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Old 10-14-2009, 10:48 AM
jcc jcc is offline
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Default Clinical Trial - Gluten and Ataxia

http://www.clinicaltrials.gov/ct2/sh...NA%3AUS&rank=3

Currently recruiting:

Autoimmunity in Neurologic Complications of Celiac Disease

Quote:
Purpose
This study, done in collaboration with Cornell University in New York, will explore the potential role of the body's immune response to gluten in ataxia. Celiac disease is an autoimmune disorder that is triggered by the ingestion of wheat gluten and related proteins in genetically susceptible individuals. Some people with celiac disease also develop ataxia, which is a loss of muscle coordination, leading to imbalance. The cause of the associated ataxia is not well understood, but it is suspected to be related to the immune response towards gluten in these patients. Preliminary results indicate that antibodies in people with celiac disease can react with brain proteins, which might have a role in the associated neurologic deficits. The aim of this study is to characterize the immune response in the ataxia that is associated with celiac disease.
People 18 years of age and older with 1) ataxia and no celiac disease, 2) ataxia plus celiac disease and 3) matched healthy control subjects will be enrolled at the NIH. People with celiac disease only will be enrolled at Cornell University.

All participants have a blood sample drawn for various tests of immune function as well as genetic tests. Healthy volunteers also have a history and physical examination if they have not had one done at NIH in the past year. Some patients may require additional clinical evaluations for clinical or diagnostic reasons.
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Old 10-14-2009, 03:28 PM
Zonulin Zonulin is offline
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Very interesting...I wonder if they're defining "celiac disease" as the Gold Standard "flattened villi upon endoscopy"?? Who checked the biopsy slides, etc.?

Karen
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Old 10-14-2009, 07:34 PM
jcc jcc is offline
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My guess is the "with Celiac" means gold star, but my hope is that they will be looking for gluten sensitivity in those "without celiac disease". Here are some other studies out of Cornell so far. I'm thinking its probably the same team... but that is only a guess. I wonder if it says on the clinical trial site.

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Here is some of the research already out of Cornell:
Anti-ganglioside antibodies in idiopathic and hereditary cerebellar degeneration
Holly A. Shill, MD, Armin Alaedini, PhD, Norman Latov, MD and Mark Hallett, MD
From the Human Motor Control Section, Medical Neurology Branch (Drs. Shill and Hallett), National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD; and Department of Neurology and Neuroscience (Drs. Alaedini and Latov), Cornell University, New York, NY.
Address correspondence and reprint requests to Dr. Mark Hallett, Human Motor Control Section, NINDS, NIH, Building 10, Room 5N226, 10 Center Drive, MSC 1428, Bethesda, MD 20892-1428; e-mail: hallettm@ninds.nih.gov
Cerebellar degeneration has been associated with gluten sensitivity and celiac disease. Patients with celiac disease may have neuropathy and antibodies to gangliosides. The authors investigated the presence of antiganglioside antibodies in 22 patients with hereditary and nonhereditary ataxia and found 64% reactive in a novel agglutination test.
http://www.neurology.org/cgi/content...act/60/10/1672
And another:
Immune Cross-Reactivity in Celiac Disease: Anti-Gliadin Antibodies Bind to Neuronal Synapsin I1
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Old 10-14-2009, 07:44 PM
jcc jcc is offline
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hmmmm.. check out the inclusion criteria listed... I find a few things odd... like the people with CD and ataxia can't already be on a gluten free diet?

The patient meets criteria for CD based on the modified ESPGAN criteria
The patient is not on a gluten free diet

And... the people with the hereditary ataxias can't show positive antigliadin or other celiac related antibodies.


I guess this study could potentially exclude those with gluten sensitivity without CD based on this criteria. The way I read it... it would. How do you read it?
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Old 10-15-2009, 07:04 AM
glenntaj glenntaj is offline
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Default These are my guys in one part of the colloboration--

--it's the Latov, Chin, Alaedini group, that runs the Cornell-Weill Center for Peripheral Neruopathy and is associated with the Columbia Presbyterian Celiac Center, where Dr. Peter Green is.

I've had discussions with the first two, who definitely believe in the possibility of neurolgoical manifestations of gluten sensitivity without frank celiac. Peter Green has been a little slower to come around to this. I'm not sure about the National Institutes of Health people, though.

It may just be the purposes of the clarity of the study they've decided to concentrate on people with "gold standard" celiac diagnoses.
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Old 10-15-2009, 12:16 PM
Zonulin Zonulin is offline
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Quote:
And... the people with the hereditary ataxias can't show positive antigliadin or other celiac related antibodies. - jcc
How amusing - every so-called doctor we saw insisted that EVERYONE has SOME antigliadin antibodies - that it's "the norm." Hmmmmm....

Good news about Latov and Chin, Glenn. Do the others think Dr. Hadjivassiliou has been making up his findings all this time?

Karen
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Old 10-15-2009, 02:43 PM
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Quote:
Originally Posted by glenntaj View Post
--it's the Latov, Chin, Alaedini group, that runs the Cornell-Weill Center for Peripheral Neruopathy and is associated with the Columbia Presbyterian Celiac Center, where Dr. Peter Green is.

I've had discussions with the first two, who definitely believe in the possibility of neurolgoical manifestations of gluten sensitivity without frank celiac. Peter Green has been a little slower to come around to this. I'm not sure about the National Institutes of Health people, though.

It may just be the purposes of the clarity of the study they've decided to concentrate on people with "gold standard" celiac diagnoses.
Glenn, I thought that Latov and Chin were pretty on board in regard to gluten sensitivity w/o celiac disease, based on what you've said in the past. My first thought was that, of course, they will be looking at ataxia in those with gluten sensitivity as well as gold star celiac patients. It was when I went to confirm that... that I realized this study definitely excludes such patients.

But, you may be right. There may be a reason behind the seeming madness, that may in the end.... show supportive for gluten ataxia in those without gold star celiac disease. In any case, all research in this area is good research.

Dr. Green has come around~ I have a youtube of him saying so... with minute markers right to the spot...lol... for those who don't have time to listen to the whole thing.

Dr. Peter Green discusses Gluten Sensitivity... YouTube presentation
Check out Part 3, between the 4:30 - 8:00 minute marks
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Old 10-15-2009, 02:56 PM
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Quote:
Originally Posted by Zonulin View Post
How amusing - every so-called doctor we saw insisted that EVERYONE has SOME antigliadin antibodies - that it's "the norm." Hmmmmm....

Karen
I think the real stats are 10-12% of the "healthy" population have antigliadin antibodies.

I've come to cringe at the word "healthy". What exactly does that mean? Not yet diagnosed? Not dying next week?

I remember when my daughter was repeatedly referred to as a "healthy 12 year old girl"..in various medical reports..... when she had asthma, epilepsy, frequent general illness, chronic sinusitis, and a plethora of other symptom complaints (bone pains, joint pains, muscle spasms, unexplained rashes, etc, etc, etc). But because she didn't show villous atrophy on biopsy, she falls to one of those 10-12% of HEALTHY individuals with antigliadin antibodies .
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Old 10-16-2009, 06:27 AM
glenntaj glenntaj is offline
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Default That's cool about Dr. Green.

I suspect it may have had soemthing to do not only with what was coming out of Dr. H's research, but the fact that Latov's group and their associates were producing so much research on celiacs with peripheral neuropathy in the early part of this decade. It finally began to dawn on more gastros that gluten antibodies, even in those without celiac, could have neurological effects.

I had always thought it was damn blind/stupid of the medical establishment to have taken so long to come to that insight. After all, it had been LONG since documented that people with celiac could have sequelae in other non-gastric organ areas, as witness dermatitis hepatiformis. Given that so many people with antibodies often showed that effect first, before villous atrophy could even be documented, it doesn't seem such a leap to think that one could have other organ dysfunction before gastric dysfunction, or even absent gastric dysfunction. But it wasn't until cross-reativity of anti-gliadin antibodies to certain components of nerve was observed that people began to come around. Of course, in many medical circles, they've still to get the message. (Who was it that said that it takes on average 17 years before a documented research finding become part of standard medical/knowledge and practice?)

I think part of the stoty with this research may be to start with those people no one has an argument with--people with gold-standard celiac. But if I know those guys, if they get the results out of this they expect, down the road they'll be pushing to expand the research into those with only anti-gliadin abnormalities who are not frankly celiac. (This pattern would be very similar to that which pushed to expand diabetic neuropathy reserach to those without frank diabetes but "merely" Impaired glucose tolerance scores in the 80's at Hopkins.)

And yeah, 10-12% of the population has isolated anti-gliadin antibodies. Why would that be so surprising, given the fact that we've only recently, in evolutionary terms, tamed gluten grains for food? The question is, are any of such people really "healthy", or are they having effects from this that are as of yet subclinical. One of my neighbors, who has Bechet's syndrome, some years back started losing weight, showed up with low B12 readings, low vitamin D, low red blood cell values. He has Northern Italian ancestry. I sent him into Cornell Weill with instructions to ask for a gluten panel. Sure enough, only an isolated anti-gliadin IgG showed. But that was enough for them to urge him to go gluten free. He did, and the other values came up slowly, the weight loss stopped, and some of his Bechet symptoms lessened. So what's the moral here?
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Old 10-16-2009, 11:34 AM
Zonulin Zonulin is offline
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Cara - It is heartening to see Dr. Green acknowledging in Part 3 of 3 in that link you gave us that "gluten sensitivity exists" ("Sure 'n' I don' believe in fairies...but they're there all the same," said the Irish lass).

I have to repeat that ALL the gastros we saw told us that "EVERYONE has a certain amount of antigliadin antibodies" - maybe it was their way of defusing our concern for our skeletal son - maybe also ensuring that he continue eating gluten so he wouldn't "starve." Surely it was not because they were ignorant about these antibodies? Even the Mayo gastro told us this!!!! How interesting about your neighbor, Glenn - he is LUCKY that you recommended the panel testing and is choosing to regain his health by eating GF IN SPITE OF the docs.

Karen
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