfomed into dopamine in the dopaminergic neurons, (by L-aromatic amino acid decarboxylase). Unfortunately, however, only 1-5% of the L-dopa actually enters the dopaminergic neurons, and typically, the remaining L-dopa is metabolised into dopamine somewhere else, causing a wide variety of side effects. Because of feedback inhibition, L-dopa tends to result in a reduction in the native, (endogenous), formation of L-dopa, and so eventually, it's use becomes counterproductive.
Carbidopa is a dopa decarboxylase inhibitor. It helps to prevent the metabolism of L-dopa before it reaches the dopaminergic neurons. How effective the addition of carbidopa to the L-dopa might be, for reducing the problem of loss of endogenous production, is beyond me - I haven't the slightest idea.
Rasagiline, (Azilect), which is what I started taking today, reduces the symptoms by inhibiting monoamine oxidase-B, (MAO-B), which inhibits the breakdown of dopamine secreted by the dopaminergic neurons, so I think that it may avoid the issue of progressive loss of endogenous production of L-dopa. That's not saying that progressive loss of native L-dopa production will not occur, it's just saying that the drug shouldn't hasten that process along.
Selegiline, (Eldepryl), works the same way as rasagiline, except that it creates by-products, which include amphetamine and methamphetamine - each of which can have side effects that damage the Dopaminergic neurons. Because of that, rasagiline appears to me to be the safest, effective treatment, for early stages of PD, so that's why I've decided to start taking it.
Rasagiline can be taken with or without food, except that foods high in tyramine, and medications or supplements containing amines, must be avoided at all times, during treatment.
The doc seemed to think that I should be experiencing problems with orthostatic hypotention, but so far at least, I haven't noticed that effect.
I wish someone had suggested the GF diet to me back when my earliest symptoms began.
Thanks,
Wayne
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Tex,
Unfortunately, I just got back from the store and they are reformulating their product. They have added carrrageenan as the thickener instead of xanthan gum. I am in no mood to experiment with carrageenan as this time. There is another product called hemp bliss made by manitoba harvest that is just hemp, sugar and xanthan gum. It has a higher fat content and is not fortified, but is organic. It doesn't taste quite as good as the living harvest..a stronger nutty taste....but I have found after having a food several times I get used to it fairly quickly. I never drink it straight anyway. So, I guess I am switching.
So, do you think that vanilla is a problem for you too ...or just with this product? It was interesting for me to discover that spices and seasonings can be such an issue. My blood test showed problems with garlic, ginger, pepper, basil and vanilla. No full blown reactions...just a yucky feeling.
I wish I had known about gluten a long time ago as well. I've been going to GI since I was 15 and never a mention. However I wonder if it isn't changing slowly. It seems like a lot of people my daughter's age know about it and even know someone their age who is on a gf diet. My daughter runs courses for outward bound and just this session has a girl with RA whose gf. The college where she graduated did lots of backpacking trips and they would adopt all the food restrictions of everyone going on the trip so no one felt left out. I know it's easy to wonder about the ways of the younger generation, but they seem to be kinder to each other than I remember when I was growing up. At least that is what I am choosing to believe.
Love,
Cristi
Unfortunately, I just got back from the store and they are reformulating their product. They have added carrrageenan as the thickener instead of xanthan gum. I am in no mood to experiment with carrageenan as this time. There is another product called hemp bliss made by manitoba harvest that is just hemp, sugar and xanthan gum. It has a higher fat content and is not fortified, but is organic. It doesn't taste quite as good as the living harvest..a stronger nutty taste....but I have found after having a food several times I get used to it fairly quickly. I never drink it straight anyway. So, I guess I am switching.
So, do you think that vanilla is a problem for you too ...or just with this product? It was interesting for me to discover that spices and seasonings can be such an issue. My blood test showed problems with garlic, ginger, pepper, basil and vanilla. No full blown reactions...just a yucky feeling.
I wish I had known about gluten a long time ago as well. I've been going to GI since I was 15 and never a mention. However I wonder if it isn't changing slowly. It seems like a lot of people my daughter's age know about it and even know someone their age who is on a gf diet. My daughter runs courses for outward bound and just this session has a girl with RA whose gf. The college where she graduated did lots of backpacking trips and they would adopt all the food restrictions of everyone going on the trip so no one felt left out. I know it's easy to wonder about the ways of the younger generation, but they seem to be kinder to each other than I remember when I was growing up. At least that is what I am choosing to believe.
Love,
Cristi
Cristi,
Thanks for the heads up. It's strange how so many companies feel obligated to "fix" their products, when they ain't broke. 
To be honest, I've never noticed that vanilla in any other product bothers me, but I suppose there are differences in some types/brands of vanilla.
Who knows - sometimes it seems that certain combinations cause problems.
Good point. A lot of young people do indeed seem to be a lot better informed on many health issues than we were at that age. When I was in college, if someone had asked the class if anyone was gluten sensitive, I seriously doubt that there would have been any response, other than unanimous blank stares. LOL. It may be community-dependent, but I think you're probably right about kids being more empathetic these days, (on the average). Back when I was in grade school, most kids seemed pretty cruel, and quick to tease others about disabilities, (of course, there were a few notable exceptions, bless their hearts).
Thanks for the tips.
Love,
Tex
Thanks for the heads up.
It's strange how so many companies feel obligated to "fix" their products, when they ain't broke. To be honest, I've never noticed that vanilla in any other product bothers me, but I suppose there are differences in some types/brands of vanilla.
Who knows - sometimes it seems that certain combinations cause problems.Good point. A lot of young people do indeed seem to be a lot better informed on many health issues than we were at that age. When I was in college, if someone had asked the class if anyone was gluten sensitive, I seriously doubt that there would have been any response, other than unanimous blank stares. LOL. It may be community-dependent, but I think you're probably right about kids being more empathetic these days, (on the average). Back when I was in grade school, most kids seemed pretty cruel, and quick to tease others about disabilities, (of course, there were a few notable exceptions, bless their hearts).
Thanks for the tips.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Well Tex, the outcome of your Neuro visit seems sorta like being hit from the side in an auto accident, or T-boned, as auto repair jockeys describe a particular type of car wreck. 
Yes, agree with your "chaos theory". It is just a more a classy and scientific way of saying "life is a crap-shoot". There is just no way around it
Must wait now for further tests as it doesn’t seem that there is anything absolutely diagnostic for PD, rather the diagnosis is arrived at by a process of exclusion, along with the presenting characteristics, which in your case is a gait that is typical of PD.
I am rather curious tho, hasn't anyone ever commented on noticing a change in you walking? I have a neighbor in AZ who was the Power Walking Queen of the area, every day she did her 3 mile trek. Well in the fall when I got back to AZ after the summer away, the first thing I noticed her walk --
whoa -- what's happening? Well -- she was diagnosed with PD. That gait change was really the first sign, at least in her case.
Sending positive thoughts your way.
Gayle
Yes, agree with your "chaos theory". It is just a more a classy and scientific way of saying "life is a crap-shoot". There is just no way around it
Must wait now for further tests as it doesn’t seem that there is anything absolutely diagnostic for PD, rather the diagnosis is arrived at by a process of exclusion, along with the presenting characteristics, which in your case is a gait that is typical of PD.
I am rather curious tho, hasn't anyone ever commented on noticing a change in you walking? I have a neighbor in AZ who was the Power Walking Queen of the area, every day she did her 3 mile trek. Well in the fall when I got back to AZ after the summer away, the first thing I noticed her walk --
whoa -- what's happening? Well -- she was diagnosed with PD. That gait change was really the first sign, at least in her case.Sending positive thoughts your way.
Gayle
Gayle,
Yep, he didn't have much to say about the TIA, but he jumped right on those other two issues. LOL.
Actually, they're working on a blood test, that checks a variety of enzymes, to screen for PD. It was supposed to be available about now, so we'll see if he ordered that test, when we get the results back.
Nope, no one ever noticed. My gait is not that bad - I believe you would have to be trained, to know what to look for, and you would have to be looking for signs, to notice anything wrong with my gait, (or course, you may be a lot more observant than most people - with some folks, you could have an extra eye, and they probably wouldn't notice, unless you kept winking at them with it.
). One is not likely to notice subtle changes, when you see the evidence every day, but if you were away for several months, that gave her an opportunity to change enough that you could see a difference - she may have changed rapidly. I don't drag my feet, or shuffle, or anything of that sort - yet.
Thanks for the good thoughts,
Tex
Yep, he didn't have much to say about the TIA, but he jumped right on those other two issues. LOL.
Actually, they're working on a blood test, that checks a variety of enzymes, to screen for PD. It was supposed to be available about now, so we'll see if he ordered that test, when we get the results back.
Nope, no one ever noticed. My gait is not that bad - I believe you would have to be trained, to know what to look for, and you would have to be looking for signs, to notice anything wrong with my gait, (or course, you may be a lot more observant than most people - with some folks, you could have an extra eye, and they probably wouldn't notice, unless you kept winking at them with it.
). One is not likely to notice subtle changes, when you see the evidence every day, but if you were away for several months, that gave her an opportunity to change enough that you could see a difference - she may have changed rapidly. I don't drag my feet, or shuffle, or anything of that sort - yet. Thanks for the good thoughts,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hummmmm,
Well -- possibly I do just observe movement differently than most.
After a long hobby in dogs, where correct movement is an important judging parameter, maybe I just am more likely to "see" something about movement???
One morning I opened the shutters in the bedroom in AZ to see this absolutely gorgeous creature gliding down our street. My first though was "Oh-Oh, someone's German Shepherd had gotten loose!” and my next thought was -- "What gorgeous movement that animal has!"
Then the quick DUH!!! hit as I realized it was not a GSD -- but a coyote.
That coyote could have been a top winning dog show anywhere in the country with his surefooted, smooth, gliding movement, his attitude, and his absolutely gorgeous coat (he was obviously living local and being fed). 
But you are correct, first and foremost it was the quality movement that caught the eye!
And yes, possibly I was able to notice the neighbors gait change after an absence. But at least in her case, a change was definitly there to observe.
Best,
Gayle
Well -- possibly I do just observe movement differently than most.
After a long hobby in dogs, where correct movement is an important judging parameter, maybe I just am more likely to "see" something about movement???
One morning I opened the shutters in the bedroom in AZ to see this absolutely gorgeous creature gliding down our street. My first though was "Oh-Oh, someone's German Shepherd had gotten loose!” and my next thought was -- "What gorgeous movement that animal has!"
Then the quick DUH!!! hit as I realized it was not a GSD -- but a coyote.
That coyote could have been a top winning dog show anywhere in the country with his surefooted, smooth, gliding movement, his attitude, and his absolutely gorgeous coat (he was obviously living local and being fed).
But you are correct, first and foremost it was the quality movement that caught the eye!
And yes, possibly I was able to notice the neighbors gait change after an absence. But at least in her case, a change was definitly there to observe.
Best,
Gayle
If you're into judging animals, you definitely see things that most people don't.
Yep, I have to agree that coyotes have a rather graceful way of moving. They seem to move effortlessly, and yet they tend to cover a lot of ground, without getting in a hurry. From a distance they almost seem to float along.
Tex
Yep, I have to agree that coyotes have a rather graceful way of moving. They seem to move effortlessly, and yet they tend to cover a lot of ground, without getting in a hurry. From a distance they almost seem to float along.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
-
harvest_table
- Rockhopper Penguin
- Posts: 1509
- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
Tex,
As always, I'm thinking about you.
Love,
Mother Hen from Fergus Falls.
As always, I'm thinking about you.
Love,
Mother Hen from Fergus Falls.
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
Tex,
I am joining this thread rather late, and I don't have much to add to what others have said, but I wanted to say that I'm also sending supportive thoughts, prayers, and good wishes.
A couple of years ago my paternal grandmother, who is 80 now, was tested for PD due to Parkinson's-like tremors. She did not meet the diagnostic criteria for PD, although she continues to have tremors, especially in her hands and feet. I suspect that she has a gluten intolerance due to her medical history (severe nausea and weight loss as a teenager, infertility--my dad was born after eight years of "trying" and he is an only child, pre-menopausal osteoporosis, ongoing stomach "issues"). She also is known in our family for being accident prone. Through her life, she's had accidents with kitchen knives, falling, tripping, etc., which suggests to me some loss of neurological control--again, involving her hands and feet.
FWIW, I thought you might be interested to know that she has many symptoms of PD, but she did not meet the diagnostic criteria in some way. I really suspect that gluten intolerance has caused some neurological damage there. If she is getting worse, it's progressing very slowly, and I suspect it has been doing so for most of her life.
Love,
Courtney
I am joining this thread rather late, and I don't have much to add to what others have said, but I wanted to say that I'm also sending supportive thoughts, prayers, and good wishes.
A couple of years ago my paternal grandmother, who is 80 now, was tested for PD due to Parkinson's-like tremors. She did not meet the diagnostic criteria for PD, although she continues to have tremors, especially in her hands and feet. I suspect that she has a gluten intolerance due to her medical history (severe nausea and weight loss as a teenager, infertility--my dad was born after eight years of "trying" and he is an only child, pre-menopausal osteoporosis, ongoing stomach "issues"). She also is known in our family for being accident prone. Through her life, she's had accidents with kitchen knives, falling, tripping, etc., which suggests to me some loss of neurological control--again, involving her hands and feet.
FWIW, I thought you might be interested to know that she has many symptoms of PD, but she did not meet the diagnostic criteria in some way. I really suspect that gluten intolerance has caused some neurological damage there. If she is getting worse, it's progressing very slowly, and I suspect it has been doing so for most of her life.
Love,
Courtney
Hypothyroid 05/05
LC/CC 07/08
Celiac 07/08
LC/CC 07/08
Celiac 07/08
Hi Courtney,
Thanks for the interesting insight into your grandmothers symptoms. Apparently the diagnosis of PD is not as simple as it appears. I'll bet you're right on the money with your guess about gluten involvement. Have you seen this article, describing the discovery of a new neuronal transglutaminase?
And this is an interesting observation:
http://jnnp.bmj.com/cgi/content/full/72/2/259
Thanks.
Love,
Tex
Thanks for the interesting insight into your grandmothers symptoms. Apparently the diagnosis of PD is not as simple as it appears.
I'll bet you're right on the money with your guess about gluten involvement. Have you seen this article, describing the discovery of a new neuronal transglutaminase?http://www.ncbi.nlm.nih.gov/pubmed/1882 ... d_RVDocSumRESULTS: Whereas the development of anti-transglutaminase 2 IgA is linked with gastrointestinal disease, an anti-transglutaminase 6 IgG and IgA response is prevalent in gluten ataxia, independent of intestinal involvement. Such antibodies are absent in ataxia of defined genetic origin or in healthy individuals. Inhibition studies showed that in those patients with ataxia and enteropathy, separate antibody populations react with the two different transglutaminase isozymes. Furthermore, postmortem analysis of brain tissue showed cerebellar IgA deposits that contained transglutaminase 6.
And this is an interesting observation:
57% is a pretty high percentage. That quote is from the following article, which deals with Dermatitis herpetiformis and neurological dysfunctionMore recently, Hadjivassilou et al have described a syndrome which they term "gluten ataxia".13 They initially made the surprising observation that 57% of patients with neurological dysfunction of unknown cause had serological evidence (AGA positivity) of gluten sensitivity.
http://jnnp.bmj.com/cgi/content/full/72/2/259
Thanks.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.