Omg...i Might Be On To Something

[Rachel--24]

I have the film over my eyes too...I tried to explain it to my eye doctor...it almost feel like I put goop in there...then my eyes tear and tear and tear. It isn't sticky though. He has me using some OTC eye drops which seem to be helping--at least I haven't felt it since I've been using them, but I've also changed my diet since then too.

I'd say I've been trying to figure out what the heck is wrong with me for at least the last 5-6 years...before that I never really thought too much about the stuff that was wrong with me--I guess it wasn't bad enough, lol. I do think that there was a defining moment, or maybe just that line of overload where my body couldn't take any more, and I think it was around 5-6 years ago.

Donna,

In the beginning my eyes were so messed up. At that time they were sooo stiff and dry. I kept going to the opthamologist because the pain was really intense. Probably the worst I've dealt with through this whole ordeal. She just kept telling me I had dry eyes and lots of people have them and I just need to use drops. Ummm...no...I know people with dry eyes who use drops and they dont have debilitaing pain and have to wear sunglasses at night. I couldnt drive or even watch tv. The drops made everything sooo much worse and stickier...it was a nightmare. Then they put plugs in my eyes to try to keep them moist but nothing worked. As far as the sticky tears she said something was going on internally that wasnt related to my eyes but it was causing my body to not produce all the layers for tears or something like that. Well...yeah...something *is* going on internally....somethings been poisoning me.

I reached that overload or defining moment pretty suddenly. I was never sick before.....I was very healthy and then in a moment I wasnt healthy anymore. It just happened really fast. I was under alot of stress at the time. Funny thing is, I can recall a period of time about 3 years before I got sick that I had some very minor symptoms exactly like what I have now as far as some burning and rashes around my mouth...it only lasted about a month. I had just ended a relationship and had some stress but it was short-lived. The symptoms went away. When I got sick 3 years later the stress I was having was constant and became chronic....maybe this is what caused the meltdown??

Also my lymph glands will get really swollen and tender(like in my throat and underarms and behind my knees sometimes) and my throat and ears will ache. Brain fog is a major problem too.

Hey...I forgot about that symptom! I've pretty much had chronic swelling of the glands under my ears. I get it under my arms too but not often anymore....mainly when I was really sick. I never noticed anything behind my knees....didnt even know there were glands there.

Another embarrasing symptom I forgot about....when I was really sick I would drool alot at night. I've never done that before and it wasnt just a little...it was excessive....I knew something wasnt right. It doesnt happen anymore but when I had a bad reaction not too long ago it happened again but only for that one night. If I get nightsweats now they are mild in comparison to what I used to get. I would literally be soaked like someone poured water all over me and my bed. My hair would be soaked too. This happened to me a couple times during the day also...it was back in the beginning and I was at work and was so hot that my body was dripping sweat. I was wearing a hat and my hat was wet and all my clothes were wet and sticking to me. I kept going into the freezer at work to try and cool off. I'll never forget that cuz it really freaked me out.

I'm so glad to hear that you felt really good yesterday! I hope it's continuing!

I do feel good again today! I feel like I'm still detoxing though.It seems like it takes me a week or two to really get the poison out of me. I love that you always seem very positive despite everything. Keep it up....I know we'll get the answers we're looking for.

Honestly and truly the swelling does go away if you figure out what the irritants are and clear them out. I know when we are at the height of our fluid retention and we look in the mirror and see such a big difference in our facial features and body it's very hard to believe that it's not going to be like this forever. It just takes a little time. So hang in there

I agree Julie, the swelling will go down and the fluid will go away too. Once we eliminate the cause it will get better. About 99% of the time I have some swelling/fluid to some degree but I've had days that it was almost all gone...so I know it can happen. I just never know what I was doing right during those times.

[Rachel--24]

All of this was months ago, yet it still hurts to think about it. It's like a scar, you know? The pain doesn't end when the injury does, it still hurts until it scabs over and heals, and that takes time. But you are going to start feeling better, and when that happens, you'll be too distracted by how good you're feeling to even remember the mean things that people said.

Calicat,

I have those scars too. In the beginning noone was believing me because outwardly I looked fine. I was in alot of pain and felt like I was losing my mind and wasnt really getting any support. I was scared and felt very alone. Thankfully everyone came around when they realized something really was going on and it was getting worse....I've had alot of support since then but it still hurts to remember some of the things that were said. Also the doctors caused me so much frusteration I cant even put it into words. I would go to every appt. hopeful that something good would come out of it but I always left in tears. I switched medical plans this year and in the end I had alot of anger but the new doctors I have are a huge improvement and I've mostly let go of the past.

[Green12]

Great idea!!! I'll do that first....thanks Juiem...

Floridian,

Also, the thing about dairy, if I understand this correctly, it's the casein that can be a real problem not necessarily the lactose. It might be why you reacted to the lactaid as well because the casein was still present. Casein is the protein in dairy, lactose is the sugar. Lots of people in this celiac community have problems with both gluten and casein so you will see all kinds of posts about this issue. If you are able you might want to try to go casein free as well to see if that is not causing some of your symptoms.

Again, only a suggestion. If anything you can look into some of the other threads for more information.

Can anyone handle pure maple syrup or raw honey??

[Rachel--24]

Can anyone handle pure maple syrup or raw honey??

I can handle some pure maple syrup as long as I dont overdo it. The honey gives me bad reactions....it seemed worse when I tried the raw stuff.

[Green12]

I can handle some pure maple syrup as long as I dont overdo it. The honey gives me bad reactions....it seemed worse when I tried the raw stuff.

I just found some baking recipes in a natural foods dessert cookbook that uses these as the sweetener.

[dlp252]

Donna,

In the beginning my eyes were so messed up. At that time they were sooo stiff and dry. I kept going to the opthamologist because the pain was really intense. Probably the worst I've dealt with through this whole ordeal. She just kept telling me I had dry eyes and lots of people have them and I just need to use drops. Ummm...no...I know people with dry eyes who use drops and they dont have debilitaing pain and have to wear sunglasses at night. I couldnt drive or even watch tv. The drops made everything sooo much worse and stickier...it was a nightmare. Then they put plugs in my eyes to try to keep them moist but nothing worked. As far as the sticky tears she said something was going on internally that wasnt related to my eyes but it was causing my body to not produce all the layers for tears or something like that. Well...yeah...something *is* going on internally....somethings been poisoning me.

Yep, at first he said my eyes didn't look dry, but then said I should try the drops anyway. They at least don't hurt or make mine worse. I do also from time to time get actual eye pain, where the whole eye just hurts. He didn't have any suggestions about what that might be...all my testing came out okay.

[Rachel--24]

I just found some baking recipes in a natural foods dessert cookbook that uses these as the sweetener.

Julie, Have you ever tried agave? I've been using some organic Agave sweetener and I seem ok with it. Its also alot less sugar than the maple syrup and probably healthier.

Tonight I made more cookies but this time w/out the Tapioca. I ate almost all of them and so far so good....no stomach rumbling or racing heart. Keeping my fingers crossed. The cookies were way better than the last batch too.

I had the tapioca ones on Sunday and last night I had those tiny black spots in my mouth. One one the inside of each cheek. They were very tiny though and are gone now. Whenever I get those....even the big ones they go away very fast....within one day usually.

This is off topic but is anyone watching AI tonight? Who do you want to win....Katherine or Taylor? I like both of them so I'm kind of back and forth on who I want to win.

[miamia]

Julie,

Again, I've got both of those things. I get so cold sometimes that I actually turn blue too, but its funny, i actually prefer how I'm feeling overall at those times to how I feel when I get all of the heat. It seems like they're different levels for me. Like maybe the cold is my body recovering from the excessive heat and swelling so it's actually an imporvement in a way? I don't know though.

When I'm really sick I swell up too. It seems to be opposite to what many people here experience, but I can gain a lot of weight over night when I'm not well, and it feels like it's never going to go away because i'ms till having reactions, which of course is just insult to injury! Thanks for posting about that, because it's so infuriating. And your post about looking in the mirror and feeling like it isn't ever going to change and you'll never look like yourself again...that really resonates, and makes me feel a lot less alone. Reading your posts always helps me so much. Thank you

I was actually going to ask how long everyone's been struggling with this, but then I thought maybe it wouldn't be a good idea because of how it might impact other people. Sometimes just saying it makes you feel worse too, at least in my experience. It's such a tricky situation. Thanks for being so sensitive to it, as always I'm so sorry that you've been dealing with this for so long. I really hope that it turns around, and permanently, soon.

This makes so much sense to me, especially considering that most of us only feel better when we're following some version of a caveman diet.

Floridian,

I'm so sorry that you're having such a rough time. It's so wrong to have to deal with insults on top of feeling terrible. The things people say can really linger. Some of my family and friends have been very critical too. I'm pretty small when I'm at my healthiest and really puffy when I'm not, but that means that when I'm actually up to seeing people, I guess I'm technically underweight. When I was home for the holidays, one aunt kept calling me "bones," and another kept saying I had to start eating, which was so maddening, because I do eat, but if I want to feel well enough to actually participate in life, then what i eat is really limited. People seem to have a really hard time accepting that. I have two friends who live far away who always ask the same question when we talk: can you eat more foods yet? It doesn't matter how many times I explain it, they just don't let up.

My brother-in-law (who I've never been close to) actually cornered me and did this whole lecture about how of course if you're anorexic you're going to feel bad and have health problems. Ditto the last quaky doc I saw pre-celiac dx, who was really cruel and insulting and said he thought i was anorexic. (when i mentioned celiac he said, well even if you have that you need to start eating oats and barley etc. haha) So much for "first, do no harm." All of this was months ago, yet it still hurts to think about it. It's like a scar, you know? The pain doesn't end when the injury does, it still hurts until it scabs over and heals, and that takes time. But you are going to start feeling better, and when that happens, you'll be too distracted by how good you're feeling to even remember the mean things that people said.

Sorry for the long posts today! Theres's just so much to relate to here, but I'll try to keep it shorter

Oh god- where do I start. As if its not enough that I am in pain most of the time the outward critism I have had to deal with is crazy. People will watch me eat and then try to tell me I'm anoerexic. People at my job tried to have an intervention with me. Meanwhile these people would see me eat. People always say stuff to me when I am walking down the street last summer this guy actually stopped me and made people aroiund us look at me saying "Look at her shes anoerexic thats disgusting" HE kept going and I was in such shock I didn't know what to do I coulden;t say anything. I have had so many terrible experiences. My sister thought I was paranoid and then I was with her and this women stopped me and asked me for advice on what to about her daughter because she was ":like me" I asked her what this meant and she told me her daughter was in the bathroom throwing up her lunch. I just don't understand how people feel they have the right to say things to me on the street I would never do that- I end up wearing sweat pants when its 80 degrees out just so I won't have to deal with it and even that dosen't usually work. It is so frustrating.

Sorry to vent so much.

Miamia

Julie, Have you ever tried agave? I've been using some organic Agave sweetener and I seem ok with it. Its also alot less sugar than the maple syrup and probably healthier.

Tonight I made more cookies but this time w/out the Tapioca. I ate almost all of them and so far so good....no stomach rumbling or racing heart. Keeping my fingers crossed. The cookies were way better than the last batch too.

I had the tapioca ones on Sunday and last night I had those tiny black spots in my mouth. One one the inside of each cheek. They were very tiny though and are gone now. Whenever I get those....even the big ones they go away very fast....within one day usually.

This is off topic but is anyone watching AI tonight? Who do you want to win....Katherine or Taylor? I like both of them so I'm kind of back and forth on who I want to win.

Rachel-

Iuse agave too, Ican't handle honey or maple syrup so I use that in my cooking and so on and seem to be alright with it. It is actually good for you too, which is a good perk. I used a flour mix with tapioca and had a reaction too but I think it was that there was potato starch in it. I seem to not be able to handle potato at all right now. I use these rice wrappers with tapioca in them and they don't seem to bother me so I don't think it the tapioca for me. HOw do you do with Potato?

Miania

[Green12]

Julie, Have you ever tried agave? I've been using some organic Agave sweetener and I seem ok with it. Its also alot less sugar than the maple syrup and probably healthier.

Tonight I made more cookies but this time w/out the Tapioca. I ate almost all of them and so far so good....no stomach rumbling or racing heart. Keeping my fingers crossed. The cookies were way better than the last batch too.

I had the tapioca ones on Sunday and last night I had those tiny black spots in my mouth. One one the inside of each cheek. They were very tiny though and are gone now. Whenever I get those....even the big ones they go away very fast....within one day usually.

This is off topic but is anyone watching AI tonight? Who do you want to win....Katherine or Taylor? I like both of them so I'm kind of back and forth on who I want to win.

I haven't tried agave. I will have to look into that.

What is the recipe for your cookies? Please do share

This book I have doesn't use any eggs, I think most every recipe can be modified to use any flour and liquid sweetener (honey, maple syrup, or agave).

On American Idol, I totally forgot it was on, I just saw the last 5 minutes where they recapped the songs each of them sung. Looks like they both did a good job. I don't know, I wasn't as invested this season, I don't mind whoever wins I guess. Taylor is kind of funny with the "soul patrol, soul patrol", but I mean that in the kindest way possible

[Rachel--24]

Here's a list of foods high in glutamate that I got from DogtorJ....I always like to read his stuff and he's got so much good info on gluten, dairy, soy and corn and also glutamate and aspartate.

Here's the list:

Foods rich in glutamate and aspartate:

1) Grains: Wheat, barley, and oats are highest. Corn and rice are lower than the previous three but higher than potatoes.

2) Dairy Products: All Cheeses (cheddar, Swiss, Monterey Jack, Mozzarella, PARMESAN) are very high. Casein is very concentrated in cheese and is 20% glutamic acid by composition.

3) Beans: Soy, Pinto, lima, black, navy, and lentils

4) Seeds: Sunflower, pumpkin, etc.

5) Peanuts: Very high, as are cashews, pistachios, and almonds. I have more detailed charts on the site to show exact values for the various nuts. Everything in moderation applies when eating nuts of any kind. So, I do not recommend you reach for nuts when you are really hungry unless you can stop after a few. Nuts are very good for you..in moderation. For example, seven almonds a day gives you what you need .

6) Diet drinks: Primary source of aspartate (aspartame)

7) Prepared foods, soups: 70% of prepared foods and many soups have MSG

8) Meats: Note- All meats are naturally rich in glutamate and aspartate. Lamb (and eggs) are the lowest, while rabbit and turkey are the highest.

I have problems with seeds that I could never figure out...also all nuts...especially peanuts. I cant eat any nut butters. When I'm really bad even meat will bother me. Funny thing is whenever I eat anything on the above list my tongue turns white and the little taste buds on the back of my tongue swell up. I've tried every bean listed nad they all do this and my face gets puffy from all these foods.

Tonight my ex reminded me that I had very bad "D" *everytime* I ate Kraft mac & cheese. This was nothing new....this had been happening for the last 10 years at least. It was always a joke between us about the Kraft....cuz we would still buy it if it was on sale and it would always send me straight to the toilet. None of the other brands did that to me and mac and cheese was a staple in my diet.

After researching all this msg stuff I now know that Kraft puts MSG in ALL their products. Maybe this problem was something that slowly grew until my body reached toxic levels of msg. I was thinking back to my worst stomach upsets and bouts of "d" and they were usually after having soup or very rich meals. Mostly when I ate out. I was getting sick everytime I ate out. I remember crying in pain after having some marinated steak and potato soup at a resteraunt and also at work one day when I bought one of those rotisserrie roasted chickens from our deli. I spent the rest of the day in pain, sweating and in the bathroom....I found out these spiced up chickens have lots of msg too. I really think this is my answer.

[Rachel--24]

Oh god- where do I start. As if its not enough that I am in pain most of the time the outward critism I have had to deal with is crazy. People will watch me eat and then try to tell me I'm anoerexic. People at my job tried to have an intervention with me. Meanwhile these people would see me eat. People always say stuff to me when I am walking down the street last summer this guy actually stopped me and made people aroiund us look at me saying "Look at her shes anoerexic thats disgusting" HE kept going and I was in such shock I didn't know what to do I coulden;t say anything. I have had so many terrible experiences. My sister thought I was paranoid and then I was with her and this women stopped me and asked me for advice on what to about her daughter because she was ":like me" I asked her what this meant and she told me her daughter was in the bathroom throwing up her lunch. I just don't understand how people feel they have the right to say things to me on the street I would never do that- I end up wearing sweat pants when its 80 degrees out just so I won't have to deal with it and even that dosen't usually work. It is so frustrating.

Sorry to vent so much.

Miamia,

Reading your post got me really angry. How dare someone say something like that to you! What is *wrong* with people anyways....I cant imagine ever approaching someone and saying something so thoughtless and rude! It boggles my mind. I would be so angry if that had happened to me but also I would be so hurt inside I know I would cry and the words would haunt me. I feel really bad that you had to experience that...noone should have to deal with remarks like that. Some people just have no compassion for others and noone should make an assumption like that about someone else....they have no idea what you might be going through. Not everyone who is thin is anorexic just like not everyone who is overweight is an overeater.

I know how it is to want to "cover-up"....when I was 94 lbs. all my pants were loose....even the new ones I bought which were size 0 or even 00 were loose on me. I would tie sweatshirts around my waist to hide the fact that I had no butt and my pants were baggy. Now those pants are tight on me and someone at work told me "I can tell you're getting better becuz you have a little butt again...for awhile it was gone."

I dont think I would be so bold as to make a comment like that to someone either but I'm so happy to have some weight back on me I didnt care.

Hopefully soon the same will happen for you....it doesnt take alot....only 5 lbs. can make a big difference as far as how your clothes fit and that will give you more confidence out in public.

I would definately tell someone off if they ever made an assumption that I was anorexic. I wish I had been there when those people approached you.

[Rachel--24]

Hmmm.... is there any milk and/or ice cream without casein? Thanks again, maybe this will be one more step into getting better.

Sorry but there is no dairy product that doesnt contain casein. Casein is the protein in all dairy. In order to avoid casein you would have to eliminate all dairy products including those with the "non-dairy" labels such as cool whip...they all contain casein.

I agree with the previous posts though....many Celiacs cannot tolerate casein and it can cause a delay in healing along with other symptoms. Alot of doctors will recommend avoiding dairy during the first 6 months of the diet. Even if you are not sensitive to the casein dairy is very hard to digest and will cause stomach discomfort. If you can manage it....I would strongly recommend avoiding all dairy for at leat a couple weeks to see if there is improvement. It might make a huge difference.

[Rachel--24]

I haven't tried agave. I will have to look into that.

What is the recipe for your cookies? Please do share

Julie,

I just kind of threw stuff in a bowl and didnt measure anything. I have no idea how anything I make turns out any good....apparantly baking isnt that hard cuz if I can make cookies this way....anyone can. My Mom tried one and liked it. I'm not picky at all....so most stuff will taste good to me...especially now. If I dont get a reaction from these by tomorrow I'll try making them again....hopefully I can remember how I made them. This time I'll write everything down so I can post it. I know the ingredients I used...just not the quantities. Tell me if you're ok with these...

Rice bran, sweet rice flour, sea salt, organic unrefined unbleached cane sugar, organic spectrum shortening, water and agave. I'm pretty sure thats all I used. No dairy, corn, soy, eggs or gluten.

I can tolerate some dark chocolate as long as I dont overdo it. I ate a bar of chocolate today and was ok with it. I was doing ok with it for almost 3 weeks but then reacted but I think it was mainly because of having alot of Tapioca and getting hyper sensitive....when I get to that point I react to anything...thats usually when I start reacting to stuff like lipgloss which normally dont bother me. I'm also going to keep avoiding the top 4 bad guys which isnt that hard since I'm pretty much used to it now.

Next time I make the cookies I might add some chocolate....it would be good with raisins too but I never do well with raisins...probably becuz they are shriveled up grapes and I definately cant do grapes.

[Rachel--24]

Rice bran, sweet rice flour, sea salt, organic unrefined unbleached cane sugar, organic spectrum shortening, water and agave. I'm pretty sure thats all I used. No dairy, corn, soy, eggs or gluten.

Oh...I forgot 2 ingredients...Quinoa flakes and baking soda....pretty sure thats it.

[Calicat]

The honey gives me bad reactions....it seemed worse when I tried the raw stuff.

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?

Oh god- where do I start. As if its not enough that I am in pain most of the time the outward critism I have had to deal with is crazy. People will watch me eat and then try to tell me I'm anoerexic. People at my job tried to have an intervention with me. Meanwhile these people would see me eat. People always say stuff to me when I am walking down the street

Miamia

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!

Here's a list of foods high in glutamate that I got from DogtorJ....

Funny thing is whenever I eat anything on the above list my tongue turns white and the little taste buds on the back of my tongue swell up.

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?

[Calicat]

Just some more corn and MSG stuff that I thought might be of interest...

You probably already knew this, and may even have posted it already, but I had forgotten. Blame the brain fog: iodized salt has corn in it (dextrose) so that's another sneaky source.

Also, nearly all of my supplements, even those that claim to be free of allergens from corn, have cellulose in them, which is listed on the corn allergen list, so along with the MSG thing, maybe that explains why they make us sicker for the most part?

Yet more on corn...I tried fructose instead of sugar ages ago and reacted really badly to it. Same thing happened with Splenda, which of course is bad for so many other reasons anyway, but here's the thing...they're both made from CORN!

Okay, enough on my corn tangent for tonight On to bigger beasties...

I don't know if you use any spices, but I contacted McCormick about their spices and I just heard back from them...the email is full of loopholes and the way it's written, I'm pretty sure that they do use MSG, it just isn't added as a "separate ingredient." Very sneaky again. I was going to post their response, but there's a big legal statement at the end of the email that basically says I can't. Hmm. Makes you think, doesn't it?!

Julie,

Thanks for the rotation idea. I had tried that a while ago, and was actually feeling quite a bit better when I did it, which you just reminded me of so I think it's worth another shot...if i can just remember what I was eating then...

Does anyone know of a tomato puree that doesn't have citric acid in it? I'm going to scale way back on tomato anyway, but I really enjoy having homemade spaghetti sauce (or in this case, zucchini sauce, since that's what i put it on) but now that I know what citric acid is, i don't want to use any of the brands that include it, which so far seems to be all of them. So, if anyone's got a hint short of making my own puree, which would probably be best anyway, that'd be great thanks

[christine 25]

I saw in your signature that you were avoiding, gluten corn, eggs nuts, etc.

Are you eating dairy?

I myself cant tolerate dairy at all, it is the thing I have found that give me the wrost reactions, and they linger and when dairy builds up in my system I get depressed and a metal taste in my mouth with sores and increased saliva,,,dairy contains a lot of iodide in it, which i am super sensitive to.

Soups are totally out, the wrost is chicken noodle soup, I found that out 2 years ago....

Also hard cheeses make my jaw hurt, and my mouth dried up! Im afaraid to drink milk,,,, i had so many probs with it before I havent drank straight milk in a while.

I react very badly form these foods also eggs.

Hmmm sounds like I have a dairy issue.

I have a meat issue, I think I have issues with animal derived products, you never know what they fed the animal, even if its oraganic, meat contains so many unknowns, Im thinking about going vegan all together.

I do love yogurt, tho, its my favorite food, but im trying to avoid it for now.

Pre my discovery,,,,

for lunch I had a salad with some chiicken, red pepper, and a tiny bit of homemade balsamic dressing, felt ok, but not so good.

snack, some ice cream,,,,,,,,, i spluged,,,and immideately i felt really weak and my throat swelled up and my voice got all raspy, i had to take a nap, my head swelled up and felt like crap for like 6 hours.

So I decided I am not going to eat ice cream for a longgggg time. And I started fresh again tonight.

Tonight I had some organic hummus, a steamed and peeled sweetpotato, some all natural hot pepper sauce, JD hardines brand splashed ontop for some flavor, a peeled mango, some strawberries (very ripened and well washed) and a peeled pare. And I feel great!!!

I didnt eat any meat or dairy at dinner which i think made a difference. I also think meat is a big problem, I dont like fish and chicken I think is gross and gives me reactions, so I am eating meat in only tiny moderations for now, I will try the vegan thing later if I get positive results.

I would try pureeing and making your own tomoto sauce, the cirtic acid is a preservative, so its going to be in all the stuff on the shelves.

Heres a recepie for you,,,,,

peel rip tomatos take out the eye,,,, thats the bad green part at the top, it contains chemicals,,,, and core it

boil it and strain the seeds, put it in a food processor with some sea salt and garlic (if you can handle garlic), and maybe shredded carrots to thicken it up a bit and dump it on your spagettti squash, or zuchinni. How does that sound?

I bet you can freeze batches of it for later use~

Ill keep posting recepies that work for me, and let all you guys know about it.

Nuts, and nut butters give me the worst reactions, I am with you on that. Rachel.

I was hurting so bad for several weeks because I was eating peanut butter, the kind you can crush yourself with a grinding machine they had at whole foods,,,with no salt, it just goes through a grinder, pure and simple peanut butter. so I thought it would be safe,,,, ohh no, I was a puffy, pain girl after that!

Somthing ive noticed is that I feel like rice and beans make me feel better than chicken does...

chicken I have some real issues with.

And the turkey, I was wondering about that, I have worse reactions to turkey than chicken,,,, its prob the glutamines.

Does anyone know if its safe to drink unpasturized milk?

Rach,,, are you drinking the corn free milk still?

I eat chololate once in a while, but I think it does have a cumulative effect, and the caffine in it gives me bad reactions, I remembered that anything with caffine, coffee and coke causese swelling in me too.....

I also just got over some sores on my tongue and they went away, gosh they get tender,,, my tongue is swollen and I get the little clam marks on the sides of them, and canker sores in my mouth. I have not seen black spots or white foam,,, but I do get foamy saliva, or mucus, if thats what your talking about.

Also I didnt have the metallic taste at dinner tonight! so yeah!

Im going to keep experimenting with foods and ill let you guys know,,,,whats working for me.

Christina

[Rachel--24]

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?

Calicat,

I didnt use a substitute for baking powder...I did throw some baking soda in but I know from something I read that it doesnt work as a replacement. I have arrowrrot powder but didnt use it. I just figured that the sweet rice flour would be sticky enough to hold it together.

I think sweet rice flour is different from rice flour...it seems more thicker and stickier. Anyways, that was my theory and it worked....dont know if thats *why* it worked...it just did.

I'm betting it was the baking powder you reacted to because of the corn and msg...when I baked with baking powder back in January I had severe reactions....just didnt know why until recently. Luckily I wrote all this stuff in my journal....I even wrote out every ingredient I used. Now when I look back I can see it was the baking powder that was the main problem.

The other thing is if you find you react to all the flours you could be sensitive to sulfites which would be in the flours.Dont know if you noticed that or not but on the msg board alot of them are sensitive to sulfites as well.

I made a few more discoveries as far as the tongue stuff goes which I'll post about later....I'm off to work now. Thanks for the refreshers on the corn....believe me with all the stuff I've read its easy to get everything mixed up or to forget some important factors so I welcome the reminders...like the iodized salt thing...I think most people would forget about that one since its so prevelant and "normal in our everyday diet.

Have a great day.

[dlp252]

Miamia - I'm so sorry for the stupidity of some people! I'm never sure why people think it's okay to comment on something so personal whether they know someone well or not.

I use agave nectar. I actually really like the stuff and I don't seem to react to it. I've used it to sweeten my tea (before I gave that up too, lol) and have thrown it in some homemade sorbet. I've even used it in home made hot cocoa.

I have a big white spot on my tongue that I've had for YEARS. I've seen all kinds of doctors and my dentist about it. One allergist had me take Nystatin (anti fungal I believe)...but it never went away. Just recently my new allergist commented on it and I think wanted to give me more Nystatin, but I told her it didn't help.

The other two really nagging symtoms I'm having now are severe itching on my lower legs, and on the bottom of my left heel. This itching comes and goes (as in for many months I have it, then it seems to go away for a while, then I'll have it for months again). I've seen dermatologists, allergists, reg doctors, etc and have tried every kind of OTC cream/lotion and some prescription stuff. I've always thought it was somehow tied to what I'm eating, but have never figured out exactly what it was. I'm wondering if it isn't related to this whole corn/MSG thing...

The other thing is insomnia...it's been a bit better since going gluten/casein free in that I actually do get some good sleep at least 2 or 3 nights a week, but still have insomnia

[Green12]

Julie,

I just kind of threw stuff in a bowl and didnt measure anything. I have no idea how anything I make turns out any good....apparantly baking isnt that hard cuz if I can make cookies this way....anyone can. My Mom tried one and liked it. I'm not picky at all....so most stuff will taste good to me...especially now. If I dont get a reaction from these by tomorrow I'll try making them again....hopefully I can remember how I made them. This time I'll write everything down so I can post it. I know the ingredients I used...just not the quantities. Tell me if you're ok with these...

Rice bran, sweet rice flour, sea salt, organic unrefined unbleached cane sugar, organic spectrum shortening, water and agave. I'm pretty sure thats all I used. No dairy, corn, soy, eggs or gluten.

I can tolerate some dark chocolate as long as I dont overdo it. I ate a bar of chocolate today and was ok with it. I was doing ok with it for almost 3 weeks but then reacted but I think it was mainly because of having alot of Tapioca and getting hyper sensitive....when I get to that point I react to anything...thats usually when I start reacting to stuff like lipgloss which normally dont bother me. I'm also going to keep avoiding the top 4 bad guys which isnt that hard since I'm pretty much used to it now.

Next time I make the cookies I might add some chocolate....it would be good with raisins too but I never do well with raisins...probably becuz they are shriveled up grapes and I definately cant do grapes.

Yeah, one bowl drop cookies are hard to mess up. Especially for those of us who are used to eating a restricted diet. Pretty much anything that resembles a cookie hot out of the oven will taste good

This sounds great, I probably wouldn't use the shortening but I could substitute an oil for it. I might experiment with some cinnamon, nutmeg, or anise to give it a different flavor. Maybe some lemon, lime, or orange zest.

Raisins I think too, aren't they naturallyhigh in sulfer. Or something like that?

Thanks for this ingredient list!

[Green12]

Just some more corn and MSG stuff that I thought might be of interest...

You probably already knew this, and may even have posted it already, but I had forgotten. Blame the brain fog: iodized salt has corn in it (dextrose) so that's another sneaky source.

Also, nearly all of my supplements, even those that claim to be free of allergens from corn, have cellulose in them, which is listed on the corn allergen list, so along with the MSG thing, maybe that explains why they make us sicker for the most part?

Yet more on corn...I tried fructose instead of sugar ages ago and reacted really badly to it. Same thing happened with Splenda, which of course is bad for so many other reasons anyway, but here's the thing...they're both made from CORN!

Okay, enough on my corn tangent for tonight On to bigger beasties...

I don't know if you use any spices, but I contacted McCormick about their spices and I just heard back from them...the email is full of loopholes and the way it's written, I'm pretty sure that they do use MSG, it just isn't added as a "separate ingredient." Very sneaky again. I was going to post their response, but there's a big legal statement at the end of the email that basically says I can't. Hmm. Makes you think, doesn't it?!

Julie,

Thanks for the rotation idea. I had tried that a while ago, and was actually feeling quite a bit better when I did it, which you just reminded me of so I think it's worth another shot...if i can just remember what I was eating then...

Does anyone know of a tomato puree that doesn't have citric acid in it? I'm going to scale way back on tomato anyway, but I really enjoy having homemade spaghetti sauce (or in this case, zucchini sauce, since that's what i put it on) but now that I know what citric acid is, i don't want to use any of the brands that include it, which so far seems to be all of them. So, if anyone's got a hint short of making my own puree, which would probably be best anyway, that'd be great thanks

Calicat,

I seem to do fine with Fronteir spices, just the plain herbs/spices and not the mixtures or 'blends'. There is supposedly some added ingredients in the blends.

I like to cook with spices to add some flavor to my dishes, like I can't stomach plain baked chicken for some reason so I kick it up a little bit with different things.

For the tomato sauce I was going to suggest the same thing Christina did. I have made my own fresh tomato sauce before by taking roma tomatoes and putting them in a large bowl (large enough for them to be submerged completely by water). Then I heat up some water in my tea kettle until boiling and pour the water over the tomatoes until they are covered. I let them set for about oh 10 minutes, then drain. This makes the skin just peel right off really easily. Remove the little stem thingy and set aside. Then in a saute pan I put a little diced onion and a little olive oil and saute a little bit until soft, throw in a little minced garlic and saute a couple more minutes. If you use dried herbs, at this point I throw in a little oregano or basil (or whatever you like), then I throw in the tomatoes- I just tear them up with my hands into pieces, juice and all. If I am using fresh herbs I put them in at this time, I like to use fresh basil. Then I just cover and simmer for a little while. I like my sauce chunky and thick so I eat as is, but you could throw it in a blender and puree it. Adding a little sea salt is also optional.

[Green12]

I have a meat issue, I think I have issues with animal derived products, you never know what they fed the animal, even if its oraganic, meat contains so many unknowns, Im thinking about going vegan all together.

I do love yogurt, tho, its my favorite food, but im trying to avoid it for now.

Pre my discovery,,,,

for lunch I had a salad with some chiicken, red pepper, and a tiny bit of homemade balsamic dressing, felt ok, but not so good.

snack, some ice cream,,,,,,,,, i spluged,,,and immideately i felt really weak and my throat swelled up and my voice got all raspy, i had to take a nap, my head swelled up and felt like crap for like 6 hours.

So I decided I am not going to eat ice cream for a longgggg time. And I started fresh again tonight.

Tonight I had some organic hummus, a steamed and peeled sweetpotato, some all natural hot pepper sauce, JD hardines brand splashed ontop for some flavor, a peeled mango, some strawberries (very ripened and well washed) and a peeled pare. And I feel great!!!

I didnt eat any meat or dairy at dinner which i think made a difference. I also think meat is a big problem, I dont like fish and chicken I think is gross and gives me reactions, so I am eating meat in only tiny moderations for now, I will try the vegan thing later if I get positive results.

Nuts, and nut butters give me the worst reactions, I am with you on that. Rachel.

I was hurting so bad for several weeks because I was eating peanut butter, the kind you can crush yourself with a grinding machine they had at whole foods,,,with no salt, it just goes through a grinder, pure and simple peanut butter. so I thought it would be safe,,,, ohh no, I was a puffy, pain girl after that!

Somthing ive noticed is that I feel like rice and beans make me feel better than chicken does...

chicken I have some real issues with.

And the turkey, I was wondering about that, I have worse reactions to turkey than chicken,,,, its prob the glutamines.

I eat chololate once in a while, but I think it does have a cumulative effect, and the caffine in it gives me bad reactions, I remembered that anything with caffine, coffee and coke causese swelling in me too.....

I also just got over some sores on my tongue and they went away, gosh they get tender,,, my tongue is swollen and I get the little clam marks on the sides of them, and canker sores in my mouth. I have not seen black spots or white foam,,, but I do get foamy saliva, or mucus, if thats what your talking about.

Also I didnt have the metallic taste at dinner tonight! so yeah!

Im going to keep experimenting with foods and ill let you guys know,,,,whats working for me.

Christina

Christina,

I have shared the same thoughts many times over the last several years, that maybe I should go vegan. There are times when I can't stomach any animal foods. But I have tried to go without and I get blood sugar issues. I can't tolerate any soy for a protein source, or nuts and seeds, and rice (or other grains) and beans don't hold me at all.

I get really tired of eating chicken, turkey, and beef. I try to come up with interesting ways to prepare them but day in and day out it starts to all taste the same. Fish scares me because I have had big mercury issues in the past, and probably still now. And lamb and buffalo, and exotic meats I seem to have an aversion just to the idea of them, let alone eating them.

As far as reacting, I don't seem to have problems with the sources of meat/poultry I do eat. I get ground turkey, ground beef, brisket, and chicken breatst from Wild Oats. I can't do any packages meats, they put added stuff in it, I can taste the difference.

I also have a big problem with chocolate. I don't know if I am allergic to it in general or if it's the caffeine. I get really bad heart racing with it. That makes me sad because I love it.

It's hard to find an eating plan, we are all there with you in the same boat!

Good luck experimenting

dlp,

I have sleep problems too. I notice the cleaner I eat the better quality of sleep I have so there has to be a connection.

I also have the itching. I have hives too, and a more serious skin outbreak condition aedema, but the itching is different. My thoughts are that it is related to when I am reacting to something and the toxic build up is kicking out of my pores. But what do I know

[Calicat]

I saw in your signature that you were avoiding, gluten corn, eggs nuts, etc.

Are you eating dairy?

I have a meat issue, I think I have issues with animal derived products, you never know what they fed the animal, even if its oraganic, meat contains so many unknowns, Im thinking about going vegan all together.

Christina,

I'm using dairy in a really limited capacity (at this point only a splash of milk in my tea). I was vegan for 5 years but since I can't eat beans, seeds, nuts, eggs, or grains, and definitely no soy, it was pretty hard to keep my energy up. After I added yogurt, I had more energy but started having reactions...possibly from the pectin.

At this point the only animal products I use are the aforementioned milk in my tea, and I try to have fish twice a week. I just can't tolerate any other animal products, meats, or poultry at this point, and in all honesty it would take a heck of a lot of willpower to force myself to eat them even if they didn't make me react.

Thanks for the tomato sauce hints

Calicat,

I didnt use a substitute for baking powder.

I think sweet rice flour is different from rice flour...it seems more thicker and stickier. Anyways, that was my theory and it worked....dont know if thats *why* it worked...it just did.

I'm betting it was the baking powder you reacted to because of the corn and msg...when I baked with baking powder back in January I had severe reactions....just didnt know why until recently.

The other thing is if you find you react to all the flours you could be sensitive to sulfites which would be in the flours.Dont know if you noticed that or not but on the msg board alot of them are sensitive to sulfites as well.

Have a great day.

Rachel,

Thanks again for the baking info. I think you're right about sweet rice flour being stickier, and I just may try it again w/o baking powder. Gosh it would be nice to have a cookie and not be sick from it for days! Thanks for the encouragement I looked into the sulfite thing a while back, and I seem to be okay with them. My thyroid medication has sulfites in it, and so does my beloved tea and I've still had both of those when I've been well. Thanks for mentioning it, though.

I can't wait to hear more about your tongue discovery! Btw, I got the tongue thing again last night post-pectin. Coincidence or glutamte? I'd say it's the glutamte. I'm so excited that all of these strange things are starting to make sense!!

Hope you have a wonderful day

Calicat,

I seem to do fine with Fronteir spices, just the plain herbs/spices and not the mixtures or 'blends'. There is supposedly some added ingredients in the blends.

Julie,

Thanks for the spice hint. I haven't seen that brand, but I'm going to look for it now! Your tomato sauce recipe sounds so good. It actually makes me want to cook

The other two really nagging symtoms I'm having now are severe itching on my lower legs, and on the bottom of my left heel... I've always thought it was somehow tied to what I'm eating, but have never figured out exactly what it was. I'm wondering if it isn't related to this whole corn/MSG thing...

The other thing is insomnia...it's been a bit better since going gluten/casein free in that I actually do get some good sleep at least 2 or 3 nights a week, but still have insomnia

dlp,

I have sleep problems too. I notice the cleaner I eat the better quality of sleep I have so there has to be a connection.

I also have the itching. I have hives too, and a more serious skin outbreak condition angioedema, but the itching is different. My thoughts are that it is related to when I am reacting to something and the toxic build up is kicking out of my pores. But what do I know

Dlp and Julie,

I don't know if this is relevant to your itching and sleep problems, but I thought I'd mention it, just in case...

The sleep issues get a lot better when I eat really clean, just like you said, Julie. It's starting to seem as though anything processed or packaged, including or especially supplements, interferes with my sleep. I was taking supplements a month ago and there wasn't one night that I was able to get to sleep before 4am. I stopped taking them and now I can generally get to sleep by 1 or 2 am. Still not perfect, but a huge improvement. So I think it's definitely an MSG/Corn thing too.

Also, with the itching... I had sorbet last night with only 3 ingredients:sugar, lemon, and pectin. I started getting really hot within an hour of having it and then my entire body started itching and developed into red splotches in some places and my face got really flushed. It's still going on this morning, I am sooo itchy but I can't take anything for it and the only thing that could have caused it, I think, is the pectin. (Btw, I contacted the company last week to ask about MSG and they said they don't use it b/c it isn't "natural." After my reaction I did some research and pectin is extracted from citrus peels using...can you guess? Citric acid, aka MSG!) Also had trouble with sleep last night again, which I don't think is coincidental.

I guess it's bound to be a bit of trial-and-error with this until we get used to it, or until the book comes and explains how/why MSG is in all of these different ingredients. Somehow the explanation makes it stick in my head better.

I really hope that this is the answer for all of us and that it helps you to be able to get some sleep and to stop itching! It really seems like it could be the missing link

[Rachel--24]

I can't wait to hear more about your tongue discovery! Btw, I got the tongue thing again last night post-pectin. Coincidence or glutamte? I'd say it's the glutamte. I'm so excited that all of these strange things are starting to make sense!!

Hope you have a wonderful day

When I first went seriously gluten-free I bought some horizon vanilla yogurt and as soon as I started eating it my tongue started burning and my throat felt weird. about 7 hours later I had a full-on recation of face muscles tightening up and blurred vision and all the rest. Its been about nine months since that happened and I had never found the cause until this month with the whole corn/msg thing. The ingredients had pectin and also "natural vanilla flavors". It had to be MSG.

I'm really excited too....I dont think I've stopped smiling yet today. I really think everything is coming together finally.

I'll post more about the tongue stuff when I get off work.

[dlp252]

Dlp and Julie,

I don't know if this is relevant to your itching and sleep problems, but I thought I'd mention it, just in case...

The sleep issues get a lot better when I eat really clean, just like you said, Julie. It's starting to seem as though anything processed or packaged, including or especially supplements, interferes with my sleep. I was taking supplements a month ago and there wasn't one night that I was able to get to sleep before 4am. I stopped taking them and now I can generally get to sleep by 1 or 2 am. Still not perfect, but a huge improvement. So I think it's definitely an MSG/Corn thing too.

Also, with the itching... I had sorbet last night with only 3 ingredients:sugar, lemon, and pectin. I started getting really hot within an hour of having it and then my entire body started itching and developed into red splotches in some places and my face got really flushed. It's still going on this morning, I am sooo itchy but I can't take anything for it and the only thing that could have caused it, I think, is the pectin. (Btw, I contacted the company last week to ask about MSG and they said they don't use it b/c it isn't "natural." After my reaction I did some research and pectin is extracted from citrus peels using...can you guess? Citric acid, aka MSG!) Also had trouble with sleep last night again, which I don't think is coincidental.

I guess it's bound to be a bit of trial-and-error with this until we get used to it, or until the book comes and explains how/why MSG is in all of these different ingredients. Somehow the explanation makes it stick in my head better.

I really hope that this is the answer for all of us and that it helps you to be able to get some sleep and to stop itching! It really seems like it could be the missing link

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!