Parkinson's--a Celiac Connection?

[elye]

Hey, all,

Well, I've done some surfing on this topic without much success, then realized I needed to come to you guys for answers, as I have before. Here is where I should have started!

I was diagnosed with celiac last fall. It would follow that one (or maybe even both) of my parents may also be celiac, it being hereditary. My dad is 81, my mom 78, and my dad has always been gassy and had a bloated belly--these are vivid memories from my childhood...the suspicion grows stronger. Because of their "I can't be bothered to get tested and change my diet at this age" attitude, I haven't bugged them about getting tested. However, in the last year my dad was diagnosed with Parkinson's. I managed to get information that suggests that untreated gluten intolerance can result in the lack of serotonin production/use, which is what causes Parkinson's. Are serotonin receptors found in the lower intestine? I thought it was just a brain malfunctioning thing, but I've read that in fact the receptors are found elsewhere. If that is the case, this is truly groundbreaking science, and should be trumpeted from the rooftops. Many serotonin-related diseases, from depression onwards, could be caused by celiac disease!(?) Anybody know anything about this?

[Guest nini]

There is a lot of research going on that indicates that gluten also causes damage to the central nervous system, the brain... neurological effects. Without even any noticible gi symptoms. I haven't specifically heard of a link between Parkinsons and Celiac, but I would think it is possible for sure.

[jerseyangel]

Just recently I read an article that said that it was once thought that the neurological symptoms of Celiac stemmed from vitamin deficiency, now they feel that Celiac somehow actually affects the central nervous system.

[Canadian Karen]

It would be VERY interesting to see any studies done on this connection. As I discussed on another thread regarding depression, I have been on Prozac for almost a decade now, which has literally given me my life back. One of the deciding factors in me taking that step was the fact that in my family history, there seems to be an indication of a lack of seratonin production.

The reason I find this particular connection interesting is the fact that my father has Parkinson's, and it is on my father's side where depression runs rampant. Interesting.

Karen

[elye]

It would be VERY interesting to see any studies done on this connection. As I discussed on another thread regarding depression, I have been on Prozac for almost a decade now, which has literally given me my life back. One of the deciding factors in me taking that step was the fact that in my family history, there seems to be an indication of a lack of seratonin production.

The reason I find this particular connection interesting is the fact that my father has Parkinson's, and it is on my father's side where depression runs rampant. Interesting.

Karen

karen,

Sounds like we're kindred spirits...both Canucks (I'm in Ottawa), both celiacs, both dads have Parkinson's, both affected with depression (I had wicked post-partum, but I seem to have gotten thru it med-free...so far). This seratonin connection is absolutely compelling...to think that all of these diseases may be stopped in their tracks, or greatly lessened, simply by stopping gluten consumption! You should check out this fascinating article by someone who's hot on the research trail:

www.clanthompson.com/discussion/public_html

[Canadian Karen]

Hi Emily!

Our lives so seem to be parallel, eh?

I went into Clan Thompson, but couldn't find that particular article..... Do you know what section it is in?

Thanks!

Karen

[mamaw]

WOw this is interesting.......... My dad is now deceased but he had psorasis, parkinson's ( the kind that affects the organs) not the shaking and tremors.... A Fib.His sisters has nervous disorders...... After I was Dx'd with fibromylgia, and a ton of other stuff then the gluten intolerance I began to suspect that maybe this is what he had all along and never got correctly dx'd....He also had severe arthritis.

MY daughter & one son is full blown celiac's and her other son is like me an intolerance to it.I get get my three brothers or my sister to get tested as they think I'm wacko...They just can't understand how wheat or gluten could do this. I also have a niece who is dairy intolerant and a great nephew who has exzema very bad is very very small and skinny, skinny. But he plays every sport out there and gets all a's in fifth grade so they think he's just a small kid. Both parents are tall and thin build. I think he needs tested.....

mamaw

[tiredofdoctors]

Oddly, my genetic testing is going to be with regard to this very thing. My grandfather had "parkinsonism" -- a phrase coined by a very old, questionably enlightened family doctor. The funny thing is, however, that my grandfather did not respond to Parkinson's medications, and did not have tremors. Parkinson's disease is a disease primarily of the substantia nigra in the middle of the brain. It secretes dopamine, which helps inhibit muscle contraction. If you didn't have dopamine, your muscles will be in contraction continually -- it is the neurotransmitter which calms them down. My father developed polyneuropathy very early in life -- and has definite gait deviations -- in the abscence of any precipitating factors (i.e. alcoholism (Werneke-Karsakoff's syndrome -- he's not an alcoholic). Neither of them had GI difficulties, and neither had vitamin deficiencies. At age 40, I began developing subtle changes in my joints/ muscles, and by 42 I was in a wheelchair -- no Celiac disease -- Anti-Transglutaminase and Antiendomysial antibodies negative, along with a negative biopsy (4 sites biopsied) in the small intestine. I do, however, have antigliadin antibodies. The neurologist said that my first test was high, the second one was extremely high. My understanding is that these antibodies cross-react with anti-perkinje cell antibodies (if you have them), and work to destroy the cerebellum (largely comprised of perkinje cells) and the retinas (have a large proportion of perkinje cells). Repeated MRI's have shown continued "fanning out" of my cerebellum (meaning that small portions are consistently being destroyed). My neurologist has begun to really research this. He said that the European countries are far advanced in comparison to the US with regard to neurological compromise in celiac and gluten intolerance with regard to the absence of vitamin deficiency. The UK has had one physician in particular who has extensively researched this -- and staunchly defends his position that neurological deficits are not particularly ALWAYS caused by vitamin deficiency in celiacs. Patients like me, who do not have celiac disease but DO have the antigliadin antibodies are giving him more and more credence. Hope this helps . . . . Lynne

[darlindeb25]

I do know that celiacs causes chemical imbalances--before going gluten-free I suffered terrible panic attacks--was on xanax first and then paxil for years. I was taking 40 mgs of paxil when I went gluten-free and I still had panic. After I went gluten-free, I weaned myself off paxil. That was over 4 yrs ago--now, at 50, I am under so much stress again that I am thinking maybe I will have to give in and try something to help. I need something to take the edge off, I guess. There definitely is a connection between the 2. Deb

[elye]

I do know that celiacs causes chemical imbalances--before going gluten-free I suffered terrible panic attacks--was on xanax first and then paxil for years. I was taking 40 mgs of paxil when I went gluten-free and I still had panic. After I went gluten-free, I weaned myself off paxil. That was over 4 yrs ago--now, at 50, I am under so much stress again that I am thinking maybe I will have to give in and try something to help. I need something to take the edge off, I guess. There definitely is a connection between the 2. Deb

Sorry I didn't get back on sooner...Karen, the article in Clan Thompson can be accessed two ways: on the opening page, type "Parkinson's" into the search bar, or google "celiac and Parkinson's", and click on the article "New theory on celiac". FASCINATING....

[abbiekir]

Sorry I didn't get back on sooner...Karen, the article in Clan Thompson can be accessed two ways: on the opening page, type "Parkinson's" into the search bar, or google "celiac and Parkinson's", and click on the article "New theory on celiac". FASCINATING....

I know this is an old thread but i have recently joined and had suspicions myself that my Dad who was dx with Parkinsons at 45 may have celiac too. He was also an alcoholic and has been sober for 12 years and beer was one of his faviriots thus the connection with celiac. I was so excited that i found this thread. I think my Dad is suspecting he may have celiac because he wants to go to a support group meeting with me.

But it is so hard to talk to both of my parents about the celiac because they both are in denail. I suspect my mom has celiac on her side too because she has type II diabetes and has many DH symptoms.

I often wonder if the celiac had some connection to me getting Leukemia??? I really think there was a connection to be honest.

wow I really think this is amazing, scary and hopeful at the sametime.

I recall my Dad had read the Michael J. Fox biography and my Dad said Fox was an alcoholic too???? so you wonder if ingesting all that distilled alcohol and beer and if you are a celiac can cause the Parkinsons???I think I may talk to my Dad more after I do more research so he doesn't think I am crazy. I am not thinking I can cure my Dad's Parkinson's but it would be interesting if he went on a gluten free diet if he felt better overall.

I am so happy I have finally been introduced to this Message board.

Abbie

[CarlaB]

I have two copies of the gluten intolerant gene, so one from each side. It's quite obviouse who each of these genes came from. My grandmother had all kinds of digestive issues and "food allergies," which were diagnosed by Mayo Clinic. She later got Parkinson's Disease. She also had bad migraines and iron-deficiency anemia.

My grandfather on the other side had acid-reflux, cancer of the esophogus, constant stomach problems, and addiction to wheat bread, bad joints some of which were replaced, and was diagnosed with candida.

It seems that there could be many diseases linked with celiac. My guess would be the constant deficiency of nutrients would be a huge factor. The other question I have always had is, if diagnosis of celiac is defined as either atrophy of the villi of the intestine, or dh, then what other areas of the body could show damage which could confirm celiac? It's not like skin and the intestines are closely related or are the only places damage occurs.

[lapetit8]

Wow, this is interesting. My father has Parkinson's Disease, but not the shaking/tremors kind. He just gets very stiff at times and has some of the other symptoms. And he has shown positive on some of the tests for Celiac Disease, however, he refuses to go on the gluten free diet or be further tested.

[utdan]

That is exciting. My father also developed Parkinson's and said his digestion was wrong. If there is a seretonin link to celiac disease I'm further proof of that. I have obssessive-compulsive Disorder (seretonin deficient) and some bouts of depression. I also find it hard to concentrate or focus. I have very slight upper body muscle tremors when exercising. I'm 30 yrs. old and have only known about my gluten intolerance about 6 years. The point being is that gluten didn't cause me Gi problems that much. Actually the neurological symptoms is what put me on the hunt to find what was wrong. I get severe anxiety and experience depression after eating gluten. I found out opiods (drugs in the family of morphine) are a tiny part but still come out of digesting gluten.

Something else that might be considered are "excitotoxins." L-glutamate - is an important nerotransmitter but is associated with part of Celiac reaction. Too much of it can be bad for some people (look at MSG). When it's not regulated well problems can occur (brain cells die) when the cells are overstimulated by it. It associated with Parkinson's patients. They find too much glutamate (among other things) in patients' brains after death and see that it causes cell death in certain areas. In addtion, glutamate also has been found plugging up the blood-brain-barrier inhibiting glucose from getting to the brain. There is a very very interesting link here on what the glutamate molecule does to us, and what diseases are now being connected with it. On the one hand it is the most abundant neurotransmitter in the brain, but yet it is also connected to Parkinson's and is part of the process of that causes Celiac Disease Immune reaction (I will explain if asked).

[Lisa]

One question: How do you dx Parkinson?

Lisa

[abbiekir]

That is exciting. My father also developed Parkinson's and said his digestion was wrong. If there is a seretonin link to celiac disease I'm further proof of that. I have obssessive-compulsive Disorder (seretonin deficient) and some bouts of depression. I also find it hard to concentrate or focus. I have very slight upper body muscle tremors when exercising. I'm 30 yrs. old and have only known about my gluten intolerance about 6 years. The point being is that gluten didn't cause me Gi problems that much. Actually the neurological symptoms is what put me on the hunt to find what was wrong. I get severe anxiety and experience depression after eating gluten. I found out opiods (drugs in the family of morphine) are a tiny part but still come out of digesting gluten.

Something else that might be considered are "excitotoxins." L-glutamate - is an important nerotransmitter but is associated with part of Celiac reaction. Too much of it can be bad for some people (look at MSG). When it's not regulated well problems can occur (brain cells die) when the cells are overstimulated by it. It associated with Parkinson's patients. They find too much glutamate (among other things) in patients' brains after death and see that it causes cell death in certain areas. In addtion, glutamate also has been found plugging up the blood-brain-barrier inhibiting glucose from getting to the brain. There is a very very interesting link here on what the glutamate molecule does to us, and what diseases are now being connected with it. On the one hand it is the most abundant neurotransmitter in the brain, but yet it is also connected to Parkinson's and is part of the process of that causes Celiac Disease Immune reaction (I will explain if asked).

These are really interesting points you have made!!!???!! I am 32 years old and the last two years have noticed muscle spasms-everywhere more so in my legs and butt and twitching in my fingers occasionally. I thought it might be the antidepressants that I have been on for years and years and the tremors seemed to occur when they increased my antidepressants. Anyhow since i have been even more vigilant about being gluten free i have been able to decrease my antidepressants!!! and have tolerated it well AND the twitching/muscle spams have lessened. So this has been evidence for me that gluten is something to avoid at all costs

But a side note it scares the poop out of me when i get the twitches because my Dad was so young when dx.

Anyhow I totally relate to your connection between the gluten and the anxiety and depression. My journey began due to my stomache being sooo bloated- i had felt depressed for sooooo long since i was an adolescent that it became "normal"

I see myself so much in my Dad that without a doubt I know he has celiac. The indigestion, gas, bloating, - he is anxious hence maybe thats why he used the alcohol to medicate- and he stares off into space like I remember doing when i ate gluten. When i would digest gluten i could actually feel the depression come over me like a wave of some sort it was the most bizarre feeling.

So YES please explain the Parkinson/ Celiac connection. And can you clarify what you mean by your last sentence because how I am interpreting it is that you have Parkinson's first and then develop celiac?? I know I may be interpreting wrong???

Well side note I made my Dad dinner tonight and took it over to him and it was gluten free!! I serously need to talk to him about this.

This has got me so fired up right now about how the food we eat can cause so much illness and death.

Thank you so much for the responses from everyone!! I know this was an old thread and I wasn't sure if anyone would respond but I am so thankful it has come alive again- its soooo appreciated

[utdan]

Thank you Abbieker for knowing what I'm talking about. I know what you mean about that bizzare feeling after eating gluten---it's as if someone invented a potent drug to make you depressed and put it in the bread.

Actually I don't have Parkinson's, my Dad did. I have something called "Ideopathic tremors" (doctor language = we don't know why your muscles shake). It's a very unnoticeable tremor that only happens when I do sit ups or lift weights. Parkinson's and tremors are two different conditions, thankfully. But the two have involuntary muscle movements or uncontrollability to some degree. This is extremely interesting! Parkinson's is associated with glutamate somehow screwing up the dopamine production (another neurotransmitter) in the brain. Without dopamine muscles can't relax. At the same time Glutamate is an "excitatory amino acid" that can over-excite brain cells (to death actually). It's primary role is to transmit motor movement messages around the brain (hence improper functioning or concentrations result in symptoms). I've read today online that excess glutamate will cause reductions in seretonin as well (there we have depression, OCD, and reduced cognitive function).

Just to make sure to be clear about the difference between gluten and glutamate.....gluten is this huge protein that is a chain of hundreds of amino acids long. Glutamate is much smaller as it is just one amino acid. However, glutamate (at least uncontrolled glutamate) seems to be the evil part of gluten and MSG! A word of warning, MSG has been said to be in most grocery store items (no suprise). Also Glutamate is naturally occuring in some vegetables like tomatoes.

If you want to hear the technical point of how glutamate is associated with the Celiac Immune Response then I'll be very glad to explain it. I didn't know if that's what you were asking. I can REALLY relate to your depression being so common that it is "normal."

A quick question.....I experience myself many times as having too strong of emotions. For instance...when something is a serious issue I get way too serious. Funny things are too funny compared to what others reactions, etc. Sometimes when I explain something I care about I am way way too serious about it. Do you or anybody else experience this?

[debmidge]

Another related disorder "restless leg syndrome"

My husband's restless leg syndrome increases when he is on serritonin uptake or reuptake anti depressants. There has to be a connection between celiac disease and these neurological motor diseases.

[lapetit8]

One question: How do you dx Parkinson?

Lisa

Parkinson's Disease is usually diagnosed when other neurological conditions are ruled out and a PET scan is performed to confirm the diagnosis.

[debmidge]

What is the procedure for a PET scan? Is fasting involved? How long does it take? Do they inject anything into you? Do you have to drink something?

[MATTW]

WITH RESPECT CELIAC DISEASE & PARKISON'S HERE IS MY EXPERIENCE....

1990-1995 FOUND MYSELF WITH GROWING INTESTINAL PAIN; FREQUENT COLDS; ALLERGIC ATTACKS; ALLERGY DOCTORS TOLD ME I WAS ALLERGIC TO COW DAIRY AND VARIOUS FORMS OF TREE AND FLOWER POLLEN.

1995-1999 FELT TIRED ALL THE TIME; DISCOVERED I HAD A THYROID PROBLEM; I NOW TAKE SYNTHROID

1995-2000 WENT OFF COW DAIRY TO SOYMILK; SOY YORGURT; RICE MILK; GOAT AND SHEEP CHEESE; FOUND IMMEDIATE RELIEF FOR A WHILE, BUT BY 1998 I WAS BACK WITH EVEN MORE SEVERE INTESTINAL PAIN.

2000 911 TO HOSPITAL; FOUND PASSED OUT IN MY HOUSE; ADMITTED TO HOSPITAL AND TOLD I HAD ALMOST NO

IMMUNE SYSTEM; CONTRACTED A VERY SERIOUS DISEASE...WHICH I BEAT.

2000-2001 INTENSTINAL PAIN CONTINUED; WENT FROM TRAVELING NEARLY 100,000 MILES A YEAR TO BARELY ABLE TO WALK 100 YARDS FROM BATHROOM. ALLERGIES, COLDS, WEAKNESS CONTINUED; NO WEIGHT LOSS. WENT TO MANY DOCTORS SEARCHING FOR A CLUE.

2002 FINALLY, A GASTRONOLGIST I WAS VISITING TO DISCUSS A COLONOSCOPY RESULT WITH LISTENED TO MY COMPLAINTS AND ASKED IF I HAD ANY IRISH BLOOD! YEP, INDEED I DO. SHE WAS THE FIRST DOCTOR IN 10 YEARS TO SUGGEST CELIAC'S AS A POSSIBILITY. I DID SOME RESEARCH ON CELIACS DISEASE AND WENT OFF GLUTEN; I FELT BETTER IN 4 WEEKS THAN I HAD IN 10 YEARS!

BUT WAIT....THE STORY GETS BETTER....OR WORSE FROM MY POINT OF VIEW.

2002-2003 OFF GLUTEN I NEVER FELT SO GOOD; NO INTESTINAL PAIN; ALLERGIES WENT AWAY; NO COLDS; FELT STRONG. THEN, I DEVELOPED A NUMBNESS IN MY LEFT HAND....SO I VISITED A NEURALOGIST.

2003 THE BAD NEWS...THE NEURALOGIST SAID YES, I HAD A NUMBNESS....BUT I ALSO HAD PARKINSON'S

DISEASE. I WENT FOR A SECOND OPINION...NOT CLEAR, SO HE SAID; A THIRD OPINIOIN...YEP, I HAD PD. SO

I WENT FOR A PET SCAN....I HAVE IT.

2003 TO PRESENT I SEE TWO DIFFERENT PD DOCTOR GROUPS AT TWO DIFFERENT TEACHING HOSPITALS; I AM IN THREE LONGITUDINAL NIH STUDIES ON PD; I AM TAKING ONE EXPERIMENTAL DRUG(REALLY A VITIMIN) AND ONE OLD ESTABLISHED PRESCRIPTION DRUG.

I TRAVEL ALL OVER THE WORLD AND HAVE MET MANY CELIACS; I HAVE NO SCIENTIFIC BASIS FOR MY VIEWS, ONLY OBSERVATIONS. MANY CELIACS OVER AGE 60 HAVE SIMILAR EXPERIENCE TO MINE; MANY HAVE PARKINSONS IN THE FAMILY AND BELIEVE THEIR PARENTS MIGHT HAVE SUFFERED FROM CELIACS; MANY ARE OF IRISH ENGLISH DESCENT; MANY HAVE THYROID PROBLEMS; MANY HAVE EYE PROBLEMS; GLAUCOMA , CATERACTS OR BOTH. ( AS AN ASIDE, MY MOTHER AND FATHER HAD THYROID ISSUES, AS DOES MY SISTER; BOTH MY PARENTS HAD CATERACTS; MY MOTHER HAD GLAUCOMA; ....AND I JUST HAD CATERACT SURGERY)

NOW THE GOOD NEWS...I WAS TOLD BY A PARKINSON/CELIAC IRISHMAN I MET IN FRANCE WHILE ON VACATION THAT HIS PARKINSON SYMPTOMS IMPROVED WHEN HE WENT OFF WHEAT. HE WAS DIAGNOSED WITH PD BEFORE HE DISCOVERED HE HAD CELIACS. OF COURSE...THIS I PERHAPS ONLY IRISH BLARNEY, AND CERTAINLY NOT

SCIENCE. I DID NOT THINK MUCH OF IT AT THE TIME....BUT THEN I STARTED TO PAY ATTENTION TO MYSELF.

IN MY CASE, MY PD IS PROGESSING VERY SLOWLY. I THINK THERE IS A RELATIONSHIP BETWEEN CELIACS AND PD

BUT I CAN NOT PROVE IT. WHEN I EAT IN A RESTAURANT...AND THEIR IS GLUTEN IN SOMETHING, I OF COURSE GET VERY SICK; BUT FOR A FEW DAYS MY PD SYMTOMS ARE WORSE; MY BALANCE AND MY DISORIENTATION. SO I PURPOSELY WENT ON GLUTEN LAST SUMMER FOR A FEW DAYS....INSANE. BUT I THINK MY PD SYMPTOMS WERE WORSE. NO OBJECTIVE MEASURE. BUT I COULD NOT FOCUS, I WAS FUZZY, SLIGHT TREMOR, ETC. PERHAPS IT WAS A PLEACBO REACTION IN REVERSE. MAYO CLINIC FOUND SOME RELATIONSHIP BETWEEN CELIAC AND BRAIN FUNCTION...PERHAPS THAT IS WHAT IT IS; BUT SO RESPONSIVE?

TO HELP THE PD I DO YOGA 3X A WEEK AND OTHER FORMS OF EXERCISE.

ONE MORE THING, I NOW HAVE NO REACTION TO COW DAIRY, TREE POLLEN, FLOWER POLLEN...ETC; SOME MILD

ITHCHING IN THE SPRING.....BUT NOTHING LIKE I USE TO EXPERENCE. NO COLDS FOR YEARS.

I WANT TO STRESS THAT I AM ONLY A SAMPLE OF ONE. BUT I AM VERY ATTENTIVE TO MY HEALTH AND ALERT TO

CHANGES IN MY CONDITION.

I AM ESPECIALLY INTERESTED IN FINDING PEOPLE THAT WERE DIAGNOSED WITH PD FIRST, AND LATER DISCOVERED THAT THEY WERE CELIACS.

[Fiddle-Faddle]

Someone should contact Michael J. Fox and see if they can get him on board here. I am betting that he has celiac--i remember reading that prior to his onset of symptoms of Parkinson's, he drank an enormous amount of beer and ate nothing but pizza for months on end.

[elye]

Wow....I was SO pleasantly surprised to see my post from so long ago back up here! I read with great interest. I first started this post a year and a half ago, and not much has changed. My dad did have the celiac blood panel run, and it was "negative". But we all know how common false negatives can be, so really it means nothing. I know my dad is celiac. It kills me to see him on all of these drugs (Eldopa, etc.), to slow down the muscle degeneration and atrophy, and those shakes, when a dietary change could reap miracles. My parents are in a retirement residence, and have their meals prepared for them. Lots of gluten in their lunch sandwiches, waffle breakfasts, and gravied dinners...

[kenlove]

I was treated with Parkinsons meds before they figured out the celiac connection. There was a time I could not focus on my leg it was shaking so bad. Spent a week in bed unable to walk during the 6 months it took to diagnose the celiac. Once they figured it out I stopped all the meds and gluten and am back to normal. The doctor said there was a connect but never elaborated. He also mentioned the connection with autism, lupus and other disorders. Obviously I was glad not to have parkinsons but the thought was more scary than celiac when this happened 2+ years ago.

Ken

Wow....I was SO pleasantly surprised to see my post from so long ago back up here! I read with great interest. I first started this post a year and a half ago, and not much has changed. My dad did have the celiac blood panel run, and it was "negative". But we all know how common false negatives can be, so really it means nothing. I know my dad is celiac. It kills me to see him on all of these drugs (Eldopa, etc.), to slow down the muscle degeneration and atrophy, and those shakes, when a dietary change could reap miracles. My parents are in a retirement residence, and have their meals prepared for them. Lots of gluten in their lunch sandwiches, waffle breakfasts, and gravied dinners...

[gfgypsyqueen]

Maybe I am off the topic here, but anyone else curious why most of the posters stated that their father had parkinsons. How come it is so many fathers? Does Parkinsons affect men more than women?

I have Celiacs. My fathers family has autoimmune diseases, but the mention that he could possibly benefit from this crazy diet starts one heck of a fight. Amazing to me that someone would arugue so hard when you are presenting information that might make his life better. Currently he is having a very hard time with the shakes, tremors, dizzy spells, etc.