Wendy Cohan, RN's Gluten-Free and Dairy-Free Cooking Classes

I have just been diagnosed as 'gluten intolerant' and have been gluten-free since Feb. 9, 2011. I am interested in learning more about a possible gluten intolerance - Parkinson's Disease link. My mom was finally, finally 'diagnosed' with Parkinson's Disease which was quite possibly gluten intolerance; I think they just told her that diagnosis after the many, many tests could not find a definitive reason for her sporadic loss of balance and hesitant gait. Her doctor specifically called it "Lower Level Parkinson's Disease; she never had any tremor at all in her hands or head. Her speech was somewhat affected. She kept telling the doctors it was 'all in her head, not in her muscles'. However, at 80 years of age, her insights were disregarded, and when the medicines for treating Parkinson's were ineffective in alleviating her balance problems, she was pretty much sentenced to just living out the rest of her life un-helped, wheel-chair bound. She passed away at age 85, after suffering many years with the balance problem, and I just wish -so very much!- that I could have found out about gluten-intolerance early enough so that she could have been helped. Maybe this information will help others.

Just been diagnosed with celiac disease. After one month gluten free my symptoms-psoriasis,weakness,exhaustion, bowel problems, gout-like pain, joint pain,recurrent hives,indigestion, high blood pressure are all going away.My father died from Parkinson's at 77. I now believe, since he had all these same symptoms that he was misdiagnosed for PD and he actually had celiac. The side affects of the PD drugs were truly horrific in his case and I wish now that doctors would consider gluten intolerance as a standard test before diagnosing Parkinsons. You will never convince me now that there is no connection. I hope this will help others to tell there doctors to test for celiac disease.

You really need to do a proper study with a control group. if you invite people to contact you who have both celiac disease and Parkinson's disease then of course you will find such people, and only such people. This does not tell us if the incidence of PD is greater in people with celiac disease than in the normal population.

I went on a gluten-free diet 4 years ago , on advice of friends. Not on;y did this clear up severe digestive problems, but also my increasing pain and stiffnes in joints, muscle weakness and

Blood tests for celiac disease were negative, presumably because I could not go back on a normal diet , as my symptoms were too severe. Have had a hard time getting consultants to take me seriously, on this account, but have now been diangnosed with NCGI, together with a plethora of food intolerances which subsequently delevoped (I now cannot tolerate any grains and seeds at all, nor legumes (in the main) nor fats and oils. The only protein food I can now tolerate (that I can find ) is soya milk. Consultant gave the impression he thought i was probably making it all up, and said there's nothing he can do for intolerances, just keep avoiding problem foods, goodbye.

I get quite sever neurological symptoms along with all my food reactions, approx 5-6 hoours after eating. I had suspected gluten ataxia, but now other foods priduce same symptoms, would be interested to know if this is still a possibility?

Have been dyspraxic all my life and this has been worsening in recent years. Am now developing Parkinson-like symptoms. Have had various tests including MRI scan, and all negative. Have ben too depressed to go back to the doctor , since her partner told me that he believes all my symptoms to be psychosomatic. This was soon after seeing the dismissive consultant. I had rung the surgery in concern because i was reperatedly loosing control of my leg muscles and falling to the ground in the street. I wanted to know if this could be diet-related and naively thought that, maybe , if I alerrted my doctor DURING an episode, then appropriarte tests could be done immediately, and might, at last, reveal something.

Have just found out that Parkinson's Disease does not show up on tests, so this is still a possibility , isn't it?

Food reactions can be linked to PD, my partner gets worse with certain foods.

I am seeking information on gluten intolerance and Parkinson's.

I know this is dated, but it is worth noting the mental health link with gluten. Most doctors don't make this connection. I am now over 60 so some wisdom comes with age - but I have to say my mood swings and odd feelings of recent years have gone with the gluten.Colleen hope you continue to enjoy good health both mental and physical.

George,

I have Early Onset PD and am struck by your last statement linking PD to "a near continuous fight or flight reaction by the body." Where did you learn this ? I am fascinated because anxiety was the very first non-motor symptom for me and I now have disabling panic attacks. Talk about feeling like you would die. As for celiac and gluten links, I have been considering giving it up as I have several markers for it according to a site I read.

Thanks!

I am a 43 year old woman who was diagnosed 7 years ago with early on-set idiopathic pd. Two weeks ago I was diagnosed as having celiacs disease. In my mind there has to be a definite link. I'm hoping that my PD and overall health will improve with this gluten free diet. I would LOVE to have the PD symptoms someday disappear and to have a normal life back.

I don't have Parkinson's disease, but I was diagnosed with Asperger's syndrome, obsesive compulsive disorder, clinical depression, generalized anxiety disorder and bipolar. The vast majority of my symptoms vanished with a gluten-free diet. Self-diagnosed that one and lost 70 pounds in the process. I no longer trust doctors.

Eating a gluten-free diet does not improve Parkinson's symptoms. I have been coeliac and eating gluten-free for 12 years and have developed early onset Parkinson's in my 40s and diagnosed 4 years ago. My diet is strict, so going gluten-free is not the answer, sorry to dampen enthusiasm here. I have been told by several doctors that some of my neurological problems, e.g. numbness and tingling etc. may be due to the coeliac disease and not the Parkinson's.

I recently discovered that I and two of my children are gluten intolerant. My father and my husband's father both have Parkinson's disease and I was also wondering about a connection. One of my children in particular has a severe neurological reaction to gluten. You could be on to something here.

there may be other issues to PD:

see lef.org for other vitamin issues for PD like the need for DHA fish oil 4x day and 5000 IU vitamin D3 as examples.

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Life Extension Recommendations

Parkinson's disease is a multi-factorial pathology and must be treated as such for symptomatic relief. An ideal management regimen should include the lowest possible effective dose of dopamine replacement therapy, daily use of a neuroprotective agent (such as 1mg of rasagiline), nutrients to support mitochondrial function (such as CoQ10 and B-complex vitamins) and if possible, cardiovascular aerobic exercise with a target heart rate of 75% for a minimum of 20 minutes at least three times per week (to stimulate the release of neuronal growth factors in the brain). Muscle stretching and practicing either yoga or tai chi are supportive as well.

The following nutrients target various aspects of Parkinson's disease pathology:

CoQ10: 1,200 – 2,400 mg as ubiquinone, or 200 – 300 mg as ubiquinol

Creatine: 1,000 – 2,000 mg daily

Omega-3 Fatty Acids (from fish oil): 2,000 – 4,000 mg daily

Mucuna pruriens; standardized extract: 300 – 1,200 mg daily

Vitamin D: 5,000 – 8,000 IU daily (depending on blood test results)

B-Complex vitamins: Per label instructions

Acetyl-L-Carnitine: 1,000 – 2,000 mg daily

Green Tea; standardized extract: 725 – 1,450 mg daily

Green Coffee; standardized extract: 400 – 1,200 mg daily

Trans-Resveratrol: 250 – 500 mg daily

Probiotics: Per label instructions

Curcumin: 400 – 1,200 mg daily

Melatonin: 1 mg – 5 mg daily

N-acetyl Cysteine: 600 – 1,800 mg daily

Lipoic Acid (as R-Lipoic acid): 300 – 900 mg daily

So just to clarify, you had been off the gluten for 15 years when the PD symptoms developed? I've always wondered about the continuous "fight or flight" response being connected to PD. You say you've read research about this?? Where? It took 18 years of suffering to finally find out that gluten was the problem for me. My entire life has been on the "fight or flight" response. Shortly after I got off the gluten, I started with the tremors. I've been 98% gluten-free for about 8 years now and feel like a new person. Still have fatigue at times but the PD symptoms have remained only the tremors. The tremors unfortunately have gotten much worse. My question at this time is... can the PD symptoms go away once the damage has been done? Does the fact that I still get a little bit of gluten impact my symptoms?

Please keep us updated. Did you try the gluten-free diet? If so, how long have you been on it? What, if any changes have you seen so far? Even if you have not seen any changes, I'd love to know. Thank you for taking time to help inform!

Thank you for sharing your experience. It's great to hear what going gluten-free can do, but it's equally important to hear when it doesn't work. I'm an acupuncturist and have treated patients with PD. For the one patient who has continued treatment, (while still on meds,) his tremors have decreased from an 8/10 to 0-2 out of 10. His internal tremor has stopped. Just recently, he is able to walk backward without hesitation. He won't change his diet of white flour, meat, and very little vegetable. He does supplements. It's a difficult disease for sure. One nice thing about going gluten-free is it usually means a healthier diet and that's a good thing to continue to explore.

Please update us if your father and father-in-law try a gluten-free diet. I'm interesting in following this connection with Parkinson's disease. How long does it take to start seeing a change in tremors (external or internal), if decreased sense of smell, any change there, bradykinesia, etc.? Even if you do not see any changes, that would be helpful as well. Thank you.

I have Parkinson's disease and also celiac disease. I have been on a gluten-free diet for 15 years and I don't think it helps my Parkinson's any. I was diagnosed 6 years ago with the Parkinson's.

Hello Ron, I read your post above and have recently removed wheat (and sugar in general) from my diet. The reason? I just want to feel better. Two weeks in, I feel wonferful - so much energy.

I would be interested in learning if you have found that the removal of gluten from your diet has had any impact on the Parkinson's Disease that you have suffered from for so long. Thanks in advance, Joy Edwards

David, have you you replenished your body from all the malabsorption and malnourishment you suffered from years of eating gluten? A gluten-free diet is never enough if a person doesn't start nourishing and replacing what they have lost. Have you sought help from anyone to heal your small intestine or to check your stomach acid level? Most likely you are very low in stomach acid and are still having absorption issues of your fats, minerals and proteins. How much good fat do you eat? Do you use coconut oil? Fat is a key factor in healing from neurological diseases and coconut is quite a miracle food in that arena.

Blessings to you.

Laura,

As I read George's comment I was also struck by his statement about "fight or flight reaction" because I also have Early Onset PD and have battled anxiety most of my life. A nutritionist recommended I try a gluten-free diet and after just a few days my indigestion and heartburn went away and I felt better in other ways. I haven't kept it up 100 % but keep coming across more and more reasons to do so. I could identify with your comment and when I noticed that your name is also Laura, I decided to comment and ask if you have tried going gluten-free and if it has helped you. Perhaps you won't even see this, but I thought I'd try! I hope you have found something to help and I hope I can find the discipline and resolve to stick with it!

I changed my diet to be gluten-free and now mostly grain free too after a period of neurological illness. I feel amazing now and more alive then the 30 odd years I ate gluten. My mother died of MND her mother had MS my daughters are both gluten intolerant. The link between gluten and neurological disease needs to be told more I started a blog to share this info etc.

I had severe thickening and cracking of my knuckles, elbows, heels, Palms (where my golf clubs were held), and finger tips where I held my bowling ball. This started in the 1970's without relief up until about 4 years ago. I had occasional bleeding as the thick skin would crack when I exercised. I had no clue what was the cause. It was at this time (4 years ago) that I was about 40 pounds overweight when I saw on TV a report by a nutritionist on the PALEO diet. The appeal of this diet was it caused reduction in my weight. There was no mention of the fact that this diet was gluten free. I went on the grain free diet in order to lose the weight (which it did). After the first 2 months my weight had come down significantly. During this same time (I took no notice of when it actually started to change) my thickening of all the affected skin areas cleared up completely. I noted at the 2-month point that it had happened. I then followed up by researching my condition and eventually discovered the gluten link. I have been gluten free for the past 4 years and have had no recurrence of my skin problems. I did not have any other gluten symptoms such as stomach discomfort, etc.. I will now stay gluten free for the remainder of my life.

my mum was diagnosed coeliac 50 years ago and is now 80 having lived a gluten free diet for years. Prescribed bread etc. She now has Parkinsons, diagnosed a year back.