Title: possible Environmental Impact of diet and medication on the onset of MSA symptoms:
Question, Did anyone:
1. Have celiac or gluten intolerance?
2. Take antibiotics?
3. Have stomach pains similar to IBS?
4. Take any form of antidepressants?
5. Take Omeprazole?
... in the years leading up to MSA.
Reason for asking these questions is that I have read that changes in gut microbiome (bad bacteria and inflammed gut lining) may be implicated in the cause and ongoing symptoms of MSA.
What we eat (food and medication) has an impact on our gut microbiome and also our mitochondria, but there doesnt seem to be much data on the diet and medication of MSA patients in the years running up to being diagnosed with MSA?
Ive read that the gut is linked to the brain via the Vagus Nerve and that it is possible that bad gut bacteria can make its way up to the brain. When you consider that antibiotics kill good bacteria (as well as bad) and that more neurotransmitters (such as Serotonin, Gaba and Dopamine) are made in the gut by the microbiome, than in the brain, it is not such a crazy notion that what we put into our mouth, may well be the cause of neurological disease such as MSA.
Look forward to your replies...
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Juliehabib
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Hi Julie, please could you tell us a bit more. Are you doing a research project on this as part of an academic course or is this for personal interest?
Hi this a personal interest research as my brother was diagnosed with MSA last year . We have been working with intense physio regime and diet . But we are interested in the onset symptoms and what occurred leading up to onset as there isn’t much data on patients . Thanks for your reply .
Hi Julie, this year my husband's possible diagnosis has moved from Parkinsonism -probable rigid Parkinson to MSA-P and although I am sure he has had the odd course of antibiotics I don't think any of the others on your list apply.
I know there is a lot of interest around links with gut health and Parkinson and like you I wonder why/when did all this originate. Lets hope we get some answers soon.
Hi Diana thank you for your reply . Yes my brother had the TG6 gluten sensitivity test . He went gluten free and his stiffness in joints has cleared up . He is focusing on probiotics and gut health atm but it is all still early days to tell the results . There is a massive link between gut and brain and the fact they have no cause or cure yet suggests this is possible that the gut is heavily involved in this illness . We are researching constantly .
As my brother hardly left the house in the years running up to his symptoms and diagnosis, the only plausible exposure to toxins is from his sensitivity to gluten and subsequent autoantibodies to TG6.
Microbiome changes to his guts ecosystem, along with a leaky gut, offer plausible causation of his MSAc symptoms. Especially as it is known that MSA, PD and Gluten Ataxia patients show changes in their gut microbiome.
Mitochondria (mtDNA) and its negative response to oxidative stress caused by Reactive Oxygenated Species (free radicals!) is somehow involved in autoimmune inflammation (which is thought to be the initial stage of the disease) and subsequent reduction in Acetylaspartate (NAA) levels in the cerebellum, and later in the brainstem.
It is not clear to me whether mtDNA causes changes to the gut microbiome, or whether changes in the gut microbiome cause stress on the mtDNA. It is known that gluten can cause an increase in free radicals, so its possible that in some cases its the gut microbiome that is putting stress on the mtDNA.
I am not a specialist and have merely deduced this sequence of events from reading over 1000 articles on MSAc and Gluten Ataxia.
In our case it appears that my brothers gut problems and sensitivity to gluten are at the heart of his symptoms. Unfortunately going gluten free has eased some symptoms but there is still something going on that is putting pressure on his mtDNA, which is why we are looking closer at his microbiome with the help of a gut specialist.
This is why we are interested to know how many other MSA patients had experienced any of the 5 items listed in my original message.
Just thought i'd drop this into the forum as its a recent article that supports the hypothesis that gut microbiome is linked to the pathogenesis and treatment of MSA and PD.
Read with caution, as this has not yet been proven in a clinical setting.
There are however a growing number of other new research articles linking the gut to MSA and PD.
Will let you know how we get on after speaking with a gut specialist.
Also I’m wondering if anyone has tried Curcumin ? With MSA being linked to chronic inflammation of the nervous system this natural product could help reduce the inflammation . Has anyone tried it ?
I have tried a number of curcumin products; I have not been diagnosed with MSA. I have symptoms similar to what my father experienced early on in his MSA, which is not supposed to be hereditary, but a couple of cases of familial MSA have been reported. I don't think I have enough signs/symptoms to get a diagnosis so I haven't bothered; I have seen urogynecologist for my LUTS which is pretty much under control these days with topical estradiol.
Two curcumin products have some clinical trials to back them up are Theracurmin and Meriva. Of the two I thought that the Theracurmin provided benefit to my mood; I didn't notice anything with Meriva. Gaia Herbs Turmeric Supreme seemed to have an even better effect on mood than Theracurmin; it includes piperine which is to improve bioavailability, but piperine also has other effects of its own. There are some caveats about high doses of curcumin, including in vitro studies showing genotoxicity - don't know if this is a problem in humans:
As my brother hardly left the house in the years running up to his symptoms and diagnosis, the only plausible exposure to toxins is from his sensitivity to gluten and subsequent autoantibodies to TG6.
Microbiome changes to his guts ecosystem, along with a leaky gut, offer plausible causation of his MSAc symptoms. Especially as it is known that MSA, PD and Gluten Ataxia patients show changes in their gut microbiome.
Mitochondria (mtDNA) and its negative response to oxidative stress caused by Reactive Oxygenated Species (free radicals!) is somehow involved in autoimmune inflammation (which is thought to be the initial stage of the disease) and subsequent reduction in Acetylaspartate (NAA) levels in the cerebellum, and later in the brainstem.
It is not clear to me whether mtDNA causes changes to the gut microbiome, or whether changes in the gut microbiome cause stress on the mtDNA. It is known that gluten can cause an increase in free radicals, so its possible that in some cases its the gut microbiome that is putting stress on the mtDNA.
I am not a specialist and have merely deduced this sequence of events from reading over 1000 articles on MSAc and Gluten Ataxia.
In our case it appears that my brothers gut problems and sensitivity to gluten are at the heart of his symptoms. Unfortunately going gluten free has eased some symptoms but there is still something going on that is putting pressure on his mtDNA, which is why we are looking closer at his microbiome with the help of a gut specialist.
This is why we are interested to know how many other MSA patients had experienced any of the 5 items listed in my original message.
Unfortunately staying indoors will not shield one from toxic exposures, for example as I mentioned there's off-gassing from wall paint and probably more importantly contamination of food sources - and exposure & disease initiation is probably often decades prior to first symptoms. Though there are other potential causes - head trauma is a big one, my father for example had been an amateur heavy weight boxer in his youth.
Thanks for the information on gluten/transglutaminase; I have been reading up on autophagy as a 'double-edged sword' in neurodegeneration and this is an interesting aspect I had not been aware of. I feel I do much better when I try to suppress mTOR. I had a bad flare up a couple of years ago when I had been trying to gain muscle mass by weight training and taking protein powder supplements. I stopped doing the protein powder, but I should still be doing weight training but have not been since the pandemic and stopped going to the gym. I have no excuse really since we do have free weights and resistance bands and there's always body weight training. I do cardio on a BowFlex Max trainer, which provides some resistance training so I have not become completely 'squish' as my daughter puts it, but still.
I have been gluten free for just over a year now as my daughter was diagnosed with Celiac and I won't allow any gluten in the house. I do eat GF oats; I don't giver her any oats/oat products just in case she has cross reactivity with avenin. She had to be hospitalized for 5 weeks due to intractable vomiting; the doctors were idiots and initially misdiagnosed her with an eating disorder. It took at least 10 days to get the results of the transglutaminase antibody test. She still did not stop vomiting even though they supposedly put her on a GF diet. Then the kitchen obviously glutened her - the nurses on duty confirmed she had been given a sandwich with wheat bread and we had her released even though she was still severely underweight.
I am concerned about her developing some form of parkinsonism due to family history (my side of course, but the Celiac gene comes from her dad); from what I've seen, epidemiological studies have not found an increased risk of Parkinson's, etc., in people with Celiac. So that's good. What's bad is that when she was hospitalized they gave her Reglan and she had a bout of neuroleptic malignant syndrome as a result. It was a truly horrifying experience. I worry a lot about her. She also has oral allergy syndrome.
I suspect mast cell involvement in MSA as well as GERD and IBS - possibly triggered by gut dysbiosis and/or infection. Last year there were a couple of review papers published on mast cells in neurodegenerative diseases including PD, which called for more research - I expect there will be more research on this in future, but as yet there is nothing. Here's one of the articles: ncbi.nlm.nih.gov/pmc/articl...
As to causation in terms of what sets off the disease process in the first place, I believe it to be multifactorial with a major role in many cases for certain environmental toxicants. MSA Coalition has funded research by Beate Ritz and I am looking forward to the results of her work. Here is one of her articles on PD and pesticides:
One of her major findings involves an enzyme called PON1, which has also been implicated in autism, and its role in detoxification of pesticides and PCBs. Here's a presentation on autism and environmental toxicants where another researcher states that brightly colored wall paint can off-gas PCBs - something to put on the 'to avoid' list:
Hi thank you for your reply and information I will take a look at these papers .
Yes he has had reflux issues for years so he did take the medication for that until going gluten free ( advised by his specialist ) and this seems to have also cleared up .
Have you taken antibiotics or any of the above 5 questions before your onset/ symptoms occurred ?
in response to. GERD seems plausible as this is resolving now my brother is gluten free.
Theres some suspicion that gut bacteria and leaky gut may be a cause of neurodegeneration and so we are now working on repairing years of gluten sensitivity and the known damage that this will caused to his gut lining and microbiome.
Found a very recent article claiming to have reversed a synucleinopathy in mice by knocking out TG2.
TG2 is known to be involved in neurodegenerative disease, especially gluten related ataxia.
The only thing we have evidence of is my brothers gluten sensitivity and H Pylori causing gut issues. Since going gluten free for 6 months (so far) we have seen positive improvements in his speech, speed of movement, stomach acid reflux and joint mobility.
On the latter, joint mobility may well be affected by physio, as my other brother helps out by creating balance related physical routines.
As my brother hardly left the house in the years running up to his symptoms and diagnosis, the only plausible exposure to toxins is from his sensitivity to gluten and subsequent autoantibodies to TG6.
Microbiome changes to his guts ecosystem, along with a leaky gut, offer plausible causation of his MSAc symptoms. Especially as it is known that MSA, PD and Gluten Ataxia patients show changes in their gut microbiome.
Mitochondria (mtDNA) and its negative response to oxidative stress caused by Reactive Oxygenated Species (free radicals!) is somehow involved in autoimmune inflammation (which is thought to be the initial stage of the disease) and subsequent reduction in Acetylaspartate (NAA) levels in the cerebellum, and later in the brainstem.
It is not clear to me whether mtDNA causes changes to the gut microbiome, or whether changes in the gut microbiome cause stress on the mtDNA. It is known that gluten can cause an increase in free radicals, so its possible that in some cases its the gut microbiome that is putting stress on the mtDNA.
I am not specialists and have merely deduced this sequence of events from reading over 1000 articles on MSAc and Gluten Ataxia.
In our case it appears that my brothers gut problems and sensitivity to gluten are at the heart of his symptoms. Unfortunately going gluten free has eased some symptoms but there is still something going on that is putting pressure on his mtDNA, which is why we are looking closer at his microbiome with the help of a gut specialist.
This is why we were interested to know how many other MSA patients had experienced any of the 5 items listed in my original message.
None of the above. Mum didn't drink/smoke. Take anything other than paracetamol and hadn't even visited her GP in 20 years. Had a pretty ordinary diet. Original PD diagnosis 8 years ago. Changed to MSA in Aug 2019. Rapid deterioration from then. Her onset symptoms were very much text book PD.
Just thought i'd drop this into the forum as its a recent article that supports the hypothesis that gut microbiome is linked to the pathogenesis and treatment of MSA and PD.
Read with caution, as this has not yet been proven in a clinical setting.
There are however a growing number of other new research articles linking the gut to MSA and PD.
Will let you know how we get on after speaking with a gut specialist.
Hi Julie, Thank you for the extra information. I really hope more research is done to try to establish as far as possible the cause of this condition.
My dad did take omeprazole for a number of years before his diagnosis. The most notable thing was perhaps that he was on a very low fat diet because he had problems with his gall bladder. He was on this diet for about 3 years in his 60s before his gall bladder was removed. He lost a considerable amount of weight and I often wonder whether the lack of fat in his diet contributed in some way.
When I went with dad to the neurologist to get his diagnosis of MSA the most significant thing the neurologist wanted to know was whether dad had been in contact with chemicals throughout his life. When dad told him that he was an industrial chemist, he became very interested. Dad was therefore exposed to a number toxins throughout his long career. I have read with interest the other comments about environmental toxins such as pesticides. We just don't know enough about the possible causes yet, but it makes me sad to think that dad's profession could have been the cause of his illness. In those days, the health and safety protections we all take for granted were not so common place.
I wish you well in your research and I send warm wishes to you and your brother.
Just thought i'd drop this into the forum as its a recent article that supports the hypothesis that gut microbiome is linked to the pathogenesis and treatment of MSA and PD.
Read with caution, as this has not yet been proven in a clinical setting.
There are however a growing number of other new research articles linking the gut to MSA and PD.
Will let you know how we get on after speaking with a gut specialist.
this is all really interesting, my dad has sadly passed now, but I stillfollow this group as want to know as much as possible about the condition and believe the diet and the gut do have an effect
my friend does a microbiome course and she gave her mother in law some of the drink who has onset dementia and said it seemed to help her memory a lot
keep us posted and love to your brother and family
Just thought i'd drop this into the forum as its a recent article that supports the hypothesis that gut microbiome is linked to the pathogenesis and treatment of MSA and PD.
Read with caution, as this has not yet been proven in a clinical setting.
There are however a growing number of other new research articles linking the gut to MSA and PD.
Will let you know how we get on after speaking with a gut specialist.
My husbands sister is a chiropractor and she swears my husbands MSA-C is not MSA-C, but a 'gut' problem. I love her to death, but all the supplements and diet she has tried with him has done nothing for clearing up his 'gut' problems or his MSA-C. I suppose grasping at anything to give us hope is good, but from our experience, nothing is helping. Just treating the symptoms and hoping for the best. I think my husbands alcohol intake over his younger years up to a few years ago, and the chemicals he was exposed to at his work (he was a framer /construction) could be what caused this, but who knows. It's a wake up call to take care of yourself and don't abuse your body.
Just thought i'd drop this into the forum as its a recent article that supports the hypothesis that gut microbiome is linked to the pathogenesis and treatment of MSA and PD.
Read with caution, as this has not yet been proven in a clinical setting.
There are however a growing number of other new research articles linking the gut to MSA and PD.
Will let you know how we get on after speaking with a gut specialist.
Just thought i'd drop this into the forum as its a recent article that supports the hypothesis that gut microbiome is linked to the pathogenesis and treatment of MSA and PD.
Read with caution, as this has not yet been proven in a clinical setting.
There are however a growing number of other new research articles linking the gut to MSA and PD.
Will let you know how we get on after speaking with a gut specialist.
hubbys had problem long before his diagnosis he was for nearly 3 months on antibiotics for UTI and then enlarged prostate. These have totally messed up his system and we been struggling every since to get him back to some 'normal'.Started Symprove a year ago and along other changes in meds etc they have now settled him down into a better more comfortable place. However if the meds are not working proper, it all goes out the window regardless.
Hi I’m sorry to hear this . We are working with my brother with his gut and feeding his good bacteria atm . We are meeting with a gut specialist next week who will advise us on what he needs to improve his gut health as this is linked to his onset ( however not clinically proven ) but what we have read / research so far there is a clear link . We will keep you up dates on the specialist advice for you to consider but do take precaution as probiotics abs probiotics are not to be messed with without specialist advice .
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What is considered the latter stages of MSA?
Anyone have late onset msa slow progression with ataxia and autonomic disorder? 
Just want to say Hi.. 
Problem of clearing thick and sticky mucus 
