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Old 04-03-2009, 02:09 AM #1
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Default Gluten & PD

I read about MJF's mysterious loss of symptoms when he visited a high altitude place, Bhutan in the Himalayas. All sorts of explanations have been given, but here is an interesting one.
In
http://www.celiac.com/blogs/128/Is-t...c-Disease.html
it is suggested that the reason is the gluten free diet in that part of the world. I have seen other pointers to we PWP being intolerant to gluten, and it would explain our mysterious ups and downs.
Ron

At this point, Michael's symptoms are very noticeable and greatly affect the day-to-day activities of his life. Toward the end of the segment, he related that many of his symptoms "mysteriously disappeared" on a recent trip to the Himalayan kingdom of Bhutan. Dr. Mahmet Oz, Oprah's frequent medical spokesman, was also a guest on the show, and was tossing out ideas of why this might be, everything from "they eat a lot of chili's" to the benefits of high altitude, or on medications that Michael took to help with adapting to the altitude. But, I grew very excited by the prospect that Michael J. Fox's improvement was a response to, however accidental, a gluten-free diet! Because, I knew from personal experience that the diet in this part of Asia is largely based on daily consumption of dhalbhat, or rice and dahl (small yellow lentils). Fresh vegetables are rare at high altitudes, but the diet is supplemented by occasional meat, except in some strict Bhuddist or Hindu areas. In 1980 I lived in a neighboring small kingdom of Nepal, and ate almost exclusively a diet of rice, dhal, some vegetables, and occasional sheep or goat meat. Dates, peanut butter, and raisins rounded out our diet, washed down with copious amounts of chai tea, made with black tea and canned evaporated milk. Granted that I also was exercising vigorously much of the time, but looking back, this was when I was at the healthiest, strongest, and most vital in my entire life. Unbeknownst to me, my travels had excluded gluten from my diet for nearly six months. Upon my return to the U.S., and binging on all my favorite gluten-laden foods, I suffered severe intestinal distress, lasting nearly two years. Of course, at the time, both my doctors and I attributed all of my gastrointestinal symptoms to parasites, bacterial infections, and other health problems common to returning travelers. It was decades later that I was diagnosed with a gluten problem, and finally began to recover my health. So, back to the possibility of excluding gluten from the diet having a beneficial effect on Parkinson's, or a possible link between Parkinson's and celiac disease or gluten intolerance,
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Old 04-03-2009, 07:28 AM #2
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Default a note to mjff

Would it not make sense to round up a half-dozen pwp and send them to retrace Michael's steps?
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Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 04-03-2009, 09:20 PM #3
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Ron, that's fascinating. I know gluten causes gas. I saw a nutritionist once and she told me bagels cause gas because of the high gluten flour. I'm going to try to avoid gluten for a week and see what happens. I'll wait til today's bagel nosh is out of my system.

Thanks for great detective work regarding your personal discoveries. Makes a lot of sense to me.
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Old 04-04-2009, 02:27 AM #4
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Default Gluten free diet

Hi Zuchini,
Apparently, you must ensure you remove all traces of gluten, it is all or nothing. I thought I could simply try reducing my high gluten foods, but no such luck. See the information I got from a celiac site.
Ron

Unfortunately, there is no such thing as a low gluten diet. Because the gluten reaction is autoimmune based, it's an all or nothing proposition. You can find information on the gluten free diet and on Celiac disease and non-Celiac gluten intolerance on my website www.glutenfreechoice.com (see the tab on celiac disease and gluten intolerance), and on Scott Adams site www.celiac.com.


Gluten is found in wheat, barley, and rye, and oats can be cross-contaminated with gluten in processing. Spelt, and alternative grain, also contains gluten, but rice, wild rice, buckwheat, quinoa, millet, sorghum, amaranth, and corn do not contain gluten and are safe to eat. One of the easiest strategies is to base your diet on protein, vegetables, fruit, and tubers like potatoes, beets, sweet potatoes, yams, etc. for starch. I like to include some winter squashes too.


When eliminating gluten, it's easy to substitute brown rice pastas like Tinkyada or DeBolle's brand for wheat (semolina) pasta, and to buy gluten-free bread (in the refrigerated section), and to avoid other baked goods. There are many gluten-free brands of cookies and cereal, and you can request a tour of the gluten-free products in your natural foods grocery store. What is more difficult is avoiding the hidden forms of gluten like modified food starch etc. in soups, packaged foods, and condiments
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Old 04-08-2009, 01:34 AM #5
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Default Bhutan diet

I met up with a man born in India who has PD yesterday. I mentioned the MJF story, and this man said he had lived in Bhutan, and the diet was anything but gluten free!!! He said they ate chiptees etc full of gluten.
Girija, perhaps you may know whether the area is one with a gluten free diet?
Zuchini, how is the diet doing?
Ron
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Old 04-08-2009, 04:45 AM #6
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Originally Posted by ZucchiniFlower View Post
Ron, that's fascinating. I know gluten causes gas. I saw a nutritionist once and she told me bagels cause gas because of the high gluten flour. I'm going to try to avoid gluten for a week and see what happens. I'll wait til today's bagel nosh is out of my system.

Thanks for great detective work regarding your personal discoveries. Makes a lot of sense to me.
Boy does it!

I don't eat much bread or grain type of carbs. Just has never been a favorite of mine. I do bake with whole grains, cakes, cookies...pies, just not bread. Not a sandwich eater.

Last week my daughter wanted pizza. They were small thin crust pizza's. I ate 4 slices.

An hour later you would have thought I was 9 months pregnant. I'm not a big person, so this was super noticable. My husband asked when I was due.

But it was painful gas.

If you decide to be tested for gluten intolerance, you can't have been on a gluten free diet. You need to be eating what you normally do. I'm thinking of getting tested.
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Old 04-09-2009, 07:17 AM #7
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Ron, I haven't started the diet yet. I need to go food shopping first.
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Old 04-09-2009, 04:35 PM #8
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The incidence of gluten intolerance has changed from 1:3000 to 1:150 to now 1:50.

Over the years reading and posting on gluten boards, I have seen many people with neuro issues improve on the diet.
There is a very interesting study from 1999 showing that NSAIDs, that block Cox-2 enzymes in the gut contribute to developing gluten intolerance. Since NSAIDs went OTC , the incidence of gluten intolerance has increased tremendously.
The Cox-2 inflammatory enzymes, block the absorption of things from the GI tract that are in food. It is a very interesting connection IMO. So if this turns out to be a big factor, many without the genetics, may have acquired a gluten intolerance. The data keeps coming in on this subject...so I think it should be considered, carefully.

Another intolerance is FRUCTOSE! I just discovered that this is what was bothering me, instead of gluten. (this past summer).

The GI gas, was so bad, finally, and no tests were showing disease (no gall bladder or other GI lesions) I just stopped eating all together! When I had a Gatorade a couple of days later I got so sick... again! This was triggered by a Hershey's product high in Sorbitol. While I was angry at the time, at least now I know now what fructose does to me!

Jellies, many foods, have high fructose corn syrup. Many fruits are very high in fructose. Apples and pears are at the top of the list. I have found this winter I can have ONE orange daily and stay normal. ButI do not drink any juices anymore. I can only have a bit of chocolate now and then... it has sucrose in it. I use no sugar in my tea. Honey is a nightmare for me. I used to put it in my tea...and suffer a couple of hours later. I don't miss the sugar anymore, and take Vit C separately.
I did some research... fructose intolerance can be as high as 1:3 !
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Old 04-09-2009, 10:07 PM #9
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There is a very interesting study from 1999 showing that NSAIDs, that block Cox-2 enzymes in the gut contribute to developing gluten intolerance. Since NSAIDs went OTC , the incidence of gluten intolerance has increased tremendously.
Mrs. D, I wasn't aware of this. I take a strong NSAID that blocks COX-2. I have much too much gas. I was blaming misoprostol. I can't stop taking the NSAID; I can't function without it. I'll try changing my diet.

Thanks.
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Old 04-10-2009, 01:24 AM #10
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Default Gluten in diet

Mrs D,
I eat almost everything you advise against!!
I have sugar in my tea, on my cereals, etc.
I have a bar of chocolate each night, (I am underweight & I can't put weight on).
I take a spoonful of Manuka honey every day,
I drink a lot of fruit juice, to increase my fluid intake,
I think like you, I am going to have to give up eating altogether!! Life is complicated enough with meds and supplements, now I must alter all my eating habits!!
What does the test for gluten intolerence involve? I wonder whether there are any statistics on the incidence of gluten intolerence amongst PWP compared to the general population?
Ron
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