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Omg...i Might Be On To Something

Rachel--24

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dlp252 Apprentice
dlp252
Posted
Ahhh the white spots, you suffered from them too? They are SO obnoxious. It seems that when they show up my throat and ears start to itch and feel a little swollen and icky. Did ya get to experience that as well?

We are fun! :P My throat feels "hot" when I get them...sometimes sore too and yes, my ears are affected too. Stupid white spots! :P

Speaking of eating a whole calf, how can you digest that fatty grass feed organic hamburger meat Rachel? I tried it and it felt like I had pop rocks in my gut. Isn't it like 10 percent fat?

:lol: egads...if you only knew how much fat I eat, lol! The organic is 16% fat I think...may be why you can't handle it. I buy the 9% fat (non organic though), but I' d really rather have the 20 or 30% stuff. :lol:

Or maybe it was something like I realized that I had lost my fortitude and that it has been replaced with something much softer and that as a result of that it creates a space for people to step into. I was always so strong willed, :ph34r: a little bit I think people stayed out of my way. :o:lol:

I think you should write a book! You always have the best way with words!!!

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miamia Rookie
miamia
Posted
OMG!!! How do you feel?? I am SO nervous at the thought of even trying gluten again! If I get CC'd I am nauseous for 2 weeks straight! :huh:

Little Miss,

I'm 17. And, another poster on this thread ShadowSwallow is a teen too. I had to drop out of high school, so I understand. I'm in online school (that's a whole other story, LOL) and it's interesting....not really what I would like to be doing, but oh well!

Carla,

I read that about the green tea thing too. I have been drinking some green tea from Starbucks lately...because I LOVE the ice. LOL! I get a tall iced green tea in a grande cup with extra ice. They look at me like :blink: LOL!!

I usually for years have had the slightest glutning or dairing and been so ill!!!!!!!!! but my bod told me it would be ok and i always trust my body and it was right I was ok!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

CarlaB Enthusiast
CarlaB
Posted
I usually for years have had the slightest glutning or dairing and been so ill!!!!!!!!! but my bod told me it would be ok and i always trust my body and it was right I was ok!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

You were on Levaquin for quite some time and I found that all my GI symptoms were cleared on the Levaquin. Perhaps it was bartonella for both of us that caused our gluten intolerance.

I just "knew" when it would be okay for me, too. I used to get glutened by the smallest crumb, too.

Congratulations!

Guest LittleMissAllergy
Guest LittleMissAllergy
Posted

So I'm having a terrible time this afternoon, and when my symptoms flare like this I start to get anxiety (perhaps that's a symptom in itself?)...

So my current anxiety is the celiac disease 57 test....my doctor says that it indicates that I have lyme...but could it be something else that's making my levels what they are?

I guess what I mean to say is, am I missing something here? Could I have something like meningitis (can you tell I'm having the intense front throat/neck stiffness and pain again?), and could that be making my celiac disease 57 what it is? I know you're not all doctors, but I don't know who else to ask.

I know I shouldn't be stressing either. It just makes all of my lyme symptoms worse (and yes...it should almost be comforting to me that all of my symptoms point to lyme....)

Sorry, I think I need to chill <_< But it's so hard to...

dlp252 Apprentice
dlp252
Posted

I'm so sorry you're having this horrid flare!!! :angry: it's been a while since I've done the research on the C.D57. What was your score...mine was 84...the highest among those of us on this thread who had it done. At the time we all had ours done, we determined that the numbers pretty accurately corresponded to how severe our symptoms were. Those who were struggling the most had the lowest scores and those of us who were sick, but not as severe had the higher scores...all of them were under the optimal score of 160-200 that doctors like to see it at. If I remember correctly (and that's a BIG IF, lol) the C.D57 was pretty specific...it measures the killer T cells, and I wish I could remember why that is so indicative of lyme, lol. All my bookmarks are at work, so if by Monday no one else has answered your question, I can look up some of my bookmarked sites.

rinne Apprentice
rinne
Posted
.....

I think you should write a book! You always have the best way with words!!!

What a sweetie you are. :wub:

I usually for years have had the slightest glutning or dairing and been so ill!!!!!!!!! but my bod told me it would be ok and i always trust my body and it was right I was ok!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Miamia that is fabulous news, I am so happy for you. :wub:

So I'm having a terrible time this afternoon, and when my symptoms flare like this I start to get anxiety (perhaps that's a symptom in itself?)...

.....

I think you make a very good point, I maintain that anxiety is our body trying to alert us to problems, assuming there are no other reasons for the anxiety like being alone in a dark alley and being followed!!! I think that illness first strikes us on a metabolic level and that the testing done by conventional doctors only looks at the immunological response (damage) and until they see the damage they don't see the problem meanwhile we are ill and too often disbelieved.

So I went to work today for a few hours, feeling rather wretched and wondering if tomorrow morning is going to be a repeat of Thursday morning. :o I kept the door shut though and couldn't smell the fumes nearly so much.

mftnchn Explorer
mftnchn
Posted
Thanks for the info on minerals!

I'm on a product called Minerall, plus something called Major Mineral Mix. In addition, I am getting more magnesium via my buffered C powder (Thorne) and Natural Calm.

Sherry

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mftnchn Explorer
mftnchn
Posted

Hello to everyone and welcome to newcomers.

I am home after my two week trip but having a very down day with high fatigue and brain fog. This is happening 1-3 days a week, and also some achiness at times that gets better when I take charcoal. I just caught up with reading but no energy to post.

Rachel I am also very low in selenium.

I do have my summer trip home scheduled for June 24; earlier than planned due to prices on flights.

Sherry

miamia Rookie
miamia
Posted
So I'm having a terrible time this afternoon, and when my symptoms flare like this I start to get anxiety (perhaps that's a symptom in itself?)...

So my current anxiety is the celiac disease 57 test....my doctor says that it indicates that I have lyme...but could it be something else that's making my levels what they are?

I guess what I mean to say is, am I missing something here? Could I have something like meningitis (can you tell I'm having the intense front throat/neck stiffness and pain again?), and could that be making my celiac disease 57 what it is? I know you're not all doctors, but I don't know who else to ask.

I know I shouldn't be stressing either. It just makes all of my lyme symptoms worse (and yes...it should almost be comforting to me that all of my symptoms point to lyme....)

Sorry, I think I need to chill <_< But it's so hard to...

Litttle Miss-

Anxiety can definitly be a symptom- its one of my bad ones. Its worse depending on what I eat.

New Studies show C D 57 test could also indicate metals- I think this is what caused mine to be so low.

Try breathing excercises to relax- they help me the other thing that sometimes helps me is going over things in m head or writing them out - it helps me to seperate what is actuall going on instead of just letting my head go crazy for no reason.

miamia Rookie
miamia
Posted
You were on Levaquin for quite some time and I found that all my GI symptoms were cleared on the Levaquin. Perhaps it was bartonella for both of us that caused our gluten intolerance.

I just "knew" when it would be okay for me, too. I used to get glutened by the smallest crumb, too.

Congratulations!

Thanks Carla-

I think its the REglan thats helping me (fingers crossed) my abatement of symptoms directly coorealates with when I started with th medication at the full dose

miamia Rookie
miamia
Posted
What a sweetie you are. :wub:

Miamia that is fabulous news, I am so happy for you. :wub:

I think you make a very good point, I maintain that anxiety is our body trying to alert us to problems, assuming there are no other reasons for the anxiety like being alone in a dark alley and being followed!!! I think that illness first strikes us on a metabolic level and that the testing done by conventional doctors only looks at the immunological response (damage) and until they see the damage they don't see the problem meanwhile we are ill and too often disbelieved.

So I went to work today for a few hours, feeling rather wretched and wondering if tomorrow morning is going to be a repeat of Thursday morning. :o I kept the door shut though and couldn't smell the fumes nearly so much.

Thanks Rinne-

I am so sorry to hear you are having a tough time. YOu had been doing so well. Stupid beer fumes INDEED!!! Hopefully you will be back to your normal healthy self soon!! I am so glad to see you posting more I always love hearing from you you add so much to this thread. Such a lovely lady you are!!!

Nyxie63 Apprentice
Nyxie63
Posted

Hey! Just stopping by to let you know I'm still kicking. Been immersed in the world of brain stuff lately, trying to educate myself.

Got my MRI results back. No typical lyme lesions, but they did find something. Unfortunately, they couldn't really tell what it was. It's either a gliosis (brain scar tissue) or a sign of early vascular disease in the brain. Both can be caused by a lot of different things (B12 deficiency, migraines, autoimmune stuff, etc).

I'm going to be sending the films out for a second opinion, particularly since I'm noticing things on there that they didn't mention. Yeah, I'm totally untrained and have no idea about brain structures and all that. But when this thing looks a lot like the thing they mentioned but they didn't mention the first thing, I get curious. After that, will be looking for a good neurologist. Will probably end up having to go to NYC. Ugh.

Anyway, I'm doing fine on zith and ceftin. No side effects to speak of. Yay! Feeling a little better overall. Not fabulous, but I'll take it.

Nyxie63 Apprentice
Nyxie63
Posted

Miamia,

Congrats on re-entering the dairy and gluteny worlds! :D

Katy,

You might want to look at an RBC elements blood test. It tests the mineral content of what's in your red blood cells, rather than what's circulating in serum. It can give a better idea of what's in your tissues. The main problem with hair analysis is that it only shows what you're excreting. If your body is holding onto certain things, they won't show. If you do the hair analysis and if you color your hair, pubic hair will work.

Paula,

Sorry about your mold problem. Maybe a dehumidifer would help? At least it would draw moisture out of the air so the mold will dry out and, hopefully, die. I'm sure there's probably a mold problem from the flooded rental property next door too. If not now, there will be. Could be where the new surge of mold is coming from.

How much tea tree oil did you put in the bath?

Carla,

The only problem with green tea (other than caffeine) is that it contains high amounts of fluoride. Since you have thyroid issues, it might not be the best choice. What exactly is it in green tea that promotes abx utilization anyway? Maybe they have it in capsules?

Sorry I didn't address everyone. Short attention span still kicking in. Hope all are well. :)

confused Community Regular
confused
Posted
Paula,

Sorry about your mold problem. Maybe a dehumidifer would help? At least it would draw moisture out of the air so the mold will dry out and, hopefully, die. I'm sure there's probably a mold problem from the flooded rental property next door too. If not now, there will be. Could be where the new surge of mold is coming from.

How much tea tree oil did you put in the bath?

I will try the dehumidifier. Im willing to try anything to survive in this house. Yesterday i was in and out so much that i was feeling really good. But then when i stayed in the house for the rest of the day, I got sick all over again. So i know its the house lol. Could i get mold floatign around from the house next door. I guess since I did go over and talk to them for aboue an hour, i could of breathed extra mold in.

All i know is i better find someone ASAP, or im going to be going crazy lol.

I only put a few drops in the water. Maybe 4-5 at the most.

paula

ShadowSwallow Newbie
ShadowSwallow
Posted

Hi Everyone,

Sorry I've been MIA for a while. It's nice getting back here. :)

I hope y'all're doing well! :D

*goes off to catch up on reading*

:wub: :wub: Birdy

confusedks Enthusiast
confusedks
Posted
So my current anxiety is the celiac disease 57 test....my doctor says that it indicates that I have lyme...but could it be something else that's making my levels what they are?

I had the C.D57 and my score was 24...which confirmed what my Dr already thought...I have chronic Lyme. Donna was right...its the T cells that kill Lyme that they are measuring. It can be high and the patient can still be really sick, but usually a co-infection os Lyme is what is making them so sick. And since the test doesn't look for T cells for co-infections, it can come back normal.

I think it is used as an overall "how's your immune system going?" kind of test. I hope that helps. Why don't you talk to your LLMD about your concerns of meningitis. I'm sure he will be able to reassure you that it's not the case.

AndreaB Contributor
AndreaB
Posted

Hi Birdy and Nyxie. Good to see the two of you.

Sherry,

Are you coming stateside home?

Guest LittleMissAllergy
Guest LittleMissAllergy
Posted

Thanks you guys for the comforting words, sorry to get so down on you all of a sudden!

I'm doing better this morning, so my mind is kind of at ease right now. It seems like my symptoms come in waves and the bad wave is from about 3:00 in the afternoon to 9:00 at night.

Hope you all are doing well!

nora-n Rookie
nora-n
Posted

If you have google toolbar installed, you can have a button there for google bookmarks and you can import all your bookmarks into google bookmarks and use them at homa and at work.

I have not found any way to get tmen back into the microsoft internet explorer bookmark , though, unless you export the bookmarks (you should do taht periodically anyway as a backup) and then you dan copy them over to a memory pin and copy them to the home computer and import them back into the favourites.

I think if you have firefox as a browser it is possible to get them intohte favourites of several computers by using the gmarks application. First google bookmarks and then gmarks as far as I remember.

nora

ShadowSwallow Newbie
ShadowSwallow
Posted

Ok, all caught up. :lol:

Thanks Carla-

I think its the REglan thats helping me (fingers crossed) my abatement of symptoms directly coorealates with when I started with th medication at the full dose

You're taking reglan? :huh: My LLMD just started me on it... or, rather, he wanted me on it starting about 3wks ago but I'm having such a hard time fitting it into my med/supp schedule. <_<

Welcome, Little Miss! Yep, I'm 17. :)

Nanjkay Apprentice
Nanjkay
Posted
Thanks you guys for the comforting words, sorry to get so down on you all of a sudden!

I'm doing better this morning, so my mind is kind of at ease right now. It seems like my symptoms come in waves and the bad wave is from about 3:00 in the afternoon to 9:00 at night.

Hope you all are doing well!

Me too. I crash at about 3 and don't feel good again until 9 or 10 pm. Even on my best days, I am no good from this time slot. Is that an adrenaline, cortisol thing?

Nancy

NoGluGirl Contributor
NoGluGirl
Posted

Dear Everyone,

I would have posted much sooner, but have had a busy week! :) My best friend's wedding was last night. She looked like a princess in her gown! :D Everything was just beautiful. I even got to eat! :o

Steph had them prepare a special gluten-free meal for me! :wub: It was nice being able to eat a meal I did not have to cook. Everything always tastes better when you do not have to cook it yourself. Why is that? :lol: We did not get home until after 10pm.

Prior to the wedding, I got my hair done. It is still not where I want it yet, but closer. I will send you all pictures soon. I have a lot of catching up to do! I also see we have some new members on our thread. :) I should be able to type in my usual column tomorrow or the next day.

Sincerely,

Jin

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Mia...YAY for PIZZA!!! :D:D

Steph had them prepare a special gluten-free meal for me! It was nice being able to eat a meal I did not have to cook. Everything always tastes better when you do not have to cook it yourself. Why is that? We did not get home until after 10pm.

Jin,

It sounds wonderful! :)

I'm so glad you were able to eat and have a good time at your friends wedding...AND they prepared a special meal just for you...how COOL is that!! :D

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

I recovered from my cold enough that I was able to go to the party in my new dress and have a great time. :)

I also ate dinner and had two pieces of cake.

This cake did not seem to have the same effect as the cake I ate last week. I did not get high from my cake even after two pieces. DARN!! :lol:

Anyways, it was alot of fun and after the party a group of us decided to go out to the clubs for more dancing. No drinks for me of course...I had my Penta water with me at all times. ;)

I remember mentioning many times in this thread how much I missed going out dancing with my friends and now I've been out 2 weeks in a row!! YAY! :D

I'm not feeling out of place and noone is even noticing that I'm not "normal". Not one person asked any questions and I guess the only difference is that I drank water instead of alcohol....which isnt really too out of the ordinary. :)

Its just a really great feeling to be participating in life again! :)

Of course if my chelation does what I hope it will...things will only get better. I'm really looking forward to trying this again. :)

AndreaB Contributor
AndreaB
Posted
Steph had them prepare a special gluten-free meal for me! :wub: It was nice being able to eat a meal I did not have to cook. Everything always tastes better when you do not have to cook it yourself. Why is that? :lol: We did not get home until after 10pm.

Great news! Glad everything went well. I agree things are better when cooked or made by someone else. :)

Rachel,

Glad you recovered enough to have a fun weekend. :)

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

      By trents · Posted

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

      By catnapt · Posted

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    • 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).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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