Omg...i Might Be On To Something

[Green12]

I just wanted to tell everyone that if I overlook any of your posts it's not intentional. There is so much new activity everyday and I sometimes don't get everyone/everything read or replied to.

Rachel, I'm so excited for you. Does this mean you are going to purchase the book

I had some homemade "chili" last night and I used canned tomatoes...I'm pretty sure it must have had citric acid. I couldn't sleep at all...it was a very fitful night until around 1:00 a.m. after which I never did go back to sleep.

No matter how much I hate to do it, I think I'm just going to HAVE to give up my convenience foods like canned stuff. Grrr!

I know, I'm right there with you. I don't eat a whole lot of convenience foods, but I do like to have a few things that I can grab and eat. I am finding it hard to do without just those few things.

Maybe we can compile a master list of safe things and share recipes and then it might make it easier to stick to this?? The less packaged items, the fewer the reactions, the more the healing.

[dlp252]

I just wanted to tell everyone that if I overlook any of your posts it's not intentional. There is so much new activity everyday and I sometimes don't get everyone/everything read or replied to.

Rachel, I'm so excited for you. Does this mean you are going to purchase the book

Ditto here! Besides that I am having major brain fog today and can barely remember anything. I just did a job for an attorney...I told her I'd email her the document when I finished and after she left I sat here dumbounded because I couldn't remember her name. Doh, I've worked with her for years--I had to look in our directory which has pictures of everyone! So, that was a long way of saying I can't remember what I read longer than a couple of minutes, lol.

[Green12]

Rachel,

I think pectin is in jelly too. I usually get all the 'just fruit' ones with nothing else added, but I think those still have pectin. I'll have to look into that. I can't seem to tolerate these jellies and maybe it's because of the pectin.

Calicat, thanks for all of your insights. Always so helpful and upbeat I am wondering if the sugar in your sherbet was really 'sugar'? I always get so sick eating the sherbets and the rice ice creams- it's better to just make our own then we can control what goes into it.

[Rachel--24]

I think pectin is in jelly too. I usually get all the 'just fruit' ones with nothing else added, but I think those still have pectin. I'll have to look into that. I can't seem to tolerate these jellies and maybe it's because of the pectin.

Julie, yeah...pectin is in jelly which sucks because I love pb & J and now I cant have either.

I do react to jelly but prior to this I had believed it was salicylates I was reacting to. Only 2 weeks ago before I read about msg I bought some strawberry jam that I found without citric acid (was concentrating on corn) but now I just stare at it longingly everytime I open the cupboard. I wont be eating it.

YEAH! I'm gonna buy the book now! I had already posted that I had decided to go ahead and order it cuz I dont feel like this is a dead end for me so I dont think I'll be jinxing myself. I posted that but then lost it....so now that you asked...I'm reposting it.

Calicat,

I found some tomato paste at Whole foods that doesnt have citric acid...it only has tomato paste. I dont know if paste is different from puree though.

Anyways, it was the store brand (365).

[dlp252]

What is the book? In my majorly brain fogged state I don't think I can go back through 20+ pages, lol.

[Calicat]

I just wanted to tell everyone that if I overlook any of your posts it's not intentional. There is so much new activity everyday and I sometimes don't get everyone/everything read or replied to.

Maybe we can compile a master list of safe things and share recipes and then it might make it easier to stick to this?? The less packaged items, the fewer the reactions, the more the healing.

Julie,

Me too. I'm glad you posted that. I've been stressing about not responding to everything and it's just nice to have that out there. And thank you again for your kind words, they really help me to stay positive.

And Dlp, I know what you mean about brain fog. I was at the grocery store and couldn't find my car keys after I checked out. I retraced all of my steps and thought maybe somehow I'd dropped them in with the veggies Right before I started freaking out I realized that I'd given them to my mom to hold (she was out in the car) so that i wouldn't misplace them, since i was feeling so foggy. Haha.

Julie,

A master list of safe things would be incredible to have on hand. Great idea The sorbet claimed that it was actually sugar rather than corn syrup, and I had contacted the company to make sure, but since they misled me about the MSG, who knows?! I got that weird hyper-salivation thing from it too, so either that's actually from MSG and not corn, or else they lied about the sugar. Or maybe it's from both. Either way, I'll be avoiding them!

Calicat,

I found some tomato paste at Whole foods that doesnt have citric acid...it only has tomato paste. I dont know if paste is different from puree though.

Anyways, it was the store brand (365).

Thanks, Rachel. I don't know if it's different either, but I'd like to try it and see! We're supposed to be getting a Whole Foods store here some time soon, but I've been thinking about just making a little field trip to one within an hour or so of where I live, once I start feeling a bit better, so I'll definitely check that out.

What is the book? In my majorly brain fogged state I don't think I can go back through 20+ pages, lol.

Dlp,

The book is called the MSG Myth and there's a website by the same name with all of the info. I think it's just www.msgmyth.com.

Btw,

has anyone gotten their book yet? I keep checking the mail but no luck yet...

Hope you're all having a lovely afternoon or evening or whatever time of day it is where you are

[Rachel--24]

A master list of safe things would be incredible to have on hand. Great idea The sorbet claimed that it was actually sugar rather than corn syrup, and I had contacted the company to make sure, but since they misled me about the MSG, who knows?! I got that weird hyper-salivation thing from it too, so either that's actually from MSG and not corn, or else they lied about the sugar. Or maybe it's from both. Either way, I'll be avoiding them!

Calicat,

If the sugar came from beets it would be high in glutamates. From what I read you'd want to steer clear of beet sugar and use cane sugar instead. When products dont specify and just put "sugar" you dont know where it came from.

Heres a link to good and bad stuff. I think its a good guide but you have to see what works for you.

I think this info might actually be in the book because it lists page #'s but I'm not sure.

Open Original Shared Link

[tarnalberry]

Julie, yeah...pectin is in jelly which sucks because I love pb & J and now I cant have either.

...

I found some tomato paste at Whole foods that doesnt have citric acid...it only has tomato paste. I dont know if paste is different from puree though.

Anyways, it was the store brand (365).

I think I saw a jam at Trader Joe's that didn't have pectin - just sugar. :-/ If nothing else, you could cook down the fruit, adding sugar, for something similar. I know this works for apples and blackberries, and would expect it to work for a number of other fruits, though maybe not all....

Tomato paste is much thicker than tomato puree, but you can always wisk it with a bit of water to thin it out to make it puree consistency and you'll have pretty much exactly the same thing. (There's probably a small cook time difference between the two, but nothing substantial.)

[Rachel--24]

Ok...about 8 months ago I had an episode that scared the crap out of me. I was trying to avoid casein so I bought ghee and was trying it out. I didnt feel right after using it but didnt think too much about it. I bought some gluten-free bread and made some toast and put the ghee on it. It was my first time using the bread and the second time using the ghee. Immediately after I ate I felt a swelling in my throat and a dry cotton-like feeling was creeping up my throat and into my mouth. My head was swelling and I kept spitting into the sink cuz it felt like something was in my throat. When I looked at my tongue I could see it turning white and fuzzy...this was the second time I'd actually seen this happen. The bumps in the back of my tongue were totally swelling up. It was really hard to swallow.

I kind of freaked out thinking it was candida and I was actually pretty hysterical and crying. My skin had that itchy/prickly feeling all over and I just kept getting puffier. My mom rubbed my back until I fell asleep and the next day my throat felt better but I was still real puffy.

I've tried ghee a few times since then and always end up reacting to it but not as bad as that night. I could never figure it out since its just clarified butter and its casein free. I could never figure out if there was something in the bread that bothered me. Now I see ALOT of things in the bread that could have caused this as far as msg goes. Heres the ingredients.

Flax Seed Bread

Ingredients: Water, corn starch, tapioca starch, flax seeds, safflower oil, ground flax linseed, evaporated cane juice, powdered egg whites, salt, yeast, guar gum, baking powder, (glucono-delta-lactone, sodium bicarbonate), pectin, sodium alginate, vegetable gum (cellulose), thiamine, niacin, vitamin B6, riboflavin, iron, calcium.

All of this stuff can contain msg and also the ghee is fermented dairy. Dairy is already high in glutamates so the ghee would be very high. It makes sense now.

The people on the candida boards tried to convince me this was candida but I felt like it was an allergic reaction...theres no way candida just appears like that and causes that kind of reaction then goes away a day or 2 later. The swollen bumps took longer to go down but in all these months they've never went down to normal and still swell from time to time. I always get an upset stomach, rumbling and loose stools with these reactions.

When I feel good my tongue is always pink...when I'm feeling bad and puffy its usually white near the back with swollen bumps. Its become a habit for me to look at my tongue after everything I eat....when my tongue is white its also bigger....like the whole tongue is enlarged. A long time ago when I was really sick it felt awkward in my mouth....like it was too big and it got in the way. When its pink it looks so much smaller and normal in my mouth.

Even though I had that bad episode 8 months back whenever I've seen my tongue turn white after eating since then I've thought of it as some kind of digestive problem rather than an allergic reaction. I do know which foods cause the whiteness to appear.

Chicken (most of the time)

Grains (all)

Cheese

Milk

Soy

Beans (all that I've tried)

Nuts (all that I've tried)

seeds (I've only tried pumpkin and sunflower)

Flaxmeal cereal (its just flaxmeal with water)

All processed gluten-free breads and snacks

If you go back a page or two you can see my list of foods high in glutamates from DogtorJ's site. Is it a coincidence that every one of these foods are on that list?

Sometimes I can feel that same throat swelling and cotton like feeling when eating these foods. I've noticed it most with milk (only if I drink it straight), soymilk, chhese and beans....also anything with carageenan in it. I'm learning now that if it feels funny in my throat as its going down to STOP eating it. Its an accumulative effect because if I'm not in the midst of a reaction I may be able to eat ice cream with no noticeable effects...once I reach the "threshold" though every food I just listed will cause the symptoms to worsen and I get more "poisoned".

So I started eating quinoa cereal a few days ago...the first day and a half I was fine. It was probably about my 4th bowl that my throat felt a lttle funny and my tongue started getting white. I felt pressure in my face. I always get pressure in my nose and jaw during a reaction. Yesterday I had alot of energy at work and felt really good...I had a bowl of quinoa for lunch and felt the reaction. My ears started hurting too. I went back to work with blurry eyes and brainfog. My arms and back and hips hurt and I didnt have the same energy plus I had abdominal pain (not bad though). It wore off after a few hours and I started feeling better again but tongue was still white.

When I got home I started reading about quinoa on the box and it has a bunch of nutritional info where it compares quinoa to the other grains. Quinoa is higher than the other grains in everything listed...it lists just about everything thats in amino acids except glutamates. I start thinking it must be *higher* than the other grains as far as that goes becuz its higher in *everything*. I decided to push my luck with the cereal and made another big bowl...for the sake of figuring this thing out.

This time my tongue turned all the way white (usually its only in the back). The muscles got tight in my face and I had alot of burning around my mouth. I ate it all. Within an hour I could feel the muscles in my shoulders get sore as well as my back. My throat was swelling and it was difficult to swallow. Everything started to ache and my lips kept burning. I had alot of pressure in my nose. I drank alot of water and some of the symptoms started to improve but I ended up with some "d".

I then made the cookies w/out the tapioca but added a tiny bit of the quinoa. I got no symptoms from the cookies. No pressure in my face and my tongue started to go back to normal. One thing I've noticed is that some foods seem to "absorb" the stuff that usually causes a reaction. For example if I use milk in pancakes I dont get swelling or white tongue...but if I drink the milk alone....its a different story. This isnt always the case though...if I get to a reactive state I'm gonna react no matter what.

The amount of quinoa in the cookies was insignificant and was mixed with all the other ingredients whereas the cereal was about 2 cups of quinoa by itself.

Its definately a chemical reaction occurring. This morning my urine had that orange appearance again but I ate some zucchini, more cookies and drank lots of water and things got more normal. I then decided to test Tinkyada pasta since thats something I've eaten alot of the past month. Half-way through I started getting the tightness in my jaw and pressure in my nose. I ate it all and now have some burning on my lips and cheeks. Checked out my tongue and its white again with swollen bumps. If I had not eaten all that quinoa and had been symtom free longer than a few hours I probably could have gotten away with eating the pasta and not feeling anything and with my tongue remaining pink. Thats how it works....its very difficult to figure out because of the build-up effect. After the pasta my shoulders started to hurt again....its easy to see how I was bedridden before I changed my diet. A few weeks of this and I'd really be wishing I was dead. Which is what I used to wish for every night when I was on disability.

A couple days of quinoa and I'm reactive. Too much chicken...same thing. A couple days of any kind of nuts (especially peanut) and I'm really bad.

A couple months back I ate a whole block of cheese, had a major reaction, toltally swelled up and got constipated for more than 2 weeks with pain everywhere. Some of you may remember me posting about that....I had thought it was casein even though I tested negative for casein intolerance and get the same reactions from ghee which is casein free. Now I know that cheese has the highest amount of free glutamates than any other food. Something like more than 60% of it is free glutamates. Hard cheeses are the worst and what I ate was a block of swiss cheese.

I'm soooo certain of what the problem is now and I feel really happy. I'm not going to do anymore tests.

I'm going to try and detox now. Its been 3 years of being sick and I've never cleared my system of msg. From what I've read it can take a few weeks to clear the body so I'll have to be extra careful. I think that once I've totally cleared it out of my symptom I can probably get away with an occasional small amount. Definately not by itself but mixed with other foods. From what I've read once its cleared the body most people can tolerate the natural glutamate in grains and foods like tomato as long as its not excessive. Its mainly the chemical form in processed foods, meds or supplements that cause the overload and the cascade effect that follows causes the immune system to be extremely sensitive.

So thats my story....sorry so long. I can *never* tell a short story....and obviously I cant write one either.

[jerseyangel]

Wow Rachel--I have to hand it to you for sticking with all of that and figuring out what the culprit was! I would have been too scared to continue--I have a terrible fear of an allergic reaction. I actually had the full compliment of skin allergy tests just to put my mind at ease about it. Hopefully now you can clear all of it out of your system and really begin to go forward from there. You are one tough, determined girl!! Hope everything else is going well

[Rachel--24]

Oh..the first recation I ever had with the fuzzy white tongue thing occurring right before my eyes was last summer while I was on the candida diet. After a couple months of only meats and veggies I tried a snack thats suppossed to be candida safe. All it consisted of was flaxmeal, unsweetened cocoa powder and coconut milk. I had a major reaction that kept me up all night with tingling and burning throughout my body. The first 2 ingredients never caused a reaction this extreme although flaxmeal causes some puffiness. The cocoa doesnt do anything to me. It was definately the coconut milk but I could never figure out why. The only ingredients were coconut milk, and guar gum. GUAR GUM!!! It makes sooo much sense now I cant even believe it.

Wow Rachel--I have to hand it to you for sticking with all of that and figuring out what the culprit was! I would have been too scared to continue--I have a terrible fear of an allergic reaction. I actually had the full compliment of skin allergy tests just to put my mind at ease about it. Hopefully now you can clear all of it out of your system and really begin to go forward from there. You are one tough, determined girl!! Hope everything else is going well

Thanks Jersey,

I feel like I've worked on this non-stop for the past 13 months. My mind has constantly been going with neverending questions. If I'm right about this it will be the most rewarding experience ever. I dont think I could have ever made it this far w/out the support I've gotten from this board. If I'm not there yet....I'll keep plugging along like usual but I really have such a feeling about this. Also when things get complicated I really pray and ask for some guidance (which I've never done in my life) and I swear....everytime I've reached a low point something happens to lead me more into the right direction. Its really been an amazing journey.

[Green12]

Thanks Jersey,

I feel like I've worked on this non-stop for the past 13 months. My mind has constantly been going with neverending questions. If I'm right about this it will be the most rewarding experience ever. I dont think I could have ever made it this far w/out the support I've gotten from this board. If I'm not there yet....I'll keep plugging along like usual but I really have such a feeling about this. Also when things get complicated I really pray and ask for some guidance (which I've never done in my life) and I swear....everytime I've reached a low point something happens to lead me more into the right direction. Its really been an amazing journey.

Congratulations Rachel, good work. I am really happy for you I really admire your strength, for never giving up in your search for answers.

I feel like I am a few steps behind you. I am slow to process everything and I am still going through a lot of information as far as what and what not to eat. Plus I have to recover from my 6 day gluten fest and right now I have been eating anything as long as it is gluten free to get me through a few days. So I sit here at my computer on my puffy ass eating gluten free cheese fries and ask you, now that you are going to stop testing foods and experimenting, what will you be eating to detox?

You mentioned chicken, I eat so much chicken. Should I not eat chicken?

[jerseyangel]

Rachel, I think your mind is always going on this because you know deep inside that something is not right and you have to stay on it until the whole thing makes sense. I believe that you are on the brink of discovering exactly what that is. One thing is for sure, by you sharing this process, you are helping a great many people along the way. I can completely relate to the feeling--I would like to get this behind me--sooner rather than later

[Green12]

Dlp,

The book is called the MSG Myth and there's a website by the same name with all of the info. I think it's just www.msgmyth.com.

Dlp,

Just to add to Calicat's post - the author is Debby Anglesey and the title is "Battling the MSG Myth"

I haven't received mine either

[jerseyangel]

Julie--I had to chuckle--puffy ass! You poor thing--you're going to figure it all out. I've spent the last 6 months or so taking one step forward and two back. It's a slow process, trying to determine what to eat--and what not to. I'm thinking that this plan of basic, plain food is the way to go. I tried orange juice earlier in the week, and actually felt my intestines burning for a few hours afterwards. A mistake that I keep making is trying to move on to other foods too quickly. I'm thinking at least 6 months of being super careful.

[dlp252]

Thank you both for the name of the book. I may have to order that.

Rachel, I'm so happy you are finally making some progress. The biggest challenge for me to to really make myself believe that I HAVE to do this, lol...I really admire your stick-to-it-tiveness. The swelling of the throat would have terrified me! That really does sound like an allergic reaction.

Thanks for posting links to the book website and the list of good/bad foods.

[miamia]

I react really badly to honey, but I read somewhere that you aren't supposed to give honey to infants because they haven't developed enough enzymes to break it down or something, so I'm thinking maybe it's temporary until we're further along on the healing spectrum? I've never tried agave or maple syrup. Do you use them in place of sugar in baking or do they serve another purpose, like binding ingredients in place of egg?

Miamia,

I'm so angry for you. It's just so wrong to have people be that cruel, especially when you're suffering. I just don't understand where that kind of meanness comes from. It's so hard to erase the memory of those words, they cut so deep. I just wish I could make it better for you. I'm with Rachel, If only we'd been there too. Sometimes it really helps to have a defender or two on your side. You'll have a virtual army before long, and we won't let anyone mess with you!

Omg! I've been explaining this tongue rash to different doctors, chiropractors, etc for ages now and no one knows what it is. I can't believe that you get the same thing. I guess by now I shouldn't be surprised to see the similarity in symptoms, it's a running theme, but still, this has baffled me for so long. I'm going to look over your list and see if my tongue thing is in response to those foods...I bet it is. Thank you so much for posting about that!

About your cookie recipe...over the weekend I tried baking with sweet rice flour (and i was getting excited about it) but then i reacted. Well, i just realized that i used baking powder, so that could definitely have caused the problem b/c of corn. I'm thinking about giving the sweet rice another try with your ingredient list. Does one of those ingredients work as a substitute for the baking powder?

thank you guy so much for your support. Its carzy I am not someone who won't stand up for herself but Its just so shocking that you kind of don't have time to react.

Ok the tongue rash thing- what is this like for you. I find when I eat something that bothers me my mouth feels cut up- the sides of my mouth and the roof as well. I actually have cuts on the roof of my mouth. Soes this sound at all like something anyone has experienced?

Miamia

[Rachel--24]

I find when I eat something that bothers me my mouth feels cut up- the sides of my mouth and the roof as well. I actually have cuts on the roof of my mouth. Soes this sound at all like something anyone has experienced?

Miamia

Miamia....yes, that happens to me. Before I got careful with my diet the roof of my mouth felt scratched and rough alot of the time. Now it really only gets like that on the insides of my cheeks, lips and a little on my tongue. Thats where I get the little blisters too. The area under my tongue gets pretty tore up sometimes too but not in a long while.

[Rachel--24]

Plus I have to recover from my 6 day gluten fest and right now I have been eating anything as long as it is gluten free to get me through a few days. So I sit here at my computer on my puffy ass eating gluten free cheese fries and ask you, now that you are going to stop testing foods and experimenting, what will you be eating to detox?

You mentioned chicken, I eat so much chicken. Should I not eat chicken?

Puffy ass

I could use some puffiness in my ass...I'd definately rather have it there than in my face.

Where did you get gluten-free cheese fries?

Since it seems like I'm reacting to the natural glutamates right now I'm avoiding all the stuff thats listed as being high. I posted a small list 1 or 2 pages back. It lists all meats as having significant amounts but some are lower than others. I'm going to stick to meats like lamb and veal for a few weeks. When I went on my "salicylate free" trial diet fow 2 weeks I ate massive amounts of chicken and cabbage. I got more puffy and symptomatic in those 2 weeks than I've been in probabaly a year....plus I was on alot of supplements. I didnt know which one to blame cabbage or chicken.

I know I've always gotten really puffy making chicken soup and for awhile during the summer I had wondered if I had become reactive to it because if I ate alot of it my symptoms would worsen. After seeing that it has a good amount of glutamate and knowing what my expeience was 2 months ago when I ate alot of it....I just think I'll do better w/out it for now.

Rachel, I am so very very happy for you! I have been trying to be patient with the gluten free diet but I'm still having problems, but reading the posts and hearing your success I've decided to also cut out the MSG and your stories will save me much suffering and fear. I know not everyone is the same but if it works I owe you everything!

Thank you Floridian.

I'm not there yet though....I'm still a work in progress but hopefully I'm close. Good luck with the diet improvements....it can never hurt to take something bad like msg out of your diet. Too bad I didnt know all this a long time ago.

[tarnalberry]

The people on the candida boards tried to convince me this was candida but I felt like it was an allergic reaction...theres no way candida just appears like that and causes that kind of reaction then goes away a day or 2 later.

have you been tested for IgE allergies? if no, PLEASE do. that sounds like one, and one that you may want to carry an epi-pen for.

[Rachel--24]

have you been tested for IgE allergies? if no, PLEASE do. that sounds like one, and one that you may want to carry an epi-pen for.

I've been tested for IgE allergies and I dont have any. I've also been tested for IgG intolerances and dont have any of those either. If its a reaction to MSG though there is no way to test it....it wouldnt be an allergy. Technically you cant be "allergic" to it because its a neurotoxin.

After all the IgE tests came back normal another doctor ordered the IgG tests (one of those ones that tests like over 100 foods) and she couldnt believe it when the tests came back totally normal. I was reacting to everything and at first she thought they had given her someone else's results...but they were mine. I guess this would make sense if I was reacting to something other than the actual food itself. Its all been so bizarre and complicated from the start.

[tarnalberry]

I had thought so, just couldn't remember. The milk thing made me worry about it. At least those tests are usually pretty good about picking up anaphylactic reactions.

[brendygirl]

Yeah, sometimes I feel food-phobic. Sometimes after I cook something I can't bring myself to eat it. I didn't eat red meat for 10 years, for my own reasons, and then after celiac, I decided to go back to it. But it's not easy since I don't have a taste for it. Grease grosses me out. I'm doing a terrible job of the glutenfree... Half the time I live on rice cakes, fruit and veg and chocolate and the other half I get sick off meat or something that's been flavored with soy sauce or I bought the wrong yogurt or whatever. This is not easy. Some of you seem like such experts, so I just keep trying to learn....

[Calicat]

Hi girls I've got so much to post in response to all that you've written since i last checked in, but I've been rambling way too much (sorry) and I'm in the midst of a pretty severe reaction, so I probably shouldn't even be on the computer right now, but I just have to respond to some of this...

Ok...about 8 months ago I had an episode that scared the crap out of me. I was trying to avoid casein so I bought ghee and was trying it out. Immediately after I ate I felt a swelling in my throat and a dry cotton-like feeling was creeping up my throat and into my mouth. My head was swelling and I kept spitting into the sink cuz it felt like something was in my throat. When I looked at my tongue I could see it turning white and fuzzy...this was the second time I'd actually seen this happen. The bumps in the back of my tongue were totally swelling up. It was really hard to swallow.

I've tried ghee a few times since then and always end up reacting to it

the ghee is fermented dairy. Dairy is already high in glutamates so the ghee would be very high. It makes sense now.

The people on the candida boards tried to convince me this was candida but I felt like it was an allergic reaction...theres no way candida just appears like that and causes that kind of reaction then goes away a day or 2 later.

Sometimes I can feel that same throat swelling and cotton like feeling when eating these foods. once I reach the "threshold" though every food I just listed will cause the symptoms to worsen and I get more "poisoned".

I'm soooo certain of what the problem is now and I feel really happy. I'm not going to do anymore tests.

I'm going to try and detox now.

Rachel,

I'm so happy for you! It all makes so much sense. Your tenacity is really encouraging, and how gratifying to figure out how to cure yourself! Thank you so much for all of your advice and research...it's got me pretty convinced that the MSG/corn thing is the missing piece for me, too.

Everything that you mentioned about the ghee...I had those exact symptoms when I tried it, both times. People were trying to convince me it was candida, but just as you said, how could it come and go? It feels like there's finally a common link between all of this!

Congratulations again. It's so wonderful that you're on the road back to health

I feel like I am a few steps behind you. I am slow to process everything and I am still going through a lot of information as far as what and what not to eat. Plus I have to recover from my 6 day gluten fest and right now I have been eating anything as long as it is gluten free to get me through a few days. So I sit here at my computer on my puffy ass eating gluten free cheese fries and ask you, now that you are going to stop testing foods and experimenting, what will you be eating to detox?

Julie,

I'm so sorry that you're still recovering from the glutening If it makes you feel any better, I'm a puffster too Finally it's leaving my face (what a difference that makes!) but my body's still really puffy and I keep messing up this MSG-Corn free diet by trying new things before I hit a base. It always takes me at least a few "bridge days" between recovering from a bad reaction and regaining the willpower to go super-strict again. I really hope you start feeling better soon

I've spent the last 6 months or so taking one step forward and two back. It's a slow process, trying to determine what to eat--and what not to. I'm thinking that this plan of basic, plain food is the way to go. I tried orange juice earlier in the week, and actually felt my intestines burning for a few hours afterwards. A mistake that I keep making is trying to move on to other foods too quickly. I'm thinking at least 6 months of being super careful.

Jersey,

I'm going to shoot for at least 6 months really clean too, before I even consider adding something new. I've definitely been doing the one-two step too I had a major reaction that I'm thinking may be due in part to orange juice too. I wonder if that's anything to do with MSG? I can't imagine that it is, and yet, I almost hope so because it would be so nice to be able to pinpoint the "why."

thank you guy so much for your support. Its carzy I am not someone who won't stand up for herself but Its just so shocking that you kind of don't have time to react.

Ok the tongue rash thing- what is this like for you. I find when I eat something that bothers me my mouth feels cut up- the sides of my mouth and the roof as well. I actually have cuts on the roof of my mouth. Soes this sound at all like something anyone has experienced?

Miamia

Miamia,

I know what you mean. Almost everytime I've been insulted, it takes me a while to react because I'm so stunned that someone could be so mean. And then I get angry at myself for not doing something about it, but it just catches you so off guard that you're totally speechless at the time.

I've gotten that sensation before, like my entire mouth is torn up andit actually does have cuts which sometimes have even bled (scary). For me, this is different from the rash with the white spots at the back of the tongue. I haven't gotten the cuts recently. The last time was when I ate Captain Crunch cereal.

Yeah, sometimes I feel food-phobic. Sometimes after I cook something I can't bring myself to eat it. I didn't eat red meat for 10 years, for my own reasons, and then after celiac, I decided to go back to it. But it's not easy since I don't have a taste for it. Grease grosses me out. I'm doing a terrible job of the glutenfree... Half the time I live on rice cakes, fruit and veg and chocolate and the other half I get sick off meat or something that's been flavored with soy sauce or I bought the wrong yogurt or whatever. This is not easy. Some of you seem like such experts, so I just keep trying to learn....

Brendygirl,

I'd be willing to bet that most of us on here feel food-phobic a good deal of the time. I know I do I think it's pretty hard to find a balance when you're on such a restricted diet, but just being on this thread the past few weeks has helped me to learn a lot. The support alone has been so helpful. You're definitely in the right place

[christine 25]

Hey Rach, Ill have to look up more on low glutamine diets, but are you allowed to eat

potatos, white rice or fresh corn?

Any veggies or fruits that are allowed.

help cause I dont bake??

Glad you are making progress, I hope it stays that way, and that you are right!

The ulitmate wrost reaction I could ever get would be to eat a can of progresso chicken noodle soup, and a glass of milk with swiss cheese. Talk about jaw pain!!!

Its so crazy isnt it?

Im trying shredded iceburg lettuce with mushroom, carrot. Sweet potato, and maybe some other veggies and fruits...

I love potatos tho and also rice....

I need to get some starch in im kinda confused.

But dairy is definately out...for me, ive had way too many reactions

Calicat I hope you feel better,,, what are you recovering from? I get bad reactions from orange juice and toungue swelling and sores, its all that acid. and somtimes my bladder gets irritated,,,, also I have intersistial cystitis,,, when I eat acidic foods or food high in vitamin c or patssium I feel like I have a UTI, I get bladdar pain, and it hurts to pee...they say its immune related its all connected for me. But since ive stopped gluten and orange juice I have no more cystitis symptoms.

Thyroid, bladdar, jaw, skin, food, chemicals,,, ahhh!

Christina