Anonymousgurl

Sushi Snob is going speak up now. If they are using chicken stock, or anything other than rice vinegar (plain, no flavors) then its not sushi.

Sushi rice made with chicken stock is absurd. I have had restaurant get confused and say "you can't have this, it has vinegar", then they show me the vinegar, and its just rice. I eat alot of sushi, but I am lucky to be located on the west coast, people are really serious about sushi here.

Someone at a support group meeting swore they put soy sauce on the seaweed they use to make sushi, and though I've asked, this has never been the case. ( and as someone who makes sushi at home, this wouldn't work very well, so never made sense to me anyway). I am leery of cheap sushi, and pre-made sushi, as who knows what they put in it, but straight up nigiri should never be a problem. I have stopped eating wasabi that I can't verify though, as many wasabi substitutes have wheat and real wasabi is uber expensive and not that easy to find. I have had restaurants swear their wasabi was real, only to find it comes from a tube with dye in it.

Stay away from the "spicy" things, and the California Rolls, unless they use real crab. Unagi sadly is off the list as well, because of the sauce.

Kanpai!

Elonwy

I used to consider myself a "sushi snob" too I'm from California too, bay area...and sushi is HUGE here. I think it's a "California" thing. LoL. But anyways...I just stick to the vegetarian rolls (nothing fried of course) because of my intense food allergies. And I knew for sure that they don't add chicken stock to the rice...I just wasn't sure about the vinager. But that's good to hear. Gosh, L.A. must have some pretty cool sushi restaraunts...I heard that there were even vegetarian ones over there. I believe there's one of those in San Francisco but I haven't been yet. Very cool.

Another Californian! I'm also from northern California.

Yay that's awesome! I'm from the bay area

Well, I went ahead and had the sushi! No reaction....yet. But you guys have really made me think!!! My mom actually cooks rice in chicken stock all the time and I've never thought anything of it....perhaps it has gluten! I'm going to go check RIGHT NOW and report back. haha. thanks everyone for all the info!

I AM, I AM!!! After feeling near death the last two weeks, I now feel almost normal, which is still not great, but at least it's normal, lol.

Oddly enough, I am. Christmas Eve I felt so bad that during Mass (I play flute at Mass), I had to go sit down for a while and let the other flute player stand alone (normally we cover two different Masses). It was just a couple days ago that I started having some energy for the first time since last JULY!! I don't know if it's here to stay, but I'm taking advantage of it while I can.

Yay, I'm glad to hear that you guys are feeling better too Yea it's funny, I was having a HORRIBLE week right after christmas...but then January 1st rolled around along with a brand new year, and I've been actually feeling okay So let's take this as a good sign for us! The end of a not-so-great year, and the beginning of one that's full of HEALTH and happiness

Fruit and Candida...I crave fruit too, like crazy. And I can't stop eating it (well, for a couple of reasons...the calories, the fiber...and the crave for it). But I know it's doing damage. Gosh...2 apples, 2 oranges and 1 pear a day...not to mention other sugars here and there (some in the occasional soy milk, or the fruit juice sweetened corn flakes, or the canned tomatoes i use with chicken). Wow now that i think about it...my candida problem is probably going to be IMPOSSIBLE to fix!

Hey everyone...how is everyone feeling? I hope that everyone is having a good couple of days of the new year! Anyone feeling BETTER? I felt pretty good on the 1st which I took as a good sign. So hopefully you all had a good day too.

I haven't been here for a little while and i sure did miss a TON and haven't read all of it yet...but I skimmed this page and saw a whole bunch of "I HATE CANDIDA" LoL. Well I do too. Mine just keeps getting worse and worse because since I'm trying to gain weight, everyday there ends up being WAY too much sugar in my diet. It's all natural sugars, but I'm sure it doesn't make that big of a difference. Candida...what an ugly monster.

Anyways...did I miss anything good? LoL. Hope you all are well.

Wow thank you so much you guys! I totally forgot about the vinager that they usually add to sushi rice! Vinager has gluten sometimes...right?

I have so many darn food allergies that I can't just have a normal dinner with my family...BUT ANYWAYS...who wants to hear that? haha...my question is...does sushi rice usually contain gluten? I just wanted to get a cucumber roll at the sushi restaraunt but I wanted to make sure it would be safe first.

Google Dr. Broda Barnes and you will find a lot of information on thyroid and temperatures.

Your waking temp. should be at least 97.6 ... Dr. Barnes says 97.8, but in 7 years of teaching natural family planning, I found those with a temp. over 97.6 usually felt good, but those who are lower, felt bad.

I started drinking saltwater three times per day for my Lyme Disease, and my temps have gone up enough to stop taking thyroid! Do you use salt? Another thing I found in teaching NFP is that many people with low temps. don't use much salt. It's a fallacy that salt is bad for you .... it's actually a macronutrient and before wars were fought over oil, they were fought over SALT!!! I take 3/4 tsp. in 8 oz. of water three times per day.

What is important is that it's NOT regular table salt or even regular "table" sea salt. It needs to be sea salt with all the nutrients in tact. Regular table salt IS bad for you.

Wow I didn't know salt could help my body temperature! I think I'll try adding salt to things...but do you find that it bloats you? Because bloating is already a problem for me and I don't know if salt would make it worse.

Happy New Year to everyone!!!

I'm on day 6 of my Cats Claw and havent had a Herx or anything.

I went up to 3 drops yesterday (even though I'm not suppossed to) ...So far nothing...I actually feel pretty good.

I know I was scared of herxing but now I'm wondering why I'm not.

I'm wondering what will happen in a couple weeks when I have my usual flare up of symptoms?? Might it be worse this time??

Well I'm glad that you're feeling good Rachel! I've been on Artemisinin for quite a while now and I just started Catnip yesterday (I've also been on Grapefruit seed extract for a while) and I haven't "herxed" yet. How will I know when I have? Do you think this bout of constipation counts? LoL.

Wow! We're from the same area! I'm from the bay area and was born in San Fran too I believe I might have gotten mine from Tahoe too, or perhaps from Santa Cruz.

And I know exactly how you feel when you say you don't want to explain everything to people. That's how I am with my friends. It's like I know they'll think I'm crazy once I start explaining...and it takes so much energy too...so it's just not worth it. I feel like they judge me when I try to explain because it's not a normal "illness" and it's not their everyday way of life, so i feel like they think I'm just a crazy liar. Or just anorexic and making up excuses for things. Then I guess I just ended up pushing my friends away, and now im on my winter break and feel like a lonely loooooser.

AND OMG KAISER SUCKS...grrrrrrrrr.....they messed me up so badly...I wont even try to EXPLAIN what they did to me but I dislike them with intensity. "No we won't test you for parasites because you haven't been out of the country. It's all in your head". GRRRRRRRRRRR.

oh I was going to add this to my post up there^^^^^^^^^^^^^^^ and forgot.

I noticed that a lot of people here are from northern California...so am I!!! Lyme disease is having a field day in a lot of cities up here....especially Santa Cruz.

Rachel-

Wow, you are an amazing researcher. LoL. Now you have convinced me that I have a thyroid issue! I mean, it makes perfect sense...plus I think that everytime I get checked through BioSET my thyroid is off. So what did you do through that period of time when your bowels were slow? Did they improve when you switched thyroid medication?

northern california, very west coast.

Yay! Finally....some TEENS. I was feeling pretty lonely! LoL. Well, no joke...it does get kinda lonely sometimes. but ANYWAY...Im from California too How are you all doing?

Hi Peacenlove!

I'm the other person doing BioSET treatments right now. I'm cruising through the treatments pretty quickly. I've had about 6 treatments, and we're working on gluten right now! I only had two treatments for phenols and other stuff before going on to foods. You are right that the food clearing is the fun part! Unfortunately, I don't get a print out from my acupuncturist, but he is writing down what he is clearing. As far as I know, I don't have Lyme disease, but if I get resensitized to any foods, I'll start looking for other things going on. I worked on my bacterial overgrowth in my gut before doing BioSET.

My acu (the BioSET guy) is of the "take it slow" attitude also. He says the "BioSET people" say you can have a food as soon as you are cleared for it, but he makes me wait till the next session to confirm that it is clear. I was on a pretty fast schedule for the BioSET, but I decided to slow down. I don't want to reintroduce foods too quickly. I still can't believe that I can eat walnuts, pecans, soy, corn, and quinoa now without problems. I haven't gone back to eating these foods in the quantities I did before since I'm used to not eating them. These are the things I discovered I did miss: soy sauce - there really is no substitute when having sushi; corn chips - I did not miss corn tortillas, but a good corn chip with guacamole beats rice crackers any day! I used to eat a ton of nuts, but I'm used to not eating them now. Oh, and I can "officially" have eggs now. I guess I used to be sensitive to them, but refused to give them up because I had no noticable reaction to them. I had to give them up for a week while getting cleared for them. That was hard enough. Gluten and dairy are the next two big ones to clear. My acu thinks that dairy might be the core allergy for me.

I'm still feeling exhausted, but that might be due to other things; holiday stress; the fact that we had 2 1/2 feet of snow last week and I had to shovel it all from the driveway; or hormones out of whack. I just got back my female hormone panel. Well, my acu got it. He called to talk to me about it last night and said that my hormones are off, but that it's fixable. I knew they were off. He said that I'm ovulating, but that my peaks are off. He said it could be treated nutritionally, with herbs, or with hormones. I don't want to take any hormones because of my propensity towards uterine fibroids. One surgery this year to remove them is enough for me!!

Hi Diamond!

It's nice to know someone else who's going through bioSET. I've had around...hmm...maybe 25 treatments? maybe a little more? And it definitely does help with foods, but because I have other infections going on I always get re-sensitized. So I have the same problem as you do....I'm scared to add foods too But you know, if you don't have any other issues like parasites or infections, you really should be fine. Did they tell you though about things that can re-sensitize you? If you catch a cold, it can throw things off...or if you have a tramatic (emotional) experience, or even if you fly on an airplane (I have no idea why!). But yea...keep me updated on how things are going! I love to hear how it works for other people.

So I got pretty behind on the posts but I think someone brought up the thyroid information that I was presented with in another board. It really made me think. My conventional doctor insists that my thyroid is fine, but my homeopathic doctor isn't sure and my BioSET lady always finds a problem with my thyroid through BioSET checks. My body temperature is EXTREMELY low too..my nose runs, my hands are ice, and I get so cold that my muscles start spazzing. I always have HORRIBLE constipation. Rachel, I have the opposite problem as you do...tests have shown that my intestines don't want to move. It could be a problem with the nerves or something...but for some reason, I just have REAAAALLLLY "slow motility". The past couple of days it's been horrible, which I dont know why because it *should* be better now that im gluten free? I don't know. Usually my magnesium gets me to go (if i dont take it, my intestines dont move) but for the first time ever, it doesnt seem to be working as well. im really scared, starting to panic.

But i hope everyone else is doing well!

I have not been diagnosed, but I've been gluten free since May and I'm planning on doing a gluten challenge

I'm 18. I was going to do the poll, but there is no slot for 18 year olds....should I say I'm under 18 or that I'm 19?

age 16

14 years gluten-free (15 in feb.)

Age 19. Diagnosed in Jan of 2004

i am 13 and have been gluten free for 4 years. its the hardest thing i have EVER done but its better that getting sick all the time.i have had symptoms all my life.

I was going to ask the same question because I hadn't found anyone in my age range yet I'm 17 and I haven't been officially diagnosed, but I have a definite sensitivity (to practically all foods really...LoL..) and have been gluten free for just a month.

I'd love to chat with all of you that I quoted up there ^^^^ about your experiences and what your situations are...it's hard to be a teen/young adult and have to deal with this kind of stuff

Have you ever been tested for low thyroid? That can cause your whole system to slow down, including your intestines. And even if your blood tests appear to show that your thyroid function is normal, temperature is a much better indicator. If your body temperature is consistently below normal, you have a problem with your thyroid.

Funny that you say that about body temperature...My hands are always ice cold and I can never get warm. My poor family has to walk around the house sweating because I turn the heat up so high. But I have been tested for low thyroid and I dont think they found my thyroid to be a problem....is there anything I can do about it?

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I am able to handle certain fats I try to make it a point of getting these ones in where ever I can- olive oil, salmon, some seeds( pumpkin, sunflower) With the seeds I roast them myself to clean bacteria and then make them with vegees and oil into a paste (If there not pureed though they are to hard to digest- same with alot of vegees) . I can;t do beef either and most meats if not all I can;t do. Certain fishes I can handle and certain amounts of chicken( which is good becasue for a while I coulden't do this) I eat 3 main meals and 2- 3 small meals. Everything needs to be cooked prety much- especially veggees raw for me is a big no no. Even though I have candida issues I eat some carbs becasue I am so under weight and me and my doc both agree that anything I can get in me that does not cause a really obvious reaction I have to eat. Most of my foods I cannot take with me so yes I eat mostly inside. I never eat out either. I totally get what you mean about your schedule saving you but also drives you crazy. I hate that eating runs my life but at least by having this schedule I am controlling something.

What do you eat?

What is your schedule like?

Miamia

It's great that you can do fats! It sounds like you have a routine down that's getting you all the nutrients you need. That's awesome (even though it's torture...). I eat about 8 times a day, spaced out through the day but then really close together during the night to fit it all in, which makes things extremely uncomfortable. I eat hot brown rice cereal, TONS of fruit, tons of beans, tons of vegetables, tons of chicken, a sweet potato, millet bread, *sometimes* yogurt if i've had BioSET recently to clear it, and that's about it....oh, sometimes I can tolerate soy products as well, but the wheat free Tamari didn't go over so well last night. I know all those carbs are TERRIBLE for my candida, but I don't know what else to do. It's like I'm stuck between a rock and a hard place. Fats or carbs? Both bother me, so I chose carbs because to be honest...I think I'm afraid of fats. I'm scared of having a reaction to them, but I'm also scared if that's all i eat...what kind of weight I might put on with them. I'm scared I'll pack all the weight onto my stomach.

So everyone else who has lyme here...you all have weight troubles too, right? For some reason i CANT gain weight in my arms and legs...especially not my arms. Does anyone else have this problem? Do you think it's the babesia?

I was also wondering if anyone has come across any information about what NOT eating fats can do to your body. Since you're all expert researchers (lol), maybe you've seen some info on it? I've only found a tiny bit about what happens when you eat the good fats...but I haven't found much useful info. I haven't gotten the whole researching thing down yet...

Yes I am on a very restricted diet but at this point it does not resemble anything like what most people recommend. After a zillion elimination and so on I have found what sits best(not great) but best and figured out meals around those things. It is definitly unique to me. I can't do brown rice really and I can't do fruit- especially with the candida issue- I can't do sweet potato- all the foods they say are least allergen causing I can't do so I have the miamia safe foods instead.

I feel often like I eat all day- and am never hungry- eating is very painful for me most of the time. I have actually been "hungry" like 2 times in te past three months. Its awful becasue I love food. I don't care that I am not hungry I still make sure I enjoy my food as much as I can and take time preparing it so at least it tastes good. I haev always loved food so the loss of appetite is horrible for me. I feel often like my days just revolve around eating - I am on a very strict schedule with food and it makes it so having a real life is nearly impossible the horrible thing is I don't even gain weight but at least I have not lost recently abn==nd I think it is what has kept all my prgans and general health in tact without being reliant on supplements.

I'm sorry you can realte to this but I am also happy I am not alone especially with the no appetite issue

Miamia

Miamia, I wanted to cry when I read this...because It makes me both really happy and really really sad. On one hand, I now know that im not the ONLY weirdo in the world who has to eat like this and live life like this (and I meant that in the best way! haha) but on the other hand, I feel really sad that you have to go through what I do everyday. You explained it perfectly. My life is consumed by eating. I'm on a strict schedule and diet too. And since everything is cooked or can't really be taken with me, I don't get out much and i NEVER eat out. I also have a strange diet! For example, I have uncommon sensitivities to beef and to ALL oils...so since I can't eat oils, everything I eat is under 1 gram of fat...which I don't think is too good for my organs. My heart especially. It sounds like your eating patterns and strategies are a lot like mine. What's your schedule, what do you usually eat? My schedule saves me, but at the same time drives me crazy. Some days I wish I could throw it out the window and let myself get hungry, but I know if I did that I'd end up panicking and practically binging later on to make up for it.

Anyone else want to share their diets/schedules? haha...

This may sound really simplistic. I try to completely distract myself with being consumed with my health or with food.

What I've learned to do is get crazy busy with something. Whether it's my dogs, or taking up a new hobby - like building a dollhouse for my kids with shingles and paints and wallpaper, painting a room or deciding I'm going to totally get into the Harry Potter books. I try to diffuse my stress and often my frustration with having Celiac by focusing on other things entirely...

Just thought I'd throw it out there...all that kind of stuff can really combat loneliness...

It's so funny that you say that because I feel like I always HAVE to be busy. If I sit down and surf the internet for a while, or find myself with nothing to do, I become consumed by anxiety and a horrible lonely feeling. I feel like I always have to be moving or else I feel like a "loser" stuck at home with nothing to do. I know being "busy" all the time isn't good when I have chronic fatigue, but even though i'm exhausted i still feel better on the go (more emotionally than physically I guess).

Hello all and welcome peacenlove

So, as someone facing serious detox over the next few weeks, for those of you who eat very few foods, how do you survive on such a restricted diet? What do you eat for breakfast? My diet is basically going to start with sweet potatoes, parsnips and squash for carbs, turkey, white fish & lamb, and a v few veggies and couple of fruits. Breakfast is a big problem for me as it's first thing in the am that I feel sickest, but also the time when I need most food. So I'm going to have to be prepared else I'll fall at the first hurdle. Any brain waves for brekkie will be v welcome

Miamia- yay, someone who knows how I feel! I eat about every two hours and im NEVER hungry...it does become painful when I can't get it all out. How often do you eat, is your diet restricted?

Rachel- I think you're right, the bloating is probably food and cadida related. I'm on Grapefruit Seed Extract (GSE) right now for the candida but that's about it...later on I go on Oil or Oregano, I dont think if that will help too...and perhaps the catnip will? im not sure. But do you have any candida advice?

cozsooze, thanks for the welcome Gosh, you are speaking to the QUEEN of restricted diet. Haha, there's only about a handful of foods that I can eat, which is torture when you're on a 2500 weight gain diet. It's awfully hard to figure out. BUT I got SOOOOO excited when you mentioned sweet potatoes because that's a HUGGGGGGGGGEEE part of my diet! Plain baked sweet potatoes are my favorite food in the entire world. haha. My advice though is to look for JAPANESE sweet potatoes, they have an absolutely delicious flavor and texture. You can find them at whole foods. Breakfast used to be a struggle for me too because nearly every breakfast item out there has some kind of grain in it...but now I'm eating this hot rice cereal called "Rice and Shine" made by Arrowhead Mills I think...Lundberg also makes one but I don't like it as much. I eat it with a ton of fruit.

Hey--forgot to mention that I'm 22 and I had this all through college! So I feel you big time!!! Especially because young people (our friends) who are so excited to have lots of energy and fun at this point in their lives have a hard time believing and understanding how we feel. You have to drill it into them....

Oh my gosh...EXACTLY. How did you deal with it all? I'd love to hear your story. For some reason it just helps to know I'm not the only lonely young person out there, not out having the time of my life...LoL.

I have had alot of problems with constipation. Luckily alot of it has cleared up but it is still an issue for me. Its crazy though now if I don't go for one day I really feel it- like get so uncomfortable I can't sit still and my stomach gets so bloated.

Miamia and Rachel- Isn't the constipation HORRIBLE?? you described it perfectly Miamia...my stomach actually VISUALLY extends when I dont go. I think it's because I have trouble keeping on weight so I have to eat 2500 calories a day, and that's a ton of food because everything I eat is low calorie because I have such bad food sensitivities. SO when I dont go to the bathroom and get all that food out, my stomach extends and it's just so uncomfortable! Ironically I'm having this issue right now. It's weird...my constipation got worse after going gluten free! No diarreah now...JUST constipation. I'm gettin sick of it. Anyone have any constipation advice? haha...

I was also wondering if anyone thought that bloating might go along with Babesia or co-infections? because I wake up with a very tiny stomach since im underweight...and then by the end of the day it starts looking pretty round!

Dlp- Thanks for the welcome And good luck on your BioSET, I'm excited for you! keep us updated! Do you have pretty bad food sensitivities?

Did your Babesia show up in a bloodtest?

Actually my babesia showed up in BioSET...and I also had other alternative medicine type testing done where babesia showed up.

You asked if I thought the BioSET was "right on the money"...and i've had some experiences where it really has been. It's always done wonders for my allergy with dairy, but as for the actual testing and what it finds...I feel that it's very accurate for it's readings on my Candida...and it also found H Pylori, which was found in my blood tests. One time it also showed up that there was a problem with my tonsils, and it was completely accurate because I had a sore throat that day.

Thanks for all the information on Babesia! So you think you all have it too? My biggest symptom out of all the symptoms that I have in general is severe constipation (I know, T.M.I. right? haha. but im so used to talking about it by now.) does anyone suffer from that? If I don't take high doses of magnesium-oxide, I don't go for about 2 weeks, maybe even three if it's really bad. What your guys' worst symptoms? You guys say that you think you might have Babesia too...what kind of symptoms make you think that? I get the headaches, the night sweats, the fatigue...then randomly I'll get spurts of diarreah.

This would be lovely dinner conversation, wouldn't it?

Gosh you have to be quick to keep up on this board! haha. I do see why you guys call it Rachelville! And I do love your sense of humors. I'm glad to have joined the convo.

Rachel, I'm glad to be of assurance about the BioSET! It's been working wonderfully for me...but don't worry...it will work better once your lyme is under control a little more. Treatments don't stick as well when you have infections, bacteria, parasites, etc. And the woman I go to does detox pathways as well. It sounds like we both get treated in the same way. Good luck on foods Foods is the best category to be treated for, it's the most fun! My only advice to you though is to wait to try out foods until you go back for another treatment to see if the treatment for foods stuck. Also, I was a little dissapointed...I was sensitive to 91 out of 100 tested foods and all of the foods couldn't fit into one treatment so I kept having to go back. But I guess what im trying to say is just take it slow!

And yup, I'm actually taking Artemisinin too!!! Good research Does anyone know much about Babesia? I'm newly diagnosed and i can't seem to find all that much about it out there. It seems like you guys are expert researchers though! haha.

I was wondering...when you guys say "herxing", what do you mean? Is that like detoxing?

extra magnesium (most people don't get enough anyway) can help.

good luck!

I have horrible constipation as well, it's actually one of my symptoms that my food allergies cause. I take magnesium-oxide capsules, but it also comes in powder form which would be much easier for a child to take. I believe that you have to mix it in warm water, but I bet it would work just fine in warm prune juice.

Does anyone out there know if it's possible to just kind of get immune to magnesium? I'm starting to feel like I need to increase my dosage and im terrified that one day It wont work anymore...because this is the ONE AND ONLY thing that helps me to go. If i dont take it, i dont go to the bathroom for about 2-3 weeks. It's terrifying.