Are there any people with Parkinson's who have been diagnosed as being celiac?
I am looking into the possible role that gluten may have in the onset of Parkinson's. if you have been diagnosed with having celiac disease or can not tolerate wheat, would you please tell us?
A friend of mine told me her primary physician told her it can be a precursor to PD! Research the Internet though for yourself and then take that information to your Neruo.
Thank you Racing Chaplain,
I have read several times that gluten intolerance can be involved in Parkinson's manifesting. The trouble is, most of us can go through life with an allergy say to gluten and even dairy but never get a diagnosis, but who eventually develop Parkinson's for which they attribute all the symptoms to this condition.
Thank you again. Perhaps one day you will tell us the origins of your name on this site, it is intriguing!
It is an interesting correlation, since new studies have found that the damaging protein that attacks the brain in Parkinsons has been found in the intestinal walls and is believed to travel from there to attack the brain. Could the symptoms of Celiac indicate the presence of this protein? hmmmmm
I have visited a website that is run by a nurse who coaches people with celiac disease; she believes there is likely to be a connection. It will be interesting to see what response we get in this thread.
I'm finding that the new information coming out now about the relationship between the gut and Parkinsons to be fascinating and plausible. I am not Celiac, but have mimicked symptoms for years; had a bleeding ulcer 25 years ago and have had "stomach trouble" ever since. I've not been able to take SinemetCR because of nausea. So, I will be one of the first to endorse the connection between gut and brain; I've lived it.
I think that there are many people like you who have lived with digestive problems for many years. May I suggest that you go to Amazon.com and look up the book 'wheat belly'. Just read the first several reviews of this book and you will probably be able to relate to some of what has been written. May I also ask you if you have been tested for Helibactor Pylori? If not please consider doing so to see if this is implicated.
I DEFINITELY believe Parkinson's starts in the gut, but not necessarily celiac. Going gluten free made me very sick.
Thank you PatV,
I am very interested as to why going Gluten free made you sick. Probably a withdrawal symptom. How long did the sick feeling last, are you still Gluten free and has it improved any Parkinson's symptoms. Rather more difficult to tell is, I believe that by going Gluten free, particularly if allergic to it, that it could help your diet to be more neuroprotective.
Tank you for your response.
I do not view severe constipation as a withdrawal symptom. I was tested and I am not sensitive to gluten. I am not allergic to anything. I do believe white flour, sugar and milk are problems and I have to keep them to the bare minimum.
Doing FODMAPs as well did nothing for my PD symptoms, but got rid of a severe pain in my lower left ab, but left me SEVERELY constipated as well.
I hear what you have said about you not being allergic to anything, so changing your diet did not affect your PD symptoms, but there must be lots of PwP who do have allergic reactions to one level or another of gluten (and dairy for that matter) who would be better off in the long term if these allergens were dropped from their diets.
I have read that blood type dictates how strong and or sensitive your digestive system is. The type O blood type has the strongest constitution......the first blood type with the caveman ( meat eaters). Types B, AB, etc began during the agricultural age and they ate more vegetables....their constitution is not as strong. I don't know if this is really true...but I am a type O and rarely have digestive problems or allergies for that matter......
Good to receive a response from you BMakla54,
That's an interesting theory and I seem to recall that 'O', the oldest blood group, thrive best on a predominantly meat diet, but it would be interesting to know if such people develop celiac disease when they eat lots of glutinous grains. Like you, I am Of the 'O' blood group, but tried a macrobiotic diet many years ago and never felt well from that time on.
I am O+ and have struggled with allergies all of my life, the first noticeable being cow's milk when I was a child. I also have various animal and environmental allergies.
Like some who have already posted, I have digestive issues though surprisingly not constipation. I think that is because I follow a mostly vegetarian diet.
I did watch the webinar today on the gut relationship to PD and have been researching since...There is so much that is unknown. I found the discussion of using the GLP1 agonist used to treat type II diabetes also interesting. My family has a long history of both type-l and type-II diabetes. I know there have been discussions here regarding the relationship between the two.
There is much that we do not know...
Thank you Susie01 for your input,
I believe that the increase we are seeing in the number of people getting diabetes2 nowadays is primarily because of diet. We are eating food that has been processed so much that it is difficult for our bodies to digest it in the way that nature intended. It appears that about 10000 years or so ago, when humans started to farm that new to us food items were introduced into our diets thus leading the way to much of the ill health we have experienced ever since and increasingly so. It is my intention to open up a new blog sometime soon addressing these points.
As an RN, I was a "Certified Diabetes Educator", nol an easy notification to recieve. Even then, there were certain populations that were more likely to develop diabetes. My maternal grandmother was very slim and body conscious, but did develop type I diabetes. She died in DKA.. Many other relatives have either type I or type II diabetes. Today's webinar opened a lot of questions for me. My last A1C was elevated; I do want to follow up on this.
Thank you again Susie01,
Being non medical myself I have to own up and say that I do not know some of the terms you have used, but I do get very much that it is a concern of yours, given you family history. Personally, I believe that many of us rely too heavily on tablets to alleviate up symptoms whilst not addressing our health problems at a more fundamental level in addition to taking our medication(s). When I feel that I have sufficient information to write a blog, you will hopefully be able to contribute.
i think its a good idea to giveup gluten;;v badfor digestion a problem with everyone as we age!
read gut reaction by gudrunnJonsson;;im going to see her in london soon; will keep you posted;
Thank you Hilarypeta,
From my understanding gluten is not good for a great proportion of us, but many people with digestive problems are not aware that this particular protein can be the cause. I bought the book 'gut reaction' on your recommendation in another thread some months ago. Another book that I have not read yet, but have looked up the reviews on Amazon. Com is called 'wheat belly'. Anybody viewing just three or four of these reviews will be surprised at the adverse effects wheat gluten can have on us. I look forward to hearing how you get on in London.
Thanks...milk gluten and sugar seem the worst enemies...and stress! Exercise..qi gong liver cleanse works for me as well!
Didnt michael fox say he was surprised when his symptoms eased when in india..he put it down to no gluten in his diet there?
Hello again Hilarypeta,
Two great points you make. Nobody has mentioned the liver until now, but many people have overloaded livers which can be the cause of quite severe illnesses. What is of concern is that if you have an overburdened liver and add to that several or more medications it can only stretch this vital organ even more. There is an excellent book called 'the liver cleansing diet' by Dr. Sandra Cabot which, if followed, will improve most people's health. You are right to mention Michael J Fox's experience in Bhutan when he lived for several weeks on a gluten free diet and noticed a perceptible lessening of some PD symptoms.
Thank you for bringing these points to our attention.
Norton, have you seen the latest webinar by Parkinsons Movement? It is very interesting on the relationship between the gut and Parkinsons. I was interested to hear that one of the genes LRRK2 connected with Parkinsons has now also been connected to chrons disease.
I certainly find i have to be very aware of diet now ??
No, I did not see the webonair by the Parkinson's movement mainly because I did not know of it and I am virtually computer illiterate anyway. Is it something I can still view/hear now?
Yes, I firmly believe that food and how we digest it definitely affects this syndrome we have.
Maybe we can not reverse our symptoms, but surely we can affect the speed at which it progresses and I do not mean by medication alone.
I am thinking of writing a blog about the possible importance of food in our lives.
Good to hear from you again.
I am very interested in this thread. My husband, 43 is currently facing a PD diagnosis due to rest tremor. There is no history of PD in his family. At the time of onset of his symptoms his chronic heartburn of 10 years was at it's all time worst. He also developed bothersome imflammation in his wrist at that same time with no known injury. These coincidences prompted me to do some research. I was blown away reading all of the neurological associations of CD as well as anecdotal cases of people having been diagnosed with PD only later to be re-diagnosed as celiac. My husband tested negative for the gluten associated antibodies, however I do question the accuracy of these tests have read that there is a possibility for false negatives. Despite the test, he has been on a gluten-free diet for 5 weeks now. He hasn't noticed any change in the tremor, but he has had very little heartburn and the imflammation in his wrist, which bothered him for 8 months has completely resolved!
I would love to hear of other's experiences and research on this topic. I have been doing so much reading on CD and Parkinson's / neurological issues, that the mounting evidence is so compelling.
I have had PD for two and a half years and been diagnosed for 18 months. As I only have a slight tremor in my right arm I decided not to go on tablets but to go to a nutritionist. She is now exploring the connection between PD and gluten sensitivity having been to a conference on this - I am having a test after Christmas to check whether gluten is having a reaction in my brain - it is done by a company called Cyrex and is a BBB Test which I think is brain blood balance. This is all very interesting - I will have the test then immediately start taking gluten out of my diet and see what happens.
Thank you for your post sue2000web. BBB means blood brain barrier.. I am sure that there will be many of us interested in how you get on with your test results and ask if you update us from time to time on your progress. Dairy products have also been implicated as a risk factor in developing PD, so keep that in mind too!
It is interesting that you use the word inflammation in your post. Although this thread talks about celiac disease and your husband tested negative for gluten antibodies, I think that you should widen your search for other possible causes for the cause of his health problems. It is considered by many people that inflammation is involved/causes many chronic health conditions and it would be wise to address through his diet. As well as eliminating all glutinous grains it may prove beneficial also to omit dairy produce. Don't worry, there are still many foods that allow you to eat a varied, healthy diet. May I suggest you investigate the Paleo (caveman) diet which many times has been found to improve people's health. If he does get a diagnosis of PD, this is rather more difficult to address. It is considered a progressive disease that may eventually require medication, but by watching what he eats it may be possible to slow its progress.
I found this most interesting,
Our Second Brain
In recent years the link between the nervous system and the digestive system has been recognized. There is a constant exchange of chemicals and electrical messages between the two systems. In fact, many scientists often refer to them as one entity; the brain-gut axis. Therefore, what affects the stomach will directly affect the brain and vice versa. Medications designed to target the brain can also cause nausea, diarrhea, constipation or abdominal upset because the body actually has two brains – one encased in the skull, and a lesser known but vitally important one found in the human gut. Fat-soluble drugs penetrate the gut wall and can injure the natural balance of the digestive system. Antidepressants, benzodiazepines and sleeping pills are all fat-soluble, meaning they dissolve in fat and not water.SSRIs (Selective Serotonin Reuptake Inhibitors) are believed to ease depression by enhancing levels of Serotonin to the brain. But 95% of the Serotonin in the body lies in the digestive system, and diverting the supplies of Serotonin from their natural receptors can increase anxiety, alter sleep patterns, cause sexual dysfunction and adversely affect the cardiovascular region. Balancing the hotbed of Serotonin production in the gut is critical to restoring the balance.
These Two Paragraphs especially...
Nearly every chemical that controls the brain is also located in the stomach region, including hormones and neurotransmitters such as Serotonin, Dopamine, Glutamate, GABA and Norepinephrine. The gut contains 100 million neurons – more than the spinal cord. But there are also two-dozen small brain proteins; major cells of the immune system; one class of the body’s natural opiates; and native benzodiazepines. The gut, known as the enteric nervous system, is located in sheaths of tissue lining the esophagus, stomach, small intestine and colon, and plays a key role in human emotions. But few know the enteric nervous system exists, and therefore gut health is often overlooked. Symptoms from the two brains can get confused, and just as the brain can upset the gut, the gut can also upset the brain.
The brain signals the gut region by talking to a small number of command neurons, which in turn signal relay neurons that carry messages and control the pattern of activity in the gut. The term Solar Plexus simply refers to the nerves in the abdomen. But these plexuses also contain cells that nourish neurons and are involved in immune response and the protection of the “blood brain barrier” to keep harmful substances away from the important neurons. There are also sensors for sugar, protein, acid and other factors that monitor the progress of digestion, determining how the gut mixes and handles it’s contents.
I now understand why coconut oil helps with PD, it acts like a probiotic, helping to normalize gut function which gives the cells in the digestive system fatty acids which helps the mitochondria cells.
Great to hear from you again Vjessv. Yes, we mostly concentrate on the brain thinking that all the neurotransmitters are there forgetting as you imply that the digestive system is considered by many scientists consider it to be the second brain. Clearly diet is vitally important and too many of us disregard it, preferring to concentrate on medications. As you know, MS is a neurological condition and Dr. Roy Swank had great success in treating patients with this condition and one of his basic treatment conditions was that they had to adopt a gluten free diet.
Thank you for your excellant contribution, which many PwP will find it of interest.
You are right, That's where the term 'gut feeling or i have a gut feeling comes from.
Also 70% of the immune system is in the digestive tract,
For all that i've read recently, the Liver and more so the digestive tract are the two most affected.
If you get them working optimally it could start to make a difference to overall health.
Jack Kruse is a Neurosurgeon
Gut Brain Axis.
He Believes that the 'diseases that currently have no cure or known cause will be tied to this axis eventually. Diseases like amyotrophic lateral sclerosis (ALS), MS, Lupus (SLE), Rheumatoid Arthritis, Autism, Depression, Crohn’s disease, Parkinson’s disease and Alzheimer’s disease to name a few.
At the end of the article he also ties in what you said about gluten.
This is a very good article worth reading.
Levee 5 : click on to read also.
Another good article you have directed us to. I've read it and must admit that this is the first time I've come across this website. In fact I shall be visiting it frequently. You mention the liver, a much overworked vital organ. Anything of synthetic origin surely must put it under strain also it is my belief that a rich diet does too. I've adopted a vegan diet since last October in order to eat simple, natural foods. I can not truthfully say that I have reversed any of my symptoms for I have not, but I'm hoping that it will help me minimise my medicine quantity in the future.
Keep posting, for you bring another dimension in what you research.
i've also read that if you take 6g of tyrosine a day it will raise your dopamine significantly,
but if you're gut function is compromised this will not happen, or if you suffer with gluten Sensitivity
and you don't heal the Gut Dysbiosis you will always suffer with gluten Sensitivity.
From the michael j fox foundation
they did a study called:
Is Parkinson’s Disease a Low-grade Inflammatory Bowel Disease?
this was the outcome.
Relevance to Diagnosis/Treatment of Parkinson’s Disease:
In view of recent findings, the gut appears as a primary target organ in PD. The gastrointestinal tract is the main area of exchange between exogenous factors and host neuronal and immune cells. Preliminary profiling of inflammation in the gut as proposed in our survey is a prerequisite for pursuing research in the field of inflammation in PD. This will set the basis for further investigations addressing the causative role of intestinal inflammation in PD.
We anticipate that the present study will demonstrate that the main pro-inflammatory cytokines and glial markers are up regulated in the gastrointestinal tract, thereby suggesting that inflammation is present within the gut of PD patients.
I just thought i would add this as well.
If you remember there was the PPQ supplement, i found no testimonials from PwP using it,
also it was rather expensive, D- ribose is very similar in its action and a quarter of the price.
Ribose is a carbohydrate, or sugar, used in the cell to make adenosine triphosphate (ATP). ATP is extremely important, as it's the energy unit that fuels our cells and bodies.
It does not raise blood sugar levels or lead to diabetes. Ribose is a fundamental building block of adenosine triphosphate (ATP, the substance in which the body stores intracellular energy), the preferential source of energy for skeletal muscle and heart tissue.
Studies have shown that ribose supplementation can enhance cardiac energy levels and support cardiovascular metabolism.
D-ribose is an essential component in our bodies' cellular energy management systems. Additionally, it provides antioxidant, anti-inflammatory, and gene regulatory capabilities.
Thank you again Vjessv
The question in this post of yours asked : is Parkinson's a low grade inflammatory disease?
Judging by your previous posts yesterday and today I can quite well believe it can be one cause.
Speaking for myself, many years ago I underwent tests and investigations of my digestive system. The result was that there was evidence of inflammation. Strangely enough I had been eating lots and lots of salad and fruit. The specialist told me to 'eat more rubbish' and discharged me. Twenty five years later I developed parkinsons.
Incidentally, you mentioned L Tyrosine. Have you heard of the product 'Dopavite'. It has L Tyrosine in it, but also has a relatively high amount of iron which some people believe too high.
I think there's a number of products out there that might help a small number of people in placebo but not all to help attain complete wellness, which is our major stumbling block.
Did the specialist give you any information for the reason why your digestive system had inflammation also
Do you think that it should be a standard test done for people diagnosed with PD, if only to ascertain there might
be a connection?
As you know Norton1 i read too much,
Mental illnesses of the gut
A growing realisation that the nervous system in our gut is not just responsible for digestion (see main story) is partly fuelled by discoveries that this “second brain” is implicated in a wide variety of brain disorders. In Parkinson’s disease, for example, the problems with movement and muscle control are caused by a loss of dopamine-producing cells in the brain. However, Heiko Braak at the University of Frankfurt, Germany, has found that the protein clumps that do the damage, called Lewy bodies, also show up in dopamine-producing neurons in the gut. In fact, judging by the distribution of Lewy bodies in people who died of Parkinson’s, Braak thinks it actually starts in the gut, as the result of an environmental trigger such as a virus, and then spreads to the brain via the vagus nerve.
Likewise, the characteristic plaques or tangles found in the brains of people with Alzheimer’s are present in neurons in their guts too. And people with autism are prone to gastrointestinal problems, which are thought to be caused by the same genetic mutation that affects neurons in the brain.
Although we are only just beginning to understand the interactions between the two brains, already the gut offers a window into the pathology of the brain, says Pankaj Pasricha at Johns Hopkins University in Baltimore, Maryland. “We can theoretically use gut biopsies to make early diagnoses, as well as to monitor response to treatments.”
Cells in the second brain could even be used as a treatment themselves. One experimental intervention for neurodegenerative diseases involves transplanting neural stem cells into the brain to replenish lost neurons. Harvesting these cells from the brain or spinal cord is not easy, but now neural stem cells have been found in the gut of human adults (Cell Tissue Research, vol 344, p 217). These could, in theory, be harvested using a simple endoscopic gut biopsy, providing a ready source of neural stem cells. Indeed, Pasricha’s team is now planning to use them to treat diseases including Parkinson’s.
-by Emma Young, New Scientist
Disagree, you don't read to much, I find this discussion stimulating. Pity though that it is in an old thread. I believe more people might read it had it been opened in its own 'new thread'. I know that you do not have Parkinson's yourself, but you have every right to contribute your perspective, by opening up your own threads, which brings another dimension to us all.
To answer your question, no, the digestive specialist 's directive to eat more 'junk' food was not that helpful. As I said previously, at the time I was eating lots of 'healthy salads and fruit', from my perspective now, many years later, I think that I was suffering from nutritional deficiencies caused by eating too much of this type of food. So, I took his advice to eat more 'junk' food and continued with digestive problems for the next 25 years, or so.
There are many theories as to what causes Parkinson's, but, for me, the main cause is diet. Each of us takes the outside environment mostly through our mouths, in my opinion. Yes, I know that we can also breathe in toxins and take chemicals in through the skin, but look at all the crappy food on offer to us since industrialisation. Like many other health conditions, I think that many cases of Parkinson's are caused through affluence, by what we ingest.
I does not surprise me at all that Lewey bodies are also found in the digestive system as well as the brain. Nor do I believe that cholesterol deposits around the heart, requiring 'by-pass' operations are only localised there and not elsewhere in our bodies, such as the brain and lower legs. Our medical specialists are too specialised and do not appear to look at the bigger picture. If I had my way, the main body of specialists, by far, in our NHS, would be dieticians, then probably we would not require so many 'other' specialists who treat our bodies as parts rather than one whole organism.
I would be pleased to hear counter arguments.
You Vjessv are good for this site, I'm pleased you 'visit' here.
Maybe i should start a new thread with this question.
from the michael j Fox Foundation.
Central and peripheral inflammations are likely to be critical in the initiation and/or development of PD. Data from recent genetic studies suggest a link between PD and gut inflammation. Whether gastrointestinal inflammation occurs in PD patients has not been addressed yet. Thus, our study aims at determining whether the major pro-inflammatory cytokines are up regulated in the gastrointestinal tract in PD and whether their expression levels correlate with neurologic or digestive symptoms.
Colonic biopsies used for the present study (2 in the ascending colon, 2 in the descending colon) have already been performed in 19 PD patients, 14 control subjects and 6 patients with progressive supranuclear palsy and multiple system atrophy. Each PD patient had a neurological (disease duration, UPDRS III score, cumulative dose of levodopa) and gastrointestinal assessment (Rome III score). The mRNA expression levels of pro-inflammatory cytokines (tumor necrosis factor alpha, interferon gamma and interleukin-6, interleukin-1 beta and interleukin-17) and glial marker (Glial fibrillary acidic protein, Sox-10 and S100-beta) will be analyzed by qPCR in two-pooled biopsies. When positive, the results obtained by qPCR will be confirmed at the protein level either by Elisa and/or Western Blot.
Has anybody Heard of Serrapeptase?
I found that I had to re read this last post a couple of times to understand it and even now, I find it difficult to try and fully comprehend it. It makes me wonder just how many of us have sufficient determination to get into it. At 68 years I still have sufficient drive to do something about my having PD. I can see some older PwP's eyes glaze over when trying to understand it.
I think your question about has anybody heard of 'serrapeptase'is far more interesting and if asked as a question given with a little information would generate some interest.
Keep up the good work.
My neurologist proscribed a gluten free diet she thinks it will slow down the progression her thought is that the only cells in your body that do not regenerate are your brain cells so if you eat "crap" as she put it it's like you are abuseing them and of course they are going to react so yah
I am 55 years old and was diagnosed with Coeliacs disease about 6 years ago... This was long-term undiagnosed (lifetime) so I have a cascade of other auto-immune related problems too. I suffer from balance problems and I went to PD specialist after exhibiting classic 'pill rolling' symptoms and developing shakes and nodding. It still amazes me that the consultant said 'You don't have PD' within 5 seconds of me walking through the door. He did go on to diagnose me with Essential Tremor and got me to eradicate caffeine from my diet.
As a long term undiagnosed coeliac your body not only attacks the proteins in wheat but similar proteins in the cells of your body. This is on top of the malnutrition you suffer due to damage to gut villi. At the extreme end of the scale their is Gluten Ataxia where the defence mechanisms of the body attacks parts of the Hippocampus that possess similar makeup to the proteins in gluten. This can affect balance and cause shaking amongst other things... This damage can be halted with a strict gluten free diet but I am not sure it can be reversed, at least all references I have found do not indicate that is possible.
Can Coeliacs disease affect the 'mind node' seated in the gut? I have no idea but given the fact that it can have a profound effect on the Hippocampus it would be more than likely that there would be some effect on a major nerve cluster seated at the root of the problem - the gut! Perhaps someone out there needs to consider this as a research opportunity.
As a baby i failed to thrive with chronic malabsortion and diarrhoea. I also had one chest infection after another for which I seemed to be continually on courses of antibiotics, including tetracycline, which stained my developing second teth. Doctors thought I had cystic fibrosis up until about 10 years old. I continued to have regular diarrhoea into my adult life,controlled by Nutrizym 22 pancreatin. Then suddenly, at the age of 42, my left leg started dragging, i had no energy,had stiffness and slow movement and my handwriting became illegible (a big problem for a teacher)! I was diagnosed with parkinson s and started on L Dopa straight away so I could hold down my job as an English and Drama teacher, and support my family (i had a 2year old baby). After 16 years on L Dopa, I am now crippled with dyskenesias and longer and longer off periods when meds no longer work. I don't know which is worse. But both can be very frightening. I' ve always been a big bread eater. I think the doctors in the early 60's didn't consider celiac. Furthermore, I believe all those antibiotics destroyed my intestinal flora (good bacteria in my gut) leading to a leaky gut allowing toxins past my blood brain barrier causing my immune system to attack my central nervous system. I put this to my neurologist who just laughed and dismissed it and told me go stop reading the internet!!! So I did it alone. Just 3 weeks ago, I stopped eating bread, pasta, pizza, pies, cake and biscuits and lo and behold! After 3 weeks and 2 days, this morning my brain fog cleared as well as my blurred vision. And I feel i have more energy. I know it's only early days but it has given me a glimmer of hope. I have also started started to eat fermented foods like sauerkraut and kefir (sour milk) TRY IT! I SWEAR IT'S WORKING FOR ME. The modified wheat we eat today is nothing like the wheat of our grandparents. Gluten is toxic. Obesity is not caused by too much fat, but too much wheat and gluten. Good luck to anyone reading this.
My member name is cupcake 1960
REM and signs of Parkinson's. I have PD my self so we know what to look for, he has been to see the specialist...
doesn't slow or cure Parkinson's? Would I be prescribed medication immediately when I have no other symptoms...
one. If you are a vegetarian and eat animal products, like dairy, eggs or fish, then please don't respond...
Start a Community