Gluten Intolerance/Celiac Mimicking ALS - Proof

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Gluten Intolerance/Celiac Mimicking ALS - Proof

Postby BFSBurger on November 28th, 2013, 5:36 pm

This deserves its own thread.

This study proves that Gut Permeability disorders can result in ALS like symptoms *without ALS*.
And that correcting your diet *properly* and for the *proper duration*, can result in reduction of symptoms, partial recovery, or complete recovery.
Given the fact that this approach has been tried by several here and proven effective, there is no more debate on the issue any longer.


A Case of Celiac Disease mimicking Amyotrophic Lateral Sclerosis

http://www.readcube.com/articles/10.1038/ncpneuro0631

Note: One does *not* need to have full blown Celiac Disease for this study to be relevant.
Celiac is just a form of Gut Permeability. Its a breakdown of the Gut Barrier, which can be caused by many things.
These also include Antibiotics, NSAIDS, Pesticides, Stress Hormones, Histamine producing foods, and even just plain old difficult to digest foods.
Its not just Gluten!

The approach of calming the Gut, healing the Gut, and eating a diet 100% focused on promoting gut barrier stability not only has been proven to reduce risk of autoimmune disease, but apparently, also, BFS like syndromes.

Please note that it took *Nine Months* of strict diet change for this individual to recover.
Once you have damaged your gut, it takes a long time to restore it.
So anyone claiming they've "taken a whack" at a diet change and "saw no results" ... well ... you know the rest.
Strict diet change for 9 months means 100% adherence, for a long ... long time.
For me, it took at least 3-5 months to start to see major improvement, and a full 7-8 months before I was 100% again.

-BFSB-
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Gluten Intolerance/Celiac Mimicking ALS - Proof

Postby johnnythejet on November 29th, 2013, 1:30 am

Interesting study of 1 case, but this doesn't change anything about us. This community is for and about BFS, which we know a lot about. It can be caused by many things, which can vary widely from person to person. We know anxiety typically plays the most significant role, and once that gets under control there are a number of other factors that can assist in recovery or appear to. That's why newer twitchers who see improvement in symptoms often attribute recovery to different things that were used during the first year or two of twitching (which is when anxiety reduction plays the largest role). And given that we know beating BFS is largely mental (as proven by feedback from longtime twitchers) anything that can help that aspect (ie: placebo) will do just that. Given that BFS can be caused by 1 or more of possibly hundreds of factors, any change to our environment (diet, medication, magic potions, etc.) technically "can" reduce symptoms either directly or indirectly. And I agree there really isn't a debate on this.
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Re: Gluten Intolerance/Celiac Mimicking ALS - Proof

Postby Yuliasir on November 29th, 2013, 11:05 am

Would like to note, that, according to (for example) Di Sabatino A, Corazza GR (April 2009). "Coeliac disease". Lancet 373 (9673): 1480–93.

Celiac (or coeliac)disease is "caused by a reaction to gliadin, a prolamin (gluten protein) found in wheat, and similar proteins found in the crops of the tribe Triticeae (which includes other common grains such as barley and rye"

Not by antibiotics, NSAIDS, water, sugar or whatever.

or please do not call it celiac disease then - people can be really confused.
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Re: Gluten Intolerance/Celiac Mimicking ALS - Proof

Postby jerry2 on November 29th, 2013, 12:19 pm

I changed the way I eat 100%since january. No sugar, no this, no that...

That didn't change the way my body works.

You proved nothing except some people may get simmilar symptoms from the food intolerance.

Of course you did not prove anything for us where food is not the reason why we have problems.
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Re: Gluten Intolerance/Celiac Mimicking ALS - Proof

Postby emmie.s on November 29th, 2013, 12:59 pm

Cutting out gluten has worked very well for me in terms of significantly reducing the twitching and electric feeling pains. However, unlike many twitchers, I have other issues such as a positive anti nuclear antibody test (as found with lupus, mctd, and sjogrens), hyper mobility (can mean mixed connective tissue disease also) and a whole
litany of weird symptoms like fever after being in the sun, dry skin, etc...so I'm thinking whatever underlying autoimmune crap I have made me twitch...and cutting out inflammatory foods helped with the autoimmune stuff, hence less twitching.
Many if not most here don't have those issues. Maybe they have something viral or hereditary or who knows what...so it makes sense this doesn't work for them. However, posts like this are still great because this info just might benefit someone like me.
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Re: Gluten Intolerance/Celiac Mimicking ALS - Proof

Postby johnnythejet on November 30th, 2013, 12:11 am

I went back and reread the case study, and now realize it has less relevance to us that I originally thought. Anyone who understands BFS and ALS alike should realize that BFS doesn't actually mimic ALS. The only reason so many people freak out about BFS is they google twitching and read ALS articles. Once you get down to the details of symptom patterns, etc. the two are not remotely similar. That's the reason so many that pop in here are so clearly "BFSers" and the reason why a good neuro will shoo us away without an EMG. The differences are obvious...night and day. So while its interesting there are some other causes that can create muscle wasting and truly look like ALS, we aren't in the same boat.
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Re: Gluten Intolerance/Celiac Mimicking ALS - Proof

Postby BFSBurger on December 2nd, 2013, 12:19 am

Yuliasir wrote:Celiac (or coeliac)disease is "caused by a reaction to gliadin. Not by antibiotics, NSAIDS, water, sugar or whatever. or please do not call it celiac disease then - people can be really confused.

I did not say Celiac disease is caused by NSAIDS anywhere in my post.
I said Celiac is a form of Gut Permeability / Gut Damage.
And that Gut permeability is also caused by (and increased by)by NSAIDS, Pesticides, Stress Hormones ....antibiotics.
This is factual medical information.
Must read carefully ... I choose my words carefully.

I changed the way I eat 100%since january. No sugar, no this, no that. That didn't change the way my body works. You proved nothing except some people may get simmilar symptoms from the food intolerance. Of course you did not prove anything for us where food is not the reason why we have problems.

You're correct. I didn't prove anything. The study proved that gut damage can lead to ALS-like symptoms. Which is exactly what we have.
Given the fact that people here have seen improvement of symptoms with gut-healing protocols, this study lends serious validity to what I have been saying.

Jerry, you have had ongoing, major issues with your gut. Major. Major food intolerances, IBS, etc.
You of all people should be aware that the Gut is playing a huge role in whats happening inside you right now.

"Doing this and that" with diet changes means very little. There are specific ways to address gut damage issues. You either do it right, or you do it wrong. And it takes time.
It took this guy 9 months of proper gut healing food changes to resolve his symptoms.
Anyone who says their body does not change with their diet, understands very little about how the human body works.

What really bugs me is the nonstop caustic attitude in people's posts towards me. Why?
Is there some sort of "you versus me" fight going on that I'm not aware of?
This is a medical site and im sharing health information that is extremely relevant to our situation, yet its met with crap attitudes, and negativity half the time.
Doesn't make any sense. I'm not on an opposing team. We are all in this together.

If I knew for a fact one single person here did exactly what I did, and saw no improvement, then that would hold some weight for me.
But the people that talk the most trash, haven't done jack squat to try this out.
Do you know what that tells me? That your bad attitudes are irrelevant, contradictory, and irrational.
I know how hard it was. I know how much is involved if you do it *right*. I know that this is not something *anyone* can just "try".
Its a whole lifestyle change from top to bottom. It was the single hardest thing I've ever done.
Breaking 39 years of habits, cravings, behavioral patterns, attitudes, outlooks, etc...
So I have very little respect for the peanut gallery who hasn't bothered, yet still comes at me like they know im wrong.
You don't know I'm wrong.

Despite comments I have heard, I am not diagnosing everyone with the same exact cause of BFS.
I have said ad nauseum that this could be a herpes virus, bacteria, fungus, result of drug toxicity, environmental toxicities, or HPA Axis dysfunction.
But you can't tell me im "wrong" about the gut damage issue, when you haven't done what I've done. Walked in my shoes, and repeated my exact steps.
Until you've actually tried a proper gut healing protocol for the proper duration, you can't claim its NOT causing your symptoms.
I am just sharing what has worked for me.
I just want people to feel better.

This study clearly proves that gut damage can result in bodywide fasciculations and ALS-like syndromes.
This should hit straight home for all of us, but ... as usual ... on this site ...
Strange bunch....

-BFSB-
Last edited by BFSBurger on December 2nd, 2013, 1:15 am, edited 3 times in total.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Gluten Intolerance/Celiac Mimicking ALS - Proof

Postby johnnythejet on December 2nd, 2013, 1:12 am

BFSBurger wrote:
Yuliasir wrote:Celiac (or coeliac)disease is "caused by a reaction to gliadin. Not by antibiotics, NSAIDS, water, sugar or whatever. or please do not call it celiac disease then - people can be really confused.


I did not say Celiac disease is caused by NSAIDS anywhere in my post.
I said Celiac is a form of Gut Permeability / Gut Damage.
And that Gut permeability is also caused by (and increased by)by NSAIDS, Pesticides, Stress Hormones ....
Must read carefully ... I choose my words carefully.

I changed the way I eat 100%since january. No sugar, no this, no that. That didn't change the way my body works. You proved nothing except some people may get simmilar symptoms from the food intolerance. Of course you did not prove anything for us where food is not the reason why we have problems.

You're correct. I didn't prove anything. The study proved that gut damage can lead to ALS-like symptoms. Which is exactly what we have.
In light of the fact that numerous people here who actually pursued gut healing protocols and seen improvement of symptoms, this study should be huge for everyone here.

One other note Jerry: Though you failed to mention it in your post above, I am aware that you have major issues with your gut. Major. Major food intolerances, IBS, etc. You have indicated this countless times. You of all people should be aware that the Gut is playing a huge role in whats happening inside you right now.

How anyone can read that and not see the relevance to all of us here, especially when many report gut healing protocols are improving their symptoms ... is beyond my comprehension.
"Doing this and that" with diet changes doesn't mean anything to me. There are specific ways to address gut damage issues. You either do it right, or you do it wrong.
It took this guy 9 months of proper gut healing food changes to resolve his symptoms. I know you haven't done anything for 9 months yet, Jerry.
And lastly, Anyone who says their health and their body does not change with their diet, understands very little about how the human body works.

Why are people so angry and rude on this site?
I don't come at any of you with a bad attitude, or rudeness. I just share my experiences and hope someone tries what worked for me.
But I constantly have to respond to straight up angry, snarky comments and bad attitudes.
Doesn't make any sense. This isn't some fight of "Me against You".

I am sharing medical information on a health site that might bring some answers.
I've shared my experiences and full recovery.
And all I seem to get in response are d*ckish attitudes. As if we are on opposing teams.
What's the problem?
I mean if anything Jerry, if I were you, I would have sent me a PM prior to your diet changes, asking exactly what I did, and for how long, that resulted in resolution of symptoms.
But I haven't heard anything from you for months, and now you declare it nonsense. lol. Its not nonsense to me. Nor many others here. Its reality.
And this study clearly proves that gut damage can result in bodywide fasciculations and ALS-like syndromes.
This should hit straight home for all of us, but ... as usual ... on this site ...
Strange bunch....

Burger-
For whatever reason when people don't fall in line with your often flawed conclusions, you twist the disagreement into some form of "me against the world" personal sob story. And while I love a good story, its getting old. Please keep in mind the following:
1. As I've already stated and is painfully clear, this case study you offer as "proof" has little or no relevance to this community. It concerns one single case, which is clearly different than our typical BFS story. We do not have "ALS like symptoms". Anyone who has been around as long as you should understand that. Yes, we have twitching which is a secondary symptom of ALS but practically everything else about our symptom pattern differs from ALS....not remotely a "mimic". And twitching is a symptom of tons of conditions and diseases. The fact that you claim this study is "huge for everyone here" is laughable at best, no offense.
2. Most people know that your dietary suggestions are a longshot, at best. The very nature of BFS basically precludes any single fix from existing. And everytime someone says it hasn't worked for them you've either claimed "you didn't do it long enough" or "you didn't do it right", or you have just ignored it. I'm not sure who you think is buying that nonsense.
3. I reread Jerry's response to your post, and there is nothing angry or rude about it. He simply stated facts and his position on your flawed claims. I don't believe he deserves his words twisted into some form of personal attack. Please try facing opposition instead of crying foul and deflecting.
4. "Strange bunch"? Yes, we're strange in twitchy ways, but the source of your difficulties here may lie closer to home.

As you've been asked before, please avoid turning disagreements into personal drama. If you feel strongly about something then speak up, state the facts and attack the argument (not the person). You've been down this road before, and we saw where that led. So unless you're planning to "leave the site and never come back" AGAIN lol, then please stick to the content. If not for our sanity, please do it for the new arrivals who come for information and not high school drama.

Thanks
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Re: Gluten Intolerance/Celiac Mimicking ALS - Proof

Postby garym on December 2nd, 2013, 10:36 am

the first thing I've learned in all my years here is that we are all different. the second thing I think I know is that there are many different causes of bfs......at this point in my journey, i don't spend much time thinking about potential causes or cures but i always appreciate our members efforts to find cures/treatments. that said, i have literally seen 100's of theories over the years, none of which have worked on a broad scale here. blame it on whatever, but that is a fact. the process bfsb is talking about interests me and is something i might try in the near future, but if i do, i will go in as a skeptic and hopeful come out as twitch free. i for one don't want to discourage anyone from trying new things to help their bfs, but we also have to be careful as a group providing newbies with false hope. i'm not saying that is what bfsb is doing here, because i believe he has only the best interest of all of us at heart and really wants to help everyone. the only problem, as i see it, is that we are all different and what works for one may not for another.

let me end by saying thanks to bfsb for taking the time to research this particular area and for reporting back to the site what he has found. also, everyone here needs to understand that what works for him may not, and based on my experience probably will not cure your bfs.....but i for one say give it a shot. at the end of the day, what do we stand to lose by improving our diet. if you ask my wife, she would say that is the root to all my problems......well, that and that i don't drink enough water :')

take care,
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Re: Gluten Intolerance/Celiac Mimicking ALS - Proof

Postby johnnythejet on December 2nd, 2013, 11:49 am

garym wrote: we also have to be careful as a group providing newbies with false hope.


False hope is exactly what I’m concerned about. Everyone here has good intentions, and I don’t think anyone here would ever purposely confuse or mislead newbies. Unfortunately, it isn’t readily apparent for newbies to see the truth that BFS has many factors and its highly unlikely any single solution will solve their BFS. Combine that fact with numerous posts that overstate theoretical conclusions and many newbies will be left with false hope. I know too many BFSers who have wasted years of their life desperately trying theory after theory (including this one) hoping for change only to report back that they regret wasting time and energy. Depending on the personality, this can lead to obsessing even more about symptoms which can lead to worse and anxiety and associated problems. I also support any person who wants to try a new diet, acupuncture, herbal remedies, magic potions, Gatorade IV’s, etc. but its important that everyone has an good understanding of BFS and the likelihood of any one theory being a solution.

In your case, Gary, I think you should definitely make the diet change…..if for no other reason than to make your wife happy. Happy wife, happy life!
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Re: Gluten Intolerance/Celiac Mimicking ALS - Proof

Postby Anxious guy on December 2nd, 2013, 2:17 pm

I appreciate anyone who spends time researching and putting possible theories out there, I also appreciate the good nature and how helpful everyone is on this site... I agree that with my limited knowledge of BFS there does seem to be different triggers for everyone. For me I have come to the conclusion that health anxiety coupled with lack of sleep and a big change in routine after a birth of a child was my trigger but hey who said that gluten might not have been a big factor also and maybe the recent changes in my life simply pushed it that little bit further to become a full blown BFS encounter !

There are a load of simple factors that seem to run amongst us and for some reason health anxiety seems to be apparent in the vast majority.. For the few years running up to this recent BFS flare up if I ate white bread, spicy foods or drank alcohol my cheeks went bright red !! they would stay red for days and in general my cheeks were just always red.. I was told it was rosaeca but I found a connection to the few items I mentioned just now, they appeared to be triggers.. Perhaps for me that's all connected and rather than my red cheeks I'm now twitching .. Who knows?

Keep the theories and debates coming, I find them all very interesting!

Thanks :-)
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Re: Gluten Intolerance/Celiac Mimicking ALS - Proof

Postby TwitchyDoc on December 3rd, 2013, 4:01 am

It is sad that most of you missed the point. The point is that gluten intolerance can lead damage motor neurons in aterior horn cells area which can cause BFS and if not treated, it might progress. There are more reports in medical journals, this is NOT the only one.
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Re: Gluten Intolerance/Celiac Mimicking ALS - Proof

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