Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

Rpm999 Contributor

ah i've always been wondering this, does anybody know what could make your tongue have this tone: sometimes it looks like rust, like a yellow/brown/orangeish coating, kind of like copper or something


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
CarlaB Enthusiast

Sherry, congratulations to your daughter, how exciting! How will you ever be able to stay in China?

How fun!!! You guys will have to take lots of pics. Kass, are you taking your laptop?? Then you guys can sit in the same room and post on the forum, like Carla and Morgan used to do :lol::lol:

:lol: I'm sure we'll do that for Lyme chat ... we're both there almost every night, LOL. In fact, I think we've had as many as five of us from this thread there, LOL. We should call it OMG chat!

Update on my LLMD appointment today to review my Igenex test. He doesn't think I am positive for lyme. Well, I am sort of confused. I am sort of positive because I had 1 band but sort of not positive because your supposed to have 2 bands at least. So, not sure...

I thought maybe if I was positive it would give me a clue on where to go with my daughters leg/bone pain.

What band was positive? I'm guessing 41.

You can be negative and still have Lyme .... but an LLMD would know that. Did he have any suggestions on what else it could be?

I am more and more convinced all the time that it's a composite of "illnesses" that we all have. I knew Lyme was primary for me, so I attacked it with abx, then I started addressing other issues.

Rachel's primary problem was holding toxins, so she started there, moved to metals and Lyme.

Both of us are getting better. You might just be more like Rachel than you are like me .... not that Lyme is not there, but maybe it's not your primary problem. I actually think ART would be a really good idea for you if you had something like that near you. That way you don't have to guess what's going on.

I also know that I still have Lyme .... but Lyme is not making me sick. I believe that my immune system has been good at taking care of it all these years, so I think the idea for me is to beat the Lyme down enough and strengthen my immune system enough so that I can stay healthy on my own .... so that's where I am now, taking just enough meds to be symptom-free, taking things for immune support, supporting my thyroid and adrenals, and working on detox.

I'm not there yet with the babs though!

I think this is the goal of all of us .... to find the stressors, remove them, strengthen the immune system, and live symptom-free even though we may always need to deal with the fact that we were ill so that we prevent it from happening again.

I am so glad, btw, that I didn't ignore the air hunger. ;) I'm herxing a little from the Malarone already. I feel a little intoxicated ... my back aches a little ... I'd say I'm about 85% today though ... I worked out for 30 minutes, got tired fast in the gym. My air hunger is already improving ... I was going to wash my sheets today, but I figured that I'll probably have a terrible sweat again tonight with it being my first day back on Malarone so I waited, LOL.

We are REALLY getting dumped on right now with the snow! Adam just called and is about a two hour drive away ... with the snow it could take him all night because of accidents ... so he pulled over and checked in to a hotel. My kids are out sledding. :) (at the cemetery, LOL) .... it's supposed to turn into an ice storm later, so that makes for bad sledding. I wish it would just stay snow.

We bought enough food today at Wild Oats that we should be able to stay home all day tomorrow. :D Well, I'll go to work though .... I'm hourly, so I have to go to get paid, LOL.

AndreaB Contributor

Carla,

Sorry about Adam not being able to make it home tonight. :(

Hope the children have fun with the snow before the ice storm hits. Those are no fun.

aprilh Apprentice

Yep, I believe it was 41. I do think that if i do have lyme its not my primary stressor. I think possibly the metals and yeast are. So that basically leaves metals. The yeast won't go until the metals do.

My problem is that I have trouble detoxing because of my liver. So he gave me a glutathione supplement and policansinol??? msp. Said it might help my liver work better then in a month he might see if I can do the DMSA detoxing.

He thinks i probably moved metals and stored them in my liver last summer when I tried that cilantro detox on my own without knowing what I was doing then I did 2 days of castor oil packs on the liver. MORE IS NOT BETTER!

I moved metals because I was REALLY bad off. I thought I might die seriously. I prayed that I would wake up in the morning. I finally learned of AC and detox baths and that seemed to help. But my liver has not been right since. So, guess that's what I need to work on.

Anyone have any other suggestions for liver support?

How do you get to lyme chat again? Do you have to have a special sign in?

RPM,

Sounds like total back up of toxins. Usually means you need liver support (like me!). Although my tongue is not that color.

CarlaB Enthusiast
Sorry about Adam not being able to make it home tonight. :(

Thanks, Andrea. :) I talked him into NOT coming home, LOL. He travels so much, I'm used to him being gone .... but I didn't feel like it was safe to be driving in ... he thinks he's invincible ....

You know, my kids idea of DARK and my idea of DARK are two different things! LOL I told them to be home by dark! We are really under a beautiful blanket of snow! I'd like to continue to sit here and watch it, but I need to go take my sauna!

CarlaB Enthusiast
How do you get to lyme chat again? Do you have to have a special sign in?

www.lymediseaseaudio.com/lymechat.htm

Milk Thistle is good for the liver.

What about coffee enemas? :D

confusedks Enthusiast
What about coffee enemas? :D

Carla, I am going tonight to go and buy the stuff for ecoffee! I am going to do it!!! LOL! :lol: I don't even know if we have coffee?! :blink:


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Well, then, Kassandra, you need to buy coffee, too!!! Be sure it's organic and has caffeine! Have fun with that, LOL. (Donna, I know your reading this in secret, secretly thinking of trying it yourself).

Rpm999 Contributor
RPM,

Sounds like total back up of toxins. Usually means you need liver support (like me!). Although my tongue is not that color.

yeah, my urine is the same way....sometimes it's really foggy too....i remember you asking what it was like before, usually the first time i go to the bathroom it's really strong and then the next time it's almost always clear =\ to me it sounds like maybe my body has like no nutrients

confusedks Enthusiast
Well, then, Kassandra, you need to buy coffee, too!!! Be sure it's organic and has caffeine! Have fun with that, LOL. (Donna, I know your reading this in secret, secretly thinking of trying it yourself).

LOL! :lol: Yea Donna! You should try it too! I keep thinking about it, then I think it's not a bad idea. Then, I think about ACTUALLY doing it, and I freak out! LOL!

dlp252 Apprentice
I must admit thought I expected them to be more candy bar like (like a chocolate coated luna bar perhaps?), they are actualy quite healthy tasting, nutty and seedy, which I like.

A little more candy bar like if you slather nut butter all over it. :ph34r:

I thought maybe if I was positive it would give me a clue on where to go with my daughters leg/bone pain.

Aw, I'm sorry that wasn't the answer (well, didn't want you to have lyme, but just wanted you to be closer to the answer).

AAAAUUUGGGGHHH! The craving monster has awakened! And it wants donuts!

Mine was awaken today as well...I was not so successful. I finally pleaded with one of the lawyers to remove the offending stupid chocolate hearts from my presence. He complied, but not until I had eaten 9. :ph34r: Stupid candida. :angry:

ah i've always been wondering this, does anybody know what could make your tongue have this tone: sometimes it looks like rust, like a yellow/brown/orangeish coating, kind of like copper or something

Gosh, nope. Mine is always coated, but it's more whitish.

Well, then, Kassandra, you need to buy coffee, too!!! Be sure it's organic and has caffeine! Have fun with that, LOL. (Donna, I know your reading this in secret, secretly thinking of trying it yourself).

LOL! :lol: Yea Donna! You should try it too! I keep thinking about it, then I think it's not a bad idea. Then, I think about ACTUALLY doing it, and I freak out! LOL!

LALALALALALALALALALALALA Still NOT listening!!!! LALALALALALALALALALA

aprilh Apprentice
www.lymediseaseaudio.com/lymechat.htm

Milk Thistle is good for the liver.

What about coffee enemas? :D

Going back on the e-coffee's. I have trouble with it for some reason. :(

Anybody take glutathione? That is one of the new supps I am starting. Is it okay to continue my other supps along with?

aprilh Apprentice
yeah, my urine is the same way....sometimes it's really foggy too....i remember you asking what it was like before, usually the first time i go to the bathroom it's really strong and then the next time it's almost always clear =\ to me it sounds like maybe my body has like no nutrients

How long had it been before going to the bathroom did it look foggy? Are you drinking plenty of water?

If you are very toxic your body may not be utilyzing minerals correctly.

Are you taking any nutrional support?

Did you ever get in with Art or Bioset?

Green12 Enthusiast
ah i've always been wondering this, does anybody know what could make your tongue have this tone: sometimes it looks like rust, like a yellow/brown/orangeish coating, kind of like copper or something

Like Donna, I usually only have a white coating, or lots of bumps along the side when my symptoms invovle the tongue.

Have you been to an acupuncturist before? They do tongue diagnosis.

Yep, I believe it was 41. I do think that if i do have lyme its not my primary stressor. I think possibly the metals and yeast are. So that basically leaves metals. The yeast won't go until the metals do.

My problem is that I have trouble detoxing because of my liver. So he gave me a glutathione supplement and policansinol??? msp. Said it might help my liver work better then in a month he might see if I can do the DMSA detoxing.

He thinks i probably moved metals and stored them in my liver last summer when I tried that cilantro detox on my own without knowing what I was doing then I did 2 days of castor oil packs on the liver. MORE IS NOT BETTER!

I moved metals because I was REALLY bad off. I thought I might die seriously. I prayed that I would wake up in the morning. I finally learned of AC and detox baths and that seemed to help. But my liver has not been right since. So, guess that's what I need to work on.

Anyone have any other suggestions for liver support?

I'm confused as to why you weren't given a clinical diagnosis, because it seems to me you are presenting many of the symptoms, but I don't really understand the lyme test interpretations so I really don't know what I am talking about....

I am glad he is addressing your liver.

I wish you could find someone to do ART, or even Bioset/Bioscan because they could work with your liver. I am on a homeopathic liver detox from UNDA, schizandra complex also is a liver supporting herbal mix I was on for a while through my acupuncturist. Dandelion root is also good for liver support, you can get it in bulk and make tea.

If you continue to go to acupuncture, they can do liver supporting points.

yeah, my urine is the same way....sometimes it's really foggy too....i remember you asking what it was like before, usually the first time i go to the bathroom it's really strong and then the next time it's almost always clear =\ to me it sounds like maybe my body has like no nutrients

Urine color, or concentration, can also change if you are taking certain supplements. I think the B vitamins might be what makes it dark.

If you are dehydrated it can also be dark, concentrated.

LOL! :lol: Yea Donna! You should try it too! I keep thinking about it, then I think it's not a bad idea. Then, I think about ACTUALLY doing it, and I freak out! LOL!

:lol:

A little more candy bar like if you slather nut butter all over it. :ph34r:

:lol:

Or what about slathering it with melted chocolate :huh:

aprilh Apprentice

Oh how I wish I could find Art too! I was thinking it would help with figuring out my daughters issues. If the hematologist has no answers I think I might be able to talk my hubby into spending the money to take her to Art and I'll just make an appt for me while were there. We will have to travel to find someone.

I may have found a Bioset person but I thought that was more about food allergies??? Maybe I should check that out first?

I think he doesn't think I am presenting with many of the symptoms that most lyme people do. I typically am not that bad off. I don't have a lot of the common symptoms. he mentioned retesting in 3 months. Not sure what would change it wasn't a abx challenge, though. I have been bitten many times. He tries to act within the bounds of the medical laws here so I think that might hold him back a bit.

He said according to the CDC I wouldn't be positive. I said that I didn't trust the CDC's criteria for that. He agreed but maybe that is what he is worried about.

Clark Bent as Stupor-Man Contributor

well, I figured it would be easier to skip trying all the alternative suggestions to put on weight and go straight for some staples like cheesecake and pizza... don't know why nobody suggested that B)

went up to the risotteria on Sunday so everything was gluten-free, but certainly not dairy-free, low in carbs, or good for candida... considering it was the first time I've eaten out in 2 years (which was incidentally also the last time I had dairy) and that I ate a number of different items available (breadsticks, meatballs, some chicken risotto meal, a little pizza, cheesecake, brownie) for dinner and then with a couple meals later that night, it was surprising how little I've reacted this week, relatively speaking...

Monday I didn't feel great and probably would have called out from work if it wasn't a holiday though the symptoms were nothing overwhelming and I was able to get stuff done around my apartment... and since then, I've worked my usual current hours (which are increased over what I had been working for a year or so anyway), played ball, etc. and felt fine for the most part with maybe a bit of a worse headache than usual early Tuesday... I'll probably try eating out again sometime in the next couple months at a place like PF Changs and go with a meal more typical of what I eat on a daily basis (less carbs, higher protein), but either way, I've been pleasantly surprised how I've felt this week... to be honest, it seems that I might have reacted just as strongly from a couple spoonfuls of sunflower butter I tried recently as I did to all the food from the Risotteria...

anyway, thanks for the birthday wishes...

as an aside, I just ordered theralac per my LLMD's recommendation... I know a few people here (carla comes to mind) are taking/were taking it, and I've been considering trying another probiotic for a while... my LLMD also recommended Transfer Factor, which I'm gonna check out a little more before ordering... don't know if anyone is currently taking it though I've seen rachel mention it as well as autism MBs if memory serves me correctly..

CarlaB Enthusiast
Anybody take glutathione? That is one of the new supps I am starting. Is it okay to continue my other supps along with?
I have a prescription glutathione cream. The jury's still out.

as an aside, I just ordered theralac per my LLMD's recommendation... I know a few people here (carla comes to mind) are taking/were taking it, and I've been considering trying another probiotic for a while... my LLMD also recommended Transfer Factor, which I'm gonna check out a little more before ordering... don't know if anyone is currently taking it though I've seen rachel mention it as well as autism MBs if memory serves me correctly..

I still take it. :) I also take Ultra Flora. I've stopped the VSL#3 now that I'm off the heavy abx.

mftnchn Explorer
When do you leave for China?

March 29...

mftnchn Explorer
Sherry, was it you who mentioned you have problems taking your supplements, something with your throat?

I was curious what you were instructed to do to help this, something with your pallette??

Yep, that's me. I am using the small laser pointer. It is just a normal red laser pointer, with a little piece of plastic tubing which she cut herself it looks like, about an inch or a bit more, it slides on the end of the pointer and I put a little vial of water down into a hole in the tubing so that the laser points through the vial and makes a line of light instead of one point.

I go up and down with this on my throat, behind my ears and back of the head/neck while swallowing, rubbing my tongue along my upper palatte, and sucking on a straw plus swallowing. Supposed to do 2-3 times a day, 3 minutes each. I haven't quite got that down yet.

Sherry

mftnchn Explorer
:D :D :D YAY!!!! :D :D :D Hey, everyone, Kassandra's coming to visit! :wub:

So cool!!! That should be so fun for you both!

mftnchn Explorer
My llmd has this. He called it something else. It sounded sort of scary to me! How was it?

The HOT was no biggie to me. If you have gotten any IV meds by syringe, it is just similar. I guess if someone was queasy they could not look at the pink/red stuff infusing?

Sherry

mftnchn Explorer
my LLMD also recommended Transfer Factor, which I'm gonna check out a little more before ordering... don't know if anyone is currently taking it though I've seen rachel mention it as well as autism MBs if memory serves me correctly..

I have taken TF for years, the main hassle is I travel a lot and it is fragile and has to be kept cool.

I didn't test for it well in my last ART so I am not using it now. Yay! One less hassle and it is frighteningly expensive.

Sherry

mftnchn Explorer

Carla, sorry about the babs return, hope the M does the trick and without a lot of down time.

Yes, it is hard to be thinking of going to China with my daughter making plans. She and her fiance are both very laid back, so they are going to wait a year to get married so they can enjoy the whole process. The hard part is I will likely be in China when it is time to shop for her dress. ):

Rpm999 Contributor
How long had it been before going to the bathroom did it look foggy? Are you drinking plenty of water?

If you are very toxic your body may not be utilyzing minerals correctly.

Are you taking any nutrional support?

Did you ever get in with Art or Bioset?

i have no clue, just sometimes you can barely see through it...i'm not taking any support, i'm going to see the bioset woman soon so hopefully i'll get a better idea and see because i feel very sensitive....i'm in some dilemma though, i feel like when i drink a lot, my body feels paralyzed and i can't stop crying randomly...i feel like my body can't even handle that, could be my liver right? once that is helped, i'm sure i won't be as reactant and will be able to handle a lot more

for some reason i'm ALWAYS thirsty/hungry....it's more like cravings though, but just from the cravings i could probably drink and eat endlessly and still feel empty/queezy, yet since i'm dealing with these things, feel bloated at the same time because like i said, it's more craving, not hunger...that's more of a recent thing, same with my body not being able to handle much, so probably my liver between whatever the dye did....i've been sick for 12 months, yet before the die which was about 10 months, i had no appetite at all, which would have made things easier! haha

the thing is, i just feel like my body couldn't handle feeling worst...like a herx/die-off/overload, so it's probably good to help a few things before anything, right? i couldn't deal with neuro symptoms getting worst or anything, it scares me...it just dazzles me how i've been sick for only a year and i'm young, yet have more symptoms than some people who are untreated for years lol, got hit with it all at once which is horrible yet good in a way

Urine color, or concentration, can also change if you are taking certain supplements. I think the B vitamins might be what makes it dark.

If you are dehydrated it can also be dark, concentrated.

i'm not taking any supplements, so probably i'm dehydrated in SOME sense

mftnchn Explorer

Carla, sorry about the babs return, hope the M does the trick and without a lot of down time.

Yes, it is hard to be thinking of going to China with my daughter making plans. She and her fiance are both very laid back, so they are going to wait a year to get married so they can enjoy the whole process. The hard part is I will likely be in China when it is time to shop for her dress. ):

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    2. - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    3. - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,922
    • Most Online (within 30 mins)
      7,748

    gizmoziz
    Newest Member
    gizmoziz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.