BFS can be caused by gluten, recent studies

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Re: BFS can be caused by gluten, recent studies

Postby Amacra on May 14th, 2013, 2:59 pm

I know this is an old thread, but I thought I would post my personal experience with gluten sensitivity. I had a DNA test that showed I carry not one, but two genes that predispose me to gluten sensitivity. So I got a copy from each of my parents. My mother has fibromyalgia, diabetes, high blood pressure, heart disease, gout, IBS, and numerous other illnesses. I believe she also has leaky gut as a result of consuming gluten for so many years without knowing she was sensitive.

It's important to note that trying a gluten-free diet for a short period without a reversal of symptoms does not mean there is no connection. It can take years to reverse the damage done to the small intestine and recover from vitamin and mineral deficiencies. You also have to be extremely careful about food preparation, cross-contamination, hidden food ingredients and even personal hygiene products. It takes less than 1 gram of gluten to cause a reaction to someone who is sensitive. It could be as simple as consuming a crumb of bread from a peanut butter jar, it may not even be visible. My facial cleanser had a gluten derivative that I was unaware of until I researched every product in my regimen.

Lots of new research is showing how harmful gluten can be to someone who is sensitive. The condition can be dormant for many years but can be triggered by periods of high stress, illness, pregnancy, surgery etc. If nothing else, it's a much healthier way to live. Personally, I follow a paleo diet and have had success with probiotics, vitamin supplementation and just time to allow my system to heal.
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Re: BFS can be caused by gluten, recent studies

Postby BFSBurger on June 9th, 2013, 3:15 am

chrissi wrote:I think U R the first to get better with it, i am glad for U that it helps!

Tooooootally wrong there. In fact, most of the people I know who are doing better here, have gone gluten-free, and are doing a Paleolike non-inflammatory food diet. In fact, that's the only thing I've heard which has helped people for the most part. Outside of exercise. So he's definitely not the only one. I have been talking about this for a least five months. Food is a huge trigger for all of us. And for those who bothered to actually try it, it helps nearly everyone. "Laurent" comes to mind as well.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: BFS can be caused by gluten, recent studies

Postby aztwitchy on June 20th, 2013, 12:43 pm

BFSBurger wrote:
chrissi wrote:I think U R the first to get better with it, i am glad for U that it helps!

Tooooootally wrong there. In fact, most of the people I know who are doing better here, have gone gluten-free, and are doing a Paleolike non-inflammatory food diet. In fact, that's the only thing I've heard which has helped people for the most part. Outside of exercise. So he's definitely not the only one. I have been talking about this for a least five months. Food is a huge trigger for all of us. And for those who bothered to actually try it, it helps nearly everyone. "Laurent" comes to mind as well.


gluten free diet has taken my symptoms from an 8 to about a 3 on a 1-10 scale. its not a cure but it for sure is more effective than ANY drug I've taken so far to reduce symptoms. its a tough diet to stick to but it has gotten easier over time and the payoff has been worth doing it. I do miss real pizza though. :)
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Re: BFS can be caused by gluten, recent studies

Postby SecretAgentMan on June 20th, 2013, 1:21 pm

aztwitchy wrote:gluten free diet has taken my symptoms from an 8 to about a 3 on a 1-10 scale. its not a cure but it for sure is more effective than ANY drug I've taken so far to reduce symptoms. its a tough diet to stick to but it has gotten easier over time and the payoff has been worth doing it. I do miss real pizza though. :)


My wife has a really good gluten free pizza dough recipie that I can post or send to you if you're interested. :) I was able to get back on the gluten but now after having our second child she's had to get off of it. What a roller coaster!
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Re: BFS can be caused by gluten, recent studies

Postby aztwitchy on June 21st, 2013, 10:33 am

SecretAgentMan wrote:
aztwitchy wrote:gluten free diet has taken my symptoms from an 8 to about a 3 on a 1-10 scale. its not a cure but it for sure is more effective than ANY drug I've taken so far to reduce symptoms. its a tough diet to stick to but it has gotten easier over time and the payoff has been worth doing it. I do miss real pizza though. :)


My wife has a really good gluten free pizza dough recipie that I can post or send to you if you're interested. :) I was able to get back on the gluten but now after having our second child she's had to get off of it. What a roller coaster!


yes please do....they have a place in town that does a gluten free pizza and its ok...better than a store frozen one i tried but still not close to a good pie!
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Re: BFS can be caused by gluten, recent studies

Postby dARR on June 26th, 2013, 12:05 am

Gluten as cause was my great white hope! Unfortunatel going gluten free did not reduce my symptoms although i did however feel better generally and still maintain the diet as much as is possible I have had zero reduction in twitches.
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Re: BFS can be caused by gluten, recent studies

Postby SecretAgentMan on June 26th, 2013, 9:16 am

Sorry aztwitchy, I owe you a recipe... I'll try to remember to get it from the wife this week.

Darr, I totally understand the frustration. There are many looking for a silver bullet to knock out their twitches. I never found one. What I did find was a bunch of silver BB's that all incrementally helped me feel better. Gluten was only a piece of the puzzle. There is a reason that gluten is an inflammatory food, and if you have one, you likely have others. There is a network of relationships in the body that gluten sensitivity is actually a symptom of. The key is to dig into the cause for the gluten sensitivity, and the cause for that, and the cause for that, until you finally find the balancing factor(s) causing your issues. Diet in its entirety was only a piece of the pie. Every bit you can do to reduce the inflammation helps though. The body cannot heal until the inflammation is removed.
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: BFS can be caused by gluten, recent studies

Postby LaurentCH on July 8th, 2013, 10:15 am

independantly of how tolerant your body is to gluten we must not forget that grains (glutenrich and glutenfree) are clearly proinflammatory as are starch in general and sugar (from any source, regarded as healthy like fruit or not). in my case, getting off all this cured my bfs. i have still fascics now and then but i guess this is the rate that any other healthy indivuduum also has. it even cured my spondylarthritis and my neuropathic pains which of course could have been of the same origin like the fascics. going antiinflammatory is a great deal if it comes to bfs and stuff.
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Re: BFS can be caused by gluten, recent studies

Postby Aingealag on July 8th, 2013, 8:40 pm

Just adding my $0.02 here; I'm currently doing a 30-day Paleo challenge out of curiosity and a blogging project. I'm almost 3 weeks in and although I have only a mild reduction in twitches, the nerve symptoms are much much less! That's pretty awesome, because I don't mind the twitches at all, I only get flutters and they only stick around for a few seconds anyway. My calves can be a bit more fluttery at rest, but again, I don't mind them. I would even miss them if they left! But the nerve pains and parasthesia have driven me nuts, so to see them reducing is heaven-sent! I hope it stays this good!!

After my 30-day challenge I will loosen the restrictions quite a bit, but I'm feeling so good physically that I'll probably stay 90% grain free.

Cheers,

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Re: BFS can be caused by gluten, recent studies

Postby SecretAgentMan on July 9th, 2013, 10:29 am

Awesome news Wendy! So happy to hear this! :)
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Re: BFS can be caused by gluten, recent studies

Postby BFSBurger on July 9th, 2013, 5:22 pm

Aingealag wrote:a mild reduction in twitches, the nerve symptoms are much much less! That's pretty awesome, because I don't mind the twitches at all, I only get flutters and they only stick around for a few seconds anyway. My calves can be a bit more fluttery at rest, but again, I don't mind them. I would even miss them if they left! But the nerve pains and parasthesia have driven me nuts, so to see them reducing is heaven-sent! I hope it stays this good!!


Another success story :) It works Wendy. Stick with it. It took me a few months to really get the benefits. Just like you, it was the aches, pains, and stabbing nerve damage sensations that went away first. The twitching will hang around, but you should see it become less and less and less over time. The flutters are a breeze aren't they? Do your best to stick to chicken n veggies and if you feel weak and can tolerate them - potatoes are a great source of energy and strength for me. I go skinless though just to be safe. If you can get to a point where its no pizza, no breads, no caffeine, and limited sugars (only after workouts as Gatorade) ... you should see things really transform. Remember to mix in moderate exercise and sufficient rest in between. This may be your other most influential benefit.

daRR wrote:Gluten as cause was my great white hope! Unfortunatel going gluten free did not reduce my symptoms although i did however feel better generally and still maintain the diet as much as is possible I have had zero reduction in twitches.

I would be interested in hearing the details however. I run forums like these for 13 years and its pretty routine that someone says they tried something and it didnt work, but what they actually did, wasn't correct. Or it wasn't for long enough. I am not saying this is the case here, but before you give up, I would want a crack at ya with a regimen suggestion or two! :) So exactly what did you eat, and how long did you try for? And no cheating (reading the paragraph above). Be honest. You need to understand that I can do this diet all week, and all it takes is one huge pizza, and things get messy again. One cheat meal done too soon can set you back 5 days of progress in the beginning, easily. So the devil is in the details...

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How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: BFS can be caused by gluten, recent studies

Postby SecretAgentMan on July 9th, 2013, 8:23 pm

BFSBurger wrote: I run forums like these for 13 years and its pretty routine that someone says they tried something and it didn't work, but what they actually did, wasn't correct. Or it wasn't for long enough.


I would agree with this based on my own experience starting out on my diet change. It was difficult at first because I didn't realize just how many things gluten is in. For the first few months I was slipping up all the time because I would not realize that gluten was added as a filler in a supplement I was taking or in some food I thought was safe. People don't realize how just a tiny amount of an inflammatory food can unleash a sizable response from the body setting you back days. Also based on my personal experience I know just how hard it was for me to initially accept a diet change on top of all the crap I was going through at the time. Foods are a comfort to people and many times we just don't want to give up certain things.
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Re: BFS can be caused by gluten, recent studies

Postby BFSBurger on July 10th, 2013, 8:31 pm

Agreed. Militant isnt even the word. You have to be psycho about it :) Unless you are in the grocery store reading every single word on every package you buy, then you aren't doing this correctly. And I know for a fact most here don't bother with that. When you finally realize the damaging effect of things like MSG .... and then you start finding it in nearly everything you're eating ... even TV dinners .... you realize how important it is to stick to the regimen correctly. It takes dedication. And even then you have to do some trial and error / elimination diet type stuff to make sure your body isnt reacting to things that seem "safe". If you aren't doing this, you aren't doing the BFS diet change correctly.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: BFS can be caused by gluten, recent studies

Postby muppetdog on July 11th, 2013, 5:42 pm

Foods are a comfort to people and many times we just don't want to give up certain things.


So true. When I feel like crap all I want is 1 -9 cupcakes.
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Re: BFS can be caused by gluten, recent studies

Postby aztwitchy on July 11th, 2013, 6:39 pm

its probably worth mentioning just going gluten free is not what worked for me. there are like 50 bakeries in every town that make gluten free cupcakes...im sure if I ate one of those it would be worse than just having a few slices of pizza....the diet that worked for me was not only gluten free but low immflamatory...i cut out processed sugar, nuts, anything with gluten and cut down on dairy quite a bit to the point i go 5 of 7 days of no dairy whatsoever. I also cut out eggs. its a pretty radical shift but the benefits are noticable enough to continue.

SAM the comfort part is missing and I can feel that emotionally.
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Re: BFS can be caused by gluten, recent studies

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