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

Hi Wendy,

Two years ago my Dad recovered from prostate cancer. Then he was diagnosed with Parkinson's Disease because he has a debilitating 'shake' in his one of his wrists. After he was diagnosed with celiac disease, his doctor re-diagnosed the Parkinson's Disease, realizing that he really had a secondary myoclonus ('shake') related to the celiac disease. There is a lot of peer-reviewed medical literature on secondary myoclonus. We live in NH. I have met a woman in NH that similarly to my Dad, was 1st diagnosed with Parkinson's, come to find out it was really the secondary myoclonus related to Celiac Disease that she was diagnosed later as having.

On another note, a neighbor of mine was diagnosed recently with celiac disease. This is a tie-in to your Michael J. Fox's Asian experience. My neighbor had gout. He travels a lot. In Asia, his gout doesn't bother him as much. He realized that he didn't eat wheat in Asian, and drank rice beers. So, he was tested for Celiac Disease and he has it. His gout is less of a problem now that he's on a gluten free diet.

Hello,

I have suffered Parkinson's for 18 years, and as a retired scientist, I have studied the disease. I have come across other pointers to gluten playing a part, and will try a low gluten diet and let you know.

Almost all of symptoms eventually were neurological and I was wrongly treated with antidepressants, stimulants, mood stabilizers, etc. I had many symptoms but now I take no medications and just eat gluten free. I was a mentally ill person and now I am not. It is like having two lives, I have a hard time reckoning with my past and where I have been as a result of not knowing but I try to have compassion with myself. Nothing would surprise me because I know how sick I was, mentally. Colleen

I have had Narcolepsy and non-epileptic seizures for over 10 years. For a few months I was completely disabled until I was put on traditional Narcolepsy medications. I have 2 family members diagnosed with Celiac (through biopsy) but my blood test 10 years ago came back negative so I never went gluten free. I should have!

In 2002 I went on an Atkins-like diet and found my symptoms mysteriously disappeared and I could live a normal life without medication. I eventually went back to wheat and got sicker and sicker. Late last year I found most of my symptoms were due specifically to gluten, which I began to avoid 100% with great results. The rest of my symptom triggers are due to food allergies related to pollen allergy. I've heard that Celiac can cause allergies, too.

I recently received a copy of my DQB1 and DRB1 genes and found out I have a Celiac haplotype plus another gene on the same locus that is both a Celiac and a Narcolepsy gene. This explains why avoiding gluten controls the Narcolepsy and seizures. I seem to have some permanent Narcolepsy damage that happens even on the strictest diet, but it is mild and completely manageable. The seizures never happen unless I eat gluten.

It is my belief that Celiac Disease caused my Narcolepsy, but there isn't a doctor in the world that would have ever heard of that. Funny thing is, I'm not the only one!

My only gripe is that I had to figure this all out on my own because doctors just thought it was all psychological, despite a total loss of reflexes during paralysis. And I only figured it out because I kept working at it and never gave up. When will they wake up and start helping people?

Those who speculate on who has and doesn't have celiac know that short stature has always been a symptom of celiac. Today, it would definitely raise a red flag for celiac screening in a child. It's also part of what makes Michael J. Fox unique in Hollywood and been a contributing factor in his very successful career...

Is there a link between Celiac Disease and tremors (shakes) of hands and fingers. Would this necessarily be Parkinson's Disease?

My father's shakes are in his wrists predominantly, but this also effects his fingers/hands, so I'm not really sure where they are originating. Question: I also have Celiac Disease, and in the last 4 years (mostly prior to my diagnosis) I have had some strange symptoms of my own and am wondering if anyone else has experienced these, as I understand that some of these may be neurologically based? These include occipital neuritis; visual-spatial deficits (so much so, that I have been recently coded as having a 'non-verbal learning disorder'); and a couple of times, my whole body has become 'paralyzed' for a couple of seconds, although I can still 'see' around me - just can't move. This paralysis hasn't occurred since I've been on the gluten free diet. I still have problems with vertigo. Also, I had problems with 'burning' feelings in my body, not anymore really now that I am on a gluten diet. These occurred predominantly in bending areas; also in fingers/toes. Sometimes there was a rash along with the burning but it was diagnosed as not being Dermatitis Herpetiformis. Oddly enough, sometimes the one on my face resembled the lupus rash - although that in and of itself was diagnosed as not being lupus, based on many test results, including a negative ANA. I am not deficient in any vitamins and minerals; I have been tested and have (fortunately) been supplementing i.e. with extra with Bs & Ds & probiotics for years. I also forgot to mention that I still have trouble with gastro-pareisis, which I understand others with Celiac might have? For those who don't know what gastro-pareisis is, I can only describe it really, how it is for me personally. It's like someone unplugs your entire digestive tract from a power source. There are no sounds, no movement. It's actually very scary. When it happens, I have to wait it out. If I eat, I throw up. It doesn't hurt per se. It's just there's no where for the food to go that's how it feels anyway. For the oddest reason, if I don't eat any grains whatsoever (i.e. quinoa, rice, sorghum, corn, et cetera) the gastropareisis all but disappears. When I get 'glutened,' I don't get the traditional gastro-intestinal symptoms. I get headaches/migraines, and the burning in bending areas. My IgAs were above the testing range when I was 1st diagnosed; however, there was very little villi damage; I do recall the doctors being very surprised! Just wondering if anyone else has had any of these experiences or perhaps all.

1. I know from personal experience, that gluten intolerance can cause depression and mental illness. I suffered from two bouts with clinical depression and tons of other problems prior to going gluten-free.

2. I decided to try being gluten free last year to determine whether gluten was the cause of my health challenges. I went without it for four days, then had two pieces of homemade wheat bread. Within 45 minutes, my feet were like ice cubes, my left arm was tingly as though it was falling asleep, I had to lie down from exhaustion and I was shivering uncontrollably. (I don't necessarily recommend this method of determining gluten sensitivity.) I could literally feel all the blood in my body rushing to my abdomen.

3. My mother and I have both determined that we have gluten intolerance. My maternal grandmother passed away from Parkinson's a few years ago. She had been diagnosed as having diverticulitis, IBS, and Osteoporosis - all of which are related to gluten intolerance.

So yes, in my unprofessional opinion (we know how uneducated MOST of the professionals are about this), there is a definite connection between celiac and Parkinson's.

I was diagnosed with Celiac 6 months ago and have been gluten-free since. I've had a tingling in my hand and forearm, on and off throughout the day for a couple weeks. Has anyone experienced this?

I am very interested in this topic. My husband was diagnosed with Parkinson's Disease about one year ago.. although he has been experiencing the symptoms for about 2 years now. I was talking with a friend of mine who is gluten intolerant. She asked me about the possibility of gluten affecting patients with Parkinson's Disease. She explained to me what gluten does to ones intestine and the affect it has on absorption of nutrients. I thought about all the research I've done on Parkinson's Disease and that studies have shown patients to be lacking in Vitamin D, E and most B vitamins. If there is a link then it makes sense why there is such a deficiency in Vitamins. So I decided to get rid of all the gluten in our home. My husband has reluctantly agreed to go along with it. The most amazing thing is my oldest son, who has just turned 3, is doing so much better. He's still in diapers and they have been horrible and nasty. I have always known something is bothering him. Well after two days of gluten free eating his diapers have been almost normal. So I am even more convinced that my husband has an intolerance to gluten. Especially since his mother and sister are gluten intolerant. Please write more about this subject if you have anything to add about Parkinson's Disease and celiac disease.

(10) Hi Robo!

Yes, I have experienced the symptoms you mentioned. Although I'm gluten-free since have the tinglings and numbness in feet, knees, hands and elbows - although in a very low level. I try very hard to understand if there is anything more I have besides celiac disease but I can't find. I have visited many doctors (reumatologits, endoc., neurol. etc. and nobody can find a thing while my tests are negative.

Please, if somebody knows more for this subject, I would appreciate to let me know.

Lila and Robo, I too have the tingling...I described it as buzzy hands. I thought at first it was carpal tunnel, but the surgery didn't help. Going gluten-free made a huge difference, but I'd still wake up in the morning with buzzy hands. Then I did research on B-12 and discovered that gluten intolerance and malabsorption of B-12 is related, and B-12 deficiency had all the symptoms I was experiencing.

I have not been confirmed coeliac but any gluten/wheat however small sets off dreadful abdominal pains bloating etc so I eat a gluten free diet. I have recently been diagnosed with Parkinson's disease and am interested if there is any link

I have been gluten free for two years. I started because I was diagnosed with Chron's I'm 76 years old gluten has had time to do a great deal of damage. Besides the Chron's I also had high blood pressure, congestive heart failure, arthritis (60) years. After bypass surgery I had to quit my arthritis medication. Then the Chron's kicked up. Two years of that with no medications that worked made me desperate. I read on line that gluten could damage the small intestine so I tried the gluten free diet . Results after two years, blood pressure normal or lower, nearly no arthritis pain. my heart is now back to normal. I'm only taking 20mg Lasix every once in a while no other heart medications. Any one who has stomach problems should try it. Twenty years of indigestion went away after two weeks and never returned

Have any of you with diagnosed celiac disease been told that the antibody count in your blood is higher than normal?

I was diagnosed as Celiac in January after antibody count was over 60. However that is the only test which was done so I do not know how the Dr. could have been so sure I was Celiac. Now I think that I may be just gluten intolerant. My count is down to 23, still a little high, so I soldier on with a gluten free diet. This is one really great site for information isn't it?

Did it work, Ron?

I have narcolepsy and my father has Parkinson's.

I have a long and involved hypothesis on how both of them are related to gluten. I believe it is the IgG antibodies rather than the IgA antibodies which cause celiac disease.

I was diagnosed with Celiac disease about a year ago due to extremely low iron counts during pregnancy and after the birth of my third child. My mother was diagnosed with Parkinson's disease around the same time. She has recently been suffering from debilitating, but temporary paralysis of her body. She is coherent during this time, but unable to move her arms or legs. Her doctor has prescribed medication for epilepsy. But we are very reluctant to go that route. I definitely believe that celiac is the cause, however, she took a blood test a few months ago which came back negative.

Don't give up Kristine. I was tested and they found nothing. Then I was tested with a much more sensitive test with the help of a nutritionist. My antibodies were around 20. After giving up the gluten, my irritable bowel went away, acne cleared up, am clearer thinking and so much calmer! Find a good nutritionist or naturopath in your area and ask them to do the testing. Grass fed meats provide Vitamins. A, E and D and omega 3's not present in the common grain-fed meats. While the gluten is not coating her bowel, she can now absorb her nutrients! Give lots of organic fruits and veggies (kale) and daily tablespoons cod liver oil (also high in A and D). Give her a good probiotic. She may have a dairy sensitivity as well, if so don't give soy milk. There are many other alternatives.

I have been reading a lot about gluten free and Parkinson's disease which I have and primarily a tremor in my right hand. Hoping this helps...makes sense.

I have been on a gluten free diet for ~ 20 years, and have NEVER intentionally gone off it, as I feel the negative impact almost immediately. To say I feel better for being off gluten and dairy is an understatement-- I feel sure I would have been dead long ago had I not eliminated gluten.

I drink nothing but filtered water, 1 1/2 cups of coffee and 2 cups of green tea/ day. I eat approx 1/3 the meat most Americans do. To say I eat a very healthy diet is an understatement.

Starting in 2001, I began and continue a very intense daily program of physical training, including 35-45 minute sessions with free weights, alternated with manual treadmill and now a recumbent exercise bicycle. I did this to prepare for and maintain my fitness for backpacking the Grand Canyon, which my wife and I did in 2001 & 2002, at the age of 52.

5 years ago, I started having a tremor in my right hand, and approx 2 1/2 years ago was DX'd with idiopathic Parkinson's.

I can only imagine how much worse I would be with the PD, had I not started exercising aggressively 9 years ago. As I have already said, if I hadn't gone gluten free 20 years ago, I am convinced I would have died years ago-- I was severely malnourished when the doctor suggested I eliminate gluten from my life.

Is there a connection between gluten and PD? I don't doubt it at all, especially since gluten intolerance depletes the B vitamins in particular (good for nervous system health), and PD has been linked to a near-continuous fight or flight reaction by the body.

A low gluten diet will still damage the intestinal wall, causing leakage into the blood and in turn the blood brain barrier to the nervous system, thus causing damage leading to the Parkinson-like symptoms.

I have been gluten free for 5 months after researching a particularly bad episode of stomach pain and bloating. I have found that my mental and physical well being has improved dramatically. I started by drinking kefir milk and eating non gluten carbs then stumbled across a diet plan by Zoe Harcombe specifically for people with food intolerances. I used to be very depressed and lacked energy, mood swings and angry outbursts were commonplace and I had a long standing weight problem which was causing me a great deal of physical pain I was beginning to consider if life was worth living. However I have now lost three stones in weight and feel positive healthy and optimistic. In fact I feel better than I have for twenty years.

I was diagnosed with PD about 3 years ago and so far have eschewed medication. Just recently had a sophisticated gluten antibody blood analysis that tests for antibodies to 24 separate wheat/gluten proteomes (peptides). To my surprise results came back showing sensitivity to 16/24 of these markers. Naturally, I am very interested in the possible connection between PD and GI. Am going on a gluten-free diet (to the extent sensibly possible), and am giving up my drinking of wine. So far, I can report I have had a huge improvement in the quality of my sleep, though no noticeable improvement in my tremors and slowness. I much appreciate the info on this board.........