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Researchers Propose Link Between Gluten & ALS

PostPosted: May 5th, 2015, 8:29 pm
by BFSBurger

Re: Researchers Propose Link Between Gluten & ALS

PostPosted: May 5th, 2015, 10:24 pm
by BFSBurger
Here's another:

"Electromyography (EMG) of the ... muscles demonstrated widespread fasciculations"

"The patient's initial presentation consisted of evidence of upper and lower motor neuron degeneration, and EMG evidence of widespread acute denervation". ... o0631.html

Caused by Gluten.

The take away from this isn't that everyone here needs to stop eating gluten. But it sure is sh*t would be a good idea to try it for 7 to 9 months rather than ignorantly mocking the idea, as many here have done. There's a reason some very smart people here keep bringing it up.

The other take away is even more important: there's no reason for everyone to be obsessing on ALS when something as simple as a pizza could cause this kind of damage and these kinds of symptoms, depending on the person. And to be quite honest? This guy had significantly worse symptoms than 99% of people here.

And it was caused by friggen gluten.


Re: Researchers Propose Link Between Gluten & ALS

PostPosted: May 6th, 2015, 2:40 am
by Buzznerd123

Re: Researchers Propose Link Between Gluten & ALS

PostPosted: May 6th, 2015, 12:48 pm
by Scboy
I specifically asked my dr at Johns Hopkins about diet and was surprised by his response. I was bragging about being gluten free and eating healthy. His response was "your diet will not alter the course of what you have, you don't have to restrict your diet so much". Well I know dairy irritates my symptoms so I still avoid dairy, but I am cheating on gluten every now and then. So far I haven't noticed any difference. Everyone is different though. People have different sensitivities.

Re: Researchers Propose Link Between Gluten & ALS

PostPosted: May 6th, 2015, 7:54 pm
by misterjuanperalta
His statement is not 100% factual. The truth is healthy dietary changes can be generally beneficial or produce improvement. Nothing ventured, nothing gained.

Re: Researchers Propose Link Between Gluten & ALS

PostPosted: May 7th, 2015, 12:57 am
by BFSBurger
And here's more proof what your doctor was dead wrong. Written by a Doctor Who actually knows what he's talking about: ... r-gut.html

Please remember, your doctor is just a human being. He only knows what he's been exposed to. If he's been playing too much golf in the last two years, he's not going to know about this research. It's brand-new.


I knew you were going to pick one sentence out of the entire article and pretend the rest doesn't matter. And of course you're the first one to respond, so anybody who might actually listen to what's in the article and try it, you just ensured they won't do so by instilling doubt in their minds. Congratulations. You're not only doing nothing to help yourself, but you're affecting others with your pessimism.

How many studies do you need to read before you start believing what's being said? How about focusing on the other sentences in the article rather than just the one or two sentences that make it sound pointless?

Here's a reality check:

Even those who have been diagnosed with celiac don't always show positive on those antibody tests. In fact you can be a full-blown celiac and be completely negative on those tests if you are not eating gluten for a solid three months in large quantities prior to running the test.. You're aware of that right?

So don't you think it's kind of important to note that a significant number of people with ALS are showing positive celiac anti-bodies? I don't know how anybody could just dismiss that. But welcome to The land of people who strangely don't seem to care about getting better. At least not if it includes dietary lifestyle changes. They'd rather be pessimistic, negative, and miserable. Anything to avoid having to stop eating their favorite foods.

Ever since day one on the site it has been a constant process of showing people solutions, studies, and proof… And getting nothing but yawns, shrugged shoulders, and snarky comments in response. I don't know why I even bother.

I know full well you've seen the recent data on the connection between neuromuscular, nervous system, brain, and the gut. So maybe you'll start believing it sometime soon. It's just sad because you could be actually getting better right now instead.

Read the article below the first one. And read the article in this post. Let's see what you can find to dismiss both of them as well.

Re: Researchers Propose Link Between Gluten & ALS

PostPosted: May 7th, 2015, 3:41 am
by TwitchyDoc
From a medical and professional perspective..was that really a doctor? So basically he does not know what you have, what is the cause and any factors that might affect it and yet he is sure that "diet will not alter the course". I cannot imagine a doctor would say that, probably he does not even know what "lege artis" means...

Thinking of that celiac disease mimicking ALS (which appeared in many neurological journals), if doctors who treated that man were like yours, the patient would have died of "ALS". Fortunately, they were intelligent enough to consider yet unknown causes.
It is proven that gluten intolerance might cause neurological disturbances and I agree that even if this mimic causes ALS in only 1 out of 1000 patients, it is worth investigating and trying.

Re: Researchers Propose Link Between Gluten & ALS

PostPosted: May 7th, 2015, 8:15 am
by Scboy
Yes he's was a dr at Johns Hopkins. The dr thinks this is a vaccine injury based on my history. I had been on a gluten free diet for a year and still having symptoms with no real improvement. He said given my history he did not think a strict gluten free diet was necessary IN MY CASE based on my history. As I said previously everyone is different and certainly gluten free is definely worth a try. Just in my particular case it does not seem to help. Now that being said I am not going go out and live off Big Macs and Oreos. I still plan on being mindful of what I eat.

Re: Researchers Propose Link Between Gluten & ALS

PostPosted: May 7th, 2015, 9:32 am
by garym
I found the articles very interesting and informative. I would also suggest that anyone recently dx'd with bfs or bfs type sxs should consider trying to eliminate gluten and see if it helps them. In my humble opinion, there are multiple causes/triggers for bfs, and we are all different. We used to have a member that would come here daily, convinced that we all had Lyme's disease because he did and was treated and got better. He was probably right for some of us, but clearly not all. I firmly believe that cipro caused/triggered my bfs, and felt like everyone here should avoid fq antibiotics....clearly not everyone here has that problem, but I did. Others have argued that our issues were clearly the result of a viral assault on our nervous system, neurological herpes (or various other viruses) infection....Probably is the case for some of us. Then there is the ever popular, "it's all because of anxiety" crowd. To which, I personally say hogwash, but I'm sure it is true for some.

My point is that we should all follow the path that works for us. I personally haven't found the path that solves my issues yet, but frankly i've kinda stopped looking and have just got on with my life. That doesn't mean that I discount anyone's opinion on what we have and how to treat it....if eating grapes helps one person, and they share that here, then maybe it will help another member, so why not share. As long as we are talking about safe treatments, what's the harm? We are all different and all respond differently to treatments. What doesn't work for me, just might work for you.

take care,

Re: Researchers Propose Link Between Gluten & ALS

PostPosted: May 7th, 2015, 10:02 am
by Little Lost
This is my thoughts.....

Firstly I have to agree with Buzznerd. I think the ALS caused the antibodies, not the other way around as suggested. I also think people should be made aware that abstaining from gluten for long periods can have consequenes which you should consider before commiting to such a decision. Let me explain.

Firstly to do with the original article. I understand this article is talking about gluten intolerance not CD specifically. However just for interest there have been a few studies done on relationship between celiac disease and ALS, and no link has ever been statistically found. ( link below).

In the study linked by BFSburger I think the ALS came before the generation of the antibodies, and I see articles like this appearing more often, as everyone wants a slice of the ice bucket challenge research money. In my view it is basically a paper based on cheap blood tests, poor immunology ( I.e. presence of antibodies is far from proof of pathology), and overextrapolated data.

The fact that transglutaminase 6 antibodies were found in the serum of some ALS patients is not unexpected. I think they are probably there due to the breakdown of the gut oral tolerance mechanisms, a breakdown due to the ALS effect on the gut itself.

Most ALS suffers will not have an intact GI tract, peristalsis is slowed, saliva concentrations are wrong, which in turn upsets digestion and inhibits the adequate breakdown of certain foods. This means the presence of undigested food ( complex proteins) within gut ( proteins that should have been broken down ). It also means the antinflammatory cytokines, normally rich in the gut such as IL- 10, TGF b etc etc do not accumulate at the correct concentrations and the inherently suppressive environment of the gut is lost.

In addition and importantly the muscles used in physical swallowing are impaired, so the feedback activation of all those immunoregulatory processes which prevent us reacting to harmless food proteins, can not be achieved. It doesn't even say if the patients were PEG fed which would bypass even more of the guts normal physiological processes.

Take home message is that you need proper integrity of the gut for correct immunotoletance, lose that as in ALS, lose your tolerance for certain food proteins. If they had checked for certain milk proteins as a control they would probably have discovered them also etc etc. They have done the minimum for publication though.

At the risk of giving a lecture in gut immunology and oral tolerance I do want to point out a few other things. Especially if considering gluten abstaining.

It is important to remember that the immune system doesn't just act against pathogens ( prime ). It also has an equal role in being tolerant to self ( called central tolerance ), and to non harmful antigens present in the food we eat and the air we breath ( called peripheral tolerance). The latter is mainly achieved in the lymph nodes draining the gut ( MLN). In fact the gut is the main site of education for the immune system to foreign food proteins. When the gut physiological processes breakdown ( as in ALS patients), you get loss of tolerance to certain proteins, peptides in gluten being one of the best known.

So why do I suggest to think hard before going gluten free......surely there is no harm in trying.....Well a few facts about oral tolerance to ingested food protein

1) It has to be learned, tolerance to harmless food group antigens is a process which occurs in the first few years of life. Our ability to become immunotolerant ( educated ) decreases significantly with age.

2) There is a misconception that the immune system just simply ignores food proteins....crap it recognises, and responds in a very active ongoing manner, same as if it were a food pathogen, but instead it produces regulatory T cells secreting anti inflammatory molecules, B cells secreting protective rather than pathological antibodies . Much of the allergy and autoimmune theories were written before all these immunotolerance mechanisms were known about. So when a certain cytokine or antibodies turn up in serum those with poor immunology knowledge stick with the old idea and contribute it to a pathological response, when it could be part of the regulatory response. For example a match gives a flame, the flame can give you heat, or it can be used to light a bomb. It is wrong therefore to say we have a match so we will be blown up.

3). When you get booster immunisations you activate your immunological memory. Take the tetanus vaccination, after 10 years the immunological memory you boost it, give the immune system a reminder of what it molecularly looks like. Just as priming responses need boosted, importantly so does the regulatory arm of the immune system. Oral tolerance needs boosted by giving it a reminder, I.e. you are tolerant to gluten, abstain for too long your immune system forgets it is tolerant to it, forgets it is harmless food protein.

Remember the gut immunological memory is not long, ( unlike the tetanus 10 year boost in the periphery). The gut memory is much shorter. Look at norovirus, you are only immune for a few months after infection, then the immune system forgets it. Couple this to my previous point about increasing age decreasing ability to induce tolerance. There is the argument you may be too old to induce any oral tolerance that is lost through prolonged abstainment.

Put together there is always a risk ( as yet unquantified ), that if you abstain from gluten for a year etc then you will start to lose the immunological memory of it. The gut immune system begins to lose tolerance. As I said before the ability to educate the immune system via the oral route deteriorates with age.

What would this mean. Well if you abstain from gluten for a significant length of time then you must realise you may not be able to eat it again, reintroduction after a lengthy abstainment could make you react adversary to it. You could make yourself gluten sensitive by complete elimination, by deteriating immunological tolerance memory. This is a factor which plays into some hands of the huge lucrative market of gluten free products. I.e. ramming home a gluten free diet, which in turn can create a physiological response which generates people who are gluten sensitive and now actually do need their products.

I am not saying this to undermine what has clearly worked for some people, and I am not arguing against some of the systemic effects to some of the peptides involved. Clearly certain genotypes are more susceptibile. BFBurgers commitment to his diet has been effective for him, as I am sure it will some others. I enjoy his posts very much. However all I am saying is think about it before undergoing any extreme dietary changes for long periods of time. Make the decision in an educated way, not on a whim.


Re: Researchers Propose Link Between Gluten & ALS

PostPosted: May 7th, 2015, 11:05 am
by Buzznerd123

Re: Researchers Propose Link Between Gluten & ALS

PostPosted: May 7th, 2015, 12:21 pm
by garym
Buzznerd123 wrote:
I agree with you but some things that "work" for some might be very very dangerous for others, there are treatments like long term antibiotics for "chronic lyme" and vitamin megadoses that some people swear by but are objectively dangerous.
I will do my best to steer people away from these to save them form some suffering even if i get flak for it, i always try to do it in a sensible way but unfortunately don't always succeed.

we are on the same page on this....that is why we eventually ran the chronic lyme guy off the board. Hated to do it at the time, but he just wouldn't listen to anyone else's opinion. for the record he wasn't banned, just rebuked.

Re: Researchers Propose Link Between Gluten & ALS

PostPosted: May 7th, 2015, 12:22 pm
by garym
Little Lost wrote:This is my thoughts.....


Thanks for the is fantastic to have a real Doc on the board!

Re: Researchers Propose Link Between Gluten & ALS

PostPosted: May 7th, 2015, 12:54 pm
by Scboy
What the JH guy meant i think is that he cannot tell you with confidence based on available data if nutrition has a positive influence on SFN, there is some stuff for large fiber neuropathy but your disorder is largely understudied.
I'm sure he would agree that diet is key in overall health.

Yes of course that's what he meant. I didn't articulate that post very well. For that I apologize. I'm posting from an iPhone and I get too lazy to do a better job explaining myself. He meant that I have tried this diet for a year and have seen no or little improvement so it was ok to eat a piece of cake or doughnut every now and then. He didn't think, FOR MY CASE BASED ON MY HISTORY, there was much benefit in such a strict diet , but I should follow a. well balanced nutritious diet of course. That goes without saying. Now Little Lost's post really has me thinking. Hard to know what to do. Darned if you do, darned if you don't.

Re: Researchers Propose Link Between Gluten & ALS

PostPosted: May 7th, 2015, 1:30 pm
by mwagner
Little Lost has me a little lost (wow - I thought I was good at reading journal articles, etc. - but while I think I get the gist of LL's post, some was lost on me - no pun intended). But, I think I get the main idea/thoughts of what she said.

So, the entire book "Grain Brain" might be dangerous, if adhered to, based on LL's ideas of gluten immunity and then lack of immunity, if you go gluten free. That kind of concerns me. Although if you read his book, it scares the living daylights out of you (with all grains - not just gluten - but gluten being the evilest culprit of all), because it insinuates that if you eat grains/gluten - you are at a much higher risk of Alzheimer's, and a multitude of other problems.

I have been gluten free for about 3.5 years now (when my twitching really started, and also due to an ALCAT blood test that told me I was highly sensitive to wheat - recognizing that ALCAT tests are very controversial), and have no intent to return to eating gluten, except when I travel to Italy next year with my family - because I can't forgo pasta and pizza when in Italy (so incredibly good - and much better than anything you can find in the States - and we have so many gluten free options here). That being said - I haven't cheated except for once, at a dinner where I had no control of the food that was made. My stomach blew up to the point that I looked pregnant again. So, I may have created an outright intolerance for myself at this point. I have no intent to return to gluten, because I am happy with the way my body digests food now. I used to have full blown "IBS", and now I don't. I am also the least gassy person in my entire family :) I have no bloat after I eat. So there are some nice benefits to it. And many people don't realize that corn, rice, quinoa, potatoes, sweet potatoes, etc. are all gluten free. Not sure why you need wheat, barley, etc. to have a balanced diet. Quinoa is one of the healthiest grains out there, with lots of fiber and protein, for instance, and it's gluten free.

Anyway, a bit unrelated, but I have to mention it: I had an immediate thought on this when I read this post. I have noticed a larger portion of our members, and the Facebook page, are Scandinavian. And, Scandinavia has the highest rate of gluten intolerance and celiac disease than anywhere else in the world. I'm half Swedish. Maybe gluten intolerance does have a neurological significance, or maybe it is just a coincidence.