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.

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 weekend...by then I will have had the chocolate chip cookies and the bread.

Addendum:
The cookies and bread turned out to be delicious, tasted even better than full-gluten bakery.

Gluten & a Parkinson's Disease Patient - Part I

Gluten Free Me with PD

After 6 years of PD I've come to the point where I realize that if I'm going to make any more progress fighting PD I'm going to need to eliminate or greatly reduce the pain I feel in my knees when I excercise, especially when I walk longer distances. I'm only at a quarter mile, I need to be able to walk a mile or two with little discomfort. Pain is a significant factor in arthritis and, of course, in Parkinson's disease.

Massage takes me part of the way, working out at the gym has taken me where I am now but I have to find a way to make more forward progress and not just hold the status quo. In recent weeks and months I've tried turmeric and nettle but the nettle seems to make me feel dizzy; possibly it lowers my blood pressure. Swimming feels great while I'm doing it, but doesn't seem to have lasting effects although I haven't been in the water as often in the last couple of months.

DynaCirc CR has helped me tremendously but I don't think I can expect it to do more. Getting a forced excercise bike probably could help me but the cost seems out of reach now. My heart condition might prevent me from getting my doctor's approval for forced exercise anyway. On the other hand, my improvement from the process of learning the semi-elliptical recumbent bike is encouraging.

I also have some some urninary tract issues which I wrote about the other day. I've been trying to deal with the UT issues first. I tried saw palmetto and pumpkin seed for my prostate, urinary frequency and sexual problems. That resulted in a slight improvement in my frequency and sexual problems but was not the answer because I had to take more than the doctor had said would be safe to get those results. So I went back to nettle. It gave me better results and I'm still using these supplements but the dizzyness and sense of shaky balance side effect were taking me in the wrong direction.

Marge had been reading about low Gluten diets and sugested I try it for 3 months to see if it helped me. The gluten-free and the low-gluten diets sounded very difficult because you can't eat bread or pasta or any food with just a trace amount of wheat - not even a bagel! But 10 years ago I was a vegetarian and I was able to stick to that diet for a few years until my cardiologist said that my triglycerides had skyrocketed and that I should probably reintroduce some meat protein to my regimen.

I had help with that diet and while I depended quite a bit on frozen items so that I wouldn't have a long wait for a meal, I also learned to make a mean vegetarian chilli. That success makes me think I'll be able to stick to this plan too. So far I've been on the diet for 10 days and I'm getting some positive results. I'll start reporting how I'm doing this weekend.

Follow up reports:

Gluten Free Part 2

Gluten Free 2 months later