The twitching is totally worth it (food sensitivities)

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

Moderators: JohnV, Arron, garym

The twitching is totally worth it (food sensitivities)

Postby emmie.s on November 4th, 2013, 11:19 am

My eldest kid did an awesome job scoring tons of Halloween candy last week. I ate so much, without bothering to read the labels. And, I'm pretty sure the many Kit-Kat and Twix bars I inhaled had gluten and tons of sugar. I ate so much, that I am more concerned with my thighs now than with the twitching that resulted.

This past weekend, I went to a charity dinner where like 100 of the best restaurants in town give samples of their food. So good. So much gluten. So much twitching afterwards.

Today is a new day, and I'm ready to get back on track. I have a hotspot on my knee which is particularly annoying, plus I read some post last week about eardrum twitching. My eardrum hasn't twitched since 2009, but now of course I have that too!!! Ah, the power of suggestion.

:D It was totally all worth it. It also proves to me that there are triggers that cause my twitching, and I need to get my gut back on track. I ran out of probiotics a week ago, and I just ordered them from Amazon last night. I know I have an autoimmune thing going on, and I know that there is evidence that PNH can be autoimmune too. And I know that certain foods can trigger an autoimmune response. And I know that in my case, that response is twitching.

Take care guys!!!
Last edited by emmie.s on November 4th, 2013, 11:26 am, edited 1 time in total.
User avatar
emmie.s
Hero
Hero
 
Posts: 363
Joined: February 17th, 2009, 9:33 am

Re: The twitching is totally worth it (food sensitivities)

Postby Anxious guy on November 4th, 2013, 11:26 am

Do you think that gluten can cause localized twitching too ? like my constant hotspots on the tongue and tricep ? I have the random ones too all the time but why hotspots ?? Its started off in my tongue and after a week went everywhere and its still at my tongue!!
Anxious guy
Hero
Hero
 
Posts: 341
Joined: October 10th, 2013, 3:38 am
Location: Northern Ireland / U.K

Re: The twitching is totally worth it (food sensitivities)

Postby emmie.s on November 4th, 2013, 11:37 am

I don't know about you, but for me it most certainly does. When my diet is nice and clean, I will go days and days without twitching, except for maybe a random little flutter that lasts a second here and there.

Anxiety certainly makes the hotspots go on longer. I remember when my thumb was twitching nonstop, I would focus on it hourly for two months. I think that prolonged it. When I got another hotspot on my toe, I took note of it, then ignored it, and within a few days it went away. If I had paid it more attention, I know it would've kept on. The mind is so powerful. Kind of like when I just read about ear twitching, and now I have it. Its more than coincidence, its my mind causing a psychosomatic response. That, plus the gluten causing the antibodies to bind to potassium channels or some sort of hypothesis like that. :)

Please don't freak out about a constant twitching body part!!!! It's to be expected. I would say the great majority of us here have had hotspots.
User avatar
emmie.s
Hero
Hero
 
Posts: 363
Joined: February 17th, 2009, 9:33 am

Re: The twitching is totally worth it (food sensitivities)

Postby Anxious guy on November 4th, 2013, 12:03 pm

Thanks Emmie, its the constant ones that really are hard to relax about as they just keep going... I must try to look at this gluten idea... Ive gotta educate myself to see how many things I eat have gluten lol ... I bet its loads !!
Anxious guy
Hero
Hero
 
Posts: 341
Joined: October 10th, 2013, 3:38 am
Location: Northern Ireland / U.K

Re: The twitching is totally worth it (food sensitivities)

Postby BFSBurger on November 4th, 2013, 12:34 pm

This thread is hilarious.

I seriously downed a gallon of dark chocolate over the weekend and boy did I pay LOL ...

Thankfully it seems to die down now for me in a day or two at the most. Then again I've got months of eating right under my belt so far ..

I don't know if its Gluten, Gut Permeability, Histamine producing foods, Difficult to digest foods, Foods with Arginine (chocolate, peanuts etc), Stimulants, or what .... but eating like a Celiac patient seems to completely resolve my BFS.

I can even cheat now and then without so much as a flutter. Feels great.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
User avatar
BFSBurger
Saint
Saint
 
Posts: 852
Joined: October 3rd, 2012, 10:19 am

Re: The twitching is totally worth it (food sensitivities)

Postby emmie.s on November 4th, 2013, 1:35 pm

BFSBurger wrote:I don't know if its Gluten, Gut Permeability, Histamine producing foods, Difficult to digest foods, Foods with Arginine (chocolate, peanuts etc), Stimulants, or what .... but eating like a Celiac patient seems to completely resolve my BFS.


BFSBurger, I was thinking the same thing...a feeling of sadness swept over me when I thought that perhaps chocolate is screwing me over too. Peanut M&M's are so darn good. Carob just doesn't cut it, you know? But hopefully one day I will get to the point where I can "cheat" like you too with minimal repercussion. :)
User avatar
emmie.s
Hero
Hero
 
Posts: 363
Joined: February 17th, 2009, 9:33 am

Re: The twitching is totally worth it (food sensitivities)

Postby Anxious guy on November 4th, 2013, 1:53 pm

I will eat anything if it stops my constant hot spots right now !! The tricep going every few seconds is bothering me more than the tongue right now I think !! Any food at all !!
Anxious guy
Hero
Hero
 
Posts: 341
Joined: October 10th, 2013, 3:38 am
Location: Northern Ireland / U.K

Re: The twitching is totally worth it (food sensitivities)

Postby SecretAgentMan on November 4th, 2013, 4:05 pm

Gluten did not cause twitching directly for me. It actually caused an anxiety type reaction which in turn caused the twitching and other BFS symptoms. I had to avoid it long enough to realize the relationship though. Also it's as much about what not to eat as it is what to eat.
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.
User avatar
SecretAgentMan
Saint
Saint
 
Posts: 1048
Joined: June 30th, 2010, 3:42 pm
Location: Dayton, OH suburbs

Re: The twitching is totally worth it (food sensitivities)

Postby Anxious guy on November 4th, 2013, 4:11 pm

Would this show u in blood tests such as c reactive protein ? I think that shows inflammation ... Mine was really low....
Do any tests indicate if gluten is a problem?
Anxious guy
Hero
Hero
 
Posts: 341
Joined: October 10th, 2013, 3:38 am
Location: Northern Ireland / U.K

Re: The twitching is totally worth it (food sensitivities)

Postby SecretAgentMan on November 4th, 2013, 5:50 pm

Anxious guy wrote:Would this show u in blood tests such as c reactive protein ? I think that shows inflammation ... Mine was really low....
Do any tests indicate if gluten is a problem?


Absolutely it will show up in a blood test. I was tested for antibodies against ~96 of the most common foods. Here is the summary of the blood test I had done back in 2010 if you want to download it from my dropbox: https://dl.dropboxusercontent.com/u/105 ... 20Test.pdf

You can probably go to the website to get a kit to get tested yourself. I'd recommend all BFS'ers get this test because it gives you concrete evidence of what foods you need to avoid and which ones are OK. A lot of food sensitivities usually means you have a condition known as Leaky Gut Syndrome. Once treated and healed most of the food sensitivities go away. If not, there are acupuncture procedures to eliminate the sensitivities.
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.
User avatar
SecretAgentMan
Saint
Saint
 
Posts: 1048
Joined: June 30th, 2010, 3:42 pm
Location: Dayton, OH suburbs

Re: The twitching is totally worth it (food sensitivities)

Postby BFSBurger on November 4th, 2013, 5:57 pm

Anxious guy wrote:Would this show u in blood tests such as c reactive protein ? I think that shows inflammation ... Mine was really low....
Do any tests indicate if gluten is a problem?

There's some tests to determine if you're a celiac (condition of damaged gut caused by gluten) but C reactive protein is normal in most of us here.
In fact, all traditional inflammation markers are normal for most of us.
But the traditional markers (ANA, etc) are very vague.
I went a step further to have my individual immune markers tested.
There are several markers like TGF and others like inflammatory Cytokines which indicate systemic inflammation.
The only reason I was able to get this test is because here in Miami, the Klimas Clinic has exclusive rights to Nova Southeastern Univ to run these tests for research purposes.
Usually for people with ME (Chronic Fatigue Syndrome).
I expected to see autoimmunity developing.
What I found instead was (as per Dr. Rey) "Completely burned out inflammatory markers".
Burned out means they were at one point, and for a prolonged duration, literally out of control high.
And they were now completely depleted.
I have no idea what the takeway from that is, but it is the *only* set of bloodwork (outside of a new CMV infection) that was abnormal.
Keep in mind other things like Cortisol levels, and adrenal chemicals can play a role in inflammation too.
Unfortunately doctors know very little about any of this. Found that out the hard way.

What I and others had to do, once we had "had enough" ... was whittle our eating down to the bare minimum.
I personally ate nothing but chicken, potatoes, and vegetables (with varying paleo-friendly sauces) for several weeks.
I found a *LACK* of "feeling like crap" after eating these foods.
So I stuck with that. Hoping that not triggering symptoms, would allow for healing.
Whatever "healing" means in this case. Maybe gut ? Maybe calming of the overall system. I don't know.

SAM: regarding food antibody tests, have you heard Chris Kresser's take on them?
He found that the same tests run on the same people at different times returned completely opposing results.
So he came to the conclusion that they're not reliable enough to rely on.
There are some studies on this recently. Unfortunately I wish it weren't true :(

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

viewtopic.php?f=3&t=19128
User avatar
BFSBurger
Saint
Saint
 
Posts: 852
Joined: October 3rd, 2012, 10:19 am

Re: The twitching is totally worth it (food sensitivities)

Postby emmie.s on November 4th, 2013, 6:56 pm

I tested positive for ANA's twice, but with low titers. However, they were high enough for my neuro to refer me to a rheumatologist, plus I had a low grade fever and fatigue when outside for too long. Not much came of that, but she did suggest I try Plaquenil as an anti inflamatory, and the neurologist suggested Gabapentin for the burning and electric shocks in my feet and arms. I filled the prescription, then didn't really use them. I tested weakly positive for the ANA's that are markers for Lupus, Sjogren's, and MCTD. The neuro also noticed hypermobility and suggested I make an appointment with genetics, since twitching is not uncommon in Ehrlos Dahnlos Syndrome, and I could also perhaps get tested for hereditary Neuromyotinia, upon my suggestion not hers (at this point the neuro was just humoring me, yet willing to help me get answers and take my money). I decided not to go, in part because I don't think it really matters, and in part because I really don't know if there is any correlation between any of this, or maybe the fact that I was on antibiotics too often last year, and the twitching. Doctors are clueless, and they figure "hey its not gonna kill you so don't sweat it trying to find the root cause" which is true, but also not very helpful.
All my doctors stressed that whatever I had, was not serious, and the Rheumy wasn't too concerned with my ANA numbers because whatever I have (if I have anything autoimmune at all) is mild. My Acupuncturist (who was a doctor in China for 35 years) was also quite certain that the twitches were a result of something autoimmune, but it was mild. I realized I needed to focus on keeping the inflammation down through diet in order to avoid having to take the drugs.
Also, my neutrophils were always ever so slightly elevated, but not to the point where it warranted another specialist. I read somewhere that there is some sort of correlation between that and inflammatory markers. Hmmm. I ought to get all of this tested again in a few months to see if my diet is helping any. I know for sure I no longer have a constant low grade fever (again a sign of autoimmune issues) and I feel so much better, with less fatigue! So I would say I am on the right track. :)
Last edited by emmie.s on November 4th, 2013, 7:23 pm, edited 1 time in total.
User avatar
emmie.s
Hero
Hero
 
Posts: 363
Joined: February 17th, 2009, 9:33 am

Re: The twitching is totally worth it (food sensitivities)

Postby emmie.s on November 4th, 2013, 6:59 pm

Also, BFSBurger and SAM, you guys provide so much helpful information. THANK YOU!!! Especially SAM for starting that "diet challenge thread", it was really instrumental in forcing me to look at this from a totally different perspective.
User avatar
emmie.s
Hero
Hero
 
Posts: 363
Joined: February 17th, 2009, 9:33 am

Re: The twitching is totally worth it (food sensitivities)

Postby SecretAgentMan on November 4th, 2013, 7:43 pm

emmie.s wrote:Also, BFSBurger and SAM, you guys provide so much helpful information. THANK YOU!!! Especially SAM for starting that "diet challenge thread", it was really instrumental in forcing me to look at this from a totally different perspective.


Thank you for the acknowledgement, but it is you who is most responsible for this change in perspective so don't forget to acknowledge your own contribution and accomplishment as well. Perspective means so much in this world we live in. Everything we think, feel, and believe is based on it. No matter what message we are seeing, hearing, or reading it is up to us to consider it, accept it, or reject it. No matter how hard any one tries, no view or perspective can be imposed on anyone. It is a free will choice we make on our own, and in order to truly receive a message we must truly be ready to receive it. This means we must be ready and willing to change our perspective to evaluate the new information. It also means our desire to learn and grow must be greater than our resistance to change. It is natural for human beings to emotionally invest themselves in their set ways of thinking and believing, so it is no small feat when we shift our perspective.

BFSB and I did not shift your perspective for you. We simply shared our thoughts and experiences for all to consider. It was you who were ready to hear such a message and to investigate it for yourself, and you benefited from it. We may not always benefit from opening our minds and considering new information, but we still learn, grow, and gain experience from it that we would not have otherwise. Anyway, I simply wanted you to understand the real hero here is you for daring to expand your horizons and open your mind to new perspectives. It is perhaps one of the most rewarding changes I have made in my life thanks to BFS. I am much more open minded than I was before BFS because of my experience in overcoming it. So, thank you! :)
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.
User avatar
SecretAgentMan
Saint
Saint
 
Posts: 1048
Joined: June 30th, 2010, 3:42 pm
Location: Dayton, OH suburbs

Re: The twitching is totally worth it (food sensitivities)

Sponsor

Sponsor
 


Return to Experiences with BFS

Who is online

Users browsing this forum: Google Adsense [Bot] and 3 guests