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Old 03-30-2007, 01:00 PM
Marciab Marciab is offline
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Default Celiac and gluten ataxia vs gluten intolerance

I feel like I am getting a handle on this, but then again I thought I knew all about gluten intolerance when I learned about celiac disease.

At first, I thought the only damage associated with gluten would be found in the small intestine (celiac disease).

Then I saw where Dr. Hadjii.. has now proven that gluten can cause damage to the brain. So far the symtpoms I have seen him account for are ataxia of the arms and legs, ocular ataxia (visual problems, but I'm not sure exactly what those are yet) and cognitive problems. And I just found where he said nueropathies are sometimes associated with gluten.

Does anyone have any ideas on where this is all going ? Marcia

UM ... The first word was celiac before my fingers ran amuk ...

Last edited by Marciab; 03-30-2007 at 01:07 PM. Reason: Yikes... I hit the wrong button and this got posted before I was done.
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Old 03-30-2007, 01:31 PM
GFPaperdoll GFPaperdoll is offline
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Good Question, I will be happy to give you my answer.
Where this is going to end up is proving that the "gold standard" of celiac diagnosis via endoscopy to find damaged villi is totally WRONG and USELESS.

which some of us have already known for awhile.
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Old 03-30-2007, 02:00 PM
Marciab Marciab is offline
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Thanks for replying ... I am beginning to see how involved all this is ...

What is confusing me is that the NIH stated only people with celiac disease (gold standard biopsy proven) are known to have thyroid problems, diabetes, miscarrages, etc etc etc .... BUT ... which came first ??? Diabetes or celiac ??

Then what about all those who don't have damage YET ... ARE they supposed to eat gluten until they have damage ??? Are any doctors using antibody tests alone to tell them not to eat gluten ? And are the antibody tests even reliable ?

Is gluten actually responsible for damaging the pancreas (not the small intestine) and that is how someone gets diabetes ? Or the thyroid ? And they just don't know how to biopsy the pancreas for gluten damage yet ???

I've read that nutritional deficiencies from damaged villi can lead to other problems, but that is not what Dr. H has proven. He says that damage from gluten directly affects the brain without causing damage to the villi. Which means ... nutrients are not the problems ... it's gluten ...

Do you know of other studies that are looking for gluten induced damage in other organs ???

Hmmm ... Marcia


sooo many questions ...

Last edited by Marciab; 03-30-2007 at 09:49 PM.
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  #4  
Old 03-30-2007, 02:28 PM
Marciab Marciab is offline
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This article is where Dr. H. talks about finding out that those patients with gluten ataxia also have ....

"Ocular signs were observed in 84% and dysarthria in 66%. Upper limb ataxia was evident in 75%, lower limb ataxia in 90% and gait ataxia in 100% of patients.

Gastrointestinal symptoms were present in only 13%. MRI revealed atrophy of the cerebellum in 79% and white matter hyperintensities in 19%. "


http://cat.inist.fr/?aModele=afficheN&cpsidt=14517611

Gluten ataxia in perspective: epidemiology, genetic susceptibility and clinical characteristics

HADJIVASSILIOU Marios (1) ; GRÜNEWALD Richard (1) ; SHARRACK Basil (1) ; SANDERS David (2) ; LOBO Alan (2) ; WILLIAMSON Clare (3) ; WOODROOFE Nicola (3) ; WOOD Nicholas (4) ; DAVIES-JONES Aelwyn (1) ;



I copied this part in ...



We previously have described a group of patients with gluten sensitivity presenting with ataxia (gluten ataxia) and suggested that this disease entity may account for a large number of patients with sporadic idiopathic ataxia.

We have therefore investigated the prevalence of gluten sensitivity amongst a large cohort of patients with sporadic and familial ataxia and looked at possible genetic predisposition to gluten sensitivity amongst these groups.

Two hundred and twenty-four patients with various causes of ataxia from North Trent (59 familial and/or positive testing for spinocerebellar ataxias 1, 2, 3, 6 and 7, and Friedreich's ataxia, 132 sporadic idiopathic and 33 clinically probable cerebellar variant of multiple system atrophy MSA-C) and 44 patients with sporadic idiopathic ataxia from The Institute of Neurology, London, were screened for the presence of antigliadin antibodies.

A total of 1200 volunteers were screened as normal controls. The prevalence of antigliadin antibodies in the familial group was eight out of 59 (14%), 54 out of 132 (41%) in the sporadic idiopathic group, five out of 33 (15%) in the MSA-C group and 149 out of 1200 (12%) in the normal controls.

The prevalence in the sporadic idiopathic group from London was 14 out of 44 (32%). The difference in prevalence between the idiopathic sporadic groups and the other groups was highly significant (P < 0.0001 and P < 0.003, respectively).

The clinical characteristics of 68 patients with gluten ataxia were as follows: the mean age at onset of the ataxia was 48 years (range 14-81 years) with a mean duration of the ataxia of 9.7 years (range 1-40 years).

Ocular signs were observed in 84% and dysarthria in 66%. Upper limb ataxia was evident in 75%, lower limb ataxia in 90% and gait ataxia in 100% of patients.

Gastrointestinal symptoms were present in only 13%. MRI revealed atrophy of the cerebellum in 79% and white matter hyperintensities in 19%.

Forty-five percent of patients had neurophysiological evidence of a sensorimotor axonal neuropathy. Gluten-sensitive enteropathy was found in 24%. HLA DQ2 was present in 72% of patients.

Gluten ataxia is therefore the single most common cause of sporadic idiopathic ataxia. Antigliadin antibody testing is essential at first presentation of patients with sporadic ataxia.


This explains so many of my symptoms and they fact that they are gone or almost gone tells me I had undiagnosed gluten ataxia. I have white lesions on my brain and was told they were common for migraine sufferers. I don't know about atrophy of the cerebellum yet ... Dr. H. recommends a MRS to check for that ...

Marcia
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  #5  
Old 03-30-2007, 02:51 PM
GAngel GAngel is offline
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Default gluten intolerance

GFPaperdoll,
Love your response. I too believe that the "gold standard" has to change. I think the gold is a little tarnished!

By the time you meet the gold standard you ARE DEAD.

I by no means meet the gold standard diagnosis, However I was sick enough to die. Had it not been for this forum and my own ability to research I would not be breathing right now. Let alone eating.

I just had a great lunch. Steak, sweet potato fries, and baked pears. A month in a half ago I wasn't able to eat at all without being extremely nauseated or vomiting.

I am better because of things like this forum. Because I keep searching for an answer, because I was willing to listen to the top researchers and apply their suggestions for supplimentation.

I don't know if we will ever get doctors to open their minds to this but at least we can help each other.

GAngel
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  #6  
Old 03-30-2007, 06:58 PM
halsgluten halsgluten is offline
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Quote:
Originally Posted by Marciab View Post
BUT ... which came first ??? Diabetes [or] celiac ??
The chronic immune reaction to a food happens first. The longer you eat gluten, the more autoimmune reactions you develop. Celiac Disease and Type I Diabetes (and some Type II Diabetes) are just a couple examples of autoimmune conditions that can result from chronic untreated food sensitivity. [Reference Ventura, et al, below]

Right, the confusion comes from the history of denial that there is such a thing as common gluten sensitivity. If there is no such thing as gluten sensitivity, then Celiac Disease and Type I Diabetes can’t possibly have gluten sensitivity as a common factor.

There are several ways that chronic untreated gluten sensitivity can cause other problems; breaking down your digestive system, opening up your body to food proteins, turning your immune system way up, chronic inflammation triggering cancers, spreading the gliadin allergen all over you body spreading the inflammation, the gliadin forming into Alzheimer-like amyloid plaques (polyglutamine), etc.

Your pancreas, gallbladder and upper small intestine are all snuggles up against each other, so inflammation of one (say gluten in the small intestine) should inflame the others.

Gluten sensitivity can give you leaky gut. Leak gut can let tomato lectins inside. Tomato lections bind specifically to panaceas islet cells and should trigger “autoimmune” reaction to those insulin producing cells.

I recently read that panaceas islet cells also have clusters of nerve endings

Here are other things I’ve collected on diabetes (sorry, two years old):
http://www.members.cox.net/harold.kr...s/diabetes.htm

“Duration of exposure to gluten and risk for autoimmune disorders in patients with celiac disease.” SIGEP Study Group for Autoimmune Disorders in Celiac Disease., Ventura A, Magazzu G, Greco L., Department of Pediatrics, University of Trieste, IRCCS Burlo-Garofolo, Trieste, Italy. ventura@burlo.trieste.it, Gastroenterology. 1999 Aug;117(2):297-303.
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Old 03-30-2007, 08:10 PM
NancyM NancyM is offline
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Given that just about every autoimmune disease under the sun is also more likely to happen if you also have celiac disease (or IMHO gluten sensitivity) I think the chain of events starts in the gut. My rhuematologist believes this too, that's why his treatment is based off of fixing up the leaky gut.
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Old 03-30-2007, 08:30 PM
Marciab Marciab is offline
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Thanks for your help ...

I copied this in ...

“Patients with celiac disease have high levels of diabetes- and thyroid-related autoantibodies that “disappear” when the patients are placed on a gluten-free diet.”

Geesh ... Is it too much to ask that gluten antibody tests be run before diagnosing someone with diabetes, etc ??

We know that villi don't heal spontaneously. It takes 2 years for an adult to heal ...

But do we know if the villi all of the sudden become flat ? If someone were to re-introduce gluten after 2 years gluten free, how long would it take their villi to flatten out again ? Days, months, years ??

Does villi have to be completely flat to be diagnosed as celiac ? Actually, I saw a chart of the 6 levels of villi damage at a seminar by Shelley Case, but I don't know where to find it in online ... Anyone ? I don't know what the medical profession is using ...

Marcia
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Old 03-30-2007, 08:41 PM
Marciab Marciab is offline
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Quote:
Originally Posted by NancyM View Post
Given that just about every autoimmune disease under the sun is also more likely to happen if you also have celiac disease (or IMHO gluten sensitivity) I think the chain of events starts in the gut. My rhuematologist believes this too, that's why his treatment is based off of fixing up the leaky gut.
Nancy,

Can you tell me what you are doing to help yourself heal? My doc told me that no one knows what to do ... Do you live in the US ?

Didn't I read somewhere that the gut damage begins lower than the small intestine and then makes it's way up to the celiac section ?

Marcia

I forgot about the skin connection (DH) that can be present without celiac disease. I found this the other day ...

This article says that melanoma can be related to celiac disease ... I had this in 1998. Not good ...

http://www.ccjm.org/PDFFILES/Harrison3_07.pdf

Marcia

Last edited by Marciab; 03-30-2007 at 09:01 PM.
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  #10  
Old 03-30-2007, 08:58 PM
RosemaryThyme RosemaryThyme is offline
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Default Tricky phrasing and twisted logic

are what I see in the communications of many doctors. You said

Quote:
Originally Posted by Marciab View Post
\What is confusing me is that the NIH stated only people with celiac disease (gold standard biopsy proven) are known to have thyroid problems, diabetes, miscarrages, etc etc etc .... BUT ... which came first ??? Diabetes are celiac ??
To me this means that this is the only research that has been done. They have not yet recognized gluten intolerance and so have done no studies on it. Further, they are probably looking at the correlation, not causation. Most doctors don't think about the distinction between correlation and causation. (Which things are associated and which things are causal).

This is what I learned even before I heard of gluten sensitivity or celiac.

I use a lot of supplements and some of them have helped me greatly. For instance, I use SAMe and before that glucosamine sulfate, and this has alleviated osteoarthritis symptoms for over twelve years. When I first considered using them, like a "good patient" I asked my doctor. Of course, he said, "You'd be wasting your money, there's no evidence that they work." (There is more now, but back then there wasn't much out).

I used them anyway because I was in pain and they worked exceptionally well! Technically a doctor will say "There's no evidence that they work" and often be correct. This may mean that double-blind research with a large number of subjects has not been conducted in the United States. This kind of logic has been the rule in the medical profession and it is a part of their culture. But this is said in a manner indicating "They don't work." Here are questions I've asked doctors that give me this "line."

Do you mean that there's been research and it indicated that this supplement was ineffective? (It doesn't work). If so, how would you evaluate the research? Was it done with the most effective form of the supplement? Was it given in the appropriate dosage? What about the research subjects and their characteristics? Did they have advanced illnesses, etc?

Is there any clinical evidence (not research studies) that this works? Have you tried it with patients and found it to be ineffective, and thus are you saying it doesn't work based on your own clinical experience?

Do you mean research was done and the supplement was shown to be ineffective, or do you mean that no research was done and hence we don't know whether it is ineffective or effective?

Since this known to be relatively safe, is there likely harm in taking it (such as large doses of vitamin C)?

One I'd like to ask: Have you ever calculated the dangers of taking a typical prescription drug vs a typical supplement (not herbs)?

I do give doctors the benefit of the doubt, thinking most are well intentioned, but not well-informed. Mainly the culture of medicine is woefully inadequate when it comes to getting good information and giving it to patients, helping patients make informed decisions that include both alternative and conventional options.

Okay, that's my rant for now.

Last edited by RosemaryThyme; 03-31-2007 at 09:46 AM.
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