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Old 02-10-2011, 11:30 AM
LisaRaynor LisaRaynor is offline
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Default Idiopathic Neuropathies and Celiac

I have had unexplained neurological issues for almost 2 years now following a measles vaccine booster . I have become so weak and my muscles have deteriorated. I have been to doctor after doctor only to be misdiagnosed until last week.They thought I had MS, Guillian Barre Syndrome, ect... I went to a RA doctor as I knew this was autoimmune related and she tested for everything and I came up positive for DGPA IgG and IgA. and told me I have Celiac Disease. I found this forum and hoped that maybe someone can tell me if there is a doctor that specializes is Celiac Disease and the neurological issues associated with it. I live in NY but will travel. I am a nursing student and I understand how it manifests neurotically, but has anyone found that eating gluten free has reversed the neurological issues. All that you have to share is greatly appreciated because only you know what this is like. I'm so tired of being sick. My heart goes out to each and everyone of you, because I can say I do know how you feel.
Thank You
Lisa
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Old 02-10-2011, 04:19 PM
Zonulin Zonulin is offline
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You know, that's interesting about the measles vaccine "booster" -- the leader of our Gluten Intolerance Group got a flu shot and was immediately stricken with "Guillain-Barre" disease (or that's the best diagnosis the doctors could find since she was basically paralyzed). Surprise! It was only temporary Guillain-Barre...so it was NOT Guillain-Barre. So she never got a true diagnosis. But she is a diagnosed celiac (flattened villi upon endoscopy/years of being very very sick) - check out this link written by gastro doctor Scot Lewey, who specializes in celiac and neurological disease: http://ezinearticles.com/?Brain-And-...Diet&id=904155 Dr. Lewey is in Colorado -- perhaps you could contact him if you clicked on the link on his name - or maybe he could refer you to a doctor closer to where you are.

Dr Mario Hadjivassiliou in the UK is probably the world's most knowledgeable doctor re the link between neurological problems and gluten, and because he is in the UK he can actually do medical research without "interference" from the pharmaceutical companies. Check out PubMed just using his name - also, Cara has gathered some great data at the top of this forum under "The Gluten File." This is one of Dr. Hadjivassiliou's more recent studies:

http://www.ncbi.nlm.nih.gov/pubmed/20837968

Quote:
Neurology. 2010 Sep 14;75(11):1003-8.

Sensory ganglionopathy due to gluten sensitivity.Hadjivassiliou M, Rao DG, Wharton SB, Sanders DS, Grünewald RA, Davies-Jones AG.

Department of Neurology, Royal Hallamshire Hospital, Sheffield, UK. m.hadjivassiliou@sheffield.ac.uk

Abstract
OBJECTIVES: Gluten sensitivity can engender neurologic dysfunction, one of the two commonest presentations being peripheral neuropathy. The commonest type of neuropathy seen in the context of gluten sensitivity is sensorimotor axonal. We report 17 patients with sensory ganglionopathy associated with gluten sensitivity.

METHODS: This is a retrospective observational case series of 17 patients with sensory ganglionopathy and gluten sensitivity. All patients had been followed up for a number of years in dedicated gluten sensitivity/neurology and neuropathy clinics.

RESULTS: Out of a total of 409 patients with different types of peripheral neuropathies, 53 (13%) had clinical and neurophysiologic evidence of sensory ganglionopathy. Out of these 53 patients, 17 (32%) had serologic evidence of gluten sensitivity. The mean age of those with gluten sensitivity was 67 years and the mean age at onset was 58 years. Seven of those with serologic evidence of gluten sensitivity had enteropathy on biopsy. Fifteen patients went on a gluten-free diet, resulting in stabilization of the neuropathy in 11. The remaining 4 had poor adherence to the diet and progressed, as did the 2 patients who did not opt for dietary treatment. Autopsy tissue from 3 patients demonstrated inflammation in the dorsal root ganglia with degeneration of the posterior columns of the spinal cord.

CONCLUSIONS: Sensory ganglionopathy can be a manifestation of gluten sensitivity and may respond to a strict gluten-free diet.

PMID: 20837968 [PubMed - indexed for MEDLINE]
Hope you are feeling better soon!

Karen
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Old 02-10-2011, 08:10 PM
GFPaperdoll GFPaperdoll is offline
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Default Healing faster

For faster healing you might just want to skip the gluten free grain foods and adopt a grain free diet and also dairy free.

If you want to eat very very healthy then you can adopt more of a Paleo diet. That is no grains, no dairy, no white potatoes, no rice, no corn, no artificial sugar, no sugar, and no legumes.

You can eat all meats, all seafood, all veggies ( except the white potatoes), all fruits, eggs, nuts you tolerate. I eat sweet potatoes and all dried fruits. I also added coconut milk and coconut oil to my diet. The healthy fats are coconut oil, avocadoes, any nuts you tolerate, all fat on meat, leftover bacon fat and fat you render from fat you can get from your butcher, and olive oil. We do not eat hydrogenated vegetable oil. That is getting a lot of press very recently about how bad the hydrogenated vegetable oil is for you.

Good luck with your journey to healthy eating.
jeanne
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Old 02-11-2011, 08:36 AM
glenntaj glenntaj is offline
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Default In the United States--

--the leading researchers into the gluten/neuropathy connection are right in your own area--the Cornell Weil Center for Peripheral Neuropathy, which has offices at both the Cornell Weill campus on the upper east side of Manahattan and at Columbia Presbyterian on the West Side.

Drs. Latov, Chin, and Brannigan have been at the forefront of autoimmune neuropathy research for decades and have published a number of papers on the unusual neurologic presentations of gluten sensitivity. Just Google them up and make an appointment (though you may have to wait a bit--they're in big demand, but one can always call in for cancellations). (I believe number is still 212-888-8516.) They do excellent neurological evaluation in initial appointment--and bring any lab/test results you may already have (saves repetition).
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Old 02-14-2011, 02:36 AM
can can is offline
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Smile yes

Dr. Peter HR Green is the director ( I guess he still is ) of The Celiac Disease Center at Columbia University. Dr. Green has been on the Dr Ozz show and has written a book called Celiac Disease-A Hidden Epidemic ( 2006 ).
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Old 02-14-2011, 08:36 AM
glenntaj glenntaj is offline
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Default I will say, though--

--that Dr. Green has been slow to accept the idea of non-celiac gluten sensitivity with presenting symptoms outside the gastric tract. (And I've had that conversation with him personally on one occassion.)
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Whatever it is, it'll only get worse in the summer.
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Old 02-14-2011, 04:33 PM
Zonulin Zonulin is offline
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That's what I've heard, too - he's a carpenter (if all you've got is a hammer, everything looks like a nail). Celiac ("seeliac") is all he "sees." But he is in New York! Let's hope LisaRaynor checks back in again and gets a consult with Cornell Weill.

Karen
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