BFS can be caused by gluten, recent studies

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BFS can be caused by gluten, recent studies

Postby TwitchyDoc on March 27th, 2012, 1:05 pm

In case you do not know, gluten intolerance is known to cause neurological symptoms but recent studies suggest it can be much worse, even causing ALS-like syndrome:

http://www.nature.com/nrneurol/journal/ ... ro0631.pdf

Friend of mine today sent me this along with other studies, mainly describing pareasthesias but also purely motoric and senso-motoric neuropathies caused by gluten intolerance. Keep in mind that not all people will show classic symptoms of gluten intolerance.

Gluten-related "idiopathic" neuropathies:
http://www.ncbi.nlm.nih.gov/pubmed/16835287

Mainly - I am off gluten and it is really, really better. Few twitches per 2 hours! It is tough - no bread, no bear, no breakfast cereals etc..but it worths it. We have nothing to lose but much to gain.
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Re: BFS can be caused by gluten, recent studies

Postby chrissi on March 27th, 2012, 1:38 pm

There are actually some people on the board that have tried glutene-free, because this is a topic that comes up quite often here. I think U R the first to get better with it, i am glad for U that it helps!
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Re: BFS can be caused by gluten, recent studies

Postby twitcherHH on March 27th, 2012, 2:19 pm

raindog already wrote about that link. I can say that I feel much better when I'm on a gluten-free diet. But alas, I don't twitch less. But the studies I've read so far seem to suggest that the BFS-like symptoms may be caused by the same mechanisms that cause gluten intolerance, but not by gluten itself...
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Re: BFS can be caused by gluten, recent studies

Postby MarioMangler on March 27th, 2012, 2:45 pm

For me personally, I would rather eat what I want and have BFS, instead of the alternative. Although personally I doubt going gluten free would make much of a difference. My experience with BFS has always been that if you think something is going to work, it will work. Placebos make awesome treatments.
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2. No, the location doesn't matter
3. Yes, we have all had that symptom
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Re: BFS can be caused by gluten, recent studies

Postby garym on March 27th, 2012, 7:37 pm

MarioMangler wrote:For me personally, I would rather eat what I want and have BFS, instead of the alternative.


This ^....after years of bfs and trying to live without certain foods, caffeine, etc, I will just maintain my current diet and put up with the bfs....but of course, I've been dealing with this long enough to put it in the back ground of my existence. I can remember back to a time when that wasn't possible.

At any rate, I'm all for people doing what works for them, and I'm glad this seems to be helping some.

Take care,
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Re: BFS can be caused by gluten, recent studies

Postby alex_twitch on March 27th, 2012, 9:08 pm

Thanks for sharing. I would like to suggest that the potential benefits of going gluten free (as painful as it might be) may not be purely from a placebo effect. This might not work for everybody but may certainly be a potential cause of BFS-type symptoms for some. I recognize that the connection between BFS symptoms and gluten sensitivity is hard to "prove" via case studies or correlational studies (after all, correlation does not imply causation and it is hard to generalize from a sample of one). Moreover, for those of you who subscribe to the idea that BFS may be auto-immune in origin, it is also possible that Celiac disease is a separate auto-immune condition that co-exists with whatever this BFS "thing" is.

However, I also think that ignoring the possibility that BFS symptoms are potentially caused by Celiac disease may be a mistake for those who do have a gluten sensitivity. Left untreated, a gluten sensitivity can cause irreversible damage to multiple organ systems (neurological and others). My neurologist certainly believes there is a causal connection between the two (i.e., Celiac disease and BFS) -- when I visited with him, he was much more concerned with my family history of Gluten disease (mom and two sisters) than my family history of Multiple Sclerosis (another sister). My Gluten antibody test in the blood was negative, but I am considering getting a GI biopsy to exclude that possibility and/or trying the dreaded Gluten-free diet to see if there is any improvement. (As much as I dread the idea of going Gluten free -- there are now a good number of Gluten free breads and foods --even beer-- available for sale that actually taste like food...so, it might not be as painful as we'd expect).
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Re: BFS can be caused by gluten, recent studies

Postby chicagobfs on March 27th, 2012, 11:40 pm

I tried it one summer didn't change a thing ...Ask me what I didn't try :?
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Re: BFS can be caused by gluten, recent studies

Postby Aoi on March 31st, 2012, 10:40 am

Interesting articles. There is another issue with gluten and celiac disease worth remembering. Celiac disease can cause malabsorption syndromes, resulting in low levels of, for instance, vitamin B12, in the body even if dietary intake is adequate. Since a vitamin B12 deficiency could resemble BFS, the above is potentially useful, at least for some people here.

Also note that a proper gluten-free diet requires considerable effort at first, since gluten is used in a wide variety of substances, including toothpaste, and as mentioned in the PDF article, gluten can persist on cooking utensils even after washing.
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Re: BFS can be caused by gluten, recent studies

Postby wjjw on March 31st, 2012, 12:36 pm

Aoi wrote:Interesting articles. There is another issue with gluten and celiac disease worth remembering. Celiac disease can cause malabsorption syndromes, resulting in low levels of, for instance, vitamin B12, in the body even if dietary intake is adequate. Since a vitamin B12 deficiency could resemble BFS, the above is potentially useful, at least for some people here.

Also note that a proper gluten-free diet requires considerable effort at first, since gluten is used in a wide variety of substances, including toothpaste, and as mentioned in the PDF article, gluten can persist on cooking utensils even after washing.

My mother and brother both had confirmed celiac and I had abnormal ttG levels, but no celiac on endoscopy. The specialist I saw claimed that any neuro-type symptoms would only occur after the malabsorption symptoms mentioned above. However, a poster on this forum who was a doctor from the UK (forget his name) sent me a study that claimed those symptoms can occur even from a gluten intolerance, but no actual deficiencies, etc. I did strict gluten free for a full year, and did not detect any difference with regard to twitching. As Aoi says, the diet is a complete pain in the a$$ to do, and gluten free beer sucks :)

Good luck, and do whatever works for you. For me, the only repeated correlation with decreased twitching (and remission) was daily qigong, for many months. And I can still drink beer :D

Cheers,
Bill
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Re: BFS can be caused by gluten, recent studies

Postby wanderer on March 31st, 2012, 2:47 pm

I want to give this a try cause my bfs stuff started when I put on a lot of weight.

Is this a good site to for the foods to avoid that has gluten or is there anymore I should be aware off?
http://www.the-gluten-free-chef.com/foo ... luten.html
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Re: BFS can be caused by gluten, recent studies

Postby TwitchyDoc on March 31st, 2012, 3:27 pm

Wanderer, you reminded me...for me it too started after I gained quite a lot of weight (I was very skinny..no its normal)..
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Re: BFS can be caused by gluten, recent studies

Postby chrissi on April 1st, 2012, 2:44 am

Why don't you try a quick-blood-test from the pharmacy , they are abound 12 € here, are used like a pregnancy test (only with blood not with urine, LOL, don't pee on them...)and work in 97% of cases. OK, there are 3% of people where they do NOT work due to some inability to produce a special type of antibodies, but I would go for the 97%. If-like in wjjw*s case- the test is positive, further testing is required. I know people with celiac and the amount of glutene they need for getting symptoms is soooooooo small, U cannot even prepare food for them in a bowl you prepared something with flour in it even if you washed it, so I guess to avoid glutene completely is soooooooo difficile that I would rather rule it out with a simple and cheap test before I spend hundreds of dollars for glutene free food...I was tested for celiac a few years ago via biopsie because of my IBS, negative. I did the blood test a whil ago and it was negative oo.
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Re: BFS can be caused by gluten, recent studies

Postby SecretAgentMan on April 3rd, 2012, 11:34 am

For what it's worth, I really got into the food triggers when I first started to see positive results but I don't think I was able to ever drive my point across so that everyone was able to understand it. Mainly this is probably because I was on a steep learning curve at the time and I really, really wanted to post my experiences to help others. Basically what I have experienced and learned is this...

Gluten was a big trigger food that caused BFS symptoms to flare up for me personally, but so was dairy and soy. BFS for me was an autoimmune response and a majority of the symptoms would flare up when I ate certain foods. ANY food and ANY environmental factor can cause the immune system to flare up. It can be ingested, inhaled, or contacted by the skin. Usually contacted immune responses trigger rashes, itches or swelling though. Gluten and dairy are two of the most common foods to react to because they are complex proteins and the body has a hard time breaking them down. This makes them easy targets for the immune system to target. Every person is different so some may react mainly to gluten or they could be just fine with gluten. It can be dairy that they react to instead. Its possible to react to multiple foods. Each person needs to make that determination for themselves. There is no one size fits all diet that will help every BFS sufferer. I think that was one of the hardest things for me to illustrate in my later posts when I started to get it.

Anyway, I do still believe that most BFS sufferers can find a great deal of relief by paying attention to and modifying their diets, but they will likely need help because its hard for us to determine what we are sensitive to when it could be any number of or combination of things. A modified diet will no get rid of all the twitching though because the real root cause is an autoimmune response, which means that no matter what you eat your immune system is still out of control and attacking your own body. My immune system was targeting my spleen for some reason. The only way I was able to get this in check was through my alternative medicine docs and strong will and determination on my part. Alternative medicine docs were required because conventional medicine refuses to acknowledge the energetic aspect of our bodies. The human body relies on a balance of energy and without acknowledging this or working with this autoimmune conditions will go unresolved. Its that simple really. I hope this helps.
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Re: BFS can be caused by gluten, recent studies

Postby Aoi on April 4th, 2012, 9:59 am

There is an important distinction to make here. Allergy versus autoimmune response versus intolerance. Some people are allergic to wheat (i.e.: gluten) or dairy (i.e; casein), and such allergies are sometimes mistakenly referred to as an intolerance. Both are different from an autoimmune disorder.

In an allergy, the immune system musters a very specific response using the IgE antibodies to promote a histamine response. The allergic reaction involves inflammation and can be severe (e.g.: peanuts), but is very specific and self-limiting. Often, an OTC antihistamine like Benadryl (diphenhydramine) will stop the problem.

In an autoimmune response, the entire immune system, including the Ig family as well as complement and other cells get involved, attacking anything that has the appropriate antibodies. The body starts making antibodies to the antigen (here, for instance, gluten in the case of celiac disease), and these antibodies promote attacks on whatever in the body happens to have them. The response is nonspecific, and not self-limiting. Removing the antigenic substance may eventually lead to a remission.

An intolerance generally means that the person simply does not have enough of a specific enzyme or other biochemical to handle a substance. In lactose intolerance, for instance, the body simply does not produce much if any lactose, and as a result, anything with lactose is not handled well, with gut flora often having their own fun with the substance, to the detriment of the person.

Testing for celiac disease is not so simple. The test chrissi mentions is not available in the U.S., and a celiac who has been on a gluten-free diet for a while will very likely test negative because the antibodies to gluten have been cleared from the body. So such people have to undergo a "gluten challenge," and the exact amounts of glutenous food to eat and how long to eat them for remains unclear.

Since celiac disease as well as food sensitivites/intolerances can provoke a number of BFS symptoms, it's worth trying an elimination diet and (if desired) being tested. Also, celiac disease is strongly associated with autoimmune hypothyroidism, so anyone who tests positive for celiac should consider thyroid function and thyroid antibody testing.
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Re: BFS can be caused by gluten, recent studies

Postby SecretAgentMan on April 4th, 2012, 11:53 am

Thank you Aoi for the excellent clarification on the distinct differences between allergies, intollerances and auto-immune responses. While it is true that each of these are distinctly different I have learned through alternative medicine (and validated through my own personal experience) that each and every single one of these all relate back to an energy balance. This is why each of these are so poorly treated by conventional medicine because allopathic doctors simply do not acknowledge the relationship that our energy pathways have to our health (on all levels). I would reference the video Bill linked to in my 'one year later and still cured' post about the lady who had cancer for 4 years, had an 'out of body' experience while she experienced organ failure, and suddenly came back only to have the cancer miraculously disappear over the next 4 days. Her OBE allowed her to shift her perspective, expand her awareness, and realize that she had a choice (and always had a choice).

While we can't all have a near death experience or out of body experience to kick our expansion of awareness into overdrive all you do need to do is open your mind to the possiblity that eastern medicine may be onto something. Realize that perhaps 'mind over matter' is an expression because there is truth to it. Addressing the imbalance of energy allows the body to return to normalcy and it will start to heal itself. It may take some time because it didn't get to where it is overnight. In my case it took me well over 6 months, but I very quickly noticed possitive results. Once the energy balance issues were worked out the allergies, intolerances and auto immune responses went away. I am eating gluten, dairy and soy again. Eating these foods during my BFS time would have triggered all kinds of nasty problems like twitcing, anxiety and brain fog. No longer though. Its pretty amazing stuff.
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Re: BFS can be caused by gluten, recent studies

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