Gluten Free

Information about how to manage or reduce the severity of BFS symptoms

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Gluten Free

Postby paulhp on March 21st, 2015, 2:31 am

Good morning good evening fellow twitchers just a quick question

Has anyone followed or is currently having a gluten free diet ?

i ask as i was reading this https://www.coeliac.org.uk/coeliac-dise ... /symptoms/
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Re: Gluten Free

Postby Yuliasir on March 21st, 2015, 3:12 am

well, for many years I am practically on very low gluten diet (if not free) - I almost do not eat bread or pastry, practically no beer (had some experience only a year ago - and to be honest I am not a great fan of it), my favorite cereals are traditionally buckwheat and rice... Pasta is really occasional since the last 20 years or so (I dislike it, to be honest).
For me my diet does not affect netither twitching no bowel issues (I have them since my childhood, I think in a way close ot IBS).
I had a gluten rich food episodes for the last 9 months - due to certain circumstances, and I did not find any changes in my twitching as well (they did not become greater).

Other fellows have other experiences, as far as I know.
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Re: Gluten Free

Postby paulhp on March 21st, 2015, 3:16 am

Yuliasir wrote:well, for many years I am practically on very low gluten diet (if not free) - I almost do not eat bread or pastry, practically no beer (had some experience only a year ago - and to be honest I am not a great fan of it), my favorite cereals are traditionally buckwheat and rice... Pasta is really occasional since the last 20 years or so (I dislike it, to be honest).
For me my diet does not affect netither twitching no bowel issues (I have them since my childhood, I think in a way close ot IBS).
I had a gluten rich food episodes for the last 9 months - due to certain circumstances, and I did not find any changes in my twitching as well (they did not become greater).

Other fellows have other experiences, as far as I know.


Thank you for your insight yuliasir
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Re: Gluten Free

Postby SecretAgentMan on March 21st, 2015, 11:54 am

Changing my diet was instrumental in my recovery from BFS. Others notice a reduction in symptoms depending on their diet as well. Some don't. Everyone is different. It just depends on your own unique factors, influences, and triggers for your specific case. We all may manifest similar symptoms on the macro level for completely different reasons on the micro level.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: Gluten Free

Postby paulhp on March 21st, 2015, 11:58 am

SecretAgentMan wrote:Changing my diet was instrumental in my recovery from BFS. Others notice a reduction in symptoms depending on their diet as well. Some don't. Everyone is different. It just depends on your own unique factors, influences, and triggers for your specific case. We all may manifest similar symptoms on the macro level for completely different reasons on the micro level.


What did you change ?
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Re: Gluten Free

Postby SecretAgentMan on March 21st, 2015, 6:16 pm

Early on after my GP and neuro ran through all kinds of tests and had no answers for me I ended up going to see a holistic doctor. One of the first things they recommended was to cut out wheat and dairy products since they contain hard to digest proteins and are common trouble foods. When I finally broke down and decided to try their recommendation I started feeling better within a few days. The twitching did not go away, but it did diminish. I had other issues I was going through pretty much disappear though, so I felt a great deal better. I was having terrible episodes of brain fog, night sweats, panic attacks, and other stuff going on besides the twitching. One of the first things I did in giving up dairy was I switched to soy milk. Within a few weeks I began getting headaches when drinking soy milk or when I had a product with soy in it. I was developing new food sensitivities. That is when I learned about a condition called 'leaky gut syndrome'.

I went on a rotational diet and kept a food journal. The diet rotation makes it difficult for your body's immune system to learn to target new foods. In leaky gut syndrome the lining of your intestines is under so much inflammation that it does not do its job properly. Normally it is only supposed to let nutrients from your food through but in this case undigested food proteins make it through. Your immune system and detox organs become overwhelmed and foods begin to be targeted as a threat. Leaky gut syndrome is primarily caused by an imbalance in gut flora. Good bacteria is far outnumbered by a natural yeast called candida.

I had to take an aggressive diet approach to not only avoid foods that were inflammatory for me, but I also had to avoid foods that were feeding the candida. I pretty much adopted the Paleo diet. No grains except rice, no dairy, no soy, no sugars (artificial or natural), no vinegars, no alcohol, no nightshade vegetables (potatoes, tomatoes, peppers, eggplant) etc. I pretty much ate meat, fish, veggies, fruits, and rice. It was pretty strict for about 6 months while I healed. I took some L-Glutamine supplements to help speed the healing process up for the intestines. I took a supplement called Interface Plus to help speed up the die off of candida. In the last few months I took lots of probiotics to repopulate the good bacteria. Around 8 or 9 months in I began working foods slowly back in to my rotation. I was able to resume eating nightshade vegetables, limited sugars, alcohol, and a few other things. Unfortunately I still had negative reactions to dairy, soy, and wheat/gluten. Fortunately I was going to see holistic doctors that had an array of awesome tools and techniques at their disposal including an acupressure based allergy elimination technique. I thought it sounded too good to be true at first, but they had already won my trust with all of the amazing results we had achieved. I was willing to go out on a limb and trust them. Sure enough it worked. After a few treatments I was able to eat gluten, dairy, soy, and a few other foods without having headaches, twitching, or other weird symptoms.

Even though I could eat these foods I ate them in much more moderation than ever before. I had come to appreciate a simpler healthier diet that was avoiding a lot of processed foods and I felt wonderful. I felt better in my 30's than I did in my 20's, even before BFS started for me. I don't doubt that diet was part of it. I didn't consider myself to eat unhealthy either. I ate what society had taught me was healthy. I trusted the FDA certification for what we should or should not eat. Food in the freezer section of the grocery store that comes in a box that you microwave and is called 'healthy choice' for example, I had learned was not really healthy at all.

Today I no longer have BFS. I consider myself fully recovered. I was fortunate to find the cause for my condition, the triggers that made the symptoms flare up, and the solution. Not everyone here may have leaky gut or food sensitivities driving their symptoms. It is worth exploring, but even if you do have it you may have different trigger foods than I did. You may have different side issues going on. My holistic doctors were able to help me treat far more than just the food stuff. I'm giving the 20,000 foot view here. I don't know what I would have done if not for finding those awesome doctors that helped me along the way. Whatever you do, I recommend finding good help because it is a journey to recover and heal and good guides know the short cuts. This condition did not develop over night and there is no magic bullet or instant cure. Recovery for me required some changes in lifestyle and a commitment to do so. It is not easy to give up certain foods. I think I know how smokers feel who try to quit and then suffer when they sit and watch their friends smile and enjoy a smoke. It's hard to walk past a Cinnabon and smell all that sugary delicious gluten and not be able to eat one.

What really helped me get through it was 3 things I think. First, I just had to remind myself how much better I felt when I was staying away from those trigger foods. Second, my wife was very supportive and ate a lot of the foods I did. She did her best to not eat things I missed in front of me. Third was that I got creative with new recipes and foods that I could eat, which helped keep me distracted from missing old foods. It is amazing the difference that your perspective makes. Instead of being negative about what I couldn't eat, I stayed positive and focused on exploring new things. Remember your perspective.

Anyway, I hope this answered your question and then some. Let me know if you have more. Good luck.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: Gluten Free

Postby Yuliasir on March 22nd, 2015, 1:43 am

no sugars (artificial or natural)


Artificial sugars? What do you mean?
And you still eat fruits. If the fruits mean at least apples and bananas, or even lemons and kiwi... believe me, you got enough of natural sugar :)
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Re: Gluten Free

Postby SecretAgentMan on March 22nd, 2015, 7:32 am

Yuliasir wrote:
no sugars (artificial or natural)


Artificial sugars? What do you mean?
And you still eat fruits. If the fruits mean at least apples and bananas, or even lemons and kiwi... believe me, you got enough of natural sugar :)


Your are correct. Let me clarify what I meant by "artificial and natural sugars". Refined white sugars, raw sugars, artificial sweeteners, and honey. I did eat fruit but limited the consumption to one piece of big fruit or equivalent portion size of small fruit. Yes fruits are a natural source of sugar, but the potency is less than the previous sources listed. Sorry for the confusion.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: Gluten Free

Postby leaflea on March 26th, 2015, 9:45 pm

I have been (not strictly) gluten free since January. My cramping is all but GONE! I had one cramp in the past 10 days where I used to have at least one per day. My twitching is down at least 80% and I've lost ten pounds. Doing something right. Would I have improved without this change? Who knows. I also started taking calcium in the form of TUMS. These are the only things I've noticed to make any difference.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Gluten Free

Postby mwagner on March 27th, 2015, 10:37 am

I've been gluten free for over 3 years. No difference in my twitching, but huge difference in gastrointestinal distress. The doctors had diagnosed me with IBS years ago, and now I don't think I have IBS anymore. I think it was the gluten. That being said, if I am very anxious, my IBS flares up. Being gluten free has been fantastic in the way my digestive system works. Gone are the days of being bloated after eating, or having episodes of bad gas for instance (well, unless I eat a ton of beans). I don't miss it at all. There are so many great gluten free products nowadays (gluten free pizza, bread, etc.), it's really easy to me and you can still have rice, corn, potatoes, quinoa, etc. The only thing I miss is fresh, hot bread at restaurants. But, I get past that with a nice glass of wine :)

So, I would say - go for it. If it doesn't make a difference in a few months, you can see if cutting something else out might make a difference (e.g., dairy). I have been all out paleo for several months and noticed it made no difference with my twitching (although the doctor I currently see who is a D.O. (so an M.D.) and worked with Dr. Weil, swears by the benefits of paleo).

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Re: Gluten Free

Postby BFSBurger on April 1st, 2015, 10:56 am

Eliminating gluten and wheat proteins was a huge part of my recovery. It only took some common sense. I noticed that my symptoms got slightly or significantly worse after eating. This made me realize that food was triggering some sort of reaction. If not the entire thing.

I began an elimination diet, and ultimately found my trigger foods. Eliminating gluten and wheat proteins resulted in significant improvement in my sensory symptoms, pain, muscle aching, joint issues, and nerve stabbing sensations. It took about 2 to 3 weeks. But it was noticeable. After a good year and a half of avoiding these foods, I am able to have cheat meals no problem.but I definitely don't make a practice of eating like that ever again.

Please be advised, anyone who tells you that the only form of gluten intolerance is celiac disease, is wrong.

There's a whole spectrum of gluten intolerance, wheat protein intolerance, and non-celiac gluten sensitivities. This is a proven fact. The logic behind all of this? These proteins have been shown to compromise the gut lining, resulting in permeability, and inflammation. Given the fact that 80% of your immune system is in your gut, any irritable bowel or other similar disorders, are going to result in immune reactions. And when the immune system goes crazy, you feel everything under the sun. Every symptom possible.

Sugar.

Sugar is also a huge huge cause of symptoms for me. It's more of a systemic, body wide reaction that happens gradually as I continue to drink sodas, cookies, or have ice cream. Even just candy. It's well-known that sugar promotes inflammation throughout the entire body. In normal people this is a gradual process that happens over decades, and promotes everything from cancer to autoimmune disease to heart disease. In us? Or me specifically and several others here? It can promote systemic agitation that causes a lot of discomfort.

I would like to say one more thing. Though you may see a lot of people here claiming none of this matters, they can't make that claim. Why? Because they've never removed themselves from their current dietary environment.

You can't know if this stuff helps until you've completely eliminated it for a couple months. And who here has the will power or even motivation for that? Very few. The only reason I was able to do it, was because of my fear of disease. I knew something was coming. I couldn't feel this horrible all over, and have "no cause". So to me it was a life or death matter. As I've gotten better, I've gotten lazy. And I've lived to regret it several times now. It can all come back. So there's no doubt in my mind that these things are huge.

Sugar comes in fruit. Every morning I have blueberries, cantaloupe, and BlackBerries with my breakfast. But that's it. You're not going to see me do a "juice cleanse, full of apples, bananas, or even carrots. That's just a pure sugar drink. I would highly encourage you to completely eliminate Processed sugars though.

Not only will you drop pounds fast, but your body is going to calm down. And calming down is exactly what everyone here needs. Their nerves. Their muscles. Their brain. Their gut.

The whole system needs to calm down. Eliminating sugar makes this possible.
How I resolved my BFS within 1 year of onset:

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

Postby SecretAgentMan on April 1st, 2015, 6:39 pm

BFSBurger,

I found it helpful to use honey as a sugar substitute as well. Have you tried this? I even use it as a topping for pancakes or french toast instead of syrup or powdered sugar. Honey is still a natural sugar but it is dramatically different from processed sugars and is less potent. I don't go crazy with it and eat it in moderation of course, but for those times when I need something sweet honey does the trick.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: Gluten Free

Postby misterjuanperalta on April 1st, 2015, 7:07 pm

Hi,

A strict, gluten-free diet reverses ALS-related findings.

Watch video - https://www.youtube.com/watch?v=Wliz6Gbg4fE

Source: http://www.ncbi.nlm.nih.gov/pubmed/19910450

Note:

There are many screening blood tests for celiac disease but the most sensitive and commonly used, whether symptoms are present or not, is the tTG-IgA test. Tissue Transglutaminase Antibodies (tTG-IgA) – The tTG-IgA test will be positive in about 98% of patients with celiac disease who are on a gluten- containing diet.

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Re: Gluten Free

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