Wednesday, November 4, 2009

Gluten-free and my PD at Three Months

Parkinson's disease seems to open itself to a low-gluten diet

Back in July, 3 months ago, after my wife and I had done a lot of reading about Celiac Disease, I decided to try a diet without gluten for at least three months.   I hoped it would help me with some of the  Parkinson's symptoms I was suffering: sleep problems, constipation, tremor, urinary frequency, ED and stiffness/rigidity (especially getting in and out of the car. Getting dressed and undressed was also becoming an increasing problem.

I know that I should have gotten tested to see if I actually have Celiac Disease before starting the diet, but I read anecdotal reports from other PWPs who tried the diet without being DX'd and saw a reduction of their symptoms.  I really don't think that I have Celiac Disease but I might have enough intolerance to be helped.
My wife has made some wonderful no gluten meals and is very careful to balance flavors so that they often seem to be better tasting than full gluten meals. So staying on the diet hasn't been a problem for me, but it will be when I have to travel?  As long as someone still makes re-fried beans it won't be.  Do you know that you can make salsa using cider or rice vinegar?  My wife promises to come up with a great gluten-free stuffing to go with the turkey breast so that I'll have something for which to be thankful.

RESULTS after 3 Months: 
  • Sleep problems reduced. Now I only wake up to urinate 2 or 3 times a night
  • Constipation Is gone and I'm regular as I'm going to be with PD
  • Tremor hasn't lessened or stopped           
  • Urinary Frequency seems to be worse.  I had hoped for assistance from the dietary change but it did not happen. But there is good news,  my urinary frequency is helped by nettle root and the pumpkin seed oil I'm taking for ED.  It's better for my confidence if I wear Depends when I am at the gym to exercise or traveling, although I don't actually seem to need them as much as I need to be free of worry.
  • Erectile Dysfunction feels slightly better. ED seems to be helped by pumpkin seed oil and pycnogenol.
  • I'm still having problems with Flexibility - arthritis doesn't help and neither did cutting back on the weekly massages but at least the problems aren't worse...they just feel that way because I still have them. I'm trying to reduce my stiffness by doing stretching exercises at the gym and at home. The stiffness reduces my range of motion and makes normal actions more difficult.  
I intend to continue with our low-to-no gluten diet to see if it can bring more improvement to my health.  Most of us want to make that magic change and see all of the symptoms vanish and it is frustrating when they don't.  But there is always something else around the corner.


  1. Hi again. It's me, the celiac checking in on you. I'm recovering from my own health issues, and along the way have learned a few more things I thought I'd share.

    I went to a holistic MD/ND who gave me a urine neurotransmitter test which indicated I had high glutamates (amongst other things, but that one stuck out after I researched). The doc told me to not have MSG ... hmm, I don't touch the stuff as a rule. I researched and found that wheat, dairy, and lots of other foods have glutamates. I'm gluten-free/grain-free, so that wasn't it; it was dairy (my comfort food after gluten!), maybe nuts. So you understand where I'm coming from: I am trying to recover from fibromyalgia. I had overall body-wide pain before I was dx w/CD which subsequently got 75-80% better on a gluten-free diet and taking supplements (Vit D, B-complex, iron, fish oil, others). It took me 2 more years to find an article and hear naturopaths at conferences to try dairy free. Before I did I had a heart attack after I tried to jog in my first 5k. I've had heart palpitations for 20 yrs, and after the heart attack I decided to try dairy free (too much calcium can land in your arteries because of mineral imbalance). It was very difficult because I was addicted. But, like going gluten-free, I persevered. In four days my brain was better and I wasn't depressed. Mind you, I'd been VERY depressed my whole life and got tremendously better gluten-free, so this was a surprise I had more healing to do! I can SEE that NOW, hindsight being 20/20. My kicker moment was reading how glutamates are implicated in Huntington's, Alzheimer's (my dad has that and is the one who taught me to be an avid bread and milk girl! - he's also alcoholic which wrecks the gut/brain), ALS, and even Parkinson's.


  2. cont.

    I tell you all this to ask you to consider changing up your diet some more: really look into or or read Robb Wolf's blog/book (try library. It's a new book), or google "Mark's Daily Apple" to learn about the "whys." The crux is: no grains, no dairy, no legumes, and also for me no additives, no caffeine, no alcohol, no nightshades: potatoes, tomatoes, peppers or its derivates, ie cayenne, hot sauce,etc), goji, eggplant. For example, nightshades have a substance in them used in pesticides to stun muscles of insects. Going nightshade free might help your stiffness if this is related to arthritis.

    After I went dairy free, I had relief from my muscle pains in my legs which were preventing my being as active as I'd have liked. I'd seen so many doctors for this hams/quad pain ... so dairy free really helped me.

    Also, you are right about first getting checked for celiac, but what's done is done unless you want to go back to eating it for four months (equiv of 3-4 slices of bread/gluten a day). Some people can't stand to do it. Then again, I've read celiacs eating gluten for 11 yrs without symptoms and wondering why they came back (once you're a celiac, you're always a celiac and now they've upped their chances for cancer many-fold). Another way to think of your gut/mind health is via a leaky gut. People on the autism spectrum often have one and may or may not be celiac - and gluten-free, casein-free diets still helps as PART of their complicated and individual treatment.

    Here are some links:

    Neurotransmitter tests:
    Neuro Excitotoxicity article:
    Truth in Labeling Neuro-MSG article:
    Glutamate Foods List:
    Leaky Gut Test info:
    (I had a test, and I'm STILL a bit leaky after 4 yrs gluten-free ... hoping dairy free, legume-free or a strict PALEO diet will help.)

    Also, I wish I had more, but thought you would appreciate hearing about a man w/Parkinson's I met at a dinner. He was seeking a little known treatment discovered by a cardiologist in AR. This now deceased doc treated cardiac patients with compression sleeves on legs (maybe arms, too, not sure) to increase circulation to the heart/brain ... the Parkinson's patients' symptoms got better. This particular man's voice was going away, but resolved with this tx.

    I continue to think about you, and pray for your recovery.

  3. cont. again :)

    Forgot one more link:

    Nightshades info:

  4. This comment has been removed by the author.

  5. The Nightshade family has been targeted for decades as a cautionary for those with arthritis. Potato, tomato, tomatillo tamarillo, eggplant, paprika, chilli pepper, goji berry are all family members. As is tobacco.

    What we found was that for knee pain relief, weight loss has been the most effective for Steve coupled with a low-gluten diet which also benefits his sleep. Although there are still trace elements of gluten in his diet, the major elimination of wheat gluten seems to have been of value to his comfort level.

    Also of interest is that the tropanes found in belladonna (aka Deadly Nightshade) can actually reverse cholinergic poisoning caused by overexposure to pesticides and nerve agents such as sarin and VX.

    In some cases there may be allergies to members of the nightshade family. This allergy could be to all members or just some. There is no question that food allergies can cause pain. The trick is to determine to which member you are allergic.


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