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Omg...i Might Be On To Something

Rachel--24

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miamia Rookie
miamia
Posted
:lol::lol::lol:

Not me, I'm sure you've never met anyone who hates eating as much as I do!!! LOL Food doesn't make me feel good ... ;):lol::lol:

Food makes me feel horrible -all food- but I still LOVE it!! I blame my body not the food. I have always loved eating. I just wish it loved me back. Unfortunatly food rules my life in a way the I wish it didn't, but I still take alot of time to prepare my meals and make sure they taste yummy. My doctor always thinks its so funny how creative I get with how few options I ahve to work with.

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miamia Rookie
miamia
Posted
On everything!! I use it like I'd use butter -- on veggies, toast, etc. It's great on popcorn.

My doc has me on VSL#3 ... google it, you might like it for candida. It's a probiotic with 450 billion bacteria! Miamia's doc has her taking it, too.

If I hadn't dealt with candida before, I probably wouldn't be so on top of it now! I'm really hoping I don't get it. I think you're right, many people with Lyme have candida problems that give them symptoms ... especially those who've been on antibiotics.

So yesturday was officially my last day on the VSL !! And let me just say one of the owrst days I can remember having it jsut seemed to make me sicker and sicker and yesturday it just was full on terror!! I was so ill! I cannot handle it right now . I talked to my doc about it and we both agree it is not for me right now my body just does not want good bacteria to thrive apparently.

miamia Rookie
miamia
Posted
I have both a rebounder and an exercise ball, and I bounce on one or the other of them once in while...I think I really need to do it more often. The HN doctors I go do also do a lymphatic drainage massage.

Uh, yah, I can't imagine giving myself a shot, lol. Stupid alcohol! I wonder if Whole Foods would have it...I don't think I've ever heard of the nasal spray though, but that doesn't mean they don't have it, lol. I get overwhelmed looking at their supplement shelves. :lol:

Donna-

I have always wanted a lymphatic drainage massage- have you ever had one?

CarlaB Enthusiast
CarlaB
Posted
Food makes me feel horrible -all food- but I still LOVE it!! I blame my body not the food. I have always loved eating. I just wish it loved me back. Unfortunatly food rules my life in a way the I wish it didn't, but I still take alot of time to prepare my meals and make sure they taste yummy. My doctor always thinks its so funny how creative I get with how few options I ahve to work with.

Food doesn't make me feel bad ... I feel bad, and it doesn't make me feel better. But a hug does. ;) I have no appetite, and only eat to take my supplements and medicine, which is four times per day ... so I eat plenty!

AndreaB Contributor
AndreaB
Posted
Unfortunatly food rules my life in a way the I wish it didn't, but I still take alot of time to prepare my meals and make sure they taste yummy. My doctor always thinks its so funny how creative I get with how few options I ahve to work with.

Maybe I should figure out how to get you over here to be creative with our dinners amongst those things we don't eat and can't eat. :P

Sorry the VSL was so awful for you. Has your doc run any more tests to check for lyme or co-infections? Didn't he think ART would be a good thing for you? I'd love to see you tackle that so you can have what needs to be dealt with prioritized.

rinne Apprentice
rinne
Posted
Yeah...I posted alot of scientificness about NDF awhile back. :)

Heres some links that I have...

This site is from the maker of NDF...a ton of info here.... Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Thank for the links Rachel, I know I need to do more research but I'm finding it hard to get motivated these days. Stupid mercury, candida, lyme brain. :lol:

AndreaB Contributor
AndreaB
Posted
Stupid mercury, candida, lyme brain. :lol:

Ok, so what's my excuse? :P:lol:

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Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I talked to my doc about it and we both agree it is not for me right now my body just does not want good bacteria to thrive apparently.

Mia...I'm glad you're off of the VSL since it was making you feel bad.

One thing that I'm learning alot about right now through all this testing is that sometimes our bodies just arent ready for certain things. Also the dose you were on might have been too much for you.

We are both really sensitive.....when I get tested for stuff...what Anna tells me I can tolerate is always WAY lower than the recommended dose and some stuff I cannot take at *any* dose. My body just doesnt want anything to do with it.

I'm not taking any probiotic right now. I gave up on trying to force my body to accept stuff thats "supposed" to be good for me. If it makes me feel like crap it cant be good. <_<

I still sort of have that feeling...like I NEED to be taking a probiotic....its like instilled in my brain or something. :rolleyes:

I brought my probiotics to ART on Sunday and Dr. Amy said they really werent doing me any good. She didnt put them on my list of things that work well with my body right now. I'm sure later on I'll be taking plenty of probiotics but for now I guess its really not that important or helpful to me.

I think eventually good bacteria are gonna thrive :) ...probably right now this isnt what your body needs the most so its not handling it all that well. I hope you start feeling better now that you're off it. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Food makes me feel horrible -all food- but I still LOVE it!! I blame my body not the food. I have always loved eating. I just wish it loved me back.

Yup.....ditto to everything you wrote.

Almost everytime I eat I get reactions.....but yeah....I have no ill feelings toward the food. I just wanna eat it ALL....and someday I will. :P

NoGluGirl Contributor
NoGluGirl
Posted

Dear Rachel,

I love pretty much all Chinese Food! My faves are Sweet and Sour Chicken, Crab Rangoon, Shrimp Rangoon, Spring Rolls, Hot Sour Soup, Chicken with Vegetables in Soy Sauce Gravy, and there are many other things I am anxious to try! I am just hoping I do not react to soy. :unsure: It seems lately everytime I eat Pebbles with soy milk, I get a sore or scratchy throat. :(

The weather around here could be to blame, though. I have felt rough a lot lately because I have been getting glutened once a week for like the past month or two. My system cannot recover! I was doing so well, then the glutenings ruined everything. Still, there is another worry I could have a bile duct blockage or something.

I have been getting pain there again. I am really concerned. It has been difficult to go low-fat and gluten free. Some of these foods have a lot of fat, like the bread. On the rare occaisions I get one, it has like 6 grams or 9 grams per slice. Over doing the fat always makes me sick due to having my gallbladder out.

Meanwhile, I am glad you do not want to kill anyone for food! :lol: As far as the mushu pork goes, I am familiar with it. What it is called exactly varies from region to region in China. Sometimes it is called Mu-shi Pork. I have it in cookbooks.

You know how you were talking about sucky docs? There is a new book out by a doc talking about the lack of listening skills in the medical community. Another member on one of the threads I was browsing the other day talks about it. Check this out: Open Original Shared Link

I nearly broke down in tears reading this. What he wrote sounded so much like my story. I am sure many of you have had the same things occur in your quest for wellness. It addresses Celiac in it. I wish I could afford a copy.

Dear Donna,

I am so glad you enjoyed my commentary for our huge reunion feast food battle! ;)

Dear Patti,

My mother is the same way. She will believe any crap she sees on television, but when it comes to her own daughter, it is a different story.

Dear Carla,

I love food, but it does not always love me back. Even worse, no matter how hard I try, I cannot get thinner. My thyroid may be off again. I do not know if it is slow or fast. What is really unfair is, my body gains weight whether my thyroid is under or overactive. Leave it to my body to get fat when it is supposed to lose weight. :(

I have Candida really bad I am sure. I am glad you do not have to suffer with it. My lower stomach is always so swollen. I always used to be too skinny, and now I feel like a beached whale. I am not huge, but the bloating is very uncomfortable. Plus, I would probably lose 2 or 3 dress sizes if it was gone!

Coconut oil really is great for a lot of things. I have some. There is a lot of interesting medical benefits of this stuff. Studies found that people do not tend to suffer from Malaria and other illnesses like people from other areas. Coconut oil is a great anti-fungal, anti-viral, and has loads of other great features.

That concludes the Food Lust Files for today! :P Coming up next is How The BioSET Turns!

Sincerely,

NoGluGirl

miamia Rookie
miamia
Posted
Maybe I should figure out how to get you over here to be creative with our dinners amongst those things we don't eat and can't eat. :P

Sorry the VSL was so awful for you. Has your doc run any more tests to check for lyme or co-infections? Didn't he think ART would be a good thing for you? I'd love to see you tackle that so you can have what needs to be dealt with prioritized.

Oh Andrea I would love to come visit you I love cooking for other people . Lately every sunday I cook brunch for my sister and my little kiddies(neice and nephew) even though its all stuff I can't eat. Now 2 of our good friends come over and I cook for them too.

I also cook for alot of my friends and their friends who have food allergies. Unfortuantly I can't even eat alot of that .

My doc is not running any new tests right now. He thinks art could be helpful for me but not right now becasue I would not be able to take all the su[pplements that usually come along with it.

miamia Rookie
miamia
Posted
Mia...I'm glad you're off of the VSL since it was making you feel bad.

One thing that I'm learning alot about right now through all this testing is that sometimes our bodies just arent ready for certain things. Also the dose you were on might have been too much for you.

We are both really sensitive.....when I get tested for stuff...what Anna tells me I can tolerate is always WAY lower than the recommended dose and some stuff I cannot take at *any* dose. My body just doesnt want anything to do with it.

I'm not taking any probiotic right now. I gave up on trying to force my body to accept stuff thats "supposed" to be good for me. If it makes me feel like crap it cant be good. <_<

I still sort of have that feeling...like I NEED to be taking a probiotic....its like instilled in my brain or something. :rolleyes:

I brought my probiotics to ART on Sunday and Dr. Amy said they really werent doing me any good. She didnt put them on my list of things that work well with my body right now. I'm sure later on I'll be taking plenty of probiotics but for now I guess its really not that important or helpful to me.

I think eventually good bacteria are gonna thrive :) ...probably right now this isnt what your body needs the most so its not handling it all that well. I hope you start feeling better now that you're off it. :)

Rachel-

I do take an ultra flora and three lac and I am ok with these. My doc thinks I am ok witht the three lac because it is designed to kill bad bactreria where as the VSL is designed to put good bacteria in. My body just won't take the good bacteria but I guess attleast it will take something to kill all the baddies ( all though they still seem to thrive. )

miamia Rookie
miamia
Posted
Yup.....ditto to everything you wrote.

Almost everytime I eat I get reactions.....but yeah....I have no ill feelings toward the food. I just wanna eat it ALL....and someday I will. :P

Sometimes I think the cruelest think about this illness is that it has to involve food!!! I mean something that we can't and shoulden't have to avoid. I jst wish it was simple. Avoid DAiry or avoid gluten. My body is so moody it is always telling me to avoid everything- but I LOVE FOOD!!!! The funny thing is most of what Ir eally want is gluten and dairy free( except ice cream )

jerseyangel Proficient
jerseyangel
Posted
:lol::lol:

I'm refering to your holiday baking......stuff you couldn't eat that you made for the family. :)

Oh yea! Andrea, you remember more about me than me :lol: By the way, it was good to see Mitch weighing in--how is he?

Food makes me feel horrible -all food- but I still LOVE it!! I blame my body not the food. I have always loved eating. I just wish it loved me back. Unfortunatly food rules my life in a way the I wish it didn't, but I still take alot of time to prepare my meals and make sure they taste yummy. My doctor always thinks its so funny how creative I get with how few options I ahve to work with.

Hi Miamia :)

This statement also describes me. When I read it, I went like this :o . I fantasize about food, and am constantly trying to dream up ways to make things that will taste good. I have a narrow list of things to work from, so I understand about getting creative.

Carla,

I'm sorry that it came to having to cut ties with your mom. I couldn't do that because of my dad--but I can certainly understand your need to protect yourself and your kids from the abuse. We had a phone conversation yesterday--when she first called, I couldn't bring myself to pick up (we have caller ID) so I waited until later. I always feel bad after--with her it's more subtle, lots of mind games. I just don't get it...I always think that "this time I won't get sucked in"--and I do anyway.

NoGluGirl,

Sorry you have to deal with these things too. You would think those closest to you would offer the most support, but we know that's not always the case.

Hi Rinne :D and everyone!

CarlaB Enthusiast
CarlaB
Posted
Ok, so what's my excuse? :P:lol:

Homeschooling brain! :lol:

CarlaB Enthusiast
CarlaB
Posted
Carla,

I'm sorry that it came to having to cut ties with your mom. I couldn't do that because of my dad--but I can certainly understand your need to protect yourself and your kids from the abuse. We had a phone conversation yesterday--when she first called, I couldn't bring myself to pick up (we have caller ID) so I waited until later. I always feel bad after--with her it's more subtle, lots of mind games. I just don't get it...I always think that "this time I won't get sucked in"--and I do anyway.

My dad is a big part of the reason I had to cut it off. She and my step-father were trying to ruin my relationship with my dad ... and he was buying into all that they were telling him.

CarlaB Enthusiast
CarlaB
Posted

I just read parts of this article on stealth infections. I'm going to post the link because I think various parts will be interesting to many here ... I can't pick and choose what everyone would be interested in. It seems to cover many of our topics. Open Original Shared Link

I was trying to find out what NGG had found on coconut oil and malaria ... for some reason this article came up. I couldn't find anything on coconut oil and malaria though ... I hope it's good for it because babesia is similar to malaria.

dlp252 Apprentice
dlp252
Posted
Donna-

I have always wanted a lymphatic drainage massage- have you ever had one?

Yes, the guys at HN did it for me a couple of months ago when I was sick--but only in the neck/shoulder region. I do think it helped a bit.

CarlaB Enthusiast
CarlaB
Posted

Here's another article about detoxing through the skin. The foot bath pictures are revolting. :oOpen Original Shared Link The article says it's about far infrared, but it's about much, much more. It talks a lot about Dr. K and chelation.

dlp252 Apprentice
dlp252
Posted

Thanks for the links today Carla. :P I've seen the footbath pictures before on the mercury toxicity forum I read once in a while. They're gross...there's also some discussion on there about some tests that were done by the people who run the forum that they got the same results on the icky water when they didn't have any feet in them, lol. The tests weren't scientific however.

dlp252 Apprentice
dlp252
Posted

Here is a link to the pictures that the owners of that forum took while testing one foot spa:

Open Original Shared Link

dlp252 Apprentice
dlp252
Posted

And here's a link to the discussion about the baths:

Open Original Shared Link

AndreaB Contributor
AndreaB
Posted
Oh yea! Andrea, you remember more about me than me :lol: By the way, it was good to see Mitch weighing in--how is he?

:lol:

Mitch is doing well. Not often he gets to weigh in but I do keep him updated on what's going on here.

Homeschooling brain! :lol:

:lol::lol:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
My doc is not running any new tests right now. He thinks art could be helpful for me but not right now becasue I would not be able to take all the su[pplements that usually come along with it.

Mia,

Theres no supplements that go along with ART.

Its a test which lets you know whats going in your body..it pinpoints the problem areas, infections, etc.

You can bring your supplements or medications and they can be tested as well. They'll let you know if the stuff you're taking (or are thinking of taking) is beneficial for you or not.

The whole purpose of ART is so that you dont end up taking stuff which your body will react badly to or that is not having a positive effect on your body. Even if you were taking something everyday and not reacting to it...it could still be useless to your body or to your situation. ART is good for identifying stuff like that.

Then you can also get tested for stuff that you might need to fight lyme, chelate metals, fight candida, etc...they can tell you what treatments will work best.

Its not about supplements at all...unless you wanna know what works for you and what doesnt. Most people do wanna know this and bring everything they have to be tested.

Rachel-

I do take an ultra flora and three lac and I am ok with these.

Ok....so then you are getting some good bacteria in you. :)

Sometimes I think the cruelest think about this illness is that it has to involve food!!! I mean something that we can't and shoulden't have to avoid.

YEAH...why does it have to be food!! :angry:

I think "eating" is pretty much something you NEVER put too much thought into when your healthy and *can* eat. Its just something that you take for granted....noone would ever think that someday they might be intolerant to all foods. :blink:

Its hard but at least we *can* get better...there is a good chance of eating totally normal again. This is what I have to remind myself sometimes.

If I had to choose between cancer and this....I think I would pick this. I know there are people out there way more sick than I am and yet...they can eat whatever they want. They've most likely never even thought about the possibility of NOT eating whatever they want....but I'm sure they've got alot of other stuff on their minds. I'm not so sure I'd want to trade.

When I get to a point where I get frusterated or start feeling sory for myself....I think about stuff like that and then I'm ok with it. I know its not gonna be like this forever.

I jst wish it was simple. Avoid DAiry or avoid gluten. My body is so moody it is always telling me to avoid everything- but I LOVE FOOD!!!! The funny thing is most of what Ir eally want is gluten and dairy free( except ice cream )

All the foods I want are NOT gluten or dairy free. I want all the stuff I cant have! I want JUNK!! :ph34r:

I might be the only one to feel this way but I guess I'd rather go through all this....get myself well.....and go back to eating everything I used to eat. I'd rather do that than give up gluten and dairy for LIFE. :blink:

Even if those were the only two foods I had to avoid and I felt good...its still a HUGE restriction and something to worry about all through life. So given a choice between these two scenarios...I would choose what I'm going through right now.

Is that totally crazy?? :unsure:

Yes, the guys at HN did it for me a couple of months ago when I was sick--but only in the neck/shoulder region. I do think it helped a bit.

Donna, I didnt know they did this massage there. I TOTALLY want to do this!!

I might call Nancy and ask her about this. Are the massages covered at all by insurance? How does that work?

Open Original Shared Link The article says it's about far infrared, but it's about much, much more. It talks a lot about Dr. K and chelation.

I found this page awhile back when I did all my searches on Dr. K and detoxification. I've read it more than once but still get something out of it each time. :)

dlp252 Apprentice
dlp252
Posted
Donna, I didnt know they did this massage there. I TOTALLY want to do this!!

I might call Nancy and ask her about this. Are the massages covered at all by insurance? How does that work?

Well, mine was covered because it was given as part of my PT session...I told them I was sick and Nancy said for the PT guy to give me a lymphatic drainage massage...they did it at least two times, maybe three, during that month I was sick. I know they do massages by themselves (without chiropractic or PT), and probably could have someone do just the lymph drain thing, but don't know for sure, and not sure whether that could still be covered.

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      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
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