Reckoning with Food-Related Issues

Highlights Only
B

BFSDiner

Well-known member
Hi everybody, I still have to reconcile in my mind why eating certain foods cause major issues for me. My most annoying twitch (on the side of my head) had been silent for nearly 2 weeks. Yesterday I went out of my way to eat an entire chocolate bar, and a caffeine-filled coke. Within an hour, after 2 weeks of *complete* silence ... the muscle on the side of my scalp started thumping. This continued, unabated, for nearly 8 hours. My left calf felt tight. My left foot transitioned between feeling cold, and feeling like it was burning. I had been following my diet regimen perfectly for a long time. I hadn't had a single twitch on my scalp. Yet now it was back in full force. For me, foods can be triggers. Do any of you get reactions from foods? Doesn't matter what it is. Nerve pain. Tingling. Coldness/Burning sensation? Increased twitching. Muscle aches? Cramping? Stabbing pains. Joint pain?Maybe I am the only one. Maybe I have a new syndrome called Celiac-BFS. :) Who knows. But this is why I personally have to be a proponent of dietary changes. Exercise is a major mediator of symptoms, as is stress reduction. But I can be as calm as ever. If I eat a whole pizza and a Redbull, symptoms are usually stirred back into action. If nobody else has this, then I will research what may be unique for me. -Burger-
 
Caffeine has always had an effect on my hand tremors, but never on twitches. No other food has ever impacted my symptoms. It might be worth adding that of the hundreds of twitchers I've been very familiar with over the years, food triggers aren't anything I recall being mentioned. Im sure there must have been a few cases in there somewhere, but very few if so.
 
Caffeine in combination with too much sugar does increase my tremors and if I really overdo it, I will get a few twitches.. It never had any effect on my pains or paresthesias. I have been a very healthy living person long before BFS, and when I got it I was nursing a baby with neurodermitis which also cuts dairy and glutene out of mommys diet, so I did not have a lot of possible triggers in my diet ( plus I could almost not eat anything at all in the beginning, so I was more or less living of broth and tea for a few weeks because of my swallowing problems and my lack of appetite).But caffeine , yes, I must not drink too much. But I really like it and am not willing to cut out of my diet ( yes I am stubborn. But as much as I saw BFS as a chance to change many things, I am not willing to give it that much room in my life, that I withstain from things I really like just to avoid an 1 hour increase of a bit finger shakyness)
 
I used to drink caffeine in copious amounts and to no ill effects besides having good energy. ASSOCIATIONS--the first week of April my child was sick. I also had an extra bottle of antibiotics, so I decided to take the antibiotics as a precaution. And yes I know you're not supposed to do that but when one person is sick in a household, it goes through everybody. So my child got better. I never became sick. The next week I had sleeping issues, and for one week I took tylenol PM/simply sleep type products. BAM...one week later Muscle twitches everywhere. So in looking back though my possible triggers we have some type of virus/intity causing sickness in my house, caffenine, antibiotic, sleep aid pills. Now three out of four of those possible triggers were consumed. I must now throw anxiety into this as somedays I want to just scream...I want my pre-muscle twitching body back! Fast forward to yesturday...in the morning I drank two cups of 1/2 caffeine coffee and had a horrible day twitching. I'm not even sure if the small amount of caffeine I consumed even had anything to do with it but its the only thing I can associate with the bad day of muscle twitches. I spent a lot of my day yesturday reading through old threads on this site trying to ease the anxiety...this is my life somewhat now----fantastic
 
You aren't crazy TwitchBFS. Check out this video (below) with two different docs talking about the gut's connection to neurological disorders. They don't mention BFS or twitching, but I know from my case that BFS is how it manifested for me. I do not believe that this is the silver bullet that explains everyone's case, but I do believe it is the explanation for a good number of people here. It is human nature that we tend to project things going on in our life and see evidence of it everywhere else. When I first learned of Leaky Gut Syndrome and had success with a diet change I was convinced everyone with BFS had it. I saw the similarities between myself and others and assumed the underlying conditions causing those similarities were the same too. The same could probably be said for people who did not experience any change in their symptoms from modifying their diet. They may project their lack of success and think its a waste of time for anyone else to try. We are all different, and who knows what some of the other causes for BFS may be. A new case now suggests that electrocution may cause similar symptoms. I think its a good idea for everyone to give diet a serious look and an honest try to rule it out, but I'm under no illusions that it will help everybody as it helped me and seems to be helping you. Anyway, here's the video.
 
Okay.Good to know.It stands to reason that if certain foods, or food ingredients can increase symptoms, then the removal of those foods will reduce symptom triggering events, and systemic stress levels. This is what I am seeing in my own BFS. SAM - Yep. It is well-established that foods affect the brain, the gut, CNS, immune system, systemic stress levels, and hormone and steroid levels. I think, especially for new BFS sufferers, sensitivities are high, and the removal of food triggers can drastically reduce severity and duration of symptoms, and possibly speed up recovery time significantly.-Burger-
 
Just ignore johnny. At this point he has become a Troll. He goes into every thread I post, and intentionally negates whatever I write. Its obvious to several others at this point, as per my discussions with them. His desire to shoot down anything I suggest actually harms people, who may benefit from these suggestions. Just put him on ignore like I have. It's the only way to deal with a Troll.Johnny: We already know that you claim to "intimately know hundreds of twitchers" (LOL) who have seen no benefit from diet changes. Stop repeating yourself. Nobody cares. We are seeing benefit. Unless you are calling everyone in this thread a liar. We are encouraging others to try dietary changes *the right way*. And the way its done, matters. Anyone of your "hundreds" of friends can claim dietary changes, but that doesn't mean a thing. Done right, its helping us immensely. Please respect that. Also, it doesn't matter which of your symptoms changed with your diet. What matters is that they changed. That proves causation. Not sure if you grasp that. You now admit that food intake affects your symptoms. It doesn't matter which symptom. So im glad you accidentally agreed, finally. As I stated in my other thread: "Its the nerve pains, muscle pains, and all the surrounding symptoms are the ones that improved most drastically when I began avoiding inflammatory foods" (paraphrase).Now let it go... move on. Stop trolling.-Burger-
 
Burger,I'm not sure how many times you've turned things personal, but feel free to stop anytime. Anyone can reread every past topic of yours and see I'm absent from most of them....I have a full time job which I'd need to quit for that effort. I'm sorry you have personal problems with me and get upset when others don't fall in line with your agenda. For the record, I'm glad you are a part of this community and you've provided me with a fair amount of entertainment value. Thanks.
 
Well noone is telling someone to drink caffeine. It is a personal choice which I have in common with Johnny, to drink it although it can give me tremors if I overdo it. Just like other people drink alcohol once in a while, even though it gives them a headache if they overdo it. There are at least as many positive studies about coffee as there are negative ones, and coffee seems to be beneficial for many kinds of things. If someone feels nervous, he or she should not drink coffe because it can make it worse. But I am not at all anxious and same counts for Johnny and Sue. I can drink 2 cups of coffe at 11pm and fall asleep like a baby at 11:30.
 
My food triggers actually started long before BFS. In 2003, I developed ocular migraine and it became very severe after a 3 year remission in 2007. I was getting upwards of 10+ migraines in a week and noticed that fluorescent lighting, perfumes, parmesan cheese, seaweed, MSG, some cheeses, and wines would almost immediately trigger a migraine episode. I have a feeling that even back then my adrenal glands & HPA axis were going haywire and manifesting symptoms in the form of migraines.Plus it is a known fact that foods CAN and DO trigger migraines, seizures, and other neurological maladies...just look at the literature. Therefore it should come as no surprise to anyone that certain forms and manifestations of BFS CAN and ARE triggered or worsened by foods. I can tell you for a fact that if I were to go out right now and eat a meal at Applebees, I would probably not sleep for 2-3 days in a row, would twitch horribly bad for at least a week, maybe more, and probably develop a slew of new hotspots. My reactions to foods, etc. are THAT bad. I think everyone's BFS is slightly different in the way it develops and manifests itself but mine is unquestionably linked to foods etc. I've accepted that and modified my lifestyle in much the same way Burger has with some positive results. I wish I could eat whatever I wanted to, but honestly, it could be a lot worse. I love the "food challenge" idea. I think many people will notice a difference in their symptoms as they let their bodies calm down after letting go of certain products that contain neurological stimulants, up to and possibly including caffeine. It's a great idea!
 
Here is a pdf copy of the blood test I had done that checked my antibody levels against approximately 100 of the most common foods people eat. There is a sensitivity scale in the bottom left corner of the page. Notice the gluten and wheat sensitivity numbers, almost off the chart. Today I eat these foods with no problem.
 
Jet a troll??? your having a laugh mate, he has helped more 'twitchers' than anyone else on this board, with the exception of Chrissi and LeAnne.Stay tuned for the next episode of the 'bfs pi55ing contest' to see if Burger can pi55 higher than Jet.
 
There is no way I will ever give up... it from my cold, dead, tremoring fingers. :)Agreed. Tried the no caffeine thing for months and months and months. It does not make that much difference for me. Maybe a bit more body vibrating tightness; and if you drink enough of it, your brain goes on hyperactive, have to do everything, overdrive. But it's' way to good. Alcohol - makes my body burn.Rice and rice products - makes me twitchAlmonds - make my throat and ears itch, and plums, and carrots, and apples, and babies on planes. Ate a Papa John's pizza with BBQ sauce last week, and it actually made me feel better. I have not idea why. I have been pretty much meat, and veggies for a while now and the pizza was an experiment. Cupcakes - not too bad, but if you throw in Rice Dream... way more bad. Half a jar of peanut butter, not good. Activia Greek yogurt is the twitchalator.For some reason green tea makes me worse. Perfumes make me sick.
 
In my bad BFS times I could not stand the smell of perfume, of body lotions , of most flowers , honestly also the smell of people including my husband and kids which was really bad (they do not smell bad, but I could smell the "human" scent on people 10 minutes after they had showered). It made me so sick. One time I almost threw up in the waiting line at the grocery store because the baby in front of me had a full PEE diaper. I also had a phase of olfactory hallucinations where I was smelling all kinds of weird stuff. Often Gas and smoke, but sometimes also nice scents like flowers or similar things. Neon lights made my twitching and buzzing and tremors go berserk, but had no influence on the pain.Sorry, I know this thread is about food, but I just wanted to throw that in because I saw the perfume-sickness mentioned.
 
jessica1 -Yeah, I am not sure what's in the green tea that makes me feel like crap. I have not tried in a while but before It would make my body burn. I really don't get that much anxiety. I did try L-Theanine for a while just to see if it would help me sleep better. It did noting. I just chalk it all up to the body being a mystery and don't eat was does not make me feel good.
 
Don't take offence (there is a lot of it about!) but...I have some serious reservations about these relationships between food and symptoms (in some cases, usual caveats apply etc!). The biggest problem is that BFS is so variable and we are naturally pattern-seeking animals, it is very easy to see relationships that aren't really there, it's just noise. Our minds evolved to see the stripes of a tiger in the grass, there isn't always a tiger even when we think there is, only grass.Add to that the power of suggestion (people with 'allergies' to electromagnetic radiation get terribly ill when placed near mobile phone masts even when they are turned completely off) and it is easy to decide a food is a trigger and then for that to become self-fulfilling, especially in people who are anxious (if anyone knows any of those?!).Do I buy the idea that diet affects symptoms? Yes. Do I think it is possible to easily make progress in understanding that relationship based on anecdotal evidence? Rarely.(If I haven't stressed it enough!) this isn't to dismiss these ideas, it is just to add a note of caution.GlowGreen
 
No offense taken, it's a good point. Yes, there are many factors at play and the rotational diet is imperfect when you stack it against all the other potential variables. It is however a great first step in learning more about the relationship your symptoms have to factors that are under your control. Rotating your diet and keeping a food journal allows you to narrow down potential foods that are triggering symptoms. In jessica1's example he ate raw green onions twice and noticed an uptick in twitches both times. All this proves is a potential correlation. The great thing about keeping a food journal and rotating your diet is that you can notice potential correlations a lot easier. You have several options beyond this though. You can test the foods out again and again and see if the correlation continues to the point where it is painfully obvious or you could just avoid it altogether and see how much better you feel over a longer period of time. Also you could pay for blood work to confirm the reaction. The only thing that is certain is that if you don't do any diet work or probing for issues, you won't find any even if they are there to be found. I would urge all people who are skeptical on this to really do some online research into leaky gut syndrome. I'm not saying it is everyone's reason for having BFS, but I believe quite a few members probably do have it as a contributor. The only way to find out is to have people look into it.
 
First of all, thank you SAM for all of the advice and thought you put into your posts. Secondly, I appreciate the way GlowGreen respectfully disagrees here...he is right. Not everyone's BFS is flared up by foods or other environmental factors, but some of us do have these sensitivities.I was on a very strict gluten-free, soy-free, dairy-free, etc. diet for about 8 months when my BFS symptoms were at their worst and slowly over time, minus flare-ups, the symptoms became more bearable. Recently I was able to add quite a few things back into my diet without incident including fish, chicken, many fruits & veggies, and mozzerella cheese.However, in the past two days I got brave and tried eating 2 slices of pizza and some crackers and wow, I am paying for it big time. Major muscle spasms going non-stop everywhere. Thumpers in multiple locations at once and twitching like I haven't experienced in months. It's horrible and most likely, it's the effects of gluten ingestion over a two day period. How long with this horrible flare up last? I can only hope it subsides soon because these symptoms are driving me crazy again. Had my first completely sleepless night due to twitching tonight, which was the first time this has happened in well over a month. I even tried my usual remedies, including hot showers, long walks, stretching, meditating, and nothing worked. The gluten definitely caused a reaction and time will be the only healer on this one.Anyone else out there with gluten sensitivity know how long it usually takes for the awful symptoms to subside after exposure? I know SAM had issues with gluten...perhaps he could comment here on how long it took before the crazy spasms reduced down to a more bearable level. Thanks!
 
Yeah, I had a few slips in my diet from time to time. Some of them were conscious cheats and others were completely accidental. The accidental ones I would trace back to previously unkonwn ingredients when my symptoms started flaring up. My flare ups would last maybe 2 days tops. Usually I'd feel better by the next day, but they'd slowly go away gradually over time beyond that.
 
Well you wrote that for you, your symtoms are definately linked to your diet after you calmed down your anxiety, so of course in this case you should be very careful.I do not have experiences from my own body, but I have had my neurodermitis baby on a completely- back- to- full- nursing diet and then slowly added foods back. And the major rule by my pediatrist was: never add a food back in a " combination" with other things, like a pizza.First of all, regarding the immense severity of your symptoms, I think you would benefit from an allergy test to the most common allergens. As you have seen previously that foods have such a great influence on your body, you have to keep it really simple and basic. I know how frustrating this is when you must not eat all the yummy things ( because mommy must not eat the things baby must not eat because some allergens can go into the milk....that were very hard months for me with a lot of cravings...). If your symptoms are so calmed down that you think you can try to add something back, make it simple. Like when I was adding back eggs, I gave him a small amount of scrambled eggs , not eggs in a cake, and then waited for 2 days. When I added back milk, I gave him a little plain yoghurt ( no fruits, no sugar, plain greek yoghurt) and not milk in form of Tortellini alla Panna or something. My doctor told me that the likelyhood of re- established things to be accepted is far better if it does not come in a huge package with other things. So for the glutene, I made tortillas back then and gave it to him to try those, they are not having a lot of ingredients. And another rule is, to keep it as unprocessed as possible. Sometimes the processes used on foods do influence them in a way that effects their gut permeability and tendency to cause intolerances. This is e.g. well known for the homogenisation process of cow milk.
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top