Casein?

[Golfjunkie]

To my Fibro bros,

Its obvious I'm new and I know I'm a nobody and probably need to not even do this...but I cant hold it in. I have a real situation I'm hoping someone has heard of, or it might even help someone else. My Fibro was spurred on (or made worse) when a mosquito went Rambo on me and gave me West Nile last fall. I know that kind of makes me the freak of the bunch but if you have the time please read on.

Things got really crazy for a while (as in that scary place where death seems to be calling your name) and now we are trying to figure me out again .... literally. My body chemistry changed, a lot about me changed. I lost a lot of my hearing, I now stutter when I get pissed, and that makes me worse, so I just try and stay quiet a lot : ). I became very allergic to lots of things. Of course I went fibro on steroids. I get really weak and stuff, but something happened that is changing how I look at this whole fibro thing. The other day I got very sick, my joints became like concrete, I was muscle spazzing, my gut hurt, my head hurt, my vision sucked, my ears sounded like twin 777s taking off. Lots of things were going very wrong very fast on levels way past fibro. I was in West Nile hell again, but I wasn't! Thas where this gets weird, and links my stupid West Nile up real hard with fibro.

I got intolerance tested a while back because of the West Nile and because things were not adding up in my diet. Of course immediately I changed all I could but no good changes occurred in how I felt. Suddenly I got worse, much worse. I started freaking out, with massive panic attacks. I had (and still have) invisible hives (itching burning skin with no rash) blurred vision, my underarms hurt, my arms and feet were tingling, I nearly passed out a couple times, my joints felt like satan was ripping the muscles loose from the bones and I had a nasty stomach ache that just kept getting worse instead of better. I was thinking ulcer! No not ulcer. I was actually starting to think stroke, blood clot, or heart issue.... nope none of them (yet). 

I tested intolerant to lots of stuff, milk is one of them, no big deal, that was nothing new, I already knew that! I have cheated that all my life, since I was a kid. I have always taken lactaid and it gave me a free pass on the milk stuff.... but hold the phone... It only gave me the enzyme I was missing to digest Lactose ONLY. However there is another little smoking shotgun in the milk thing no one talks much about much. I searched the data base here at MWF and it came up empty handed with no results for the word Casein. So guys we might need to talk? 

West Nile changed my body chemistry (somehow?) I'm now a freak of nature that has become a friend with pain. The side effects from meds aren't worth it to me, nothing has really even worked, so I truly live in some really bad pain. There is a lot I cant have now. No gluten, potato's, tomatoes, rice, just to name a few on a long list. So I was eating cheese and meat sandwiches and cheese was the bread, because I cant have or find any bread that I can have right now. I was having 3 and 4 glasses of milk a day. I was having yogurt frozen fruit smoothies. This has never been anything for me, plus I was showing some malnourishment on my tests. I removed all that other stuff out of my diet!!!!! Suddenly I was eating more dairy then anything else kind of by accident, but also because I thought it was good, and good for me at this time, for this situation. I did what I was told... even though as I explain it, it makes me sound kinda stupid. I just have a small window of stuff I can have right now and that was what I love....so....Yaah I was going to town with it.

Casein!!! Casein is the "protein" in dairy products like Gluten is the protein in wheat. Lactose is a whole different thing. Casein is sometimes known as the "poison protein." Casein is a protein so strong it is used to make some of the best glues in the world! (fun fact). However it can do things that are unthinkable to the human body, to a body that cant digest it. It has links to A.D.D, psychosis, brain swelling, gut swelling (apple belly), joint pain, spinal pain, kidney pain, altered thinking, and on and on and on and on!  I have had fibro for a really long time, actually since I was a kid, but it got massively worse in a short time very recently. Yes, the mosquito, and yes milk thing.... WE THINK!?

By accident we narrowed things down but allowed one intolerant item in because I had away around it (we thought). It had never shown itself to be a horrible issue... OR HAD IT ALL ALONG????? That is what we are about to find out!

The nutritionist just put me on a cave man diet (sort of) for 2 weeks. I just started. It's basically all the meat I want (no pork, no shellfish) all the steamed or raw veggies I want, all the raw fruit I want BUT NOTHING processed of any kind, no candy, and ZERO dairy EVEN if it says NON DAIRY. NO BREAD of any kind and of course thas NO gluten... and nothing I'm now allergic to, that's a no brainer.

I'm telling you guys this for a huge reason. "Casein poisoning" has the exact symptoms as fibro and then some!

I have never been without dairy my whole life!!! I'm from a family of ranchers, we know cows! I know I'm lactose intolerant (always have been), but I will drop it like a hot rock and never touch it again if this happens to show that I'm feeling better 2 weeks from today.

CASEIN is also a ghost protein... It takes up to 72 hours for it to react in the body making it very hard to track. Can you remember what you had 72 hours ago? I cant remember what I had last night sometimes! Okay, case in point.... in a time span of 72 hours I have looped this Casein scenario over and over and have been doing so my whole freaking life!!! It is in bread, donuts, milk, cheese, whip crème, dressings. The list is very long so it's not just a dairy issue AT ALL! Pizza crust has it, cake, bread and much more. Some Sports drinks have it. IF THIS BECOMES FACT!!! That would mean I DONT HAVE "FIBRO", never did... I had Casein poisoning all along! COULD YOU???? THAT IS WHY I'M WRITING THIS

FIBRO might in fact be a form of food based poisoning.... I research tons of stuff on my own also, it's what I like to do. Aspertaine is another shotgun shell in that same smoking gun.... I don't and have never used it, but those same grouped up type symptoms hang around that product also.

This may be news straight out of crazy town and hoakus poakus but it makes huge sense to me (I have never heard of this). Those of us who drink and eat lots of dairy (and hidden dairy) might have something we need to look into. I may sound like a babbling fool, but I'm giddy as a frikkn kid at Christmas. My accidental dairy stunt made people look for things they were never looking for because we accidently made it up front and center!! This is stuff I never heard of.... This is the very thing they are studying in Autistic kids right now! It seems to be working but there is issues with big Pharma on all of this and it makes me angry to know this. I don't know if anyone has noticed, but no one looks for a CURE these days!!!!!!!! They treat symptoms, because thas where the big money is!!!! NO ONE wants a frikkn cure! There is no money in that! Thas BS!! (Sorry but thas my blunt thoughts on it).

I don't want to sound stupid but IF this was to be something... Many people could have their lives back at ZERO COST!!! No magic pill, no freaky diet (well sort of no freaky diet) it's just eliminate the problem (that would mean ALL not some) and the problem is GONE!

I'm praying to GOD this works (sorry if I offended any one but I'm a believer)! I have a lot of life left to live. I force myself with tears in my eyes to get through my days at work, only to go home and nearly pass out sometimes. I need this to work and if it does, it tells me for non milk drinkers there may be another smoking shot gun in your diet somewhere.... WE ARE WHAT WE EAT... when it is poison we become sick and start slowly or quickly dying!

I know I sound like a fool but it's worth a shot to me, I just wanted to pass it on. IT COST ZERO! What do we have to loose? If your a dairy person it's worth a shot. I do love dairy products.... I'm in no way trying to say dairy is bad or bashing the industry in anyway.... They are not bad if your system can handle it..... can it... is the question?.... I will report back in 2 weeks on this.

They do think I have Celiac disease or the beginning of it because it seems I'm not absorbing the nutrients from what I eat. Guess what 2 things cause Celiac Disease? Guess what symptoms mimic Fibro? Gluten and Casein!!! People say fibro maybe in peoples heads (and in a way it is because we have a brain in there that's trying to fix something IT CANT).... In the case of Casein, it affects the gut, the whole body, and THE BRAIN badly! Maybe fibro starts our gut causing things to happen that our brain cant compensate for, which causes PAIN.

BTW, If Celiac its not severe it can be reversed over time! If it is severe it can still be controlled and improved. (you prolly already knew that)

As horrible of an event West Nile is, and was.... There is a chance it manifested some answers I have been needing nearly all my life. I just have this gut feeling we are on something cool here. I have to hope so. I have nothing else to look forward to but getting worse and more tests. There have been times I hurt so bad I wish it had just took me. I keep thinking there has to be a reason it didn't.

I may get shot down over this and it may not work, it may be just some BS joke (if so I admit  I'm a fool).... but what the hell is life (a life of hurt) if there is no hope? I don't give a rats butt for the next new drug.... I want it GONE!

I have been so sick, and in enough pain I have had those very, very, wrong thoughts. I need something to change and I'm digging all the way to the thrown of hell just to bust satan in the mouth, if it takes that to find it. I refuse to give up until it takes me. I refuse to let this beat me and if I find something I give it freely to those like me. GOD made me stubborn maybe for the very reason to live and GIVE something to others worth more than gold. I am giving it early praying it works. I have no reason to continue this and continue to get worse, and then wind up real life starving to death because I cant get any nutrients from any food, on a tiny list of what I can have. I don't have a real bright future, if we don't figure this out! So if you think I'm just on here to shoot the s--t, thas not so. I'm in real trouble if this don't turn around. Pain is one thing but just a really slow death from malnourishment, thas just wrong. 

I don't care if it never all goes away.... I'm not even expecting that, but even the thought of half of what's going on leaving makes life seem so much more doable. 

Have a good night guys... Sorry this is so long but I have no one I ramble too and I cant sleep. I keep my mouth shut trying to keep my job, plus I just don't care to talk about it in real life. I'm not out for pity. Im looking for a cure or a way out that doesn't involve 6 feet of dirt on top of me just yet.  I don't get a lot of support at home, mostly cause I don't say much, cause when I do people just have nothing to say. What can they say? I understand people not understanding me, it's when they don't see I'm trying with everything I have to fix it, that it gets to me.

I'm now an issue at every meal and it makes me sick. I feel like a huge burden and I don't want people to not eat what they want because of me. I cant go eat at a restaurant. I'm becoming an outcast and it makes me want to become a recluse.... but thas just too far into weird country for me.

It would give me no greater pleasure to be able to free people FOR FREE, if this works. It sounds a little nutz but lots of dots are connecting.... thas got to mean something. I'm stupid because I have gotten my hopes up..... oh well thas how I roll I guess. I'm still a glass half full guy, and I smile all I can and cry when no ones around.

I guess in one way it got me taking to GOD a lot more..... I know HE is there, I just know why HE would care, but I'm trying to find out.

thanks for letting me vent!!

[countryboy]

Venting is our friend.  We all do it and yet we feel kind of dumb when we do it.  But, we are here for each other in the bad times as well as the good.  Just feel free to open up and let it all roll out.  We will listen and not downgrade any one for saying how they feel.  It is just our normal way of living.

Good luck with all the testing.

[looneylane]

Vent away!

[foxgrove]

Isn't it great to have a place to vent and just let it all out.  I hope that your testing proves to be helpful.  I know a few folk on here that have been helped by diet changes but I have yet to meet someone who's symptoms went away through that method.  Interesting hypothesis... I look forward to hearing more.

[looneylane]

Both my son and I had west nile but I already had fibro when I got it. It seems this disease can be triggered by many things.

[augoldminer]

If you have Celiac disease that in its self as a autoimmune disorder can cause fibro.

I my self am intolerant to sugar alcohols. Sorbitol, Erythritol, Xylitol. ECT

This started right in the middle of me going through a stop smoking program and since i am a diabetic i was using sugar free candy to take my mind off lighting up.

These cause me a lot of stomach cramps, abdominal pain, diarrhea lasting for about two days from just one candy.

It took me a couple weeks misery to track down the cause.

[looneylane]

Artificial sweeteners have also been linked to migraines in many people

[Golfjunkie]

Thanks for your support Sirs,

It wouldn't be a good idea for me to vent much. I have way tooooooo much that I would let out.

I do have a question though.... I have always been super quiet and easy going - by far the quietest in my family. I'm still "the quiet one" but inside I guess I'm just angry? Never really noticed it before this, maybe it's because of all this. It has been sneaking out and I don't like it.... Thas not me.

Brian fog is one thing but does anyone get angry (short fused)?   I don't like this about me at all! This has just kinda snuck up on me an reared it's ugly head and I'm trying very hard to shove it back where it came from.... like I know how to do so.... wow (ignore my ignorance)

I guess it's cause people fuss over me, and are worried about me, but I just want them to treat me like always and not treat me like I'm going to break or plan meals around my craziness. It makes me wanna go hide and hide long term, yet thas not really what I want either. Or is it? : )

I need to get new job/life far far away from here but where? I wouldn't know where to start. I'm 37 miles from where I was born. It's all I know. 

Nobody understands the new F ________ed up me......including me : ) 

Drama, mosquitos, and fibro define the word sux... because they suck the life out of you! Told you--- not a good idea for me to vent : ) 

[looneylane]

Find someone you can talk to about it a pastor or friend or even a counsellor if you can.

[mloved]

Golfjunkie - no worries, that why there's a Rants & Raves section in the forum.  It's used often.  We do understand those issues and challenges of having a new self.

Due to my Sensory Overload - I'm usually not able to reply to posts that have a lot of different subjects going on all at once.  But hey, others here can and do.  So rant away and let it out!!