Monday, July 27, 2009

My Parkinson's Experience with a Gluten-Free Diet - part 2

My Low/No-Gluten Diet for PD

Two weeks ago I started a low/no-gluten diet with the intention of testing it for at least 3 months to provide enough time to see if it helped relieve Parkinson's symptoms or not. Already I'm seeing changes. And I'm not the only one who has noticed some improvement, both my wife and my massage therapist have also seen changes.

Even though it hasn't been very long, I am happy to report that I've noticed a decrease in urinary frequency. Although it was being partly controlled by the saw palmetto and pumpkin seed oil blend and nettles I was taking, I still had issues and felt limited in places I could visit and things I could do. Now I take less when I get up in the mornings and get better results. I also think I can feel when I need to go better.

Sexually there has been a slight improvement in my response. I can feel more. There's a lot to be said for being in contact with those nerve endings.

My body is not as stiff and rigid which means that I can get in and out of the tub shower more easily, since my leg has relaxed a bit. The massage therapist noticed a greater range of motion, less overall rigidity and the ability to get muscles to release, . something which has been a real problem in my neck, shoulders and leg.

I've been sleeping better since I started the low/no-gluten diet. Last night I went to bed at midnight, slept till 5:30 am, back to sleep easily until 7:30 am when I got up for the day. That was better than I have done for a long time. My wife insists that I need to take an occasional nap which is something that I used to do when I first was diagnosed.

Staying on the low-no-gluten diet has been easier than I thought it would be. I've eaten rice, ground chicken as hamburger, buckwheat pancakes, no-gluten pretzels, waffles. I've had plain ground turkey as sausage which my wife seasons and potato chips, cheese, yogurt and ice cream. So there are lots of things to eat. Of course I'm very lucky that my wife likes to cook and is very good at getting me to take my pills and eat the right things. She's just switching out ingredients to try to make the changes feel normal.

We shopped at Whole Foods Market where they have a very big selection of Gluten Free foods. They have shelf tags which identify all the gluten-free products they carry. Saves a lot of time for gluten free customers. Just follow the green tags up and down the aisles. We'll be adding brown rice noodles and pasta which we haven't had in a long time.

I've notice one problem with the diet thus far. We hadn't considered that the primary use of white rice flour could contribute to constipation. As soon as I noticed the issue - not hard to overlook - I explained to my wife who reconsidered what I was eating and realized that it was an easy fix. White rice is low in fiber and white rice flour has almost none. So within an hour we added fruits with high fiber content, brown rice, beans - I especially like refried beans - sweet potatoes, natural applesauce and plenty of drinking water all help to ease the problem.

Understand that I appreciate fruit but never cared to eat it that often. Change of plans and now I do.

We're calling this a low/no-gluten diet because I don't have celiac's disease but I may have some gluten intolerance. Because of that we are being careful but we know that on occasion something will accidentally slip past us and occasionally I might backslide...not yet but we're trying to be realistic.

So I feel this was a positive start for my diet although it will be a few months before I see the results. I'll post again next then I will have had the chocolate chip cookies and the bread.
The cookies and bread turned out to be delicious, tasted even better than full-gluten bakery.


  1. Hello. I have celiac and I think gf diet could save the world - lol. I have a friend of a friend with Parkinson's and I've recommended gf diet to them. I usually get a blank stare. All I can say is that your gut affects your brain. I'm THRILLED that you are trying this and that you are sharing your story. I will keep up with your progress and hope you continue to feel better.

    Another thought: look at the Paleo diet? No grains ... not sure that's too much of another jump at this point (it took me three years of reading and stubborness before I tried. GF flours are high glycemic and I have 100 pounds to lose). More healthy fats help motility problems - and I see you've got a great bunch of veggies. I haven't read your whole blog (just the few gf entries), but wonder if you've also incorporated fish oils into your regimen.

    Please go 100% gf, not "low" gluten. It DOES matter even when not celiac. JMHO.


  2. I said I would try this diet for 3 months to give it a fair chance. It's been 1.5 months and I haven't noticed any big positive changes, perhaps an increase in general feeling of well being and maybe a little improvement in the G.I. and sexual areas. I haven't had any big symptoms go away....but my wife thinks there is some improvement.
    With PD sometimes what you might hope and what you actually see can be different. Sometimes improvement is actually just little changes.
    Lets see how I am doing after the 3 months.
    The fish oil is there for me to take - sometimes I forget about it. We're going to be looking at hemp seed oil soon. We haven't written about the omegas (3, 6, 9) yet but we will once we get the hemp thing going.
    Thank you for the input and support. Best wishes to you

  3. I am attempting a GF diet of my own and will be interested in your experience. It is difficult to maintain for myself due to eating out for lunch and so I have setbacks that seem to take two to three weeks to recover from. These "slip-ups" seem to trigger an immune response that requires time to settle back down.

    I did, however, have an initial success that gives me great encouragement. Rather than detail it here I will refer you to my own blog that you may find interesting at Sorry, but I couldn't figure out how to insert a direct link.

  4. This is the link which Rick intended to include at his blog, A Matter of Balance - A Dance with Parkinson's
    We've added a link to his website in Our Favorite Blogs in the right column

  5. I can take longer than 3 months for symptoms to improve. At 8 months is when I noticed some huge changes.

  6. In an age where everyone expects Instant, it is often difficult to realize that some change comes slowly. Whether through medication, diet or exercie, some bodies react rapidly in reaction to change while others acheive new balance slowly.
    Congrats Anonymous for being patient enough to give your body a chance to find a healthier homeostasis.

  7. Hi are you taking magnesium? I think this would be extremely beneficial to heal your condition.
    Also take the zinc deficiency taste test. If the zinc has no taste then you are deficient. If it is sweet or furry then you are deficient. If it is repulsive and you never want that in your mouth again, then you are not deficient in it!
    Zinc is needed for your cells.

  8. A zinc taste test was devised by Prof Derek Bryce-Smith of the Biochemistry Dept at Reading University.
    The test uses zinc sulfate in purified water at a ratio of 1 gram per 1 litre water. While it should be stored in the refrigerator, it must sit out for 2 hours before the test. Try not to eat or drink anything during the hour prior to the test because it can influence the test.

    Hold the solution in the mouth for 10 (timed)seconds.
    Grade 1 response: no specific taste = major deficiency
    Grade 2 response: no immediate response but within 10 seconds a dry or metallic taste = moderate deficiency
    Grade 3 response: immediate slight taste which increases = minor deficiency
    Grade 4 response: immediate strong unpleasant taste = no deficiency and no supplement should be taken.
    We would also suggest that zinc supplements not be taken prior to a discussion with your doctor(s)

  9. I beleave a paleodiet with highdose vitamin D, fishoil and coconutoil will have good effects for someone with Parkinsons. Take a look at this story. Its about a doctor who got MS and how she ate herself healthy. Its fantastic. She speaks not only about MS but also about many other deseases.

  10. Although we don't usually publish comments with links, we wanted to write about coconut oil and its value potential in treatment of PD.

    Coconut oil is a medium chain triglyceride which only raises HDL (the good stuff helping serum cholesterol) and is a natural antibiotic.

    We will write more about coconut oil when I open the box that arrived today with the new coconut oil for cooking/baking.

    Pill form is problematic due to the number of pills you'd need to get the minimum suggested amount.

  11. I have to agree with the first poster. There is no such thing as a low gluten diet. Those on a gluten-free diet can occasionally have something with gluten occasionally AFTER their gut has healed, AFTER months and many of these take digestive enzymes with it. I come on both ends of this my father has advanced Parkinson's (that he has had since 2001). My son, 2 1/2, as yet undiagnosed but with sensory issues has had dramatic health benefits in just 3 months from a gluten free/casein free diet. Such that I am considering beginning this diet on my father. My son stopped walking on his toes. Maybe my father would??? My son's language improved, anxiety decreased. Maybe my father's memory would improve and his anxiety would decrease also??? Toxins & low glutathione are mentioned in the literature with both. Why??? Gluten-free is not easy in the beginning. You think you are and then you find out things you didn't know. Like someone put the knife on bread and then back in the peanut butter, so the boy gets his own jar of peanut butter, mayo, etc. Learning whom to trust commercially, etc... I wish you the best, Ginny

  12. I agree with Anonymous. There is no such thing is a low gluten diet. If your gut is inflamed - a crouton is overload. My son has symptoms of a sensory disorder; my father has advanced Parkinson's. In 3 months of Gluten Free/Casein Free he has stopped walking on his toes. Would my father do the same? My son's language and anxiety problems improved. Would my father's memory and anxiety improve too? Why are toxins and low glutathione part of the literature for both? Go 100% then after a few months with some digestive enzymes then you can cheat a little. Make sure no bread crumbs on the knife in your peanut butter jar, mayo, etc. Know that you can't trust some large companies. Kellog's Corn Flakes are not gluten free. Read all ingredients well. A new way of cooking. It gets easier. I think we are going to give it a go with Dad. Best wishes...

  13. My husband was diagnosed with probably PD in 2000. Takes no Parkinson's meds, except Klonopin for serious sleep behavior disorder. Has exercised religiously (jog/walk with ratio changing, but still doing it 2 x pw). PD has advanced slowly. Diagnosed w/ celiac (probably really gluten sensitivity) as a child. "Outgrew" it. Recent biopsy after endoscopy showed no celiac. On very limited diet (including no/low potassium) due to Stage 4 kidney and heart disease. Has been losing weight tho eating lots of pasta. If he cuts out gluten, there will be very little to eat! Very picky eater-only veggies he likes that are OK are green beans, onions, pepper, carrots. People say there's no such thing as a "low gluten" diet; has to be all or nothing. But it seems like cutting back would surely help..............?

    1. I would avoid like the plague having a bulk of your diet compose of wheat flour or other flours.. Vegetables, fruit, grains and meat (fish & game mostly)

  14. For people who MUST be on a gluten-free diet, there is no such thing as a low gluten diet.
    For others, there might be some benefit in a "low-gluten" diet but there are other issues to consider. While Steve felt that the low-gluten diet resulted in better sleep, it also resulted in continued weight loss despite the "normal" variety of foods he was served.
    If your husband is primarily eating pasta, it is most likely made from rice, a food potentially higher in mercury and arsenic than you might want steadily although there are some CA farms producing rice which have "safer" growing soil. Primarily pasta is also a primarily carb diet. If the pasta is made from corn, it is most likely GMO.
    Since your husband appears to have outgrown his Celiac's condition and has other dietary restrictions, why change to something that might or might not help but will possibly cause additional weight loss?
    By low-gluten he meant that we were monitoring condiments but occasionally we'd let one slide because he really liked it. We didn't compromise on soy sauce, for example because there are excellent gluten-free forms. There was no wheat bread or any dessert made with a wheat flour. I didn't make or buy food using any wheat flour product and Steve loved those foods.
    Udi's Bakery makes an excellent gluten-free bagel and those made him very happy. There are many good gluten-free alternatives which are every bit as good as the wheat products we knew as children.
    Although there is some growing thought that PD actually begins in the gut, there is more to learn.
    All things considered and hindsight being much clearer, I'd look at the weight loss issue before looking at a diet which has the potential to cause more. If you can find equivalent caloric substitutes, go for it; your husband appears to no longer be gluten sensitive but this is a matter for his doctors or a nutritionist.

  15. My neurologist recommended I try gf for seizures...I asked if I could just cut back and she said NO, ALL OR NOTHING! I have 0 gi issues from gluten and she still said all or nothing. One "cheat" of gluten stays in your system for 6 months! I was having dizziness, brain fog, depression, and anxiety from my thyroid...went gf and all symptoms are gone and I am now off all seizure meds and so far no seizure. The challenge and cost of gf is sooo worth it to me!

    1. Bravo, HD.
      Good to know you have an open-minded neurologist. We need more of them!


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