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.

LDN: Parkinson's Disease Treatment or What?

Is Naltrexone a Viable Treatment for Parkinsons Symptoms?

It's been around for more than 20 years. It's always been controversial. It's had a few clinical trials, now it's getting more. Some say it works, some say it does nothing. A lot of people view it as another form of snake oil. But there is a community that believes it can help MS, ALS, Parkinsons, Alzheimers, Cancer, HIV/Aids, Celiac Disease, Crohns disease, Fibromyalgia, IBS and several other diseases. Warning signals go off in my head when a drug claims it can cure or slow so many serious things. But I'll ignore them and take a look at what's being claimed.

Here's how it is thought to work: Naltrexone is an opioid blocker, it blocks all the brain's opioid receptors and it was approved by the FDA to treat recovering addicts. The low dose version triples the body's production of endorphins which gets the immune system into full operation. The drug doesn't fight the diseases directly, the body fights the diseases after the immune system is back to normalcy.

Naltrexone is generic so no drug company will pay the millions needed to go through the off-label process with the FDA or the EU drug agency because there's no profit in doing so.

Another problem is that the drug comes in a 50mg capsule for the use of the addicts. Other human diseases would mainly use doses of 1.75 to 4.50 mg per day ("low dose" or LDN). To get capsules with the necessary dose size the patient wishing to use this drug needs to find a compounding pharmacy that is experienced with LDN. I think that some of the problems that off-label patients have had with the drug may have been inaccurate dose size from the compounding pharmacy. It is available in liquid form which must be kept refrigerated. If using the solution, you need to stipulate that you do not want the slow-release (SR) form. Remember also that you will need to titrate up to a dose effective for you. We've read of some MS patients only stop at 2.8mg and do not go all the way to 4.5mg.

It is important to take it between 11:00pm and 3:00am because the body makes endorphins in the last few hours before sunrise. Naltrexone is an opioid blocker-opiate antagonist; it makes the brain think it has a deficit of endorphins. So to compensate the body makes 2 to 3 times the normal amount of endorphins. The endorphins function restore the immune system to full operation. Some LDN users also add chlorella to their regimen for additional support.

Purely anectdotal evidence exists showing LDN reducing symptoms in MS patients and to a lesser extent in Parkinson's. At a site listed below the following improvements were noted: sense of well-being; no more depression; improved sleep; episodes of delusion/paranoia stopped; ease of muscle tension followed by restored normal breathing pattern; lowered doses of PD meds; improved cognition; restoration of balance; no more night sweats; no drooling; smile returned; lack of side-effects.  (1/2011 update) A recent anecdotal report indicates that tremor reduction after 6 days of use. It is  too early to determine if this is due to the effects of LDN or placebo effect.

So how do you obtain LDN? You print out some information and you discuss it with your doctor...who might mention the connection between T-cells and decreased dopamine but not that LDN might adjust the glial process...Which we will be discussing in the future.

Clinical trial results:
http://www.ncbi.nlm.nih.gov/pubmed/17222320
http://www.lowdosenaltrexone.org/ldn_trials.htm

Parkinsonian symptom abstract
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T0C-4FTS37F-5&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=50ee2ac9fb3795a3bb2c046b749e83ad

An interesting news item
http://www.mailtribune.com/apps/pbcs.dll/article?AID=/20080310/NEWS/803100308/-1/LIFE

You might find these interesting:
http://www.revolutionhealth.com/drugs-treatments/rating/naltrexone-for-parkinsons-disease http://www.digitalnaturopath.com/treat/T74481.html

Specifics about Low Dose Naltrexone

Check this site for LDN information  

and also this one: http://www.lowdosenaltrexone.org/

Our next two posts in this series:

Low Dose Naltrexone and Parkinson's Disease III: Dosage and Timing

Low Dose Naltrexone and Parkinson's II: Side Effects

Although the Parkinson's LDN database at LDN World Database is small, it will provide some helpful information.  If you are using LDN for PD or know someone who is, it would be a great idea to make your addition to the database. They have a much longer MS database and a list (database) of pharmacists as well.

Addendum 3/29/11
Many patients are also taking Alpha Lipoic Acid as a supplement when they take LDN. Watch for R-ALA which is the positive form.
Researchers are now looking at natlrexone to treat the inpulse-control side effects of PD meds. We are wondering if those who take Mirapex and Selegiline or other dopamine agonists or MAOIs would be able to continue to have the benefits of those medications without the problems which many PwPs have experienced.

see: Naltrexone for Impulse Control Disorders in Parkinson's disease.

Addendum 6/27/11
Because we think this is very important, we just want to remind anyone taking LDN to always have a bracelet/dogtag/pendant/wallet card indicating that you are taking Low Dose Naltrexone.
In the event of a bad fall or other injury, you don't want to be given narcotic/opiate painkillers or you will have pain far worse than the pain you are already experiencing.
It has been suggested that this tag indicate Naltrexone at the very least as some people may not be familiar with LDN.