Omg...i Might Be On To Something

[jerseyangel]

Every time I reintroduce something, I get really sick and then it just goes downhill from there. My mom's explanation is that those of us who are so sensitive are 99% angel and can't tolerate Earth's polluted atmosphere very well so that's why only pure, whole foods work for us. Whenever I'm having a particularly bad day, and/or taking health criticisms too much to heart, that makes me smile.

Well now--that is the best explanation of this that I've ever heard! And I'm going with it Tell your Mom thanks--I smiled, too, when I read that.

I am thinking more and more I will continue with the whole foods way of eating, and for good. I have tried to reintroduce things for over 12 years and nothing has shifted. If I eat anything from a package or a box, even from the health food store I get sick. I just don't think my body can tolerate or adapt to our 21st century food supply.

Coming from someone who has been at this for 12 years, that really hits home. Maybe leaky gut does not always heal--and we just have to eat this way forever. I was reading about lectins the other day, and, like processed grains, those have not been in our diets for a long time (relatively speaking) either. I'm thinking those of us with this type of trouble have systems that, like Julie said, have not evolved.

[Rachel--24]

OMG...I might be on to something!

I've been thinking alot the last few hours. As far as the MSG I had kind of put that on the backburner the past few days cuz my mind was so busy with other possibilities.

Well heres what I was thinking about. I was making pancakes everyday for like 2 weeks with rice flour and and only a tiny bit of potato starch and some other misc. ingred. The rice flour was EnerG but I had ordered a bunch of mixes from Miss Robens and was waiting for them to arrive....I wasnt having any problems with the pancakes for those two weeks. I was using ultra-pasturized milk (msg) and maybe had some build-up from that but no serious reactions. Then looking back at my food diary I ran out of rice flour and started using tapioca flour. I started getting worse and having problems reacting to everything so had to discontinue the pancakes.

Going farther back to about a month ago I was eating PerkyO's cereal and got the biggest mouth blisters I've ever gotten. Mine are black like blood blisters...usually they are tiny and just look like little black spots but these were big raised blisters and they were bleeding. This was when I was just starting out on the corn free diet and these were the ingredients in the cereal.

whole sorghum flour, rice flour, tapioca starch, evaporated cane juice, salt. Vit & Minerals: Calcium, Magnesium, Vit C, Niacin (B3), Vit B6, Thiamin (B1), Riboflavin (B2), Folate

I figured it might be the salt or the sorghum flour which is related to corn. Also its got vitamins added. Another no-no on the corn diet.

Now I'm thinking it could very well be tapioca starch which would be highly processed in that cereal making it even higher in glutamate...also the added vitamins are a no-no for avoiding MSG.

Next is Amaranath cereal. Yes, I know everyone hates the stuff....but I like it. Always have problems with it though.....including those little blood blisters. The only thing in it is Amaranth and Tapioca flour (again this would be highly processed).

Ok then I made tapioca pudding....the first time I used gelatin instead of eggs (this was pre-MSG so I didnt know any better) and I got a reaction. I made it again using eggs..still reacted. I made it a third time using arrowroot starch and got the worst reaction. I think it was a definate build-up and worsening of symptoms as I continued to consume tapioca. Also I was using my ultra-pasturized milk for all of this and its being heated and cooked for a long period to make the pudding....more MSG.

My reactions are consistent looking back at my food journal. The most immediate and noticeable reactions are rumbling in my stomach and pressure in my head followed by a tightness in my chest, fast heartbeat and reflux. I get sweating at night and feelings of pins and needles. The next morning I wake up with some cramping and have very large loose stools....(I end up losing weight on these days). My hips, lower back and jaw ache. My neck gets really stiff and my eyes get blurry and burn. I get really puffy. The rumbling seems to continue for a day or so and also the cramping in my lower intestines. I get little heat flashes as well as cold spells. I get brain-fog and sometimes those little blood blisters and my teeth even hurt.

All that could get worse and worse if I dont change what I eat but I always change it up not really knowing what was bothering me.

We were discussing about feeling worse on gluten-free foods earlier and I'm wondering if the gluten free stuff might have higher amounts of msg since the *main* ingredients in the specialty foods are almost always tapioca and corn.....not to mention that they still add other stuff like natural flavors and all the other stuff they hide MSG in.

Now that we are all gluten-free (and trying to heal) our systems are more sensitive so we would probably react to toxic stuff in a similar way that we would gluten...only we *really* feel it since we're more "clean".

So back to my story.

I got all my Miss Robens mixes in the mail and by now I'm feeling good since getting over my last reactions so I'm anxious to try pancakes again with the new flour and no possibility of cc from corn (since thats what I thought it might be). I used Bette Hagmans mix of rice flour, potato starch and tapioca starch. I made pancakes 2 days in a row and I got way worse and it was obviously something in the mix so I never used it again. From what I wrote in my diary I was pretty messed up and my whole body ached....especially my arms and shoulders. For some reason when I get a reaction some of my muscles swell. Its my shoulder muscles, jaw muscles, hand muscles and the little muscles above my eyes....they always get puffy. Anyone else get this?

Ok....well I'm pretty sure I'm not just sensitive to Tapioca since this is the same reaction I get from eating gluten foods or drinking a soda or even chewing gum or smoking a cigarrette...all of which I havent done in forever. I used to think I couldnt drink soda cuz of the caffiene....my heart would feel like it was gonna burst out of my chest....I thought it was becuz I had Graves Disease.

Also this is when I'm getting those "hunger spells" or sugar cravings or whatever they are. Its after the whole heartbeat thing and I'm all shaky and need something really bad. I remember this happening constantly back when I was first getting sick and still eating normal food. Again I thought it was thyroid related.

So whenever this stuff happens to me I get ultra sensitive to everything...mainly foods and perfumes. Its like I feel "poisoned"....like my body is toxic and during these episodes my urine is orange. It actually *looks* toxic to me and I sweat alot at night. When I wake up my skin has a really strong odor to it.....its kind of a sweet smell I guess....not like normal body odor. This always happens after I get a bad reaction. These are my most bizarre symptoms that no doctor has ever heard of. I think this is my body overloaded with toxins and thats why I get ultra sensitive. If its MSG its probabaly putting a burden on my liver. I seem to detox through my skin and my skin will feel really sticky also it comes out of my eyes. After a bad reaction my eyes get really sticky and blurry like theres a film over them. I almost *always* cry when this happens. Its almost like a reflex type thing. My body forces me to cry even if I'm not sad to get rid of this stuff. This was happening alot 3 years back but no doctor could understand what I was explaining. It only happens now if I let things get out of hand and eat all the wrong stuff. The stuff that comes out when I cry is sticky like syrup and it has a whitish appearance and after I get it all out my tears are normal again. Its almost like my body produces excess mucus in reaction to the offending food/chemical and then it comes out my eyes, nose and skin (through sweat).

Its all really weird but thats what my life was like everyday the first two years of being sick...I think it must be MSG. It seems to *really* fit.

There seems to be ALOT of posts since only a few hours ago so I guess I'll be busy catching up.

I'm feeling really good today and the puffiness is going away so I'm gonna try to keep it this way.

Sorry for the super-long post.

[Rachel--24]

I also use the Vance's Dari Free potato based milk sub--that has additives, I know and I try not to use it every day.

Patti...I had the worst reaction to the Dari-Free. It cost me $9.99 and I only got to taste a tiny bit....it was good. I was already not feeling great at the time but as soon as I drank it I got the "sticky" eyes I described in my last post. I think it was the carageenan since the same thing happened with SILK soy and the boxed rice and almond drinks. Its such a bummer cuz I really liked those drinks.

[Rachel--24]

Can you eat potatoes? I eat them often--both white and sweet. That may keep you from losing any more weight.

I think I might be ok with potatoes but its hard to tell for sure...everytime I'm eating them I'm already reacting from other stuff so I'll have to try them when I'm totally fine to know for sure.

Rachel, that's similar to things that happen to me.... my urine smells sweet and there is a film over my eyes... I can't believe someone else has those symptoms.... well with a bunch of other symptoms as well, but I thought those were bizarre and I was even afraid to tell anyone, they would think I was crazy.

Thanks for posting that. I was kind of emabarrassed to "share" all that but hey....its what happens to me. Strange as it is.

Its hard to not worry about every little thing....especially since alot of what we read *is* scary so I know exactly how you feel. I still get scared sometimes when I read stuff but for the most part I try not to stress out because it seems to make my symptoms alot worse. I know....its easier said than done.

How long have you been gluten-free? If you just started out give it some time...you'll get better.

Also...if it helps I was down to 94 lbs. last summer and now I'm at 112 and this has only been the last month that I've gained it. Probably only 5 or 6 weeks ago I was at around 99 lbs.

Rachel--I react to tapioca the same as gluten! I made cookies the other day using only potato starch. No grain flours at all. I don't know if you can tolerate that, but they came out pretty good.

I'm not sure if I'm ok with potato starch but I could give it a try....I'm all for making cookies. It sucks that I discovered baking when I cant really use any real ingredients.

[Rachel--24]

So that is the million dollar question, what to eat in order not to lose weight but not to gain water weight either???

Julie....yep that *is* the million dollar question. Whenever I gained weight eating the processed foods it was all water...like 8 lbs. in a day. My doctor didnt believe me....siad he found it hard to believe. It was true.

Now I'm at 112 and it doesnt feel like its all water weight and also I'm not losing it all overnight like I used to. Its been stable like this for a whole month now....so thats something. I really started gaining when I started eating more but avoiding corn and maybe in the process I was also cutting out most MSG that I would have been eating. Now whenever I get a reaction I lose a couple pounds but its not on-going and I'm able to gain it back wheras before I would stay in a downward spiral....also coincidently its been a month since I stopped all the supplements (because of corn) so that may be an even bigger factor.

Floridian,

When I was at 94 lbs....which I stayed at for about a year...I was sooo self-concious about it. I felt like everyone would think I was anorexic...I dont know if anyone ever said that but I know it would hurt me if I had heard it. People are very cruel sometimes.

I was most self conscious when I went to the grocery store....I'm at the checkout buying meat, fish and veggies...and looking way too thin. I always felt the need to explain to the cashier that I didnt *want* to be eating those foods....I wanted ice-cream and donuts but had to eat this healthy "stuff" cuz I was sick.

I see in your signature that you've only been gluten-free for about a week? Definately give it some time. Hopefully you'll not only see inprovement in your weight but also in your overall health. Its still very new for you so you're going to have your down times....its normal. I hope you feel better soon.

[Matilda]

..

[Green12]

My reactions are consistent looking back at my food journal. The most immediate and noticeable reactions are rumbling in my stomach and pressure in my head followed by a tightness in my chest, fast heartbeat and reflux. I get sweating at night and feelings of pins and needles. The next morning I wake up with some cramping and have very large loose stools....(I end up losing weight on these days). My hips, lower back and jaw ache. My neck gets really stiff and my eyes get blurry and burn. I get really puffy. The rumbling seems to continue for a day or so and also the cramping in my lower intestines. I get little heat flashes as well as cold spells. I get brain-fog and sometimes those little blood blisters and my teeth even hurt.

For some reason when I get a reaction some of my muscles swell. Its my shoulder muscles, jaw muscles, hand muscles and the little muscles above my eyes....they always get puffy. Anyone else get this?

Also this is when I'm getting those "hunger spells" or sugar cravings or whatever they are. Its after the whole heartbeat thing and I'm all shaky and need something really bad. I remember this happening constantly back when I was first getting sick and still eating normal food. Again I thought it was thyroid related.

So whenever this stuff happens to me I get ultra sensitive to everything...mainly foods and perfumes. Its like I feel "poisoned"....like my body is toxic and during these episodes my urine is orange. It actually *looks* toxic to me and I sweat alot at night. When I wake up my skin has a really strong odor to it.....its kind of a sweet smell I guess....not like normal body odor. This always happens after I get a bad reaction. These are my most bizarre symptoms that no doctor has ever heard of. I think this is my body overloaded with toxins and thats why I get ultra sensitive. If its MSG its probabaly putting a burden on my liver. I seem to detox through my skin and my skin will feel really sticky also it comes out of my eyes. After a bad reaction my eyes get really sticky and blurry like theres a film over them. I almost *always* cry when this happens. Its almost like a reflex type thing. My body forces me to cry even if I'm not sad to get rid of this stuff. This was happening alot 3 years back but no doctor could understand what I was explaining. It only happens now if I let things get out of hand and eat all the wrong stuff. The stuff that comes out when I cry is sticky like syrup and it has a whitish appearance and after I get it all out my tears are normal again. Its almost like my body produces excess mucus in reaction to the offending food/chemical and then it comes out my eyes, nose and skin (through sweat).

Rachel, when you describe all these symptoms they are so freakishly similar to mine. When I am reacting I fee l so toxic and like it is oozing out of every poor on my body, my skin, my scalp. My core temperature completely drops out to where I am bone cold and my toenails, fingernails, and lips are blue, I feel like ice. And then I will also get hot flashes and heat rashes and abnormal sweating, so the temp extremes alternate. I will have pain in my lower back and hips and knees and ankles, jaw and neck and shoulders. My urine will be really really strong at times, sometimes really cloudy, and smelling sweet. My heart beat will race or it will skip beats all over the place. My eyes will tear up, I don't get the stickiness though. I cough up huge hunks of mucous (sorry to be so graphic on that one) Of course there is the swelling, but I don't seem to lose it as quickly as you and of course I get C so I just gain weight instead of losing weight at these times.

We were discussing about feeling worse on gluten-free foods earlier and I'm wondering if the gluten free stuff might have higher amounts of msg since the *main* ingredients in the specialty foods are almost always tapioca and corn.....not to mention that they still add other stuff like natural flavors and all the other stuff they hide MSG in.

I am convinced of this now. I think the stuff is way more processed too and it does me nothing but harm.

I am wondering if you could just get some amaranth grain (or millet, and etc.) and cook that and test a small amount it to see what would happen. If you are interested I have instructions for cooking all of the whole grains. It might be a case of just you reacting to all the added ingredients. If you could isolate some of the ingredients it might give you more to eat. I know for me I don't do well with the baked packaged goods with all of the grain flours but when I make whole millet or even brown rice I seem to do ok.

[miamia]

Miamia,

Not a silly question. Sometimes it can help a lot to know that you aren't alone, either in your symptoms, or in the severity of the impact on your life. I've had to completely put my life on hold for the time being(withdraw from school, stop working). I haven't had one day of being well since St. Patrick's and before that, the last time I felt good for any longer period of time was at Christmas. I'm not making any plans with friends or family right now either; it's just too hard to let people down all the time, and to try to explain all of this. So right now, my life is basically just about trying to distract myself from feeling so wretched, and to try to keep my spirits up ( some days are easier than others) and working towards getting healthy.

Calicat-

This post of yours made me feel so mcuh better- not for your situation - for that I feel horrible- but knowing I am not the only one who has had to completly put my life on hold I had to stop school and work too. And yes have given up making plans because I almost always have to break them. I don't understand how I was so normal before. I was so healthy worked out went out - and then bam!! ( ok long drawn out bam)

raw veggies or the cheese or yogurt, but I'm expecting that to change eventually. Also, quantity seems to be really important for me. I don't know if I have a small stomach or what, but I can't eat a lot if I want to feel well.

Hope that helps a little And thanks for your kind words

[Green12]

Coming from someone who has been at this for 12 years, that really hits home. Maybe leaky gut does not always heal--and we just have to eat this way forever. I was reading about lectins the other day, and, like processed grains, those have not been in our diets for a long time (relatively speaking) either. I'm thinking those of us with this type of trouble have systems that, like Julie said, have not evolved.

jersey, I'm always hesitant to disclose how many years it has been for me. I have really struggled with the reality of that, it's nearly half my life. I don't want to trouble anyone going through something similar, that this is how it will be for them. We are all different anyway and have different paths to healing with different time frames. I can look at where I was compared to where I am now and there has been improvement and growth. I was completely bed-ridden.

[Rachel--24]

Rachel, when you describe all these symptoms they are so freakishly similar to mine. When I am reacting I fee l so toxic and like it is oozing out of every poor on my body, my skin, my scalp. My core temperature completely drops out to where I am bone cold and my toenails, fingernails, and lips are blue, I feel like ice. And then I will also get hot flashes and heat rashes and abnormal sweating, so the temp extremes alternate. I will have pain in my lower back and hips and knees and ankles, jaw and neck and shoulders. My urine will be really really strong at times, sometimes really cloudy, and smelling sweet. My heart beat will race or it will skip beats all over the place. My eyes will tear up, I don't get the stickiness though. I cough up huge hunks of mucous (sorry to be so graphic on that one) Of course there is the swelling, but I don't seem to lose it as quickly as you and of course I get C so I just gain weight instead of losing weight at these times.

I am convinced of this now. I think the stuff is way more processed too and it does me nothing but harm.

I am wondering if you could just get some amaranth grain (or millet, and etc.) and cook that and test a small amount it to see what would happen. If you are interested I have instructions for cooking all of the whole grains. It might be a case of just you reacting to all the added ingredients. If you could isolate some of the ingredients it might give you more to eat. I know for me I don't do well with the baked packaged goods with all of the grain flours but when I make whole millet or even brown rice I seem to do ok.

Julie,

My temperature drops too but I dont turn blue really...my skin gets kind of pasty looking though. My fingernails get kind of hard and whiteish. Before I ever changed my diet I was freezing all the time and I spent 2 years focusing on my thyroid since I'd had treatment for Graves Disease....I thought all my symptoms stemmed from that. Amazingly when the doctor I was seeing put me on an elimination diet of only a few vegetables and meat my temp. went up immediately. I mean after freezing for 2 years straight but with weird episodes of sweating all of a sudden I wasnt cold! Every slip-up I've had on my diet and during the reactions I get cold agian. I have to take hot baths to feel better. During those 2 years that I was really sick and on disability I was taking sometimes 4 hot baths in one day.

I'm eating quinoa now and seem ok with it. I have an old thread floating around here somewhere that talks about how gross I think quinoa is. Its amazing the things we learn to like when faced with challenges and restrictions. Right now I love quinoa!! I'm ok with some rice but I've gotten major reactions to the quaker instant rice cereal which is enriched and also the Lundberg organic brown rice cereal...which is toasted or roasted or something to that effect. I dont do well with rice cakes either. If I'm feeling good I can have rice cakes but eventually they have an accumaltive effect on me and I start having problems after a few days.

[jerseyangel]

Yea Julie--I know what you mean. I have been sick--although not bedridden--for 20 years. Some periods of time were worse than others. Looking back even to last year at this time--just before I was finally diagnosed, I was so much worse than I am now. I could hardly function, had quit a job I loved, and was so depressed I didn't want to get out of bed. I am having a bit of a time with the food intolerances, but all in all, a good deal of improvement. I'm definately moving in the right direction.

[Rachel--24]

My mom's explanation is that those of us who are so sensitive are 99% angel and can't tolerate Earth's polluted atmosphere very well so that's why only pure, whole foods work for us. Whenever I'm having a particularly bad day, and/or taking health criticisms too much to heart, that makes me smile.

Calicat,

I love that!! Your Mom sounds very sweet.

My Mom's very sweet like that too. She's taken care of me alot through all this and she gives me massages most nights while shes watching her soaps. I Love my Mom. (sometimes she reads the posts too)

[Ursa Major]

Wow, I haven't read this thread for a while, because there were several more pages during the week we were in Vancouver, too. But I just read the last two pages, and couldn't believe it when reading about the film over some people's eyes and blurry vision when having reactions (making it hard to drive, or read or being on the computer, really), and puffiness and a lot of other symptoms. I get them, too (including the gross urine). I haven't quite figured out exactly what causes those, but I know that gluten does, and maybe tapioca as well.

I stopped using tapioca about two months ago, because I felt that I was having reactions to it. In the meantime, I am sure I am reacting to buckwheat as well, maybe even arrowroot flour, too. Meaning that I won't even be able to make my occasional pear crisp any more, which is my only treat when everybody else is having cake! I have nothing left to use for a flour substitute.

[Rachel--24]

Thanks Rachel. You know you mentioned about the supplements, and that's interesting because my symptoms get so much worse when I try to add things like Carnation Instant Breakfast or Ensure... they KILL my stomach. I know that I should try to get the vitamins in natural form but it's so hard to stuff the food down there. Now the only thing I'm taking is a childrens multi-vitamin from the health food store that is suppose to be gluten free... who knows... it's like I don't trust anything manufactured now.

When I was real sick and crying in my doctors office about my weight loss and being scared....not knowing what was wrong. I was telling him I was reacting to everything I ate...I thought it was sugar at the time. He just told me to eat lots of bread and ice cream and to get some carnation instant breakfast and Ensure. I followed his advice (not on the bread and ice cream though) and afterwards I wanted to kill him because it was the WORST advice ever. I reacted BADLY to those products. I know the Carnation stuff has MSG in it cuz I checked into it the other day. Never looked at the Ensure though.

I'm hesitant to post this, but well, here goes. The orange urine struck a chord. Have you heard of porphyria?

This is a link to old Brain Talk threads:

Matilda thanks for the link. I did a search and found some good websites....the symptoms dont seem to match though. I dont have problems with sunlight or get blisters from the sun. I actually feel better in the sun. The sites I found described a red or purple urine...mine is more orange. Also when I was on a clean diet for 4 months my urine was totally normal that whole time. It only happens when I poison myself with bad food.

Yea Julie--I know what you mean. I have been sick--although not bedridden--for 20 years. Some periods of time were worse than others. Looking back even to last year at this time--just before I was finally diagnosed, I was so much worse than I am now. I could hardly function, had quit a job I loved, and was so depressed I didn't want to get out of bed. I am having a bit of a time with the food intolerances, but all in all, a good deal of improvement. I'm definately moving in the right direction.

Jersey,

Me too....I know I'm headed in the right direction. Just 13 months ago I was bed-ridden and thought I was dying. After changing my diet it was like a miracle in only one week I went from bed-ridden to painting my garage and doing major yardwork! 5 months later I was back at work working full 40 hour weeks. I've only missed one day in 8 months now (thanks to the Metronidazole ). I'd say this is definate improvement. I just have to work out the rest of the intolerances or whatever is holding me back from being "normal" again. We'll get there....I know it.

[Matilda]

..

[Green12]

Jersey,

Me too....I know I'm headed in the right direction. Just 13 months ago I was bed-ridden and thought I was dying. After changing my diet it was like a miracle in only one week I went from bed-ridden to painting my garage and doing major yardwork! 5 months later I was back at work working full 40 hour weeks. I've only missed one day in 8 months now (thanks to the Metronidazole ). I'd say this is definate improvement. I just have to work out the rest of the intolerances or whatever is holding me back from being "normal" again. We'll get there....I know it.

jersey and Rachel,

I wish figuring out the food intolerances was my only problem. I have debilitating periods that haven't improved with any diet change I have made and I have this dang edema that is like a freak of nature, it's scary and I don't know what it is or what to do for it it and nobody else (even doctors) knows what it is or what to do for it.

I think I need a recall on my body, it's malfunctioned and it need new parts or something

Miamia,

I missed your post yesterday but I just wanted to say hang in there

Floridian,

I am probably not the best one to give advice to you since I never had to deal with the rapid losing weight, or the wasting, but when I read what you have been eating I was thinking maybe those things are hard on your already compromised system.

[dlp252]

Wow, a lot of activity since I was last able to log-on, lol.

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 also have a low body temperature and when I don't feel well it gets even lower. My old allergist explored the thyroid thing, but all my tests came back normal.

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.

I'm thinking Caveman is a good start. I told my GI I planned to slowly eliminate the 8 major allergen foods...but maybe I'm doing it backwards...maybe I should eliminate them all at once then try adding back one at a time after a period of time.

Floridian - I hope I'm not overstepping my "boundaries", but the one thing that struck me as I read some of your posts is that after eating dairy you had major problems...besides the gluten you might want to also elminate that to see if some of your stuff clears up.

[Calicat]

Calicat,

Keep your chin up You will find the answers and better health will come. In the meantime find joy in the little things. Maybe I am wrong in thinking this way, like it's settling for less, but this is the perspective that got me through some tough times. I missed out on so much being ill and my life really has passed me by. I decided to take a little piece of life for myself even though it had to be altered a little bit and on a smaller scale.

Christina,

At my best I am eating watermelon, honeydew, cantaloupe, pears (peeled), peaches (peeled), kiwi, apples (peeled), and mangoes for breakfast (I have yet to try out grapefruit, pineapple, papaya). For lunch I have a taco salad that I make with ground turkey (browned with a little cumin and garlic), leaf lettuce, shredded carrot, a little avocado diced, and olive oil for dressing. Then for dinner I rotate chicken and beef (prepared with different fresh herbs for a variety of flavor) and eat with either asparagus, zucchini, or yellow crookneck squash. I also seem to be able to tolerate spagetti squash, anasazi beans, lentils, red skinned potatoes.

Julie,

Thank you again for your kind words and for what you said about finding the joy in little things...those little things have often been what has kept me going. I'm not in to any new age-y stuff (not that I didn't try it along the way, i confess ) but maybe it even sends a message to the world if we take a piece of life for ourselves, no matter how small. Maybe it lets life know that we're still in the game and fighting to get back into it.

I noticed in your list of foods that you didn't mention strawberries or tomato. Perhaps this is naive, especially considering the prevalance of pesticides and auxigro on this type of produce especially, but i kept thinking that they were okay for me. Now i'm wondering if their natuarally high histamine content plus contamination could be contributing to some of my symptoms. Do you omit them for that reason?

Thanks for the puff-primer too Reading over your post, I think that was generally about how it worked for me, I've just been a puff-ball for so long now that it's hard to remember. Anwyay, your reply gave me hope that it won't take dreadfully long if i'm very strict with my diet. Funny how hearing it from someone who's been there makes you believe in your own experiences more fully, and reminds you that it can and will change. Validation is way under-rated.

Ok then I made tapioca pudding....the first time I used gelatin instead of eggs (this was pre-MSG so I didnt know any better) and I got a reaction.

All that could get worse and worse if I dont change what I eat but I always change it up not really knowing what was bothering me.

For some reason when I get a reaction some of my muscles swell. Its my shoulder muscles, jaw muscles, hand muscles and the little muscles above my eyes....they always get puffy. Anyone else get this?

So whenever this stuff happens to me I get ultra sensitive to everything... Its like I feel "poisoned"....like my body is toxic. I sweat alot at night. I think this is my body overloaded with toxins and thats why I get ultra sensitive. If its MSG its probabaly putting a burden on my liver. I seem to detox through my skin I almost *always* cry when this happens. Its almost like a reflex type thing. My body forces me to cry even if I'm not sad to get rid of this stuff. Its almost like my body produces excess mucus in reaction to the offending food/chemical and then it comes out my eyes, nose and skin (through sweat).

I think it must be MSG. It seems to *really* fit.

I'm feeling really good today and the puffiness is going away so I'm gonna try to keep it this way.

Rachel,

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

About the gelatin thing, I looked back at a food journal that i was keeping a few months ago, and to my surprise I found that I had highlighted anything with gelatin and written a note to myself to avoid it. This was before I knew that gelatin meant MSG. Hmmm. More evidence?

I have a lot of similar symptoms from reactions. My whole body gets so hot that it's like it's on fire, usually at night. Sometimes you can literally feel the heat emanating from my skin and I'll start to cry from the reaction too, but it is often more like a reflex than an emotional thing. I don't have the stickiness or the film in my eyes, but definitely the stiff neck, stomach cramping, achey and very noisy joints, lower back pain, jaw pain, rapid heartbeat, tightness in the chest. 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.

I've noticed that whenever i had something that was high in corn syrup (like sorbet) i have kind of a hyper-salivation thing going on, almost like when you're about to throw up, except i don't. I thought maybe it was a blood sugar thing, but it doesn't seem to happen from sugar, only corn syrup.

My teeth hurt sometimes too, and I'm not sure if the muscles over my eyes swell, but I know sometimes even my eyebrows hurt, so maybe that means there is swelling there. I definitely get it in my shoulders too.

I also tend to change my eating without figuring out the culprit, and then I start to feel better, but never know what specifically was problematic, and so it happens all over again. Very frustrating. I'm going to try to go way back to basics but also avoid msg and corn etc. and stay there for a long time (at least 6 months if i can) only introducing things that I know were okay when i was feeling a bit better last year. Always a new-old plan!

[Green12]

One more thought: Maybe we should start from the basics and then add from there. Look what I found:

Stone ground brown rice flour is the backbone for nutritious gluten-free baking... pies, muffins, bread, pancakes, cookies. Kosher.

This product does not contain the following food groups:

- Gluten

- Sugar

- Soy

- Eggs

- Dairy

- Nuts

- Flour

- Citrus

Ingredients: Whole grain brown rice.

Nutrition Facts:

Serving Size 1/4 cup (40g)

Serving per container: 17

Amount per Serving: Calories 140

Total Fat 1g, Saturated Fat 0g, Trans Fat 0g, Cholesterol 0mg, Sodium 5mg, Total Carbohydrates 21g, Dietary Fiber 1g, Sugars 0g, Protein 3g, vitamin A 0%, vitamin C 0%, calcium 0%, iron 0%

Here's the link: Open Original Shared Link

Floridian,

What you might want to do first to see if you can tolerate brown rice is make up a batch of whole grain brown rice and test a small amount to see if you have any symptoms. This product does sound promising, but if you use it to bake with you will be adding in other ingredientss and you might not be able to tell what you are reacting to. Just a suggestion.

[Calicat]

Miami,

I'm so glad to have been able to maybe make you feel a little less alone. I'm so sorry that you are suffering so much. It sounds like we're in similar places, so maybe what works for one of us will also help the other

Calicat,

I love that!! Your Mom sounds very sweet.

My Mom's very sweet like that too. She's taken care of me alot through all this and she gives me massages most nights while shes watching her soaps. I Love my Mom. (sometimes she reads the posts too)

Rachel,

My mom's taken care of me a lot through this too, and she also gives me neck massages at night, like your mom does. I'm so blessed to have her, and it makes me happy that you've got such a great mom too! Aren't moms the best?

Looking back even to last year at this time--just before I was finally diagnosed, I was so much worse than I am now. I could hardly function, had quit a job I loved, and was so depressed I didn't want to get out of bed. I am having a bit of a time with the food intolerances, but all in all, a good deal of improvement. I'm definately moving in the right direction.

Jersey,

Me too....I know I'm headed in the right direction. Just 13 months ago I was bed-ridden and thought I was dying. After changing my diet it was like a miracle in only one week I went from bed-ridden to painting my garage and doing major yardwork! 5 months later I was back at work working full 40 hour weeks. I've only missed one day in 8 months now (thanks to the Metronidazole ). I'd say this is definate improvement. I just have to work out the rest of the intolerances or whatever is holding me back from being "normal" again. We'll get there....I know it.

Jersey and Rachel,

Reading your posts was so encouraging. I'm really glad to hear that you're both doing so much better than you were. And thanks again for the reminder that it can get better than it is

[Green12]

Julie,

Thank you again for your kind words and for what you said about finding the joy in little things...those little things have often been what has kept me going. I'm not in to any new age-y stuff (not that I didn't try it along the way, i confess ) but maybe it even sends a message to the world if we take a piece of life for ourselves, no matter how small. Maybe it lets life know that we're still in the game and fighting to get back into it.

I noticed in your list of foods that you didn't mention strawberries or tomato. Perhaps this is naive, especially considering the prevalance of pesticides and auxigro on this type of produce especially, but i kept thinking that they were okay for me. Now i'm wondering if their natuarally high histamine content plus contamination could be contributing to some of my symptoms. Do you omit them for that reason?

Thanks for the puff-primer too Reading over your post, I think that was generally about how it worked for me, I've just been a puff-ball for so long now that it's hard to remember. Anwyay, your reply gave me hope that it won't take dreadfully long if i'm very strict with my diet. Funny how hearing it from someone who's been there makes you believe in your own experiences more fully, and reminds you that it can and will change. Validation is way under-rated.

Hi Calicat!

You are always saying such nice things

About the strawberries and tomatoes, I just find they don't agree with me when I eat them. I don't have any major symptoms with them, but I just don't feel right- they are questionable for me. If that makes sense? So I try not to eat them very often. I will have tomato products once in a great while, like in a light rotation. I find when my reflux is in full swing tomato products are a big trigger for me so yet another reason for me to avoid them. Also I guess there is a little to it that strawberries are known to be the heaviest sprayed crop.

If you are up to it, maybe you could do a rotation type trial and spread out all the different fruits and vegetables, grains, etc. over a week and see if you react to any of them on a more isolated basis. Of course, maybe you have already tried this? If so, just ignore me. In general I try not to mix too many foods together at a time, it's easier that way to pinpoint the source a possible irritation.

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

[dlp252]

Okay, so every time I read your posts I remember more symptoms, lol.

My teeth also hurt from time to time. They are not sensitive to hot or cold, but sometimes to air and touch, which is just weird! And, it's a painful pain, lol.

Then, I also have the really stiff neck, especially on the left side.

When I was seeing my chiropractor regularly (about every 3 weeks), she ALWAYS said the lymp nodes in my neck were larger than normal.

[Green12]

Okay, so every time I read your posts I remember more symptoms, lol.

My teeth also hurt from time to time. They are not sensitive to hot or cold, but sometimes to air and touch, which is just weird! And, it's a painful pain, lol.

Then, I also have the really stiff neck, especially on the left side.

When I was seeing my chiropractor regularly (about every 3 weeks), she ALWAYS said the lymp nodes in my neck were larger than normal.

dlp, I do that too!! When you have such a myriad of symptoms it's difficult to remember every single one right on the spot. It's when I read everyone else's posts that I remember oh yeah, I get that too!

I also get the pain in the teeth and my lymph glands in my throat swell when I have a reaction. Also under the arms and behind the knees. And night sweats, I don't know if I mentioned that before. I always thought it was blood sugar too but my tests always come out normal.

[dlp252]

I also get the pain in the teeth and my lymph glands in my throat swell when I have a reaction. Also under the arms and behind the knees. And night sweats, I don't know if I mentioned that before. I always thought it was blood sugar too but my tests always come out normal.

Yep, when I was seeing her I wasn't gluten or casein-free yet. I also get night sweats of a sort, I wake up so hot that I have to kick the blankets off, even in winter...my doctor asked if they were hot flashes and I said I didn't think so because most people describe them as coming from inside...these don't really...but I just am so hot I can't stand it.

I haven't had my blood sugar tested yet, but I'm thinking I will. I just bought Hypoglycemia for Dummies (LOL!) and from what I'm reading, it does sound a lot like my lingering proglems...that and the fact that I have an incredible hunger that doesn't seem to be cured by eating (and I'm sure I don't have a tape worm unless I got it in the last month or so because I was tested for parasites in February/March--had three different types of stool tests for that one, lol, cards, vials and a nice little bucket ).

[Calicat]

My core temperature completely drops out to where I am bone cold and my toenails, fingernails, and lips are blue, I feel like ice.

Of course there is the swelling, but I don't seem to lose it as quickly as you and of course I get C so I just gain weight instead of losing weight at these times.

I am convinced of this now. I think the stuff is way more processed too and it does me nothing but harm.

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

jersey, I'm always hesitant to disclose how many years it has been for me. I have really struggled with the reality of that, it's nearly half my life. I don't want to trouble anyone going through something similar, that this is how it will be for them.

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.

Maybe leaky gut does not always heal--and we just have to eat this way forever. I was reading about lectins the other day, and, like processed grains, those have not been in our diets for a long time (relatively speaking) either. I'm thinking those of us with this type of trouble have systems that, like Julie said, have not evolved.

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.

AND to top it off, there was a rumor at my job (which I don't work there anymore) that I was anorexic and I also heard that some were saying I was a drug user.... I don't know why I had to bring that up because since I don't work there any more why should I care but I think feeling so down I think of all the crummy things.

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