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Date: 12.07.2013
From: Sean

Subject: All disease starts in the gut

Saw an interesting program on channel 4 earlier - regarding a condition called stiff person syndrome.

I know I rattle on about this a fair bit but I thought I would do a quick search and uncovered more links to diet and different diseases.

1) Non Genetic Basis For Gluten Intolerence

http://www.immunoscienceslab.com/Articles/ImmunImmDelHyperSenGlut.pdf

2) Mechanism of Rheumatoid Arthritis is virtually identical to Celiac Disease

http://www.sciencedirect.com/science/article/pii/S1471490606000548

3) Intestinal Permeability & Gluten in Autism

http://www.sciencedaily.com/releases/2013/06/130620132144.htm
(I have suspected this for 15 years - since discussing with a colleague who had an autistic son)

4) GUT Feelings - this lady is awesome (treated her child with diet)

http://vimeo.com/20802525

Another couple of awesome ladies (yes she is selling a book but there is a lot of sincerity about her)

http://youtu.be/XMM8d3Tmqxo

Diet in multiple sclerosis -

http://youtu.be/KLjgBLwH3Wc

5) Another Autism link but the general point is treatment / management of autoimmune "incurable" disease with diet

http://youtu.be/Xf0MUd1q0yQ

No link with autoimmune disease and diet? These people make me want to try even harder than I already do - I hope they inspire you also and change your reliance on drugs as the only option. When your GP or Rheumi says there no proof for diet helping autoimmune conditions the proof they want is a 100,000+ double blinded study which are generally only funded by pharmaceuticals.

I was considering the use of the word "anecdote" and the fact that new words are not invented as technology has changed - what does 10's of thousands of similar stories on the Internet mean - are they all unproven anecdote (like a chat from somebody at the shops) or are they a collective body of evidence?
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Date: 12.07.2013
From: Colin W

Subject: Re: All disease starts in the gut

whats the channel 4 program ?
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Date: 12.07.2013
From: bsk

Subject: Re: All disease starts in the gut

'All disease starts in the gut'

I know your obsession with the gut Sean but think it's stretching a point too far to say ALL disease starts in the gut. SOME disease starts in the gut might be a more sensible heading.

As for anecdotes, there used to be anecdotal stories about witchcraft. Have you read tens of thousands of anecdotal stories on the net. If you have, I feel sorry for you.

As for studies, you continually trash organisations like Arthritis Research, who are funding hundreds of studies. I'm not saying there isn't a connection with diet or gut problems, I'm saying what you write is so emotive that it's impossible to take you seriously.

And, don't have a go at me for finding fault with your arguments. As this is a forum for discussion, I am discussing what you have written. You might have more success in finding support, and changing things for people, if you put your energies into getting a wider debate with organisations that might change things.
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Date: 12.07.2013
From: sean

Subject: Re: All disease starts in the gut

Hi bsk

I have only every critised Arthritis Care & Research :)

Yes my title is a bit extreme but it was from another website that I was reading earlier - yes I am sad!

In this post my general point is 'proof' - these anecdotal stories as they are often called have less to gain than a drug company that falsify outcomes and lack of side effects.

You mentioned 'bad science' last year - the author has now written a similar book on how drugs companies can also twist statistics for trials. Which might be why drugs like Vioxx get passed as safe.

Telling me that I trash Arthritis Research and questioning my title heading is not finding fault with my arguments. There is no argument - and I can see that you dont take me seriously bsk - It's just information for anyone that wants to read and decide for themselves.

There no need to feel sorry for me either - I'm am aware that I am one of the lucky ones that is just trying to help others, especially as I can see from many forums that people still suffer even with their drug treatments - whilst being told by GP's and Rheumis that there is no need to try diets (I have been told this)- because they are "unproven".
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Date: 13.07.2013
From: Linda

Subject: Re: All disease starts in the gut

I have tried to persuade my daughter to try a gluten,dairy free diet for my grandson Sean He's autistic and he also has epilepsy. She and her husband stick strictly with mainstream medicine. Pity, it might help his autistic behaviours.

My mother, out of interest was Irish, and was severely disabled with RA. The Irish have the least tolerance to wheat, having only grown it for 3000 years. I think it's been grown over most of Europe for 10.000 years.
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Date: 13.07.2013
From: Sean

Subject: Re: All disease starts in the gut

Hi Linda

I remember you mentioning this before - there is a video from Dr. Natasha McBride linked above that really caught my attention a few weeks ago. She has produced an diet based on a diet called SCD (specific Carbohydrate diet) - the aim of which is to starve certain bacteria in the gut and allow it to heal. Two autistic children I have known have both had crohns and one was known as gluten intolerent. Her additional focus from her Russian traing is fermented foods - like sauerkraut to add good benefial bacteria to reseed.

The most interesting thing she said was that babies are born with a sterile gut and get there first "seeds" of bacteria from the birth canal based on what ever is present in the mother at this time and then from breast feeding - and that 90% of our immune system is governed by these bacteria. There are 10 times as many bacteria in our gut as there are cells in our whole body.

Apparently the main cause of the brain damage / lack of development is a substance called LPS which is a toxin excreted by bacteria.

Sort of related - my cousin in Cornwall has serious rheumatoid arthritis and then last year her "healthy" 15 year old son developed a serious bowel condition and had to have an operation to remove a section.

From what I read and see in my own life I am constantly seeing links.

But because it's still seen as a quack therapy - it isn't even promoted as a supplement to other therapies. I once played devils advocate with a GP and a rheumatologist to test there knowledge - but a few weeks training at medical school for nutrition doesn't really help. They try their best though I am sure.

It's so frustrating when it costs so little to try - and there is so much to gain. Back to arthritis - I spoke to an AR researcher / lead scientist yesterday and he reassured me that this area is one of their main focuses and "will be discussed in a meeting in September" but signed of with "the wheels turn slowly in the NHS"..

Best wishes - Sean
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Date: 13.07.2013
From: bsk

Subject: Re: All disease starts in the gut

I just wish your posts were a little more robust Sean, that's all. It might persuade more people to look into what you are talking about. I'm not saying you are aware you are doing this but it appears as if you are cherry picking to suit your views and then backing it up with anecdotal evidence isn't very convincing.

I'm with you completely with finding another way of tackling RA. if you've read my posts on other threads you will see I am having problems with the anti tnfs etc. However, I can't quite bring myself to go the diet route without proper evidence that my joints won't get damage in the long term. That's all I am waiting for.

Apologies if I accused you of trashing Arthritis Research mistakenly. They are funding some important stuff right now so I am a big support of them.
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Date: 13.07.2013
From: Linda

Subject: Re: All disease starts in the gut

Thanks Sean, have heard of Dr Natasha McBride. I believe her own son was autistic and that's why she developed the GAPs diet. People were sceptical, but I know what it's like to cope with an autistic child and I believe she has been very successful.

There's an excellent video by a Dr Hedburg about gluten and autoimmune disease from the Hawthorne university in America. It's been a while since I watched it so I'm not sure I've got the name right.
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Date: 13.07.2013
From: Colin W

Subject: Re: All disease starts in the gut

anyone that trashes Arthritis Research just makes them look a joke , they & thier supporters have funded some of the best research into arthritis & discoveries like anti-tnf treatment which may have not happened with out Arthritis Research

they fund research that wont get done by drug companies & that is the trouble with any research in the UK/USA & its all about the money they can make & if you want anyone to research problems caused by the gut you will need someone like Arthritis Research to fund it
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Date: 14.07.2013
From: bsk

Subject: Re: All disease starts in the gut

Colin, Sean says I was wrong to say that, it's Arthritis Care & Research he criticises. I'm not sure who they are or why they are so bad.
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Date: 14.07.2013
From: Colin W

Subject: Re: All disease starts in the gut

bsk , I take it he dont like Arthritis Care & Arthritis Research UK , know he is banned from Arthritis Care forum but they are pretty strick on there about what you post

my own Consultant research into musculoskeletal conditions . The role of rheumatology is funded by Arthritis Research UK , just like the way unqualified people make claims like Sean has here , thing is we know part of what he says is correct but he seems to add 2 + 2 & end up with 5
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Date: 14.07.2013
From: Linda

Subject: Re: All disease starts in the gut

I don't know whether you saw that programme on TV last week Colin. It was about an Australian man with autoimmune disease. He lived on juice which he blended using only fruit and vegetables for forty days. At the end of the forty days, he'd lost a lot weight and his autoimmune skin condition had cleared up. He had rebooted his immune system.

I'm not sure I myself could go to that extreme but I was impressed.
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Date: 15.07.2013
From: Colin W

Subject: Re: All disease starts in the gut

hi Linda , watched the program Fat Sick & Nearly Dead on demand 5 , the two guys are very inspirational with the amount of weight lost & good on them controling thier condition

thier claim to rebooted his immune system has to be questioned & does it work for other auto immune problems but seems to reboot thier lives

real worth watching & so please they inspire people to change thier lives for a lot more healthy eating
http://www.channel5.com/shows/fat-sick-and-nearly-dead
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Date: 16.07.2013
From: bsk

Subject: Re: All disease starts in the gut

Hi Colin, sorry for not responding to your earlier post. Yes, Arthritis Care are a little strict it's true, perhaps a bit too controlling in my view!! However, I agree with the 2+2 =5 comment.

Because of your post I had a look at the channel 5 programme. There wasn't an awful lot I didn't already know. In the 80's I used to see a German acupuncturist and general health bod - can't for the life of me remember why now - but he was a massive fan of juicing and diet. I did go on a very strict no wheat, sugar, yeast, coffee, alcohol etc. diet with a lot of juice, mostly carrot I think. I was well during that time, lost weight but can't remember any specific health benefits that a normal healthy diet wouldn't sort out.

My problem is that the programme went from a kind of extreme, someone really overweight with an unhealthy lifestyle and a health condition to the polar opposite. My diet is pretty good on the fruit, veg, no meat etc. front. I exercise as much as my RA allows. I just don't buy that all auto immune diseases would benefit from this sort of treatment. I have a friend who has had RA since her teens. She's eschewed the drugs and has taken (what I call) the extreme diet route and she has badly deformed hands and feet. Tell me, if I follow in her footsteps, I won't end up like that and just may give it another go.
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Date: 16.07.2013
From: sean

Subject: Re: All disease starts in the gut

Hi Linda - I'll definitely look up the video by Dr Hedburg.

Colin -
"thing is we know part of what 'he' says is correct"
What part is correct? Which bits are not correct?

Bsk - whats wrong with meat / alcohol? As long as you don't react to a meat then from an evolutionary point of view it is essential to eat. The healthiest "post war" generation had loads of butter and beef dripping!

The links above focus on meat a lot -
http://youtu.be/KLjgBLwH3Wc
http://vimeo.com/20802525

What extreme diet did your friend follow - I really am interested to know as there might be very good reason why it might have failed - Was she guided by a health practicioner or just based her own knowledge (as we know there's little free support for this as it's unproven!). As I said before Gluten Free / Wheat free foods are often just as bad from an allergy perspective as Wheat can be.

Potatoes and especially Rice are known to be far less allergic for most people than Corn and Wheat - Corn is the hidden devil in Gluten free food!

But as well as foods we have to look at the bugs -

http://ard.bmj.com/content/52/7/503

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1005223/?page=1
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Date: 16.07.2013
From: Colin W

Subject: Re: All disease starts in the gut

bsk , I totaly agree with you , the program is 3 years old now & if there was a great improvement in immune system conditions , it would have come out now , they both had the same condition on that film , but cant see any benifit apart from weight loss for those of us with RA

when I first when to rheumatology I used to see loads of people with RA deformaties but you rarely see them now , just us with severe RA & those that refuse to take the drugs , used to look through the papers on tuesday because they had medical section hoping for some cure , now I know not to trust what they say & pretty much everything I read on the web & advise everyone to stick to the main charities/NHS etc sites
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Date: 16.07.2013
From: bsk

Subject: Re: All disease starts in the gut

I don't like meat Sean.

As to my friend, of course she didn't just go off and try any old diet. I'm not going to go into the ins and outs of her diet, suffice to say, it hasn't kept deformity at bay. She chooses to stay on it but now takes dmards too, as far as I am aware.

Colin, there is no doubt that eating healthily is good for you, I wouldn't dispute that for one minute.
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Date: 16.07.2013
From: Sean

Subject: Re: All disease starts in the gut

Hi Colin

Do you realise the implication of someone "proving" this on the food industry and drugs companies. The resulting shift would be harder for the powers that be to deal with than all our suffering! We are talking tens of billions of pounds. It would take a very strong government to allow this.

Your faith in authority is very noble though.
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Date: 16.07.2013
From: Colin W

Subject: Re: All disease starts in the gut

Sean , I know the impact on the drug companies , its the same with antibiotics that non will invest in new drugs & the problems that is causing , its not in everyones best interest that they are not developing new antibiotics .

but this comes back to Arthritis Research UK & they will invest in trails without the Drug Companies & Goverment monies & if there was anything to be proven then you need some charity like AR UK to fund it

lol at you claiming my faith in the NHS , those of us with severe arthritis would be totaly cripled without it , even with that we have endded up having joints fused or replaced , its the amount of rubbish published even in our press , is why I dont trust it & alot of it is harmful . as with the NHS it varies to what hospital/trust you see & with some conditions its dangerous to end up in there
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Date: 17.07.2013
From: Sean

Subject: Re: All (autoimmune) disease starts in the gut

Hi bsk

I remember you mentioning your friend before and looked back at your old posts and noticed that you mentioned that she was a vegan - and yourself a vegetarian.

The big question - what is a healthy diet? Research has shown that Vitamin D is synthesised by HDL Cholesterol from animal fats. Then HDL works to lower LDL formed from our love of excessive carbohyrdrate. Most people have carbs with every meal - I feel MUCH better when I skip carbs from time to time. It must be hard to skip wheat or other carbs if your a veggie - let alone a vegan.

http://www.sarahwilson.com.au/2010/11/tuesday-eats-why-i-eat-animal-fat-and-sit-in-the-sun/

Hi Linda - I just read an article by Dr. Hedburg interesting stuff - he specialises in Thyroid and claims that 27 million Americans go undiagnosed with Thyroid issues - and heavily promotes Gluten free - and other measure like protein with every meal.

http://drhedberg.com/2010/11/16/understanding-autoimmune-disease/

Hi Colin - Sorry but you are misquoting me again like you did with AR - who questioned your faith with the NHS?
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Date: 18.07.2013
From: malene

Subject: Re: All disease starts in the gut

Sean, I must commend you for all this reading you do I don't know where you find the time. I have read some of the sites you suggested but mmmm still not convinced.
Take care
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