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

dlp252 Apprentice
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!!!


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
miamia Rookie
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
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

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

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
.....

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
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


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



Celiac.com Sponsor (A8-M):



mftnchn Explorer

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
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
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
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

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

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
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

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
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

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

Sherry,

Are you coming stateside home?

Guest LittleMissAllergy

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

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

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
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

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

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

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
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. :)

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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

    2. - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

    3. - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

    4. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

    5. - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

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

    • Total Members
      132,697
    • Most Online (within 30 mins)
      7,748

    Nicole Poirier
    Newest Member
    Nicole Poirier
    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

    • xxnonamexx
      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • 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.