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 ).

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.

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.

Well, I haven't been able to wear earrings for a while now. It used to be that I could wear any type of earring, even cheap fake stuff...then it got so that I could only wear Sterling and 14 kt gold...then it was only 14kt gold. Now I can't seem to wear any of it. I haven't really tried since I went gluten-free (maybe I'll try this week), so I can't really say if it will get better.

I can still wear bracelets without much problem, but necklaces bother me. I don't get rashes or discoloration from them though, they just bother me until I finally have to take it off. Rings are starting to do the same thing...I find that I am increasingly uncomfortable with them on although they don't leave marks either, so maybe that's just a mental thing, lol.

Many, many, many years ago, someone gave me a pair of platinum diamond earrings...my ears started oozing right away...so there was always something with platinum, but I could wear the other stuff.

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.

I like that!

More reassurance. I had an endoscopy+colonoscopy at the beginning of April and a week later had another endoscopy. Both times I was asleep during the whole thing. On the second endoscopy, the doctor showed me the tube before they sedated me...it's not that big, but a bit bigger than a drinking straw. Both times I had the IV inserted in the prep area before actually being wheeled into the procedure room. I was completely asleep before they inserted the tube. Both times I got lovely pictures of my insides, lol. After the first procedure it took me a while to come out of the sedation...my mother tells me I asked the nurse the same question 3 times, falling asleep again after each time. I never did remember what the darned answer to the question was (or even the question). I came out much faster after the second procedure...my mom tells me my eyes were open when they wheeled me into the room...although I barely remember. I felt fine after both times, the first time I had a very slight sore throat, nothing after the second time.

My GP said basicly the same thing--she said that that symptom by itself (no other heart symptoms or dizziness) is nothing to worry about. I still think that it means something, especially since it started after the gluten-free diet--but my GP dosen't even pretend to know anything about Celiac. Also, 2 1/2 years ago, I had an echocardiogram and spent 24 hours on a holter monitor--those came out normal. Of course, I was not having the palps. then

See, that's what gets me because I was extremely dizzy at the time, and that's basically what she said, that if the palps didn't happen when the monitor was on it wouldn't show anything.

More, lol:

The palps, so seem to be better. They're not happening as much. The things I've done recently that might affect it are: SCD diet for a short time, I've cut out major sources of hidden corn a few weeks back and recently more mindful of MSG as well, and I'm taking Prilosec OTC until July because my GI wants to see if the acid is what caused my cells to look different in the biopsy (he'll do another biopsy in July, so I'm afraid NOT to take the Prilosec).

I've had a couple of instances where it was very fast--and those were when I first got into bed, too. The usual palpitations that I get during the day are sort of like I'm anxious--but I'm not! I don't think. Sometimes, I can stop it with a deep breath--most times, not. Do you have any idea what could trigger these things?

No. I did try to ask my doctor way back at the end of January when it was really bad...she was basically a waste of an office visit. She didn't even look at me and basically said it would be a waste of time to put a monitor on me. I was wondering for a little while if it might be related to the GERD somehow, but I don't know. It was scarey when it was happening almost every night...at the same time I was having actual chest pain...still my doctor wouldn't even look at me. I no longer see her.

May I but in for a moment and ask a potentially stupid question since I'm not sure I really even have a blood sugar issue yet?

Here goes...does it matter in what order you eat your carbs. For instance, I kind of grew up in the habit of having something sweet after my meals. FOrtunately for me it doesn't matter if it's fruit or a danish, but I was wondering if eating fruit last would cause problems.

The reason I'm asking is that for the last couple of days I've been mindful of trying to eat balanced meals and snacks but I've been ending the meal with a little fruit (main source of carbs though although sometimes a starchy veggie too), but I'm still ravenously hungry just a short time after I eat. I've also been trying to get the ratios of carbs/protein/fat a little better. My fat ratio is usually the biggest, with the carbs and protein being fairly close to one another.

That's interesting about the heartbeat--I get palpitations, since I've been off gluten. Not a rapid heartbeat, but I'm aware of my heart beating. I would love to figure out what triggers it.

Mine started since going gluten-free as well, only I'd definitely say it was rapid, and it's mostly at night when I lay down for bed. It has happened a few times during the day as well--just happened as I started to type this, lol. It literally feels like my heart is in my throat and is beating for it's life to get out, lol. Sometimes it just feels like it's flip flopping...maybe that's gas.

Floridian - you're welcome. I truly believe we ARE going to get better. I think for all of us there's that one little key piece we're missing, but eventually we'll find it. I just wish it weren't so darned time consumming trying to figure it out.

Rachel - nope haven't heard yet. Dr. R said he'd call when he got the results so I hate to bug them, but I may give them a call this week if I haven't heard anything by Wednesday (the 4 week mark). It's driving me absolutely crazy.

Key and Floridian - just wanted to say how sorry I am that you are both having a rough time.

I'm sorry that any of us is going through a rough time!

Rachel - that test looks good. If I ever get around to actually going into the clinic, I might consider that one.

Julie - thanks...the stress has been really tough. They are phasing out my job and on a frequent basis I am being as to do research on equipment or other things that would make it easier for them to do that. The other thing is the pre-cancer thing--I'm still waiting to hear the results of biopsies sent to Stanford about 3.5 weeks ago.

I think I've had blood sugar issues for a while, which is one of the reasons I tried the lower carb diet in the first place. I really do think it helped balance everything out for me (I never went NO carb--always had plenty of veggies and some fruits). I do agree that the processed foods are just evil. I was even having a problem with things like potatoes though, although I CAN eat them in very small amounts. I can eat other starchy veggies though as long as I don't eat googobs of them.

miamia - I spend a lot of time uncomfortable! I'm so tired of trying to figure everything out. I know that I must sound like a neurotic hypochondriac sometimes, but fortunately not one of my friends or family has said anything that wasn't supportive. My symptoms have kept me from doing some of the social activiites I like to do...recently I cancelled a weekend retreat and could not participate in an Easter musical...the dizziness and stomach pain were just too much. I've been unable to sing (I sing in a church choir and in a small group) on a few ocassions. I'm not as social now because I'm just too tired most of the time--it's really all I can do to do a full day of work, get a quick work out in and collapse. I missed a lot of work in the "beginning" of all of this. I had to cancel my vacation plans in October because I was just too sick. I had strep throat, which turned into an ear infection which didn't clear up and then a sinus infection...that was what finally led me to the gluten/casein thing.

My Dr called friday and said my stool tests came back positive for blood in stools, he wants me to come in for a blood test to see how anemic I am...thats it! said it could be ulcer, cancer etc..

shouldn't he be doing more? I'm stressed out over this!

thanks

Try not to get too stressed. My doctor found blood in my stool (by the exam/card) during my annual exam in February (I'd not seen any sign of it). Based on that and the symptoms I'd been having she suggested a colonoscopy. So I made an appointment with a GI, who after listening to my symptoms and seeing the results of my exam, suggested we also do an endoscopy. I never did get a definitive reason for the blood, but the colonoscopy showed no problems with my colon at all. The endoscope did show some damage/blood in my esophagus, but the doctor wasn't concerned with that either. We still don't know exactly what caused the blood, but it could have been just a temporary thing or it could have been from the esophagus. I did the three card test too and I think that came back negative.

Why??? Are you serious?

Matilda

Unfortunately, yes I'm serious. I'm not normally too much of an emotional eater, but in the last month or so I've been stress eating and can't seem to get a hold of myself. This was the first time I tried any gluten since I went gluten-free at the beginning of November. I was having a particularly bad day and the darned things were sitting in front of me while I heated up my lunch. I think I really just wanted to see what my reaction would be and it kind of fit a need I had at that particular moment. I've definitely learned that although my reaction isn't immediate it is strong enough to take it seriously from now on. My whole system has been off since then...much more congested, diarrhea, stomach pains.

As far as Krispy Creme Donuts go - I'm trying hard to keep my gob shut.

You can always tell me what you think, lol. It was a really dumb thing to do!

Um, I have to make a confession. I have eaten gluten for the last 6 days.

I am going to have to find a way to eat and stick with it, I think it has to be for good. If I eat really well just meat, fruit, vegetables, I am fine, it's when I stray and start experimenting with different foods and add more things in that gets me in trouble.

Does anyone else get really sick when they eat all the gluten-free foods??

You too huh. The only times in the last 4-5 years I've felt well and relatively free of symptoms were when I was eating a really clean diet, with no processed foods of any kind. When I started low carb about 5 years ago, I started out clean, but as soon as I added some of the low carb processed foods, I got sick. I went clean again and it all cleared up (some of those foods I cut out had gluten and casein in them too). The diet was very strict to me at that time so after 3 months I added back 100% whole wheat tortillas (low carb), sure enough I got sick. My allergist and I finally decided I should try an anti-candida, anti-yeast low carb rotation diet. I followed that for 6 months and wasn't sick at all. Sure enough I started adding back a few things and got sick. That's what finally made it click that it might be gluten or some other intolerance. My symtoms improved from going gluten free and improved more after cutting out casein a month later after my Enterolab results came back...but there are still nagging things like dizziness and lightheadedness, shakiness, nausea, diarrhea, GERD, and most recently a horrible unrelenting hunger. All of these nagging symptoms have gotten worse when I started eating the gluten-free foods, especially sweets. That is what is making me think I may have a blood sugar issue in addition to all the other intolerances.

Do any of you have joint problems (pain, stiffness, cracking&popping sounds) that flare up when you have a bad reaction? I've been having a hard time with that lately, knees and ankles/heels specifically, and I've got a strong suspicion that it's to do with an allergy or intolerance. Just wondering if anyone else had experienced something similar.

Btw, I have the same imprint thing...sheets, seams, everything seems to leave a mark when I'm all puffy, although never anything as cool as a flower. Once I had a letter though from something embroidered (still not nearly as impressive!)

Yep, I had lots of joint pain before I went gluten/casein free--it went away almost overnight once starting the diet. Mine was mostly in my knees and hips. I still have some stiffness and now that I think about it, not as much popping as I used to. So, I think mine is directly related to inflammation and that is probably directly related to all the intolerances creating inflammation. I had pain in my knees yesterday...guess what I did on Thursday...I had half a Krispy Creme donut...double whammy with the gluten and the casein (it was creme filled). I think that just cemented it for me. Ocassionally I do still feel some joint pain...I figure it must be when I get overloaded on something...corn, msg, who knows.

I also get the imprint thing. My sock imprint stays forever, lol. I also get it from seams...can't think if I've ever had a flower though. lol

Julie, by-the-way, thanks for the tips on freezing and cooking...I think you and I must have posted around the same time and I just saw your post now, lol.

On the die-off thing, when I first started the Atkins diet, then later the anti-candida diet, I had die-off both times...I think they both lasted around 1 week. General feeling of achiness, confusion, congestion, blah, blah. I agree it shouldn't last months and definitely not years. I DID get better on both of those diets as long as I stuck to the whole natural foods, and each time as soon as I started adding some of the convenience and "junk" stuff, I felt awful.

Thanks for posting the links to the MSG boards. I'm still not convinced I have a problem with that, but I think I'll read some over there for some info. Whether I have a problem with it or not I sure don't want to eat it! I've been peeling all my veggies and fruits so I'm hoping the amount of MSG would be minimal. It just makes me so mad that any of us has to worry about that.

What do you all put on your salads? I guess I'll try olive oil and lemon juice.

Jenvan beat me to the Tropical Source chocolate bars...they are delicious--I buy mine at Whole Foods.

UGH I am in so much pain this AM. work up this way. Dunno what I did wrong. through out my stomache section. Must be bloated too cause pants dont fit. Major meetings not only at work today, but at home have to meet with the city about my son's specail turtors cant be down today!

It could also be the restaurant meal you ate yesterday...I've been reacting more slowly these days to stuff like that. I ate a half a Krispy Creme donut yesterday (don't ask--I just don't know what came over me--it was the first time I've done something like that since October), and I'm just now starting to feel the effects...big bloated tummy, gas, lightheadeded (although having that a lot lately so don't think it's related), pain in my abdomen.

I live alone too and it took me a long time to figure out how to grocery shop without eventually just throwing away lots of wasted produce. It works for me now though. I go to the store more than once a week, and just buy really small amounts of things. I'll buy maybe two banannas (not quite ripened), two apples, one zucchini, one avocado (not yet ripened). The gist is I only buy one or two of each thing, I get fruits that aren't ripe yet and I also have a juicer, so that helps too. I guess you can also chop your fresh stuff up and freeze it yourself. That might be another solution.

Thanks for the reply. Yep, I think the cutting and freezing is the way to go. I generally don't have a problem with fresh fruits as much as the veggies, so cutting and freezing those when I get home from the store would probably work well. I do that with all my meats...I buy in bulk and just divide and freeze them in individual portions, so I don't know why it's so hard with the veggies, lol. The other thing that works against me is that I am basically lazy. I work hard and work out, but once those two things are over with I am happy to be a slug on the couch, lol. Sunday afternoons would be a good time to do the cutting freezing thing. I'm going to try this weekend...I go shopping tomorrow morning, so I'll see what I can come up with.

Thanks for posting that list. I've been rationalizing stuff I've been eating and I think I really just have to get myself over it and do this. My current thinking is that I have some definite problem with processed foods, so cutting them out would take care of anything like this. My biggest problem is convenience. I don't like to cook and I live alone so buying fresh usually results in a lot of waste for me...somehow I have to get over all that and maybe cook and freeze everything myself in a day or two. The other thing I'm thinking is that I may have some kind of blood sugar issue which would probably also be helped by cutting out processed foods, lol. I don't eat tons of the processed "junk" or replacement foods, but I do eat a lot of convenience type things like frozen veggies and fruits and Lara Bars etc, and I do buy big bags of frozen chicken parts. The chicken I can easily remedy, but gosh I'm not sure how I'm going to handle the veggies, lol.

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

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

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

Thanks all- I'm tired and sore today but feeling much better than i expected....knock on wood. Hugs, B

Wow, great news...the soreness hopefully won't last long!

The reset button would come in handy for a lot of people, lol.

I am on my first day of the SCD diet and I am starving to death, I can't do this. I can't not eat all the food..... I could do gluten free fine. My girls have been gluten free long enough that I can eat whatever I want gluten free, but I can't do the SCD diet, I don't even know what I can eat save fresh veggie, fresh fruit, and meat.

I ate some grapes and carrot sticks for breakfast, and I am so hungry. I am sitting here in tears, I can't eat anything in my kitchen, not even the gluten free stuff, because it's got rice and potatoes, and corn, and

help. I seriously am crying over this, what's wrong with me?

I just want a baked potato.....

The SCD is definitely strict and hard, but you can eat more than you did. Carrots and grapes isn't very much and it's basically all sugar...maybe add some protein. You can have any protein as long as it isn't "processed" or canned, but any fresh meat is okay. Your veggies and fruit should be peeled and cooked.

I'll be back in a few minutes with some links for you.

Here is a link that actually has a chart of foods and the different stages to add them.

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