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!

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.

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

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.

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.

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...

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

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

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

just thinkin.

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.
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