I Was Diagnosed With Parkinsons 9mth Ago At 33yrs Old

[iagreenthumb]

I was diagnosed with Parkinsons 9mth ago at 33yrs old. I have a tremor in my right arm and a limp/gait when walkin in my right leg. I am on 1mg of Mirapex 3 times a day. Some days are drastically better than others. Is there anyone like me that has found a gluten free diet to help? I am thinking I shoud try it.

Thanks,

Brenda

[RiceGuy]

Well, since the gluten-free diet isn't difficult to do, nor does it require a physician, I'd say go for it. You might find it most helpful, or maybe not. But you won't find out unless you try it, right?

Just keep in mind that you may have to stick with it for months before you notice anything appreciable. It took me six months. On the other hand, many find the diet makes a huge difference within days.

As for your specific symptoms, I seem to recall reading something about a magnesium deficiency and an abnormal gait. Many Celiacs do find a magnesium supplement very helpful in addressing symptoms, one of which is pain. The tremor symptom brings to mind something I read about vitamin B12, which happens to be another nutrient in which Celiacs are often deficient.

Overall, I'd say go for it. What do you have to lose? The gain however, might be enormous. If you decide to try the gluten-free diet, or have any other questions you'd like answered on this board, please feel free to post anytime.

Welcome to the board!

[UR Groovy]

I was diagnosed with Parkinsons 9mth ago at 33yrs old. I have a tremor in my right arm and a limp/gait when walkin in my right leg. I am on 1mg of Mirapex 3 times a day. Some days are drastically better than others. Is there anyone like me that has found a gluten free diet to help? I am thinking I shoud try it.

Thanks,

Brenda

I think now that a gluten-free diet could help the symptoms. My mother was dx'd with Parkinsons last summer. She's noticed a significant difference in the tremmor after MSG (not saying that msg is gluten - just that what we eat affects us). I suspect that a gluten-free diet would help her tremendously. We think gluten is a problem, but she's not willing to give it a real go yet. She's dropped the MSG though.

I'd say, try it for a while, and see how it goes. Watch carefully when you re-introduce the gluten and take careful notice to your symptoms.

I'd also recommend that you keep a food journal in any event. Track what you eat & how you feel. You'll begin to notice patterns and make connections.

Take care of yourself - I think that what you eat is monumentally important.

[holiday16]

I was diagnosed with Parkinsons 9mth ago at 33yrs old. I have a tremor in my right arm and a limp/gait when walkin in my right leg. I am on 1mg of Mirapex 3 times a day. Some days are drastically better than others. Is there anyone like me that has found a gluten free diet to help? I am thinking I shoud try it.

Thanks,

Brenda

Before I went on the gluten free diet I started shaking really bad. It had been mild off and on for years, but in the month right before I started the diet it became very pronounced. It also began to spread in that my legs began to feel very shaky as well. About 3 weeks after being gluten free it began to improve and gradually went away for the most part. I still have times where I shake, but not as bad as it was unless I accidentally have gluten. Then for about 3-5 days it's severe off and on. I'm considering talking to my Dr. about it to see if it should be evaluated since it hasn't gone away 100%, but going gluten free has made a dramatic improvement. It's also in my right arm and I'm 33 as well. When it first started to get worse it was like being hypoglycemic, but it would not go away and then it became more pronounced. I was so relieved to find the gluten free diet helped.

[Buck22]

I was diagnosed with Parkinson's Disease almost 15 years ago at the ripe old age of 28. I'm beginning to think that the vast majority of my complications have been because of Celiac Disease rather than the progression of my PD. I'm even beginning to wonder if maybe that's what caused my Parkinson's disease in the first place! I'm only beginning to figure this gluten thing out, but the more I read about Celiac Disease and gluten intolerance the more pieces of the puzzle I am discovering.

Re MSG - I'm exactly the same! It's absolute poison to me. Even the slightest trace amount sends me into a wild and uncontrollable shaking attack. I've been telling my neurologists about this for years, but they've never been able to explain the reason. Here's an excerpt from a recent letter I sent to my neurologist:

"The link between what I eat and the severity of my Parkinson

[CarlaB]

Lyme should be ruled out in a differential diagnosis for Parkinson's Disease.

Open Original Shared Link

I have Lyme and gluten-free helps me tremendously. You would think I was a full-blown celiac in the way I react to gluten. I think gluten is difficult for anyone to digest, and those of us with health issues are better off without it.

[Fiddle-Faddle]

I've been wondering if there's a connection ever since I read that Michael J. Fox (the most famous Parkinson's patient) spent years and years drinking massive amounts of beer. Hmmmm.... I bet you're on to something!

I also agree that Lyme ought to be ruled out.

Welcome to the board and please keep us posted!

[CarlaB]

I also agree that Lyme ought to be ruled out.

The only lab that exclusively tests for Lyme and tests for all relavent bands is Open Original Shared Link. You can have them send you a test kit and then take it to your doctor. Most doctors are not adequately trained in reading the results, so you might want to post your results either here (many of us have Lyme) or on Lymenet's message board, unless you can get to an ILADS doctor (Open Original Shared Link) for interpretation.

[Guest j_mommy]

My Gma was diagnosed in her 40's with Parkinsons and she is now 75. With parkinsons you go through alot of med changes as teh disease progresses due to the effect wearing off. She eventually had the brain surgery...2 yrs ago and while it didn't take away the symptoms it turned the clock back about 20 years, symptom wise!!!

But it would be interesting to know if you could lessen teh symptoms by going gluten-free!!!!!

[Buck22]

The way they arrive at a Parkinson's diagnosis is to perform several different tests to rule out other possibilities - MRI to rule out brain tumour, eye test to rule out Huntingtons, blood tests to rule out other things (like Lyme?) , etc., etc. and after they've ruled out everything else, the conclusive confirming test is to gauge your response to Sinemet, which is the medication used to replace the missing chemical called dopamine that your brain is no longer producing enough of. If most or all of your symptoms improve or disappear with the introduction of Sinemet - in my case abnormal gait, freezing, small hand writing, slowness of movement, tremors ... then they know it's PD. All of my symptoms all but completely disappeared when I first started on the Sinemet almost 15 years ago. The honeymoon lasted about 6-7 years, but as the disease has progressed so have the symptoms. I know nothing about Lyme Disease, but will ask how that was ruled out at my next appointment.

As far as the DBS (Deep Brain Stimulation) surgery goes... they only consider you for this if all other avenues of therapy have been exhausted. In the last few years I have progressed to the point where I (and they) had felt that this was my only hope of restoring a lot of my lost functionality ... until recently that is... I'm onto something with this Celiac thing, and I'm very excited. It's taken me 15 years to figure out, but it's been a revelation discovery for me so far (even though my doctors don't believe it) . I've got my fingers crossed.

Regards,

Richard

I've been wondering if there's a connection ever since I read that Michael J. Fox (the most famous Parkinson's patient) spent years and years drinking massive amounts of beer. Hmmmm.... I bet you're on to something!

I also agree that Lyme ought to be ruled out.

Welcome to the board and please keep us posted!

[rinne]

Sorry to hear you are going through all this, I can only imagine that receiving this news would be very hard.

My grandmother was diagnosed with Parkinson's in her sixities but when she was in her eighties doctors told my mother that she didn't have Parkinson's after all. I always suspected that years of standing in a chemical cloud from hairspray might have caused the tremors but now I wonder whether it might have been Celiac.

My mother has a variety of conditions which are clearly related to gluten but since the doctors keep telling her she doesn't have Celiac she won't cut out all gluten.

In my case the malabsorption eventually caused critically low B vitamin levels leading to neurological issues, I was walking like I was drunk, with dizziness, shakiness, irritabilityand often the feeling of near panic.

How are your Vitamin D and B levels?

The appropriate supplements, detoxification and a diet free of gluten, dairy, nightshades and grain have made an enormous difference in my health. I have also taken steps to address Lyme disease which I was tested for and saw sufficient evidence of a pattern of Lyme to take steps to address that too with salt/c, samento and noni.

In my own experience diet can make the difference between health and illness, conventional medicine does not address this, trust yourself and beware of medication that may have side effects. When I first became ill my doctor (no longer so) prescribed oma-prazole which stops all absorption of B vitamins. She did this with my critically low B vitamin readings in front of her.

Sometimes there are just no emoticons that adequately express the frustration of dealing with doctors.

[CarlaB]

I know nothing about Lyme Disease, but will ask how that was ruled out at my next appointment.

Richard, my guess is that it wasn't. Read on FAQ on Open Original Shared Link for an explanation why. Doctors just don't consider it. It was my internet research that led me to my diagnosis. When I told my doctor I thought I had Lyme, I was practically laughed at. She told me that she would test me because I needed to realize my illness was psychosomatic, so I needed to get it out of my head that I had Lyme. Even when my results were positive, she still insisted I did not have it, and I met the CDC's strict criteria!

If IGeneX did not do your test, do not consider it accurate.

If you were tested, ask to see the results. The CDC has very restrictive criteria for tracking purposes only ... they want to see trends, not every single case. The problem is, most doctors use the CDC criteria for diagnosis. The test will have many "bands". If you go to Open Original Shared Link and post the results, the people there can tell you what all the bands mean.

Since a big part of Parkinson's Diagnosis is ruling other things out, I would definately want to be tested for Lyme before I accepted a Parkinson's diagnosis.

I hope the gluten-free diet helps your symptoms. I know I feel much better eating gluten-free.

[Fiddle-Faddle]

I always suspected that years of standing in a chemical cloud from hairspray might have caused the tremors

You know, Rinne, I think you've brought up something very, very important. Women are generally exposed to a vast number of chemicals that men are not, such as hairspray, hair dye, makeup, makeup remover, nail polish, nail polish remover, and perfume. And I suppose we ought to add all the cleaning products (full of chemicals), as most women still do the majority of house chores.

This could certainly be a factor in why more women seem to have debilitating illnesses than men (that, and the fact that we tend not to complain as much, so by the time we actually go to the doctor, our symptoms have progressed much further).

[rinne]

This could certainly be a factor in why more women seem to have debilitating illnesses than men (that, and the fact that we tend not to complain as much, so by the time we actually go to the doctor, our symptoms have progressed much further).

Just to continue with that thought, I've also read because of women's higher fat ratio many of these chemicals have a more debilitating effect on women.

I think there is a real danger in receiving a diagnosis from a medical system so uninformed about the effect diet can play and with little knowledge of ways to detox especially when diet and detox may be all that is needed. I know that by the time many people receive a diagnosis they are just glad to be able to say what it is but I really hope that people will more and more challenge those ideas by changing their diets, detoxing and proving that it is possible for the body to heal.

I am not a doctor, I got sick, sick enough to figure I was dying or wished I was cause living was just not any fun and I am getting better and I am trying not to be bitter about what passes for a medical system.

[jaza33]

I agree with what others have posted.

After almost 3 years of being gluten free, I have found the following to be essential in recovery.

Avoid MSG- I think this is possibly more harmful than gluten. If you're low in vitamins, like most gluten intolerant are, than the msg affects you even more.

Avoid Aspartame- I used to drink a lot of diet coke. Has similar effects as msg, especially bad for your nervous system.

Calcium/Magnesium Imbalance- I still struggle with being low in magnesium and high in calcium. I supplement with magnesium only, despite the 2:1 calcium/magnesium ratio that's recommended. Sometimes my left thumb twitches or my left eyelid feels heavy. Supposedly, the parathyroid gland regulates the balance of calcium/magnesium. I just read that flouride can damage the parathyriod.

Avoid Flouride- Again, I think those who are malnourished are more affected by the flouride than a healthy person. I had nine fillings (white ones) put in throughout my twenties, having none before that. My teeth were decaying because of malnutrition. The dentist was giving me flouride treatments and telling me to use ACT flouride rinse after brushing. Obviously, my teeth were decaying from gluten intolerance, NOT lack of flouride. I believe I had some level of Flouride posioning that screwed up my parathroid. So now I only drink bottled water and use baking soda and salt for toothpaste.

B Vitamins- I agree that this is a key deficiency. I can't digest any grains and I think it relates to the B Vitamin deficiency. I don't do well with most synthetic supplements, so I don't know how to correct this. Before I went gluten free I had tingling and numbness in my feet and legs. This went away with dietary changes. Soy lecithin has choline which is a B vitamin essential to the nervous system. I take the liquid form. Even though I can't eat soy, lecithin doesn't bother me. I add it to a fruit smoothie. If anyone knows more on how to correct B vitamin deficiency, let me know.

Vitamin A &D- Supplementing with cod liver oil helped, especially in winter.

Whole Foods Diet- Making all my own meals from scratch has helped me the most. Avoiding my intolerances grains, milk and soy. It's very difficult to avoid MSG, unless you make it yourself. Also, I buy my chicken and meat from whole foods. I'll buy a whole chicken to roast and have leftovers. Deli meat is full of preservatives and MSG. Processed foods, even gluten free, are mostly filler foods and delay the healing process.

Liver/Gallbladder flushes-These really helped me. I had elevated liver enzymes and was very yellow looking. You can read about them on Curezone.com.

I started getting sick when I was 25 or 26 and started the gluten free diet at 27. I'm thirty now and much better. I believe my recovery would have been much faster if I had known all of these things from the beginning and incorporated them into my life right way. Obviously, you have to do what's best for you, but in my case doctors were making my situation worse. Again, if I were to go back in time, I would find a good naturopath instead.

[Buck22]

>>I agree with what others have posted.

What? - that women suffer more disabling conditions because they do most of the housework, or that beer causes Parkinson's? Seriously though - although I'd like to believe I don't have Parkinson's and this has all been a big 15-year mistake are micrography, freezing, lack of dopamine also symptoms of Lyme?

Regards,

Richard

I agree with what others have posted.

After almost 3 years of being gluten free, I have found the following to be essential in recovery.

Avoid MSG- I think this is possibly more harmful than gluten. If you're low in vitamins, like most gluten intolerant are, than the msg affects you even more.

Avoid Aspartame- I used to drink a lot of diet coke. Has similar effects as msg, especially bad for your nervous system.

Calcium/Magnesium Imbalance- I still struggle with being low in magnesium and high in calcium. I supplement with magnesium only, despite the 2:1 calcium/magnesium ratio that's recommended. Sometimes my left thumb twitches or my left eyelid feels heavy. Supposedly, the parathyroid gland regulates the balance of calcium/magnesium. I just read that flouride can damage the parathyriod.

Avoid Flouride- Again, I think those who are malnourished are more affected by the flouride than a healthy person. I had nine fillings (white ones) put in throughout my twenties, having none before that. My teeth were decaying because of malnutrition. The dentist was giving me flouride treatments and telling me to use ACT flouride rinse after brushing. Obviously, my teeth were decaying from gluten intolerance, NOT lack of flouride. I believe I had some level of Flouride posioning that screwed up my parathroid. So now I only drink bottled water and use baking soda and salt for toothpaste.

B Vitamins- I agree that this is a key deficiency. I can't digest any grains and I think it relates to the B Vitamin deficiency. I don't do well with most synthetic supplements, so I don't know how to correct this. Before I went gluten free I had tingling and numbness in my feet and legs. This went away with dietary changes. Soy lecithin has choline which is a B vitamin essential to the nervous system. I take the liquid form. Even though I can't eat soy, lecithin doesn't bother me. I add it to a fruit smoothie. If anyone knows more on how to correct B vitamin deficiency, let me know.

Vitamin A &D- Supplementing with cod liver oil helped, especially in winter.

Whole Foods Diet- Making all my own meals from scratch has helped me the most. Avoiding my intolerances grains, milk and soy. It's very difficult to avoid MSG, unless you make it yourself. Also, I buy my chicken and meat from whole foods. I'll buy a whole chicken to roast and have leftovers. Deli meat is full of preservatives and MSG. Processed foods, even gluten free, are mostly filler foods and delay the healing process.

Liver/Gallbladder flushes-These really helped me. I had elevated liver enzymes and was very yellow looking. You can read about them on Curezone.com.

I started getting sick when I was 25 or 26 and started the gluten free diet at 27. I'm thirty now and much better. I believe my recovery would have been much faster if I had known all of these things from the beginning and incorporated them into my life right way. Obviously, you have to do what's best for you, but in my case doctors were making my situation worse. Again, if I were to go back in time, I would find a good naturopath instead.

[CarlaB]

although I'd like to believe I don't have Parkinson's and this has all been a big 15-year mistake are micrography, freezing, lack of dopamine also symptoms of Lyme?

Lyme can cause severe neurological symptoms. I just know that if I had an illness that was diagnosed by eliminating other illnesses, I would want to be sure I eliminated them all.

Here are some quotes I found. By the way, my paternal grandmother died of Parkinson's ... so I've seen what it does to you.

Open Original Shared Link

Those Parkinson's patients who were treated for Lyme all improved.

Open Original Shared Link

Vast numbers of people with Lyme and other coinfections are being misdiagnosed with nonspecific labels such as Multiple Sclerosis (M.S.), ALS, Alzheimer's Disease, Fibromyalgia, Parkinson's, Lupus, Chronic Fatigue Syndrome, and many others. All of these disease labels only describe the symptoms, not the cause. Most of these disease labels have no known definitive tests, causes or cures, only symptomatic treatments.

Open Original Shared Link (next several quotes)

Later in the illness the disease can afflict the heart, nervous system, joints and other organs. It is now realized that the disease can mimic amyotrophic lateral sclerosis, Parkinson's disease, multiple sclerosis, Bell's Palsy, reflex sympathetic dystrophy, neuritis, psychiatric illnesses such as schizophrenia, chronic fatigue, heart failure, angina, irregular heart rhythms, fibromyalgia, dermatitis, autoimmune diseases such as scleroderma and lupus, eye inflammatory reactions, sudden deafness, SIDS, ADD and hyperactivity, chronic pain and many other conditions.

Dr. Mattman has subsequently recovered Bb spirochetes form 8 out of 8 cases of Parkinson's Disease, 41 cases of multiple sclerosis, 21 cases of amyotrophic lateral sclerosis and all tested cases of Alzheimer's Disease.

Dr. Joanne Whitaker relates that nearly every patient with Parkinson's Disease (PD) has tested positive for Bb.

Open Original Shared Link

Long-term Lyme disease can be debilitating, including body aches, neurological damage and even loss of sight. Its symptoms are often misdiagnosed or confused with those of other diseases such as fibromyalgia, Parkinson's disease, Lou Gehrig's disease or multiple sclerosis, the medical literature refers to it as "the great imitator."

[jaza33]

>>I agree with what others have posted.

What? - that women suffer more disabling conditions because they do most of the housework, or that beer causes Parkinson's? Seriously though - although I'd like to believe I don't have Parkinson's and this has all been a big 15-year mistake are micrography, freezing, lack of dopamine also symptoms of Lyme?

Regards,

Richard

Yes, I agree that household chemicals have a negative effect on health.

I think the beer comment was possibly an error??? Michael J. Fox was a spokesperson for Diet Pepsi. He said he was addicted to it and drank 8-12 cans per day. NutraSweet interferes with dopamine.

When I started having health problems, the doctors speculated that I could have Scleroderma or Autoimmune Hepatitis. I was shocked and scared. At the same time, I was confused that they would jump to these conclusions so fast. When I mentioned removing gluten from my diet, they dismissed the idea completely. I had read about celiac and felt I had more symptoms of gluten intolerance than Scleroderma.

I read a post from someone on a message board that said -just put yourself on the gluten free diet even though testing might not show celiac. A year from now you might be back in the doctors office with stomach cancer. Basically, her advice was to take responsibility for your own health, you don't need validation from a doctor. It's your life. Thankfully, I took her advice.

As time went on, I realized there was more going on with my health. I had deficiencies, other intolerances, toxins and chemicals, I consumed everyday.

The point of my post was to explore all possible reasons and causes for your symptoms. Most traditional doctors only treat illness with pharmaceauticals that could cause more problems.

[Fiddle-Faddle]

I think the beer comment was possibly an error??? Michael J. Fox was a spokesperson for Diet Pepsi. He said he was addicted to it and drank 8-12 cans per day. NutraSweet interferes with dopamine.

Could be. I know I read something quoting Michael J. Fox as having drunk many, many beers during his "partying years," but just because I read it doesn't mean it's true!

You're also correct about the Diet Pepsi.

[CarlaB]

Could be. I know I read something quoting Michael J. Fox as having drunk many, many beers during his "partying years," but just because I read it doesn't mean it's true!

You're also correct about the Diet Pepsi.

I've also read that he had a drinking problem at one point. It was an article that told how he had changed from that lifestyle.

[JerryK]

In my research on the various ADs they've prescribed me over the years....I found some data

indicating some researchers link anti-depressants with an increased risk of Parkinson

[Belinda Meeker]

Hi, I 'am new to all this but after reading these few pages......wonder how far back the celiac gem goes,so far we have only 1 of us been tested post. for Celiac Sprue>and with wht i read here... my dad's - dad's bothers all had PD and died at young ages, so wondering if it too could be Celiac related? Plus my hubby's brother and girl cousin r the same age and both of them have MS.....any one know about those being a factor? My mom was DX'D with Poly Mialghie (sp) and tons of GI prob's my sister too has has IBS for years,hubby's sis has too plus she has had blisters on hands from time to time ....so many more to list but like ur input>Thnks Bea

[Nancym]

Just wanted to give you a heads up, there's a blog by a neurologist at renegadeneurologist.com and he sometimes write about Parkinson's. You can search the blog for the topic.