Gluten Intolerance

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Re: Gluten Intolerance

Postby ezduzit on December 23rd, 2013, 11:19 am

For me, I have definately come to the conclusion that GLUTEN is the main culprit in my BFS. I had gastrointestinal issues that i kind of ingnored for a few years. (Gas and bloating). It started with noticeable tremors in my left arm, particularly if it had pressure on it. (like doing a push up) After a few months of this, I started getting twitches in my left arm. I made an appt. to see a neurologist. I had to wait two months to get in. The anxiety really started to ramp up while I waited. I had an episode of extreme brain fog for about a week. I felt like I was detached, in a dream like state. Soon, I had twitches in both arms, and occasional twitches everywhere else. I also get the night time limb jerks. Of course, after a brain and neck MRI, an EMG, and the various strength tests the neurologist does, I get the BFS diagnosis. (they did find a three bulging discs in my neck, but I was told that was not an issue). It took me a few visits and a phone call to even be given a script for a mild anti-convulsant, which does provide at least some relief. Like most others, I did my own research and put together the gluten explanation. I asked my primary physician to prescribe the gluten antibody test for celiac. That came back negative. I saw a gastroenterologist and described all of my symptoms. I advised that my blood test was negative for celiac. the Gastro ordered a colonoscopy only, no other tests, told me I had IBS, and basically dismissed me with a sample box of pro-biotics. So typical. I tried discussing the gluten intolerance issues with my neurologist, and he gave me about two sentences on it. Something like "try staying off the glutens for awhile, see if you feel better. Then try something with gluten, see if you get worse" I have done my best to be gluten free for six months or so, and I do see some improvement. I am trying to not ask my doctor about any anxiety medication, and my neurologist wants me to try and get off the anti-convulsant. I tried slowly coming off the anti-convulsants only to see the twitches and anxiety increase. Anyway, I would highly recommend the book "Wheat Belly" by William Davis MD. It is available in your local library. This doctor has the courage to say that most physicians have little to no training on Celiac or Gluten Intolerence. There is a chapter about the neuroligal side effects of glutens on the brain, and it includes twitching and the limb jerks. If you feel gluten may be your culprit, then read the book. You don't always have digestive issues, and like me may not test positive, but still have gluten intolerance. Continuing to eat gluten when you are intolerant can cause permanent damage.
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Re: Gluten Intolerance

Postby SecretAgentMan on December 23rd, 2013, 11:47 am

Thanks ezduzit. I had really bad brain fog myself just before I made the gluten connection and I have to say that was the scariest symptom for me. Part of the problem on this board is that the vast majority of people here don't see how a gluten intolerance can cause neurological symptoms. Their neuros don't seem to know either so why would they take something like diet being an influence seriously? It's good to hear from people like you because it helps raise awareness, which is what this needs right now. The more people who experience relief the better and diet is easy to try. Also you may want to look into a condition called leaky gut syndrome. If you treat for it you will likely be able to eat gluten again. There are several things you will need to do first but I did it and am back to my old self again. No more IBS either! Thanks.
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Re: Gluten Intolerance

Postby emmie.s on December 23rd, 2013, 2:22 pm

SecretAgentMan wrote:Also you may want to look into a condition called leaky gut syndrome. If you treat for it you will likely be able to eat gluten again. There are several things you will need to do first but I did it and am back to my old self again.


What what what??!?!
Ok I need to check that out. I miss pizza, beer, regular soy sauce, sweets, breads, sauces and French food so much.
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Re: Gluten Intolerance

Postby SecretAgentMan on December 23rd, 2013, 4:58 pm

emmie.s wrote:What what what??!?!
Ok I need to check that out. I miss pizza, beer, regular soy sauce, sweets, breads, sauces and French food so much.


This is kind of what I mean about needing to raise awareness. LOL

I used to post on leaky gut syndrome much more frequently but several members got fed up with seeing my posts suggesting people look into it, so I backed off. I still believe it is the culprit in many BFS sufferers cases but I also believe that stress management plays a key role in the development of leaky gut syndrome (not just diet alone). Anyway, so I like to post on stress and fear management as well. Regardless, in some cases I believe diet modification is necessary to fully recover from BFS and if people never investigate it they may never find the relief they seek.

emmie.s, you will want to research leaky gut syndrome and anti-candida diets. I can suggest some supplements that greatly sped my recovery such as Lauricidin and Interfase Plus, which help to break down the candida colonies that protect themselves with a biofilm. Interfase Plus in particular is good at breaking that biofilm down. Once the candida is under control you can take probiotics and they will re-establish in your digestive system. If you take them too early they will not have room to take root because the candida crowds them out. Once your digestive system is re-balanced and healed you can do the final phase which is reintroduce foods that once caused you issues. If you still react it is because your immune system learned to target them and has not forgotten. In cases such as this you can use the acupressure based allergy elimination techniques.
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Re: Gluten Intolerance

Postby emmie.s on December 23rd, 2013, 9:03 pm

Bless you SAM, you and bfsburger provided me with invaluable information months ago on your "diet challenge" thread, so I will make a real dedicated effort to give this a shot and check back in with this forum to give updates :)
Like I said, gluten is everywhere. I accidentally cheated this holiday season so it would be great yo get past this phase and start healing to get back to my "old self", fingers crossed.
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Re: Gluten Intolerance

Postby SecretAgentMan on December 23rd, 2013, 9:37 pm

And bless you emmie.s! I wish more people here were open and receptive to rolling up their sleeves and trying new things like this. Too many people already have experienced great relief through diet modification. The more people we have trying the more successful cases we will have and in turn the more awareness we will raise. Please feel free to PM me with questions if you have any and good luck.
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Re: Gluten Intolerance

Postby chicagobfs on March 2nd, 2014, 3:17 pm

I am on gluten free diet for almost three months and unfortunately there is no improvement in my symptoms, if anything I only got worse. I'm not sure if I should continue this diet since it is hard and costly. Not sure what's my next move should be. I'm having this for 5 years already and nothing is changing. My legs got really stiff and twitchy in last few days. I also saw Psych-neurologist and he said that there is no way that anxiety would create that kind of twitching. He had never seen anything like this. My neurologists also don't have an idea what to do. :roll:
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Re: Gluten Intolerance

Postby SecretAgentMan on March 2nd, 2014, 4:23 pm

I'm sorry to hear that chicagobfs. Gluten intolerance can't be a factor for everyone. Have you ever heard of the book 'Eat Right for your Blood Type'? The book details the different types of diets that people with different blood types seem to do better with. I'm an O+ and my blood type supposedly does very well on the caveman diet. O+ blood types also don't handle grains very well. Go figure. It's no wonder gluten ended up being a trigger when my digestive health started to break down. You may want to look into what foods your blood type does better with and which ones you don't.

I worked with a holistic doctor to get help with making the right diet modifications. Have you had any help or guidance? It is very difficult for us to take what works for someone else and try to emulate it because there may be unique little differences that need to be taken into account (such as blood type and natural diet tendencies). I'm just trying to throw out some suggestions for you to perhaps look into. I know how discouraging it can be to find dead end after dead end.

If there is one thing that my experience taught me it is that everything in nature happens for a reason. If you truly seek answers to help you find your imbalance or what needs addressing I believe you can. Just remember to never lose focus on stress management though too. That aspect of balance in our lives is paramount with BFS symptom management. Hang in there!
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Re: Gluten Intolerance

Postby BFSBurger on March 3rd, 2014, 12:49 am

chicagobfs wrote:I am on gluten free diet for almost three months and unfortunately there is no improvement in my symptoms, if anything I only got worse. I'm not sure if I should continue this diet since it is hard and costly. Not sure what's my next move should be. I'm having this for 5 years already and nothing is changing. My legs got really stiff and twitchy in last few days. I also saw Psych-neurologist and he said that there is no way that anxiety would create that kind of twitching. He had never seen anything like this. My neurologists also don't have an idea what to do. :roll:


I have mentioned this several times. Maybe it was missed. There is a lot more to this than just avoiding Gluten. I've said that so many times now that I can't find the energy to explain why, and what is involved, again. But its a lot more than just avoiding one ingredient. Its a whole lifestyle change from top to bottom. Much more on the food front (and no its not that hard, and should not be expensive at all, in fact its a much less complex diet regimen than the average person eats), and several other lifestyle changes that must be adhered to, at least for my symptoms to stay at bay. If all I did was stop eating bread (gluten) I would not expect my BFS to just disappear. This is a much bigger process. My signature goes into the details. This is why I have expressed frustration in the past towards others who scoff and say they tried it and it didn't work. I know for a fact they didn't do everything I did. Not even close.

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

viewtopic.php?f=3&t=19128
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Re: Gluten Intolerance

Postby chicagobfs on March 3rd, 2014, 5:29 pm

Ok burger I'm not reading forum everyday I actually didn't come for a while. I will read your posts, no reason to get frustrated.

"How I Cured my BFS (Benign Fasciculation Synd) within 1 Year" Is it the one I should read?

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Re: Gluten Intolerance

Postby johnnythejet on March 3rd, 2014, 6:50 pm

chicagobfs wrote:I am on gluten free diet for almost three months and unfortunately there is no improvement in my symptoms, if anything I only got worse. I'm not sure if I should continue this diet since it is hard and costly. Not sure what's my next move should be. I'm having this for 5 years already and nothing is changing. My legs got really stiff and twitchy in last few days. I also saw Psych-neurologist and he said that there is no way that anxiety would create that kind of twitching. He had never seen anything like this. My neurologists also don't have an idea what to do. :roll:

Add yourself to a long list of people that have tried everything under the sun, including dietary changes such as gluten free. The problem lies in the fact that some actually expect improvement from these trial and error solutions (which have been numerous over the years). The common theme in nearly all solutions has been reduction in anxiety, especially with regard to reducing focus on symptoms. That's not always the solution either, but has been the most productive based on feedback from BFSers giving feedback longterm.
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Re: Gluten Intolerance

Postby Spidermonkey on March 4th, 2014, 5:53 pm

I agree with Johnny. Dietary or other efforts redirect focus from underlying symptoms. There is, in my view, a significant placebo effect enjoyed by simply feeling that you are taking control and fighting this unknown quantity. For me, I would rather twitch (which 2 years on I still do) and laugh about it than have this benign condition actually dictate my lifestyle. Each yo their own.
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Re: Gluten Intolerance

Postby wjjw on March 5th, 2014, 5:54 pm

chicagobfs wrote:Ok burger I'm not reading forum everyday I actually didn't come for a while. I will read your posts, no reason to get frustrated.

"How I Cured my BFS (Benign Fasciculation Synd) within 1 Year" Is it the one I should read?

Sew

No doubt there are some good and healthy recommendations in BFSB’s detailed regime. Whether following it will eliminate BFS symptoms for someone will vary on an individual basis, and to know if it were the actual cause of your remission you’d have to experiment by going on/off more than once. It could have resolved anyway, or be caused by any combination of one or more of the things you tried.

I've tried numerous things, including completely eliminating all gluten for over a year, eliminating alcohol and caffeine, trying various vitamins and supplements, etc., and nothing helped. Notice I say nothing about eating “healthy” foods, eliminating anxiety, and getting decent exercise because I believe they go without saying and are essential to physical health regardless—with the most important emphasis on the state of your mind.

For me, a combination of daily Qigong and meditation definitely made a difference. And I can say this because I deliberately started and stopped this several times for months at a time and observed a corresponding reduction of BFS symptoms. Now I feel great and the twitching is reduced to barely noticeable (except when I’m fighting off a virus, etc.). I still enjoy wine (daily), coffee (daily, and yeah green tea too), pizza, and especially IPA beers.

Take care of the content of your mind and the emotions that you express. They hold the key to your wellbeing. When your body fails you, as it ultimately will regardless of what you do, they will be the only thing you have left. I’m sure SecretAgentMan will understand what I mean, and agree with this one.

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Gluten Intolerance

Postby SecretAgentMan on March 5th, 2014, 9:56 pm

wjjw wrote:I’m sure SecretAgentMan will understand what I mean, and agree with this one.


You know me too well Bill. :D

And I'm also an IPA beer fan myself. I have a home brew kit and my next creation will be an IPA. Can't wait!

On a side note, here is another article on how inflammation is linked with a number of different disorders (in this particular article they talk about Restless Leg Syndrome). Note that causes of inflammation include diet and particularly complex carbohydrates (like gluten). http://www.naturalnews.com/044154_restl ... ystem.html
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Re: Gluten Intolerance

Postby emmie.s on March 19th, 2014, 2:43 pm

I thought this thread was the best place to post the self-imposed setback I'm now facing, due to Satan's food (AKA gluten). I'm on vacation at a place where I'm finding it sorta difficult to find meals that are gluten free. Also, I've been lazy and have terrible willpower. Two nights ago at dinner I was starving, so when the waiter brought the breadbasket I gave into my hunger pangs and ate a little bit. To my delight, I didn't notice anything off, so I played a bit more with fire the next morning and devoured some chocolate croissants and caffeinated coffee. After a busy morning of sightseeing, I thought "why stop now, eat the bread in your turkey sandwich you happy fool!" And so I did. I laughed a bit and thought that maybe gluten was never the culprit, maybe my decrease in symptoms just happened to coincide with my foray into gluten-free living. This (false) thought made me smile, I thought "croissants, cakes, beer and soy sauce forever!!!!"
Then, with a full belly it was nap time and I drifted blissfully into sleep. Until 10 minutes later when my calves and left hamstring decided to thump themselves silly and hard enough to wake me up. After months of little to no twitching, aside from randoms, and no hotspots for months, I'm here to report that they're baaaaaack! This is not the first time I've noticed the correlation, but this time really made it clear to me that it's not just coincidence.
And I suppose it's time to go back to gluten-free. I've been meaning to read up on SAM's info on how to reincorporate it safely back into my diet at some point, so I guess this is my motivation to do so.
I know there are different bfs culprits for different people, and for some gluten free will make no difference at all...but for any newbies, it may be worth a shot.
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Re: Gluten Intolerance

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