Benign Fasiculation Syndrome

[mommyto3]

Anybody else diagnosed with this?

I had crazy twitching, vibrating, little electrical shocks, hyper-senstivity (especially along the seams of my pants!)all over my body a number of years ago for a quite a while. Finally went to a neurologist back then who said I have BFS. He said it's an "overactive nervous system" and told me not to drink coffee. I think I was diagnosed about 10 years ago and this condtion seems to come and go. I'm fine for a few months and then bam, it starts up again.

Anyways, I got to thinking that maybe it's related to ingesting gluten. I went gluten free about 6 months ago and all was fine. Now over the last month or so the damn twitching has started again. I did have a couple of questionable meals and I haven't been obsessive about cc. At the same time, I've also been under some stress....

I'm not sure if it's a gluten reaction, mineral depletion, or just good old unexplainable BFS like the doc said.

I'd appreciate any input.

Thanks

[Skylark]

Well, if it went away gluten-free and returned when you ate questionnable meals, I'd sure be looking hard at the gluten. People with neuro symptoms from gluten often react to tiny amounts. Also, has your B12 been tested?

[SheaLynne]

I'm new here, so I'm still learning, but this is an exact diagnosis of one of the symptoms I am watching closely. I was "dx'd" about 7 years ago with "benign fasciculations" by my family doc. He said it was stress and indicated that my active 3 yo at that time and my dh working fulltime and in school fulltime was the culprit.

Fast-forward seven years (with periods of no twitching and other times when they were fast and furious!) and when I went gluten-free 6 months ago (with newbie mistakes, of course!) that is one of the unexpected things that definitely decreased and seems to be mostly gone.

Last week I left my gluten-free communion at home and made the choice to take a tiny crumb of the wheat bread rather than not partake (I had been planning a gluten challenge about 6 months in anyway, so it seemed like a good opportunity). I had "d" the next morning and for the past week have had fast and furious twitches. Hmmm....

I'll be watching this for others who might have something similar!

[mommyto3]

I'm new here, so I'm still learning, but this is an exact diagnosis of one of the symptoms I am watching closely. I was "dx'd" about 7 years ago with "benign fasciculations" by my family doc. He said it was stress and indicated that my active 3 yo at that time and my dh working fulltime and in school fulltime was the culprit.

Fast-forward seven years (with periods of no twitching and other times when they were fast and furious!) and when I went gluten-free 6 months ago (with newbie mistakes, of course!) that is one of the unexpected things that definitely decreased and seems to be mostly gone.

Last week I left my gluten-free communion at home and made the choice to take a tiny crumb of the wheat bread rather than not partake (I had been planning a gluten challenge about 6 months in anyway, so it seemed like a good opportunity). I had "d" the next morning and for the past week have had fast and furious twitches. Hmmm....

I'll be watching this for others who might have something similar!

I'm glad to find someone else who also has BFS. Mine started after back surgery about 10 years ago and during the recovery I was SUPER stressed. I also think that's when the Celiac was triggered. Saw a neurologist who said I have an "overactive nervous system" whatever that means and said the twitches are harmless. He told me not to drink coffee.

I've been pretty good over the last couple of years but after being gluten free for 6 months I ate some questionable buffet food and the twitches started up like crazy. I also got burning down my arms and hyper sensitivity along the inside of my legs. So annoying.

At this point I just question the cause. Is it being glutened? Is it stress? Is it something else I'm eating or those four Advil Cold and Sinus pills that I took the morning of the buffet? I'd just like a clear cut answer.

Glad to hear that I'm not alone in this.............

[SheaLynne]

I've been pretty good over the last couple of years but after being gluten free for 6 months I ate some questionable buffet food and the twitches started up like crazy.

Hmmm...I'm really curious about that now, too. I haven't tracked my food intake and symptoms closely enough to be able to look back and see a pattern if it is accidental glutenings that have been causing my occasional twitchings. I'm considering trying a few more specific gluten challenges to see if it is directly related. I think it will help me see more clearly when I've been glutened and also help answer this question. I only had a couple of minor twitches today, so as soon as they seem to have subsided completely, I'll try another glutening to see if they come back in full force.

Definitely sounds like we have similar histories with it. Mine started a few years after our son was born with a critical heart defect. He was doing well but around his 3rd birthday we were being prepped for a big surgery (which never was needed since he surprised all the docs), plus dh being in school fulltime and me working from home while keeping our son fulltime. Alot going on, so stress probably did play into it, but it's strange that it seems to be so much better since being gluten free.

I'll keep you posted on my experiementing.

[drfeelgood]

Hello

Scientifically proven that BFS is an auto-immune disease caused by the ingestion of any amount of Gluten no matter tinny or not , the immune system starts attacking and destroying the Gut , the intestine is the organ that "connects and communicates" the most with the brain ,  this is were the brain starts signaling there is something wrong , with side effects like migraine , depression , anxiety, BFS , nephropathy , Parkinsons , head aches , memory loss, hair loss , rashes. Tipically gluten consumers think they are not allergic because they do not suffer any kind of stomach pain , discomfort or diarrea, scientists have discover that 97% of Gluten celiacs or sensitivity does not manifest via the digestive track, but on the peripheral nervouys system and the brain, with this said everyone who is suffering tingling, twitches , ants on their limbs buzzing should stop eating gluten right away , stop drinking coffee , exercise , and sleep at least 8 hours. Obviously no sodas , no junkk food and lower the stress levels. You will not see the results in one month , you have to keep the strict gluten free diet for 4 months and you will see results , trust me ! 

[ravenwoodglass]

4 hours ago, drfeelgood said:

Hello

Scientifically proven that BFS is an auto-immune disease caused by the ingestion of any amount of Gluten no matter tinny or not , the immune system starts attacking and destroying the Gut , the intestine is the organ that "connects and communicates" the most with the brain ,  this is were the brain starts signaling there is something wrong , with side effects like migraine , depression , anxiety, BFS , nephropathy , Parkinsons , head aches , memory loss, hair loss , rashes. Tipically gluten consumers think they are not allergic because they do not suffer any kind of stomach pain , discomfort or diarrea, scientists have discover that 97% of Gluten celiacs or sensitivity does not manifest via the digestive track, but on the peripheral nervouys system and the brain, with this said everyone who is suffering tingling, twitches , ants on their limbs buzzing should stop eating gluten right away , stop drinking coffee , exercise , and sleep at least 8 hours. Obviously no sodas , no junkk food and lower the stress levels. You will not see the results in one month , you have to keep the strict gluten free diet for 4 months and you will see results , trust me ! 

Welcome to the board.  You are responding to a thread that is  about 7 years old. Your info is interesting and I have seen a recovery from most of what you talk about myself and it was not a quick recovery. The only thing is that we advise anyone who thinks they may have a gluten issue to get tested for celiac first before dropping gluten.  If they don't and then later decide to test the reactions to the gluten challenge can be severe.  Also if you have any links to research dealing with this it would be quite helpful for others.

[drfeelgood]

Hi thanks for the welcome ,evern thoug it is 7 years old it stilll shows up in my browser search , that means someone at some point will read this , about recovery yes you are correct it is not a quick recovery , people have to be patient , If you have been contaminating your nervous system with Gluten for years  would you  expect to heal your gut in weeks ? , and regarding the Gluten tests , No I do not advice it , since 85% of the times patients who undergo a blood test for gluten sensitivity they come out negative , this is because Gluten is one of the most hard to detect proteins in the blood stream , it works in "waves" going up and down , and if the test happens to be performed during a "down" stage your results will come out  negative , plus this test is not covered by most of the insurance in America & it's quite expensive , so in few words I do not recommend getting tested , the other thing is that tests are created to detect Celiac patients but not delayed sensitivity , by delayed sensitivity I mean people who eat a piece of pizza ot whole bread , and one week after they are having all the emotional and nervous side effects of the Gluten contamination , no matter if is one whole wheat bread or one bite of pizza contamination is contamination , delayed sensitivity is the hardest to track , currently there are test performed for Gluten sensitivity , but since most of the side effects of Gluten are not life threatening , big pharma is not paying enough attention to this , maybe it is not a profitable as they think it should be , ALL sicknesses and illnesses are a result of internal  inflammation , Gluten , Milk and Sugar and inflammatory "foods", keep away from this substances , sleep well , do pshysical activities and lower ur stress levels and in 6 months you will feel better, please help me spread the word in this forum , this is really important for everyone , thanks alot

[kareng]

1 hour ago, drfeelgood said:

Hi thanks for the welcome ,evern thoug it is 7 years old it stilll shows up in my browser search , that means someone at some point will read this , about recovery yes you are correct it is not a quick recovery , people have to be patient , If you have been contaminating your nervous system with Gluten for years  would you  expect to heal your gut in weeks ? , and regarding the Gluten tests , No I do not advice it , since 85% of the times patients who undergo a blood test for gluten sensitivity they come out negative , this is because Gluten is one of the most hard to detect proteins in the blood stream , it works in "waves" going up and down , and if the test happens to be performed during a "down" stage your results will come out  negative , plus this test is not covered by most of the insurance in America & it's quite expensive , so in few words I do not recommend getting tested , the other thing is that tests are created to detect Celiac patients but not delayed sensitivity , by delayed sensitivity I mean people who eat a piece of pizza ot whole bread , and one week after they are having all the emotional and nervous side effects of the Gluten contamination , no matter if is one whole wheat bread or one bite of pizza contamination is contamination , delayed sensitivity is the hardest to track , currently there are test performed for Gluten sensitivity , but since most of the side effects of Gluten are not life threatening , big pharma is not paying enough attention to this , maybe it is not a profitable as they think it should be , ALL sicknesses and illnesses are a result of internal  inflammation , Gluten , Milk and Sugar and inflammatory "foods", keep away from this substances , sleep well , do pshysical activities and lower ur stress levels and in 6 months you will feel better, please help me spread the word in this forum , this is really important for everyone , thanks alot

That is not how the Celiac testing and Celiac antibodies work at all!  There are no scientifically reliable tests for Non Celiac gluten sensitivity currently.  

 

I would suggest you look at some reliable sites to get info about Celiac disease.  Here is one good site - Open Original Shared Link