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jccgf 09-27-2007 02:49 PM

Narcolepsy, Parkinson's Disease, and Lewy Body Dementia
 
I recently heard from a woman via The Gluten File who had narcolepsy that remitted completely on a gluten free diet. She is a medical librarian, and has written this hypothesis paper~ so, I thought I would share it here for anyone who might be interested to read it.



Narcolepsy, Parkinson's Disease, and Lewy Body Dementia:
An Autoimmune Hypothesis


http://www.lindborglabs.com/Hypothesis.html


Cara

hurtsobad73 09-27-2007 02:55 PM

Very very interesting. Thank you for the link.

M

GregD 09-27-2007 03:22 PM

So without my having to read each and every link at this time, which I will do, what are the common symptoms of Gluten Sensitivity or Celiac Disease?

How does Gluten Sensitivity or Celiac Disease relate to Parkinson's Disease?

It's not that I'm lazy, I just don't have time to read it right now.

GregD

jccgf 09-27-2007 08:40 PM

There are some 250 symptoms associated with celiac disease/ gluten sensitivity, and can affect essentially any organ in the body~ skin, brain, nerves. So... hard to give a comprehensive list.

Here is one fairly comprehensive listing of symptoms.

The most commonly recognized symptoms are GI symptoms (diarrhea, constipation, gas, bloating, GI bleeding, malabsorption).

More common neurological symptoms include neuropathy, ataxia, seizures, cognitive decline, depression. It can also cause neuromuscular symptoms and movement disorders. You can have neurological symptoms with or without having GI symptoms.


From: Neurologic Manifestations of Gastrointestinal Disease by Mark B. Skeen, MD, Neurologic Clinics, Volume 20, Number 1, February 2002

"Neurologic disease associated with gluten sensitivity or celiac disease includes a wide range of manifestations:

Central nervous system (CNS) manifestations include dementia, cerebellar ataxia, myelopathy, encephalopathy, brain stem encephalitis, progressive multifocal leukoencephalopathy,chronic, progressive leukoencephalopathy, progressive myoclonic ataxia, seizures, isolated CNS vasculitis, and a syndrome of celiac disease with encephalopathy and bilateral occipital calcifications.”

“Several reports document the existence of peripheral neuropathy in association with celiac disease.”



How does it relate to Parkinson's Disease? I'm not sure I've seen any hard evidence, although I do see the question arise from time to time. The neurological symptoms of gluten sensitivity are diverse and just starting to be recognized... the connection might be one of potential misdiagnosis in some cases?

There is also the possible zonulin / BBB connection. Zonulin regulates the tight junctions of the intestinal barrier, and the blood brain barrier. It has been shown that those with celiac disease, diabetes, MS, and some other autoimmune diseases have higher levels of zonulin. It has also been shown that the ingestion of gluten actually leads to increased zonulin levels in all people....possibly leading to "leaky gut" and "leaky brain".

Quote:

About Zonulin
Zonulin is a signaling protein that transiently and reversibly opens the tight junctions ("tj") between the cells of epithelial and endothelial tissues such as the intestinal mucosa, blood brain barrier and pulmonary epithelia. Zonulin appears to be involved in many diseases in which leakage occurs via paracellular transport across epithelial and endothelial tight junctions (tj),
and thus may play an important potential role in the treatment of autoimmune diseases.
http://www.celiac.com/st_prod.html?p_prodid=1251

Affinity purification and partial characterization of the zonulin/zonula occludens toxin (Zot) receptor from human brain.
PMID: 10617135 Jan 2000

When the finely tuned trafficking of macromolecules is dysregulated in genetically susceptible individuals, both intestinal and extraintestinal autoimmune disorders can occur. This new paradigm subverts traditional theories underlying the development of autoimmunity, which are based on molecular mimicry and/or the bystander effect, and suggests that the autoimmune process can be arrested if the interplay between genes and environmental triggers is prevented by re-establishing intestinal barrier function.
Mechanisms of disease: the role of intestinal barrier function in the pathogenesis of gastrointestinal autoimmune diseases. PMID: 16265432 Sept 2005


CONCLUSIONS: Based on our results, we concluded that gliadin activates zonulin signaling irrespective of the genetic expression of autoimmunity, leading to increased intestinal permeability to macromolecules.
Gliadin, zonulin and gut permeability: Effects on celiac and non-celiac intestinal mucosa and intestinal cell lines. PMID: 16635908 April 2006

There is, however, growing evidence that the loss of the intestinal barrier function typical of celiac disease could be responsible of the onset of other autoimmune disease. This concept implies that the autoimmune response can be theoretically stopped and perhaps reversed if the interplay between autoimmune predisposing genes and trigger(s) is prevented or eliminated by a prompt diagnosis and treatment.
Systemic autoimmune disorders in celiac disease. PMID: 17053448 Nov 2006


Sorry... still gave you a lot to read~

Cara

jccgf 09-27-2007 09:13 PM

I just stumbled upon this past post... Narcolepsy and Parkinson's connection?

http://neurotalk.psychcentral.com/sh...ad.php?t=25930

reverett123 09-27-2007 09:50 PM

Celiac disease is one of the modern health mysteries too
 
There are definite links between the two. Sorting them out will be a challenge.


http://jnnp.bmjjournals.com/cgi/content/full/72/5/560
THE NEUROLOGY OF COELIAC DISEASE
In 1966 Cooke published a landmark paper on 16 patients with neurological disorders associated with adult CD.8 This was the first systematic review of the subject after the introduction of diagnostic criteria for CD. Ten of these patients had a severe progressive neuropathy. All patients had gait ataxia and some had limb ataxia. Neuropathological data from postmortem examinations showed extensive perivascular inflammatory changes affecting both the central and peripheral nervous systems. A striking feature was the loss of Purkinje cells with atrophy and gliosis of the cerebellum. All 16 patients had evidence of severe malabsorption as evidenced by anaemia and vitamin deficiencies as well as profound weight loss…..

…..A review of all such reports (with biopsy proved CD) from 1964 to date shows that ataxia and peripheral neuropathy are the commonest neurological manifestations seen in patients with established CD…

…Some studies looking at normal populations have shown that the prevalence of CD is much higher than previously thought13,14 (approximating to 1 in 100). Most of such patients have no gastrointestinal symptoms…..

…Systematic screening of 143 patients with so-called "idiopathic sporadic ataxia" showed that 41% had gluten sensitivity as defined by the presence of circulating antigliadin antibodies20 (IgG with or without IgA). The prevalence of antigliadin antibodies in 51 patients with familial ataxia did not differ from that found in normal healthy control subjects (13%). The mean age of onset of the ataxia was 54 but we have recently seen three patients with early onset (under 20 years of age) sporadic idiopathic ataxia and gluten sensitivity. Recently four patients have been described with CD presenting as gait disturbance and ataxia in infancy.21 Alhough the ataxia tends to be slowly progressive, in some cases it can take a very rapid course with the development of cerebellar atrophy within a year of the onset of the illness (fig 1Go). Ataxia and myoclonus is a much less common presentation (only four patients in these series). We have encountered two patients who in addition to ataxia had evidence of chorea but normal genetic testing for Huntington's disease. Gluten ataxia primarily affects the lower limbs and gait. Extrapyramidal or autonomic features are rarely apparent and these features distinguish it from the cerebellar variant of multisystem atrophy (MSA). Screening of patients with clinically probable MSA (cerebellar variant) for the presence of antigliadin antibodies showed the prevalence to be similar to the normal population. Brain MRI usually shows cerebellar atrophy; sometimes with evidence of white matter abnormalities. Up to 40% of patients also have a sensorimotor axonal peripheral neuropathy that can often be subclinical. In a few cases oligoclonal bands are present in the CSF….

….Peripheral neuropathy is the second commonest manifestation of gluten sensitivity. Prospective screening of 101 patients with idiopathic peripheral neuropathy has shown the prevalence of gluten sensitivity to be 40% (unpublished data). The commonest type of peripheral neuropathy we encountered is sensorimotor axonal (26) followed by mononeuropathy multiplex (15), pure motor neuropathy (10), small fibre neuropathy (four) and mixed axonal and demyelinating (two). The neuropathy is usually chronic and of gradual progression. Patients with a pure motor neuropathy may progress to involvement of sensory fibres…..

….Gluten sensitivity is best defined as a state of heightened immunological responsiveness in genetically susceptible people.15 This definition does not imply bowel involvement. That gluten sensitivity is regarded as principally a disease of the small bowel is a historical misconception.28 Gluten sensitivity can be primarily and at times exclusively a neurological disease.

GregD 09-27-2007 11:26 PM

Thanks Cara & Ric,
At least now I have a good idea of what celiac disease/ gluten sensitivity are and do to the body. I can see where there could be a connection to PD.
Hopefully next week I'll be able to sit down and do some reading.

GregD

jccgf 09-28-2007 11:58 AM

I also wanted to add that celiac disease and gluten sensitivity cause malabsorption, and therefore widespread symptoms related to vitamin deficiency. Although not widely recognized, nutritional deficiency itself can contribute to wide ranging neurological and neuromuscular symptoms..including depression, dementia, tremors, myoclonus, ataxia, and a whole lot more.

So, in celiac disease/gluten sensitivity, the neurological complications can come from both nutritional deficiency and immune system responses.

I don't know enough about Parkinson's disease to really analyze the possible relationship between these things. I just know that gluten sensitivity can do a lot of neurologic damage that is already well documented, and may be responsible for quite a bit yet undiscovered. For example, I have now heard from two people whose narcolepsy remitted via a gluten free diet. Anecdotal, but I value such evidence.

The problem with gluten related neurological disease is that damage is not as quickly reversed as is damage to the intestines. Sometimes the only hope is to limit further progression. This is the case with gluten ataxia, and also with peripheral neuropathy, and epilepsy (if associated with gluten..not suggesting all is). If caught early enough, there is at least a chance for reversal of symptoms. If identified too late the chances not as good. After removing gluten from the diet, it can take as long as 6-12 months for the immune system to stop reacting, and then those things that can repair do so very slowly.

Cara

Ibken 09-28-2007 01:24 PM

Gluten and PD symptoms
 
I posted recently (and briefly) that I have been on a Gluten Free diet for about 2 months. Afew weeks ago I succumbed to temptation and ate a breaded - with wheat flour - pork chop. Half-way through the meal I began to shake so badly that I couldn't hold the fork. The next morning I was very shakey and my gait was worse than usual. It took almost a week to get back to where I had been pre-breaded chop. Just a few days before that I had noted in my daily log that tremor and gait were both slightly improved.

I was put on this diet by Center IMT in Atlanta. I called to report my experience and the PT there said there could be anywhere from a 10 to 50% reduction in symptom severity when gluten free. She also said that it is not necessary to stay gluten free forwever - but it could take awhile - months to years, depending. Sorry I can't remember her explanations but got that gluten gloms up neuron endings. I also am taking several gluten elimination
supplements.

I don't expect a miracle cure here by anymeans but if eliminating gluten helps - as it seems to - I certainly plan to stick to it. I'm getting used to the diet...sometimes inconvenient and limiting and expensive - but doable.

Do any other PD'ers have gluten-free tales? I have one PD friend who was g-free for 2 years and got rid of all her aches and pains. Now that's encouraging! Come to think of it, I am not hurting as much as I used to either! :D

Ibby

jccgf 09-28-2007 02:18 PM

Great to hear you have had such positive results with a gluten free diet, Ibken! And nothing like an obvious reaction to gluten like the one you had... to confirm to yourself, at least, that gluten is a problem for you. It contradicts any notion that the improvements are placebo affect or coincidental.

How long did it take before you noticed improvement? My young daughter had been exhibiting ataxia like symptoms, but they all resolved within the first couple months... mostly within the first weeks..although we did have a few early oops with the diet that resulted in symptoms showing.

And those little bits of gluten do matter... for some people the slightest cross contamination during food preparation can provoke symptoms, or prevent someone from experiencing meaningful improvement. Live and learn. Even when doing your very best to avoid gluten 100%, there will be some unavoidable mishaps.
Quote:

I'm getting used to the diet...sometimes inconvenient and limiting and expensive - but doable.
I couldn't agree more... and after six years... I don't even notice I'm doing it...except when I go out to eat or I'm traveling. There is still a lot of food in the world that isn't wheat, barley or rye! I just have a little different grocery list than I used to... that has very few boxes.

Did they suggest that you also remove cow's milk? 50% of those with gluten sensitivity also have casein sensitivity, which can do much the same things. Both gluten and casein sensitivity have been suggested to aggravate various neurological and autoimmune diseases. But, it is individual... for some it is one or the other, but sometimes both. OK... corn and soy and yeast for some people, too. Essentially any food can provoke neurologic symptoms depending on the individual, but gluten, casein, soy, corn and yeast top the lists. So... if someone sets out to self experiment, I'd probably follow the dietary guidelines suggested on Direct-MS.


Little is PROVEN in this arena, except for Celiac Disease. And you can definitely have gluten sensitivity without having Celiac Disease... a subject still in hot debate among mainstream medicine... but Dr. Marios Hadjivassiliou has come a far way in proving it during this last ten years. It is proven as far as I'm concerned.

For the most part, gluten sensitivity is thought to be for life. If you stop eating it for long enough, the immune system may calm down and you may be able to tolerate it again for a while...but it will generally catch up with you again.... although it might even take years. That is ABSOLUTELY TRUE in Celiac Disease. There is no question that gluten is out of your diet for life in those who have a Celiac Diagnosis.

However, I do personally believe it might be possible that some gluten sensitivity might be secondary to another condition. For example, if your gut is badly damaged from an h. pyloria infection, parasites, or yeast overgrowth~ that can lead to secondary gluten sensitivity. Sometimes, if you clear those problems and heal the gut, perhaps gluten could reenter your diet. Most people I hang out with, though, would never take that chance.... simply because the risk is to great for recurrence. What if something goes wrong in your gut again? And what if the gluten sensitivity was actually the primary problem and directly responsible for the initial gut damage, and poor nutritional status and poor gut health is why you succumbed to h. pylori infection or yeast overgrowth... something a healthy strong immune system would fight off on its own.

These are just my thoughts... that come from many circular discussions we've had trying to figure this all out. My family doesn't have Celiac Disease (or Parkinson's Disease), but we do have family history of autoimmune diseases (thyroid, pernicious anemia, diabetes) and gluten sensitivity, and we've had a wide variety of neurological problems.

I personally believe anyone with any neurological disease of unknown cause should look closely at nutritional status, potential food sensitivities, and the immune system. Goes true for those with any autoimmune disease.

I pulled these references out of The Gluten File as I thought they might be of interest, especially when talking about whether gluten sensitivity might be secondary to another condition...especially the last one.
Quote:

"Oxidative stress plays an important role in inflammatory process of celiac disease.....
Lycopene, quercetin and tyrosol inhibited all these effects. The results here reported suggest that these compounds may represent non toxic agents for the control of pro-inflammatory genes involved in celiac disease."
Lycopene, quercetin and tyrosol prevent macrophage activation induced by gliadin and IFN-gamma.
PMID: 17477920 April 2006

"Autoimmune states can be induced by food sensitivities that cause intestinal gut permeability and complicate leaky gut syndrome (Kitts et al. 1997)." Oxidative stress and autoimmune problems by LEF LEF

"We've had many patients who were extremely sensitive to dairy and wheat.... and did marvelously after the CF/GF diet. Many of these same patients completely lost their sensitivity to casein and gluten after the antioxidant supplementation..... and now can eat a normal diet without a problem. (Aug 21, 2003) " [NOT Celiac Disease...jcc.. please read in entirety.]

There is testing available for gluten sensitivity, but I don't want to get into that now (gone on too long already) except to say you can test negative for IgE wheat allergy and test negative for Celiac Disease... and still have a big problem with gluten. There is a page on diagnostic testing in The Gluten File, and a page on Food Allergy that lists labs that do IgG food allergy testing... also of great debate in the medical community...for anyone interested in pursuing testing.

Cara

Heidi L 09-28-2007 10:50 PM

Hi Everyone, this is Heidi, the author of the paper. I just had to jump in here because I think I can add some context.


Greg: here's a quick summary of my hypothesis:
The DQB1*0602 gene which is strongly linked to narcolepsy and PD is also linked to gluten sensitivity, an autoimmune reaction to wheat and other grains. Gluten intolerance usually causes intestinal damage and gastrological symptoms, but this version is often intestinally asymptomatic. A new study shows that the gluten antibodies (antigliadin) can bind to tissues in the brain. There they attach to a protein inside the neurons called Synapsin I. The function of Synapsin I is to hold the neurotransmitter inside the cell until it is stimulated. When the antigliadin is attached to the Synapsin, it cannot release the neurotransmitter. Not only does this cause a loss of neurological function, it is responsible for a buildup of another protein, alpha-synuclein, forming Lewy bodies and causing cell death.

Basically, I believe gluten antibodies are clogging up your brain. And you do not need to have any other celiac symptoms for this to happen. Unfortunately I cannot say what the benefits of the diet may be for PD sufferers. You may only arrest further progression. There is usually already massive cell loss by the time PD symptoms are apparent. I am elated to hear of your good results though, Ibken.

HurtsoBad- puhleez try the diet. You list so many symptoms that I know are related but cannot prove!

Heidi L 09-29-2007 12:31 PM

Oh dear, I totally forgot to mention that my father has PD.

I take after him in almost every way, and when I got my narcolepsy diagnosis (July) I was sure there is some connection. He's the reason I found the genetic data linked to gluten which fueled my research.
Unfortunately he's a stubborn old man and hasn't tried the diet despite the fact it changed my life. I have had narcolepsy symptoms for 40 years, and was slipping into dementia. After 3 weeks gluten-free my cognitive symptoms reversed completely and my acute narcoleptic symptoms disappeared. I'm sure my hypothalamus has a big hole in it and I'm missing a bunch of dopamine cells too, but I can think and I'm not falling asleep uncontrollably anymore. I'll probably never be perky, but it's a remarkable improvement.

GregD 09-29-2007 09:03 PM

Thanks for the explanation Heidi. This does make as much sense as anything else I've heard. It would also be easy for the average PWP to test to see if gluten is a problem. Simply go on a gluten-free diet for a few weeks.
I still need to sit down and read about gluten sensitivity and Celiac Disease.

GregD

jccgf 09-30-2007 01:49 PM

There may be some overlap with other articles being mentioned here, but these are ones I have found that might be of interest. None of these provide any direct connection to Parkinson's Disease. And, I don't know enough about PD to even know which ones might be most relevant.

What this does show is that gluten sensitivity is responsible for wide ranging and severe neurological problems, there is evidence of autoimmune mechanisms, and this area of exploration is in its infancy....and new connections are being made every day.

The first article that Dr. Hadjivassiliou wrote on the subject was written just a decade ago... in 1996. My daughter was born in 1996. Based upon his research, my daughter has been gluten free since 2001. She did have a positive antigliadin IgG blood test , but that was discounted as meaningless by the GI doctor. We took a leap of faith when we embarked on a gluten free diet, based mostly on a couple of articles of Dr. H. She had neurological, gastrointestinal and skin symptoms...that have all resolved on a strict gluten free diet. She is mostly casein free as well as that causes her GI symptoms. Only gluten seemed to cause the neurological symptoms in her, but I've heard many accounts of casein sensitivity being involved in neurological symptoms. Gluten ataxia is just now be accepted into mainstream medicine~ ten years later. And, it doesn't stop there.

Does cryptic gluten sensitivity play a part in neurological illness? Feb 1996
They actually included Parkinson's disease patients in this one, and did not find any big correlation. No correlation was found with MS in this study either, yet I've known many diagnosed with MS who have "lost" their MS diagnosis while on various combinations of gluten free, casein free, and legume free diets. It might also be a matter of diagnostic confusion as there can be a lot of symptom overlap, and an absence of absolutely definitive diagnostic criteria in many conditions.

Other articles of possible interest....

Dietary treatment of gluten neuropathy, Sept 2006

Autoantibody targeting of brain and intestinal transglutaminase in gluten ataxia, Feb 2006

Cerebellar abnormalities on proton MR spectroscopy in gluten ataxia, July 2005
- free full text

Choreic syndrome and coeliac disease: a hitherto unrecognised association, Apr 2004

Dietary treatment of gluten ataxia. Sept 2003


Celiac disease presenting with motor neuropathy: Effect of gluten free-diet
.

Cognitive impairment and celiac disease.

Anti-ganglioside antibodies in coeliac disease with neurological disorders.

Neuromuscular disorder as a presenting feature of coeliac disease. Dec 1997 -

Immune cross-reactivity in celiac disease: anti-gliadin antibodies bind to neuronal synapsin I.

Symptomatic myoclonus.

Myopathy associated with gluten sensitivity.

Paroxysmal nonkinesigenic dystonia and celiac disease.

Celiac disease can be associated with severe neurological symptoms

Atypical neurological involvement associated with celiac disease.

Sporadic cerebellar ataxia associated with gluten sensitivity.

Choreic syndrome and coeliac disease: A hitherto unrecognised association.

Gait and Balance Dysfunction in Adults.

Cortical myoclonus and cerebellar pathology.

jccgf 09-30-2007 02:46 PM

Length of Dietary Trials
 
A dietary trial of 3 to preferably 6 months is the general recommendation for gastrointestinal symptoms. Even then, some people don't improve significantly until past a year, and sometimes other things need to be addressed (like additional food intolerances, nutritional deficiencies, co-existing h. pylori, etc). It can be a long process, addressing issue after issue. We saw signs of improvement in my daughter within the first two weeks.

When it comes to neurological symptoms, such as gluten ataxia, at least a year is recommended by Dr. Hadjivassiliou. (I know... that may be a lot to commit to on a whim... which is why testing for antigliadin IgG antibodies may be worth doing. A positive result may help one to commit.) Some people do show quicker response, but it could even take as long as two years to show improvement (in gluten ataxia), per what I've read from Dr. H's papers. A lot depends on whether intervention is early or late~ and whether there is existing damage that is beyond repair.

I should also add that many people who have had negative blood work, but move onto a dietary trial anyway, do improve on a gluten free diet. So, a negative antigliadin antibody test does completely rule out gluten sensitivity. It might be surprising to know that 20% of those with a biopsy proven diagnosis of celiac disease are blood antibody negative (anti-tTG), and diagnosed by biopsy rather than blood test results. A brain biopsy is a little too invasive for routine application in a living patient. Logic would follow that some neurological disease related to gluten could also be blood antibody negative.

There are obviously a lot of unknowns, but for those willing to go out on a limb and give it a try, it is a completely safe thing to do. It does need to be 100%, though, and that takes doing some homework. Thankfully, there are gluten sensitivity forums all over the Internet with people willing to help. There is one here at NeuroTalk. Occasional lapses, or even a steady source of an unknown cross contamination, could render the trial useless.

And... because we are dealing in the unknown... one might also consider removing casein and give consideration to other food sensitivities. I know this probably all sounds like a big stretch (and it is!), but over the last years I've met people with epilepsy, MS, Sjogren's, debilitating depression, fibromyalgia and many other conditions that have improved remarkably with dietary changes (often just gluten, but sometimes a number of foods). I've heard of white matter lesions resolving, antibody levels returning to normal, etc. When operating outside of the context of "celiac disease" (with the exception of gluten ataxia which is now well accepted), it is still largely an experimental proposition, but one that sometimes pays off~

The idea that food sensitivity may be a trigger for other autoimmune diseases is actively being researched. It isn't quite as out there as it may seem. Here is just one example:
Putting the pieces of the puzzle together - a series of hypotheses on the etiology and pathogenesis of type 1 diabetes.

lou_lou 09-30-2007 03:00 PM

thank you jccglutenfree and heidi~
 
My sister has Multiple Sclerosis, and I have been wondering about gluten
and low blood sugar levels, as I have hypoglycemia as well as diagnosis
of PD...
I want neither of these and have been illiminating many things from my diet,
thank you for the wonderful research and information... :)

jccgf 09-30-2007 03:14 PM

You're welcome! It is always nice when it is well received~ given the unproven aspect of whether it might be applicable in other conditions as well. It takes a 'wondering' mind~

Do you know of the Direct-MS site? They have some great information about diet and autoimmune disease. Here is some other MS related info~ that may be relevant for your sister/family.

I think I have seen some things on hypoglycemia and gluten... a lot gets blurred over the years. I'll check with others, and post back if I find anything.

Cara

Heidi L 10-02-2007 09:33 PM

I found an article about Parkinson's and diet. Apparently an Atkins-like diet reduces symptoms. I believe this is due to the gluten restriction, not the ketogenic effect. Similar results have been found with Narcolepsy.

Article about study:
Ketone diet could help in Parkinson's
http://findarticles.com/p/articles/m...7/ai_n13595718

Study abstract:
Treatment of Parkinson disease with diet-induced hyperketonemia
http://www.neurology.org/cgi/content/abstract/64/4/728

Heidi L 10-02-2007 09:40 PM

Tena, have you been tested for hypoglycemia? Many people mistake the uncontrollable sleep symptoms of narcolepsy for low blood sugar....

just thinkin.

jccgf 10-08-2007 10:11 AM

Goiter Belt?
 
I just read in the Goiter belt thread that many with PD also have thyroid disease. Do you know if there is actually a higher prevalence of thyroid disease in those with PD than in the general population? If so, it might be one more reason to consider gluten.

Anyone with Hashimoto's thyroiditis (Hashimoto's thyroid disease is autoimmune, and I think something like 95% of all hypothyroidism is Hashimoto's)... might want to take a closer look for gluten sensitivity... on the basis that there is also an increased association of thyroid disease and celiac disease. (Grave's disease, too.)

There is some newer researcher that suggests gluten sensitivity (and maybe casein sensitivity) may actually be a trigger for developing autoimmune thyroid disease and some other autoimmune diseases. Intestinal permeability is involved in this theory.
Quote:

There is, however, growing evidence that the loss of the intestinal barrier function typical of celiac disease could be responsible of the onset of other autoimmune disease. This concept implies that the autoimmune response can be theoretically stopped and perhaps reversed if the interplay between autoimmune predisposing genes and trigger(s) is prevented or eliminated by a prompt diagnosis and treatment.
Systemic autoimmune disorders in celiac disease.
PMID: 17053448 Nov 2006 Full text on Medscape

When the finely tuned trafficking of macromolecules is dysregulated in genetically susceptible individuals, both intestinal and extraintestinal autoimmune disorders can occur. This new paradigm subverts traditional theories underlying the development of autoimmunity, which are based on molecular mimicry and/or the bystander effect, and suggests that the autoimmune process can be arrested if the interplay between genes and environmental triggers is prevented by re-establishing intestinal barrier function.
Mechanisms of disease: the role of intestinal barrier function in the pathogenesis of gastrointestinal autoimmune diseases. PMID: 16265432 Sept 2005

Quote:

From:
Emerging concepts in celiac disease by William Treem, MD
"The association of CD with autoimmune diseases, particularly Type 1 diabetes and autoimmune thyroid disease, has been widely reported with some investigators finding a ten-fold increase in patients with CD compared with the general population [68,69].Less clear is the link between CD and Sjögren syndrome, primary biliary cirrhosis, Addison disease, autoimmune chronic active hepatitis, cardiomyopathy, and peripheral neuropathy (not due to B-12 or vitamin E deficiency) [70–73•,74•].
When both CD and autoimmune disease occur in a patient, CD is most often silent.The autoimmune disease is diagnosed first with the diagnosis of CD the result of serologic screening in this high-risk population.
The question whether the early diagnosis and treatment of CD reduces the risk of developing other autoimmune diseases is still open to debate.There are several lines of evidence that support the notion that CD is a causative factor in the development of other autoimmune diseases. A recent study suggests that the prevalence of autoimmune diseases is closely related to the duration of gluten exposure and the age of initiation of a GFD with children diagnosed and treated before 2 years of age having little subsequent increased risk [75].Older children diagnosed with CD have a higher than expected frequency of organ-specific autoantibodies that tend to disappear after starting a GFD.Anecdotal reports suggest that socalled "celiac neuropathy", IgA nephropathy, juvenile rheumatoid arthritis, and autoimmune myocarditis will all improve when patients who have underlying CD are maintained on a strict GFD [73•,74•,76,77]. "

Quote:

In a 1999 study, Ventura, et.al. found
that those diagnosed with celiac disease
between 2-4 years of age had a 10.5%
chance of developing an autoimmune
disorder.

Additional findings based on age at diagnosis
and chance of developing an
autoimmune condition are:
4 – 12 yrs of age 16.7%
12 – 20 yrs of age 27%
Over 20 yrs of age 34%
Since gluten sensitivity can cause neurological disease even without celiac disease it is important to have all the tests run, especially the antigliadin antibodies which are often left out of celiac disease screening. There is more about testing in The Gluten File - Diagnostic Testing page.

If caught early enough, sometimes the thyroid antibodies have actually come down... and the thyroid disease reversible. This is not the norm as gluten sensitivity needs to be uncovered at the very onset of thyroid disease, before permanent damage has been done... but there are some isolated reports of thyroid disease remitting on a gluten free diet. This research is all relatively new, and ongoing.

http://thyroid.about.com/cs/latestresearch/a/celiac.htm


Quote:

Antibody screening for coeliac disease should be included in the work-up of patients with autoimmune thyroiditis
Coeliac disease in patients with autoimmune thyroiditis
. PMID: 11549838

The greater frequency of thyroid disease among celiac disease patients justifies a thyroid functional assessment. In distinct cases, gluten withdrawal may single-handedly reverse the abnormality.
Prevalence of thyroid disorders in untreated adult celiac disease patients and effect of gluten withdrawal: an Italian multicenter study
. PMID: 11280546

On gluten-free diet an excellent clinical and histological response was recorded with an improvement of hypothyroidism and reduction of the thyroxine dosage. Our data suggest a significant high prevalence (3.3%) of CD in patients with ATD, in particular with Hashimoto's thyroiditis.
Prevalence of coeliac disease in patients with thyroid autoimmunity
. PMID: 10461017

These results show that the prevalence of coeliac disease in patients with autoimmune thyroid diseases is significantly increased when compared with the general. We suggest a serological screening for coeliac disease in all patients with autoimmune thyroid disease measuring anti-endomysial antibodies, considering that early detection and treatment of coeliac disease are effective in preventing its complications.
Prevalence and early diagnosis of coeliac disease in autoimmune thyroid disorders
.PMID: 10425571

After 18 months on gluten-free diet, the anti-thyroid antibodies titre decreased significantly, and we could discontinue thyroid substitutive therapy.
Unusual association of thyroiditis, Addison's disease, ovarian failure and celiac disease in a young woman
. PMID: 10401714

Moreover, untreated patients with celiac disease have been found to have a higher than expected prevalence of organ-specific autoantibodies. In a prospective study of 90 patients with celiac disease, we found that the prevalence of diabetes and thyroid-related serum antibodies was 11.1% and 14.4%, respectively. Like antiendomysium autoantibodies, these organ-specific antibodies seem to be gluten-dependent and tend to disappear during a gluten-free diet.
Gluten-dependent diabetes-related and thyroid-related autoantibodies in patients with celiac disease
. PMID: 10931424

A significant proportion of patients with Hashimoto's thyroiditis present signs of 'potential' CD and of activated mucosal T cell immunity. The gluten dependence of such findings remains to be ascertained.
Markers of potential coeliac disease in patients with Hashimoto's thyroiditis
. PMID: 11916614

buckeye 10-09-2007 04:52 PM

PD and Celiac connection
 
I find it interesting that at the same time today I am reading about the possible connection between Parkinson's and Celiac Disease (gluten sensitivity) I also read about a forum at which doctor's were going to be discussing the fact that people from the Midwest are 5 times more likely to develop Parkinson's disease than others. While most believe this to be the result of exposure to pesticides, those exposed to pesticides only have a 3 times greater chance of getting Parkinson's than others. What is grown in the Midwest and therefore probably a greater percentage of a Midwestern's diet? Wheat, barley, rye, and dairy?

Heidi L 10-09-2007 09:48 PM

I think it's a combination, pesticide exposure has been shown to degrade the blood brain barrier which would allow gluten sensitive people to develop PD. It would also allow a greater influx of chemicals which themselves target and destroy the basal ganglia.

jccgf 10-09-2007 09:57 PM

I live in the Midwest (near Chicago) and know our air quality is always pretty bad.

I googled "health risks midwest US" and got a few hits... who knows what our environmental exposures are:

Mercury
http://www.uwsp.edu/geo/courses/geog100/ENS-Mercury.htm

Radon?
http://energy.cr.usgs.gov/radon/rnus.html

Pesticides
http://findarticles.com/p/articles/m...3/ai_n13807334

Just brainstorming a little about what our 'midwest' risks might be~ not so much about how they might affect us.

Heidi L 10-17-2007 01:21 PM

In case y'all are bored, I thought I'd mention I wrote up my experience and posted it on my site.

http://www.lindborglabs.com/AboutHeid.htm

leah52 10-17-2007 02:51 PM

My pwp has suffered from painful muscle rigidity in his back for several years, and we found nothing to give relief. It has been much worse this year. We started on a gluten-free diet about a month ago, for an unrelated reason, and found that his back isn't going into the horrific spasms it has been. It has been about a month now with little back pain... with one exception...

He ate a sandwich on regular bread one afternoon. That night the rigidity/spasms and pain were back. We are staying away from gluten now!

Heidi L 10-17-2007 03:27 PM

Thanks Leah.
I know 3 people with RLS who went into remission on a GF diet and when they cheated it came back the next day.

ZucchiniFlower 10-17-2007 04:22 PM

Heidi, that study had only 5 participants and only 3 followed the diet closely, so the results are not particularly promising to me. 90% of the calories from fat and 2% from carbs rules out alot of veggies, and certainly fruit. Sounds pretty onerous and unthinkable. Placebo effect is strong in PD. The 2 who didn't follow the diet closely had the same improvements as the ones who did.

Also, beware of unintended consequences. That diet might increase cancer.

Heidi L 10-17-2007 05:18 PM

I'm not recommending a ketogenic diet. I was on one for many years. As with the study results, it helped, but my symptoms still progressed. I believe this is because it restricts gluten but does not eliminate it.

A gluten free diet eliminates wheat, barley and rye products, not carbohydrates in general.
Fruits and veggies are totally legal. As are potatoes, corn, and rice. As a matter of fact, sugar is too!

I'm sorry if that wasn't clear.


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