Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

Rachel--24 Collaborator
It's probably because peanuts are beans (legumes), not nuts.

Yeah...thats true....forgot about that!!

I always read that peanuts are bad...the're not allowed on any of the various diets but I forget why. Theres something toxic about them. I freakin love peanuts. :(

Anyway, I noticed that some of you are talking about a rash around your lips. I get that too, and then it spreads to my whole face. It starts on my lips, and it itches really bad, then it goes to my whole face and itches like CRAZY! Sometimes I get very very very little bumps, but only around my lips and chin, but you can barley see them. And around the rest of my face, it just gets really really really red and itchy. For example, did you ever get sun burnt and when it starts to fade, it gets really itchy?

Dani....thats how my rash looks....its tiny little bumps around my mouth...not on my chin though. The bumps are so tiny only I can see them...but they give my skin a reddish appearance. It doesnt itch at all....it burns. It used to burn like crazy when I ate normal food but now its just a slight burning. Also the redness isnt too visible....there was a time when you could see it a mile away....or at least to me it seemed that way. It was so dark to me it looked like it could be mistaken for a mustache. :blink:

The burning sensations I get on the rest of my face, shoulders, arms and feet feels like a sunburn but nothings red....it itches a little too but not a crazy itch. Its more like a prickly type feeling.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
Green12 Enthusiast
Yeah...thats true....forgot about that!!

I always read that peanuts are bad...the're not allowed on any of the various diets but I forget why. Theres something toxic about them. I freakin love peanuts. :(

I remember reading that peanuts are very moldy so it might not be a specific peanut problem but the toxic mold on them, but I totally could be wrong about that.

Christine welcome to the little support group we have going here :lol:

I decided I am going to have to go au natural, I already was pretty much, but I am really going to get into it. I am going to dust off my champion juicer, besides juicing for vitamins/minerals you can freeze fruit and run it through there with a certain attachment and out comes your own ice cream/sorbet type concoction. Also you can make your own nut butters if nuts aren't a problem (you can do this in a food processor too). There is just so much crap in our food supply that I am going to take matters into my own hands.

Rachel--24 Collaborator
I have a freind that dsicovered he had a MSG problem a couple years ago. He siad now that he is healed, he can actauly tolerate it in tiny amounts ocassionaly with out a reaction. So theres a bit of hope for you. :)

Wow....that would be so awesome. :D

It seems like alot of the people I've seen post on the message board cant tolerate any but I'd rather be optimistic about it. I think some people can handle small amounts...like a couple spoonfuls of ice cream once a week. I dunno if I could stop at just 2 spoonfuls though. Last time I ate the whole quart. My reactions dont seem to come till one or 2 days later so I ended up paying for it.

There is just so much crap in our food supply that I am going to take matters into my own hands.

:lol:

You go girl!!

I have a juicer too....I got it last summer when I was on the Candida diet but havent used it since. I guess I'll be dusting mine off to. Thanks for reminding me. :)

Hi calicat, Rachel,,, everyone.

I also have symptoms of facial swelling and jaw pain, rash and sensitivity to foods and chemicals, ie perfumes, most foods, im sure MSG, pills, fillers, dyes, makeup etc... and anything artifical.

Its been hard trying to figure this whole thing out, because my doctors dont seem to have the foggiest idea, and think its not a big deal, its nice to know that there is support and that im not alone.

The caveman diet sounds like a good idea.

Calicat, I get the throat swelling and feeling of fullness in there too, espically after dairy, I also get a metallic taste in my mouth and stomach aches with certain foods.

I have more symptoms but I wont go through them all.

Its good to know that were all here to help eachother.

So far today I ate a salad with mandrin oranges and chicken, no dressing and I seem to be doing ok...

Gotta figure out what to eat later tho,,, I kinda feel scared to eat...because of the pain, but I know I have to.

Christina

Hey Christina!

Welcome to our little NO MSG group. :D

Wow....a few days ago I thought I was the only one on here with all these crazy symptoms. Now we have a little support group going...cool. A support group within a support group. :D

VydorScope Proficient
Wow....that would be so awesome. :D

It seems like alot of the people I've seen post on the message board cant tolerate any but I'd rather be optimistic about it. I think some people can handle small amounts...like a couple spoonfuls of ice cream once a week. I dunno if I could stop at just 2 spoonfuls though. Last time I ate the whole quart. My reactions dont seem to come till one or 2 days later so I ended up paying for it.

:lol:

Yea, what he told me was in the begining any even slightest hint and he would be reacting badly. I think is how he put it. He gave up eating out at all. But that was a couple-few years ago. He still is extremely careful, but the occasional little slip goes by with out reaction.

Is there MSG in your ice cream? I only buy all natural ice cream, or make my self. Ingredienets like "Milk, Cream, Sugar" make sense to me. "LSDKFJLSDJF-9" does not, so I try to aviod it. :)

Rachel--24 Collaborator
About the MSG-Pesticide concern. The msgmyth website says that Auxigro can probably cause reactions in people who are MSG-sensitive. Unfortunately I don't know how you tell if the particular fruits and veggies you're buying have been treated with it or not, but according to the company's site, it is used on the following crops: almonds, apples, avocado, cherries, corn, grapefruit, grapes, lima beans, mango, melons, onions, peaches and plums, pineapples, potatoes, snap beans and tomatoes. :blink:

I've pretty much reacted to all those things off and on...sometimes I can tolerate them. Its only when I'm already really messed up that I start reacting to these foods so I dont know if it has anything to do with the Auxigro....or just cuz I'm reacting to everything regardless.

However a couple weeks ago I was feeling good and was eating poatoes from Whole Foods and had no problems. I ran out and wanted more so I bought some organic potatoes in a bag from my work (Safeway). I reacted immediately. I went back to the WF potatoes no problems....then out of curiousity I tried the Safeway ones again and the same thing happened and my head swelled up again. This was before I knew about MSG so I was totally stumped. I wonder if its really a possibility with the potatoes. :huh:

I know they were specifically left out of the "MSG free trial diet" because of the Auxigro...it just seems hard for me to believe tho. It seems crazy and sometimes I feel like I'm in the Twilight Zone or something. :unsure:

WTF are they thinking about sparaying that stuff on the crops??? Thats BS.

AndreaB Contributor
Corn free is really hard, I have been doing it for a month now, and haven't had a trip to the ER yet in anaphalixis. It makes my stomach feel so much better in every way!

I don't eat any processed foods, and there is a way to make corn free baking powder, not sure right now, but I will post the recipe when I get home from school.

It's hard at first, but it should make you feel better soon!

Ener-g foods also puts out a baking powder and baking soda. Doesn't rise as well but I use the powder and just substitute it for both baking powder & soda. You need to use twice as much as regular stuff.

Rachel--24 Collaborator
Yea, what he told me was in the begining any even slightest hint and he would be reacting badly. I think is how he put it. He gave up eating out at all. But that was a couple-few years ago. He still is extremely careful, but the occasional little slip goes by with out reaction.

Is there MSG in your ice cream? I only buy all natural ice cream, or make my self. Ingredienets like "Milk, Cream, Sugar" make sense to me. "LSDKFJLSDJF-9" does not, so I try to aviod it. :)

Yeah pretty much all ice-cream has MSG in it. Its never labeled as MSG though. Where do you find ice cream with only those ingedients. I bought Breyers "all natural" and it has milk, cream, sugar, natural flavors. Natural flavors = MSG.....theres really nothing natural about it. Lots of stuff says "all natural" on it but its just to fool us....its not really natural. I always believed it meant what it said but they can put whatever they want on their package. Its how they sell stuff. Someone can also say that cocaine is natural cuz it came fom a coca leaf but would you wanna put that into your body??

I think I was very naive all my life. :(

Ener-g foods also puts out a baking powder and baking soda. Doesn't rise as well but I use the powder and just substitute it for both baking powder & soda. You need to use twice as much as regular stuff.

I think I've seen this. Is it that stuff that comes in a round container?

I wonder if its safe? Heres a link to the product I'm thinking about.

Open Original Shared Link


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



VydorScope Proficient
Yeah pretty much all ice-cream has MSG in it. Its never labeled as MSG though. Where do you find ice cream with only those ingedients. I bought Breyers "all natural" and it has milk, cream, sugar, natural flavors. Natural flavors = MSG.....theres really nothing natural about it. Lots of stuff says "all natural" on it but its just to fool us....its not really natural. I always believed it meant what it said but they can put whatever they want on their package. Its how they sell stuff. Someone can also say that cocaine is natural cuz it came fom a coca leaf but would you wanna put that into your body??

Hmm I have to double check, casue I do not recall seeing "natural falvors" on the specifc varties I some times get. In fact as I recall it was "Milk, Cream, Sugar, Coffee". :D I know some of thier "all natural" flavors have extra junk added though....

But nothing is as good as making it your self! :D I use ALL heavey whipping ccream, no "milk" at all heheh :D TASTY!

Rachel--24 Collaborator
But nothing is as good as making it your self! :D I use ALL heavey whipping ccream, no "milk" at all heheh :D TASTY!

Thats what I'm gonna do! How does it taste? They say its safest to make your own and I have an ice cream maker from years ago that I never use. I'm gonna try it....but not until I've been on my caveman diet for awhile. :D

VydorScope Proficient
Thats what I'm gonna do! How does it taste? They say its safest to make your own and I have an ice cream maker from years ago that I never use. I'm gonna try it....but not until I've been on my caveman diet for awhile. :D

The sercet of good ice cream is FAT. Most of the flavor/texture of the icecream is in it. Ive tried mixtures of milk, 1/2n1/2, and whipping cream.. but in the end the best success I have is alwas been with leaving the "milk" out. 1/2n1/2 works just as well realy, there is not a heck of a lot of dif between it and heavey whipping cream, at least form this recipes point of view.

Calicat Newbie

So Breyer's All Natural ice cream isn't safe, huh? I was so hoping that Breyer's would still be okay. It's hard to accept that all of these companies are putting poison in our foods; i guess I'm just an idealist too on top of being naive. sigh. <_< Feeling better will definitely be worth doing without it though...

As far as caveman goes, are you eating only organic and/or excluding the fruits and veggies that the msg site listed (potatoes, grapes, berries, etc.)? Also, are you completely avoiding dairy or still allowing a small amount of msg-free milk or yogurt?

I'm getting really ready to jump in to this new-old diet, so thanks for any hints! Hope you guys all have a peaceful, non-reactive evening. :)

Green12 Enthusiast
So Breyer's All Natural ice cream isn't safe, huh? I was so hoping that Breyer's would still be okay. It's hard to accept that all of these companies are putting poison in our foods; i guess I'm just an idealist too on top of being naive. sigh. <_< Feeling better will definitely be worth doing without it though...

As far as caveman goes, are you eating only organic and/or excluding the fruits and veggies that the msg site listed (potatoes, grapes, berries, etc.)? Also, are you completely avoiding dairy or still allowing a small amount of msg-free milk or yogurt?

I'm getting really ready to jump in to this new-old diet, so thanks for any hints! Hope you guys all have a peaceful, non-reactive evening. :)

Right now I am just going to do the meat, a few eggs, fruits, and veggies that are allowed. I don't do well with dairy so the cheese/milk is out for me and I have overloaded on rice up to this point and I may have a sensitivity so I decided to leave that out too.

I do wonder about fish though, is there a MSG problem there?? And what about fats/oils??

I think I am going to invest in a little ice crem maker soon so I can make my own ice creams and sorbets without all the added crap, another taking it into my own hands move :lol:

VydorScope Proficient

If your gonna get icecream maker I highly recomend this one

Open Original Shared Link

:D

Rachel--24 Collaborator
As far as caveman goes, are you eating only organic and/or excluding the fruits and veggies that the msg site listed (potatoes, grapes, berries, etc.)? Also, are you completely avoiding dairy or still allowing a small amount of msg-free milk or yogurt?

I'm pretty much doing what the site recommended as far as elimininating the potatoes, grapes and berries. I'm not eating tomatos, broccolli and mushrooms either. I only get organic stuff and I peel everything....I've been doing this for awhile though so its nothing new. I dont do well with the skins on stuff.

I'm not having any dairy for awhile...I wanna start feeling really good first before I try anything like that.

The only thing that is not clean in my diet right now is Tinkyada pasta. As far as I know I dont have a problem with it but its processed and stuff right??? How bad do you think it is? The only reason I havent wanted to eliminate it is because I dont wanna lose weight. I'm happy where I'm at right now.....it took me forever to gain this weight back and I've only had it for about a month now. I'm sure I would do better w/out the pasta though...cavemen didnt eat pasta. :(

Julie...I was wondering about fish too...I usually eat it but tonight I skipped it when I went grocery shopping. I'm not too sure about it....let me know if you find out.

Rachel--24 Collaborator

Ok....so I had a Dr. appt. tonight. My Dr. wasnt available so I had to see someone else (my Dr's wife). They work together. Anyways I told her about what I discovered as far as the MSG thing. I was telling her everything and about my symptoms and what my experience has been. She told me that she had one other patient that had discovered MSG was her problem too. She said when I was explaining my symptoms I sounded just like the other girl....she had described the same things. She was about the same age as me too.

My doctors are very anti-gluten and their whole family is intolerant. She said it all stems from gluten creating a leaky gut. I told her yeah....but I've been off gluten over a year now 100% so why would it still be leaky? I asked her if the MSG could be causing the leaky gut....she said definately but gluten would have started it...back when I was eating it.

She said they concentrated on healing that other girls leaky gut and now she can tolerate some MSG...in normal amounts. She said MSG is very insidious and its a neurotoxin so when it goes "flying" through a leaky gut its gonna cause some serious problems. Heck...it causes problems w/out leaky gut so I guess if it was going through into the bloodstream it would be really bad.

I'm not sure what to think though. I know alot about leaky gut and I know if you stay off the stuff that is causing innflamation you can heal....but it takes time. I told her I'm not taking any supplements...I know supplements can speed up the process but not in my case. I told her about hoe every single one of my supplements contained MSG....including the ones I had gotten from them. She seemed alarmed. She wants me to email the company that makes the supplements and question them about it and have them reply to her.

The thing is...MSG isnt added into the supplements as far as I know...its the gelatin capsules. Some of my supplements *did* have hidden MSG ingredients but not the ones I got from them. I could empty the contents if I wanted to but I dont....I'm scared of supplements and I dont think I need them to recover. They havent helped me one bit so far. There was something in one of the supplements called L-cysteine...I've seen this in lots of products. I've also seen it on just about every MSG site. They say avoid the 3 main excitotoxins which are MSG, Aspartate and L-Cysteine. This is what I told the doctor and she wasnt aware of L-cysteine being a "bad guy". She said its an important amino acid or something like that. I just looked it up in case I was wrong but it was right there along with MSG and aspartate. I'm gonna write the company and see what they say. She said the doctor who creates these supllements suffered from major chemical sensitivities himself so shes confused as to why something bad would be in any of the supplements. Anyone know anything or heard anything about L-cysteine?

What do you guys think about gluten being the underlying cause? I told her I went on the MSG message board and their symptoms were exactly like mine....she told me to go back and let them know about gluten intolerance. Well...I've read alot of the posts on that board and alot of them are gluten free too so I'm pretty sure they're aware. I notice that on the candida board they avoid gluten, on the corn intolerance board they avoid gluten, on the MSG board...they avoid gluten. Do you think its the main cause for all these problems?

She also said MSG problems are not genetic whereas gluten intolerance is. I already know I have 2 sensitivity genes (no celiac genes though). She said I already tested positive for gluten intolerance (Enterolab last year) so it would be a big factor in all this.

It really doesnt matter either way cuz I'm 100% gluten-free and thats not changing so right now gluten is NOT my problem...so I need to fix the problems I'm having right now....which seems to be mainly MSG. Another thing about leaky gut....when I was learning all about it I kept seeing how L-glutamine heals the gut and its goof for Celiacs too. I bought some last summer and when I took it after 2 days all my symptoms came back big-time. I was stumped cuz there was nothing in it...it was a powder. L-glutamine and no other ingredients...I stopped taking it but tried 2 more times and both times the same thing happened 2 days later I got worse. When I was reading all the MSG info....they say avoid L-glutamine because it can cause reactions. Hmmmm....I'm just realizing right now as I type this that other products I've taken....including probiotics and vitamins have had l-glutamine in them. Shheeesh....I doubt I'll ever take another supplement again....I'm traumatized.

She said that its great I was able to identify MSG...its not easy to do. No kidding.

aikiducky Apprentice

Rachel it's funny what you said about the other support groups and them avoiding gluten as well. I've been on my veggies and meat/fish diet for candida for two weeks now and I feel pretty normal again! Not completely ok but I know it's something that will take a while. Anyway, I know lots of people try to treat candida unsuccesfully, and I'm wondering if it isn't that I've already been so strictly gluten free for 1 1/2 years and that's why it doesn't seem to be that bad for me.

Pauliina

Green12 Enthusiast
My doctors are very anti-gluten and their whole family is intolerant. She said it all stems from gluten creating a leaky gut. I told her yeah....but I've been off gluten over a year now 100% so why would it still be leaky? I asked her if the MSG could be causing the leaky gut....she said definately but gluten would have started it...back when I was eating it.

She said they concentrated on healing that other girls leaky gut and now she can tolerate some MSG...in normal amounts. She said MSG is very insidious and its a neurotoxin so when it goes "flying" through a leaky gut its gonna cause some serious problems. Heck...it causes problems w/out leaky gut so I guess if it was going through into the bloodstream it would be really bad.

I'm not sure what to think though. I know alot about leaky gut and I know if you stay off the stuff that is causing innflamation you can heal....but it takes time. I told her I'm not taking any supplements...I know supplements can speed up the process but not in my case. I told her about hoe every single one of my supplements contained MSG....including the ones I had gotten from them. She seemed alarmed. She wants me to email the company that makes the supplements and question them about it and have them reply to her.

The thing is...MSG isnt added into the supplements as far as I know...its the gelatin capsules. Some of my supplements *did* have hidden MSG ingredients but not the ones I got from them. I could empty the contents if I wanted to but I dont....I'm scared of supplements and I dont think I need them to recover. They havent helped me one bit so far. There was something in one of the supplements called L-cysteine...I've seen this in lots of products. I've also seen it on just about every MSG site. They say avoid the 3 main excitotoxins which are MSG, Aspartate and L-Cysteine. This is what I told the doctor and she wasnt aware of L-cysteine being a "bad guy". She said its an important amino acid or something like that. I just looked it up in case I was wrong but it was right there along with MSG and aspartate. I'm gonna write the company and see what they say. She said the doctor who creates these supllements suffered from major chemical sensitivities himself so shes confused as to why something bad would be in any of the supplements. Anyone know anything or heard anything about L-cysteine?

What do you guys think about gluten being the underlying cause? I told her I went on the MSG message board and their symptoms were exactly like mine....she told me to go back and let them know about gluten intolerance. Well...I've read alot of the posts on that board and alot of them are gluten free too so I'm pretty sure they're aware. I notice that on the candida board they avoid gluten, on the corn intolerance board they avoid gluten, on the MSG board...they avoid gluten. Do you think its the main cause for all these problems?

She also said MSG problems are not genetic whereas gluten intolerance is. I already know I have 2 sensitivity genes (no celiac genes though). She said I already tested positive for gluten intolerance (Enterolab last year) so it would be a big factor in all this.

It really doesnt matter either way cuz I'm 100% gluten-free and thats not changing so right now gluten is NOT my problem...so I need to fix the problems I'm having right now....which seems to be mainly MSG. Another thing about leaky gut....when I was learning all about it I kept seeing how L-glutamine heals the gut and its goof for Celiacs too. I bought some last summer and when I took it after 2 days all my symptoms came back big-time. I was stumped cuz there was nothing in it...it was a powder. L-glutamine and no other ingredients...I stopped taking it but tried 2 more times and both times the same thing happened 2 days later I got worse. When I was reading all the MSG info....they say avoid L-glutamine because it can cause reactions. Hmmmm....I'm just realizing right now as I type this that other products I've taken....including probiotics and vitamins have had l-glutamine in them. Shheeesh....I doubt I'll ever take another supplement again....I'm traumatized.

She said that its great I was able to identify MSG...its not easy to do. No kidding.

Rachel, I am scared too to take any of my supplements. I have been taking so many supplements for over ten years, gobs and gobs of them, and they never did anything for me. I kept taking them thinking one day they will kick in and do their magic, in some ways I think I got worse.

For example, it is common when you have illness to be told to take mass amounts of enzymes so that you can better digest your foods (so the theory goes). Well on most of the enzyme bottles it says do not take if ulceritic conditions are present in the stomach. Hello!! Leaky gut!! That's why you can't digest your food in the first place and then you are instructed to take massive amounts of something that potentially causes more of a leaky gut problem. It's so messed up.

I also know with my specific experiences and research that NSAIDS (such as pain relievers, ibuprofen, etc.) cause holes in the stomach lining only after 3 months of general use. So I don't know about just wheat/gluten being the sole underlying cause of leaky gut. I have come to believe lots of substances can cause leaky, and most likely multiple substances at the same time. I think I read somewhere on this board where someone said they read that even a dairy allergy/intolerance can damage the stomach lining.

Oh, and I just looked on all of my Ultra Clear canisters (the ones from Metagenics designed to treat leaky gut, inflamation of the gut, liver congestion, etc.) and they all have L-glutamine, or a form of glutamate and the Cysteine you referred to. Everything I have to treat the digestive tract, with the intention to heal it, has these ingredients in them. No wonder people don't get well.

Over the last 2 years I have dramatically cut down on my supplements, just to a multi-vitamin, pro-biotic, magnesium, and a b-complex. My stomach symptoms actually improved quite a bit. Then I recently bumped myself down to taking only my magnesium and I just I read on the MSG boards that even vitamins and minerals of an aspartate or citrate source is not safe. My mag is a citrate source. The last few days I haven't taken anything. I am going to drag out my juicer and get my nutrition from food, which is how it is supposed to work in the first place :D When I eat a totally whole foods diet I feel the best ever anyway and it's only when I stray and try something processed that all my symptoms come back with a vengeance, and then I think well I haven't healed yet. But now I wonder if it's not about healing but about just not being able to tolerate the crap. It might be a forever thing with me because it's been over 10 years and nothing has shifted.

I find it very very very interesting that Alzheimer drug research is based around finding Glutamate receptor blockers to protect central nervous system neurons against glutamate neurotoxicity known to cause neurological disorders. So they know there is a connection and that it is a big problem yet nothing is being done to change our food supply. This makes me very angry because I have lost 5 people in my family so far to Alzheimer's or Alzheimer's like diseases.

dlp252 Apprentice

Rachel, I've been emailing your Dr's wife, lol. She seems really nice and as soon as I get this pre-cancer thingy resolved I'm going to see her I think. She said they can help me with a pre-cancer diet to hopefully slow down the cancer thing. :)

This whole thing is really scarey! I've taken supplements for years, but eventually stop taking them because I want to test to see if THEY are the cause of me not feeling well. 9 times out of 10 I can't start taking them again because I react. That's what happened to me in the last few weeks. I stopped taking them because of my endo/colonoscopy, then started the SCD so didn't really continue...I tried taking just the calcium and flax oil that my doctors want me to take and I felt awful.

I don't think I'm as sensitive to MSG as all of you seem to be, but I do think I have a problem with it. I definitely can't seem to do processed foods well and definitely seem to have a problem with supplements.

danikali Enthusiast

This is so amazing that you are all going through almost the exact same things as me! Rachel, I know what you're talking about when you said the rash around your mouth makes you feel like you have a mustache because it's so dark. That is how I feel when it gets bad. It's like you see something is different about my face, it gets a little puffy and I feel like it creates a shadow or something but up close, there's really nothing there. It's just red.

Anyway, this is so scary that all of the crap that we have been eating for so long is such poisen. And I don't know about the gluten thing creating all of this either because how come there are so many celiacs that just take gluten out and are completely normal again? Then there are those of us who feel like crap still, even with no possible gluten. Also, how come when I eat just fresh fresh fruits and veggies, meat and fish, and I feel like 10 million dollars, serioulsy, not one thing is bothering me on my body. And then I add one little thing in, a 'natural' food, NO GLUTEN mind you, and some other symptoms pops up? The whole thing about waiting to heal and it taking a while, well I don't buy it because I know when I eat my safe safe safe foods, there is nothing wrong with me. I feel healed. Then I go back to being sick? It just doesn't measure up to me.

Anyway, another question is WHY MUST THEY PUT ANYTHING ON OUR FRUITS AND VEGGIES? I mean, we shouldn't have to worry about potatoes! I haven't eaten potatoes in a while just because since I was on the SCD diet, I haven't even craved them, but now it's like, would I even want to try and add them? I mean, what other WHOLE foods have possible 'extras' on them? This is insane!

Allllso, I agree 100% that supplements DO NOTHING, and if they do, they make things worse. Since the whole corn thread, it's been almost a month now?.....I've only added supplements in my diet 2 times, and one was an acidopholis, and the other was cranberry pills. Well, both times I had a problem. Nowww....knock on wood but since I've been only (pretty much besides one or two incidents with peanut butter) eating whole foods, I haven't even had a need for the cranberry pills. I used to take them for bladder infections and I haven't had one since the last time I had something with salt on it. Also, my fiance is just now getting over a horrible horrible cold, he never takes off of work and this week he was home for two days in a row. (I swear, he NEVER takes off for being sick). Well, I didn't even take any acidopholis, and I didn't get his cold! (knock on wood). But when I was at my worst, someone would sniffle around me and I would be in bed for two weeks straight barley able to move from the bed to the sofa. And I was taking my acidopholis back then to 'prevent' from getting sick and to help fight off any bugs.

It really does scare me though to think of the food that the world is eating. It's so wrong. It's so sad. I'm so scared of what may happen to the people I love who are still eating all the crap that is supposed to be 'healthy.'

Rachel--24 Collaborator
For example, it is common when you have illness to be told take mass amounts of enzymes so that you can better digest your foods (so the theory goes). Well on most of the enzyme bottles it says do not take if ulceritis conditions are present in the stomach. Hello!! Leaky gut!! That's why you can't digest your food in the first place and then you are instructed to take massive amounts of something that potentially causes more of a leaky gut problem. It's so messed up.

Julie....I was wondering about all this stuff too. Leaky gut occurs in the intestines though....not the stomach...so maybe there is a difference? In my mind I feel that my body can do its own repairing and all this crap in a bottle is getting in the way. All the chemicals in the food are also getting in the way. Also what do you think about this? I was taking a really expensive digestive enzyme and I'm not really sure if it helped or not. I didnt get dramatically worse while taking them though. I never swallowed the capsules either. I'm sure you've checked out the ingredients to avoid lists for MSG....protease or protease enzymes is on all the lists. Thats in most digestive enzymes I think....I know its in mine. I was confused if the protease they were referring to is the same stuff thats in my enzymes. I guess it must be...

I also know with my specific experiences and research that NSAIDS (such as pain relievers, ibuprofen, etc.) cause holes in the stomach lining only after 3 months of general use. So I don't know about just wheat/gluten being the sole underlying cause of leaky gut. I have come to believe lots of substances can cause leaky, and most likely multiple substances at the same time. I think I read somewhere on this board where someone said they read that even a dairy allergy/intolerance can damage the stomach lining.

Yeah its true that all sorts of things can cause a leaky gut or keep it going....Candida is another culprit. I'm just curious if gluten is always involved somehow. Something has to get the process started in the first place but I agree with you....I think it could be a number of things. Mainly the drugs you listed and antibiotics.

Over the last 2 years I have dramatically cut down on my supplements, just to a multi-vitamin, pro-biotic, magnesium, and a b-complex. My stomach symptoms actually improved quite a bit. Then I recently bumped myself down to taking only my magnesium and I just I read on the MSG boards that even vitamins and minerals of an aspartate or citrate source is not safe. My mag is a citrate source. The last few days I haven't taken anything. I am going to drag out my juicer and get my nutrition from food, which is how it is supposed to work in the first place

I wonder if staying away from the supplements will really help us. I'm just like you...if I stray my symptoms return. Well I know I had a clean diet for 4 months with NO cheating....not even once. Everything I ate was organic but I didnt heal at all.....I spent hundreds of dollars on supplements during that time and I bet thats the main reason my gut didnt repair itself. I had no Candida overgrowth at the time either (I had tests)...I was treating the Candida effectively I assume but something was still damaging me.

I find it very very very interesting that Alzheimer drug research is based around finding Glutamate receptor blockers to protect central nervous system neurons against glutamate neurotoxicity known to cause neurological disorders. So they know there is a connection and that it is a big problem yet nothing is being done to change our food supply. This makes me very angry because I have lost 5 people in my family so far to Alzheimer's or Alzheimer's like diseases.

Yeah...I read some of that stuff too. I saw something somewhere...maybe someone posted it here? I cant remember...anyways, I read that they were trying to come up with some drug or something to block the effects of MSG. Ummm...HELLO....why not take it out of our food for starters! That would be the best way to block it....but of course that wouldnt benefit their pocketbooks. :angry:

Rachel--24 Collaborator
This is so amazing that you are all going through almost the exact same things as me! Rachel, I know what you're talking about when you said the rash around your mouth makes you feel like you have a mustache because it's so dark. That is how I feel when it gets bad. It's like you see something is different about my face, it gets a little puffy and I feel like it creates a shadow or something but up close, there's really nothing there. It's just red.

Dani, thats exactly like me...my face gets really puffy sometimes. It changes my features....noone else can notice...but its there and I can feel it.

Gosh...we are one frusterated bunch arent we. Well at least we're a determined bunch. :)

Well...I know I dont have Celiac cuz my problems are different and I dont have a main gene and yeah...people with Celiac stop eating gluten and gradually get better. That is....if they *only* have Celiac and nothing else going on.

Green12 Enthusiast

oh, and one more thing, even if you write to companies asking about MSG in their products I am not so sure we can even trust their answer. Did you read all that stuff on the board about how the different companies are trained/instructed on how to answer inquiries about MSG? No, you can't possibly be having a reaction to MSG or no our products do not contain MSG. Even Whole Foods people have a standard reply that everything in the store is ont only 'organic' but absolutely free of MSG.

Reminds me of the replies I got back from the supplement companies I contacted about corn derivatives. I said: "your product is labeled 'corn free' is there a chance that any ingredients are derived from corn?" Reply: "well, yes, the citrate in all of our minerals is derived from corn but processing gets really tricky and blah, blah, blah, even the most sensitive to corn individuals do not seem to have any problems...".

Scary. Very scary.

Mango04 Enthusiast

Okay so let me get this straight....

The 365 Organic Rice milk I buy from Whole Foods (which I think is 'enriched' and has 'natural flavors' and stuff like that) could have msg in it?????

....and the organic, all natural free range turkey lunch meat I bought from Jimbos (a super organic store) could have msg in it too??? (one of the ingredients is carageenen)???????

I don't react like some of you do, but this really makes me mad! I try to limit packaged food as much as possible, but I'd like to feel safe about the organic products I buy from a health food store. I looked at the Whole Foods website and they don't seem to address msg. Grrr.

Okay edit - or....do they just possibly contain versions of this glutamic acid stuff that isn't exactly msg but causes msg sensitve people to react?

Green12 Enthusiast
If your gonna get icecream maker I highly recomend this one

Open Original Shared Link

:D

Thanks for this link Vydor, I will check it out!

Gosh...we are one frusterated bunch arent we. Well at least we're a determined bunch. :)

Ha ha, so true. I'm glad we all gravitated toward each other and maybe we can figure all of this out, maybe write a book, solve all the world's problems, etc, etc :lol: jk!!

Okay so let me get this straight....

The 365 Organic Rice milk I buy from Whole Foods (which I think is 'enriched' and has 'natural flavors' and stuff like that) could have msg in it?????

....and the organic, all natural free range turkey lunch meat I bought from Jimbos (a super organic store) could have msg in it too??? (one of the ingredients is carageenen)???????

I don't react like some of you do, but this really makes me mad! I try to limit packaged food as much as possible, but I'd like to feel safe about the organic products I buy from a health food store. I looked at the Whole Foods website and they don't seem to address msg. Grrr.

Okay edit - or....do they just possibly contain versions of this glutamic acid stuff that isn't exactly msg but causes msg sensitve people to react?

I don't want to seem like a radical, I prefer more balance in my life and energy- I am mad and angry yes- but I think this calls for us more than ever to be our own advocates, research, investigate, ask lots of questions, and just eat the best we can.

But to answer your question Mango, it does look like even at the health food stores there isn't truth in labeling.

Calicat Newbie

Hi girls. :) Everytime I log on, someone's made a new connection that really gets me thinking. I can't tell you how much it has bolstered my spirits just to be part of a community of people who are actively working to figure this out and who can truly understand what it is like to be dealing with all of this.

Oh, and I just looked on all of my Ultra Clear canisters (the ones from Metagenics designed to treat leaky gut, inflamation of the gut, liver congestion, etc.) and they all have L-glutamine, or a form of glutamate and the Cysteine you referred to. Everything I have to treat the digestive tract, with the intention to heal it, has these ingredients in them. No wonder people don't get well.

Julie, way back before my celiac dx, I was being treated for possible candida and leaky gut by a chiropractor who had me take Ultra Clear for a liver detox. After I started the Ultra Clear I got about 5 times sicker than I was before. The doc told me that was impossible, there was no way it could be the supplement. :blink: I stopped working with him after about a month of getting progressively sicker. My entire head was swollen like a balloon and I felt absolutely terrible when I was taking that stuff and probiotics and I never did figure out why. Thank you so much for making the connection.

That's been one of the things that's perplexed and scared me for a while now, because the docs make you think it's 'random' and you'll never figure out how to get better if even the things that are supposed to help cause problems. Do they ever! Every single time I've taken a supplement (without exception) I've had a bad reaction. One dr even said 'well, you'll just have to live with it' and wanted to test me for 'hereditary edema' even though no one else in my family has any trouble with swelling and I don't either when I'm on a superstrict pure diet. He scared me so much and it just makes me so angry how much we've been lied to and dismissed. :angry:

Also, how come when I eat just fresh fresh fruits and veggies, meat and fish, and I feel like 10 million dollars, serioulsy, not one thing is bothering me on my body. And then I add one little thing in, a 'natural' food, NO GLUTEN mind you, and some other symptoms pops up? The whole thing about waiting to heal and it taking a while, well I don't buy it because I know when I eat my safe safe safe foods, there is nothing wrong with me. I feel healed. Then I go back to being sick? It just doesn't measure up to me.

I can't believe how similar we all are in this regard! I'm even questioning the celiac thing too, although my anti gliadin tests were extrememly high. No one else in my family has been diagnosed with celiac though, and here's the other thing...my head never swelled up when I ate wheat, and I didn't get this rash around my mouth either but it happens whenever i have gluten-free 'natural' foods and supplements.

Anyway, another question is WHY MUST THEY PUT ANYTHING ON OUR FRUITS AND VEGGIES?

I agree. It's complete madness. Apparently it has to do with getting a bigger yield from the crop, and therefore a larger profit, but in return they're sacrificing the health and lives of everyone who eats any food. It's so frightening. What are we supposed to do, grow our own fruits and veggies now too?!

The Alzheimer's connection really upsets me too. I just lost my grandmother to it a few months ago, and so many people are suffering because their relatives have it. I know it is really naive, but I just don't understand how the big manufacturers that use all of this glutamic acid can be so heartless. I mean, they have families too, right?

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,856
    • Most Online (within 30 mins)
      7,748

    Sonya Haskin
    Newest Member
    Sonya Haskin
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.