Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I would think you'd be able to go next year......but I'm not a doctor. :D

Yeah...but you're a good friend who says the right things. :wub:

I really want to go to Disneyland....and also on a cruise somewhere. I've been talking about going to DL since I thought I only needed to be gluten-free. I read posts about DL resorts serving gluten free pancakes shaped like mickey....and ever since then I've really wanted to go. :(

I keep saying "when I get better I'm going to Disneyland".

But maybe I will keep saying this year after year...

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

Celiac.com Sponsor (A8-M):


  • Replies 33.4k
  • Created
  • Last Reply
AndreaB Contributor
AndreaB
Posted
Yeah...but you're a good friend who says the right things. :wub:

But maybe I will keep saying this year after year...

I try. :)

I believe you will be able to go. Bioset #1 is going to be working with you. :D

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

Oh yeah...I forgot to tell you guys...

a couple days ago at work I was sitting in the break room and people were talking about taking care of your body cuz it can break down (dont I know :rolleyes: ) and then one lady (that I've known for like 17 years now) said something about having really bad reflux and burning in her throat.

She said she gets it from everything she eats and it gets worse when she tries to quit smoking....so she doesnt quit because she has less acid reflux.

I remembered that smoking can *protect* people from getting Celiac so I asked her what foods bother her....she said all foods and she said that she doesnt eat junk or fast food or greasy food. I said "What about bread?" She said "Oh yeah....especially WHEAT....maybe I'm allergic to wheat?" She said she is going back to the Dr.

I wrote down celiac disease on a piece of paper and told her to ask to be tested. I told her a little bit about it. :)

I dont have much faith in the Dr.'s though. <_<

happygirl Collaborator
happygirl
Posted

x

happygirl Collaborator
happygirl
Posted

x

AndreaB Contributor
AndreaB
Posted

x

happygirl Collaborator
happygirl
Posted

x

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

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted
  • Author
rachel, im not sure i understand your question about lyme net. are there numerous places to read it? i've been reading it on Lame Advertisement

Laura,

I was asking if its the LymeNET message board that you've been on. There are quite a few Lyme boards....was just wondering. I havent found a "favorite" yet. I wonder which board is the best and most informative? So far I find myself spending alot of time on LymeNET.

rachel or rinne,

I have a copy of my regular lab work from JH---I asked to be tested for Lyme and I can't figure out which one it was...I don't see one that looks like a western blot test. I'm confused. (I was trying to get my records together to send to my new doc). Could I sent them to one of you to look at?

What does the "normal test" say? Western Blot?

You can send me the results if you want....I'll *try* to figure it out. They may not have ordered a Western Blot....they might have just did ELISA testing.

happygirl Collaborator
happygirl
Posted

x

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
also-of interest. I had an elevated lymphocyte level....any opinions? I've read that it can be linked to viruses, including EBV and CMV.

Not really sure. :unsure:

All of my bloodwork was pretty normal. I had elevated liver enzymes only once...interestingly after I'd just been on 2 weeks of antibiotics (one of the ones used to treat Lyme). <_<

Hmmm...I wonder if that means anything. :unsure:

happygirl Collaborator
happygirl
Posted

x

rinne Apprentice
rinne
Posted
Oh...I'm proud of you too....for keeping up with all the research and being so proactive in trying to get answers for yourself. I knew you were a fighter since your very first post here. ;)

Me too. :)

oh your story sounds so familiar to me. I was diagnosed with celiac in feb. 06 and I thougth "there my answer to my pain' I was so very excited.

Welcome, we're always glad to meet new people. Post away. :)

So it can always be men's fault???? It's probably only in male ticks, too! :lol:

LMAO

###

happygirl Collaborator
happygirl
Posted

x

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
my liver enzymes are almost always elevated.

the head research nurse at NIH (for the doc I was seeing there) told me that if you haven't fasted before your bloodwork, there is a documented phenomenon about elevated bilirubin levels. Something about them rising after eating, but they don't know why, but it is normal. (she was the nurse that I loved, and actually knew a lot)

Laura,

I dont think its normal to always have elevated liver enzymes. I've never heard that. :unsure:

My liver enzymes have always been normal....and my livers been tested numerous times over the past 4 years. I never fasted before the bloodwork. When they came back high that one time...they asked if I'd been on any medications. I told them I'd been on the antibiotics and they said that was probably why they were elevated but they retested to be sure....and they were normal again.

Its common for Celiacs to have elevated liver enzymes but I wouldnt say its "normal" or that everyone has them after eating. I would think that if that were true and research has shown this....then this would be taken into consideration as far as what the normal ranges are.

When the liver enzymes are elevated....it ususally means something isnt right.

happygirl Collaborator
happygirl
Posted

x

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

Laura,

Did you email me? I'm on my moms AOL account but I can sign off and check my mail.

sorry, rach, I should have clarified. I was talking specifically about the bilirubin. It is usually the only one of mine which is elevated, although mildly. I mentioned it to the head research nurse, and she said it is commonly seen even in healthy patients for the above mentioned reason. my other liver enzymes are all ok :)

oh...ok. :)

Laura...I didnt get any mail??

happygirl Collaborator
happygirl
Posted

x

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

Somebody sent me a BIG newbie package on the Lyme board. I'll be busy with this for awhile. :lol:

happygirl Collaborator
happygirl
Posted

.

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

OMG....I'm wanting to pull all my hair out right now....I'm soooo frusterated!!

My mom just says to me..."OMG...you should have seen my dance instructor tonight.....he was SOOOO congested and I asked him if he was sick and he said "NO...its ALLERGIES." She's very dramatic as she's telling me about her poor dance instructor and how he's ALLERGIC to wood and now that its winter people are BURNING WOOD and he has to LIVE with this!! So she says..."BUT...he's doing it....he's just DEALING WITH IT...and living his life.

OMG...She always bursts out with stuff like this and THEN doesnt understand why I get upset. :angry:

HELLO...I'm allergic to freakin EVERYTHING!!

She doesnt get it at all...she's just never gonna understand. OMG...If only I JUST had a freakin stuffy nose around WOOD. Am I suppossed to lead by this guy's example?? As if we even *remotely* have the same kind of stuff going on!! <_<

The last time it was about my Godmother and how when she drinks redwine she gets stuffed up and cant breathe well...."Rachel...lots of people have allergies and they just DEAL WITH IT."

Obviously HER problem isnt quite as severe and OBVIOUSLY its not bad enough to make her STOP drinking the red wine!! :angry:

ok...thats my rant for tonight. :(

I'm gonna send you that package now Laura.

Ok...I sent it...

Prepare to be overwhelmed. :lol:

AndreaB Contributor
AndreaB
Posted

Rachel,

I'm sorry. :(

I'll be waiting for all your new info when you have time to read and digest everything. :)

miamia Rookie
miamia
Posted
Somebody sent me a BIG newbie package on the Lyme board. I'll be busy with this for awhile. :lol:

What does the package include-I'm curious

happygirl Collaborator
happygirl
Posted

x

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

I'm sorry. :(

Andrea....its ok...my mom just doesnt get it. She doesnt get how I could "smell" stuff long after its gone and if she cant smell it. Thats why she's going to my Dr. appt. on Monday....so she could ask the Dr.

He knows all about chemical sensitivities so maybe she'll "get it" when the Dr. explains it. :)

What does the package include-I'm curious

miamia...its like 21 pages of links

lots of Lyme scientificness

Rachel, Yeah, I didn't think there was a Lyme test on there! He told me he was going to run it, but apparently he didn't. Good to know that I am not crazy! ;)

Nope you're not crazy! No worries though...even if they'd ordered it...it would have been one of those tests with only like 60% sensitivity. You'll get tested soon enough....is it Wednesday??

AndreaB Contributor
AndreaB
Posted

Laura,

Why am I not too surprised that the doctor didn't run a lyme test? <_<

Can't wait until you see the new doctor.

Rachel

I'll be interested to see if mom gets it after your appointment on Monday. :)

Archived

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

Go to topic listing

  • 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. Itsabit
      - Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis
      10

      SkinSafe

    2. Itsabit
      - Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis
      10

      SkinSafe

    3. trents
      - trents replied to Jack Common's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      33

      What should I do with these test results?

      From the article you linked: "Currently, there are no recommended methods to test for non-celiac gluten sensitivity." "No recommended methods" is the key phrase here. Just on the anecdotal evidence of reading many posts on this forum, I think we sometimes see some elevated igg test scores with NCGS. They seem to be mildly elevated in these cases, not high...
    4. Itsabit
      - Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis
      10

      SkinSafe

      Thank you for your reply. I’m beginning to think of iodine as another culprit in this, as much as I fear it. I will say my rash is extreme and diffuse - it’s everywhere! I first had it on both sides of my neck in the summer of 2023. My PCP and dermatologist at the time, thought it was a reaction to jewelry I was wearing, even though I had been wearing the...
    5. Itsabit
      - Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis
      10

      SkinSafe

      Reply to Russ H, Thank you for your input. As a nurse for 46 years I was aware of much of this. However, as a new member to dermatitis herpetiformis, I have been reading and researching everything I can about it in order to educate and help myself. I was hoping that the oral Dapsone would help to alleviate the itching. I knew the rash would take longer...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,328
    • Most Online (within 30 mins)
      7,748
    Food4thot
    Newest Member
    Food4thot
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Itsabit
      SkinSafe

      By Itsabit · Posted

    • Itsabit
      SkinSafe

      By Itsabit · Posted

    • trents
      What should I do with these test results?

      By trents · Posted

      From the article you linked: "Currently, there are no recommended methods to test for non-celiac gluten sensitivity." "No recommended methods" is the key phrase here. Just on the anecdotal evidence of reading many posts on this forum, I think we sometimes see some elevated igg test scores with NCGS. They seem to be mildly elevated in these cases, not high high.
    • Itsabit
      SkinSafe

      By Itsabit · Posted

      Thank you for your reply. I’m beginning to think of iodine as another culprit in this, as much as I fear it. I will say my rash is extreme and diffuse - it’s everywhere! I first had it on both sides of my neck in the summer of 2023. My PCP and dermatologist at the time, thought it was a reaction to jewelry I was wearing, even though I had been wearing the same necklaces for literally years with no reaction. The dermatologist at the time repeated over and over again that “allergies are acquired.” Which I knew. But I was not reacting to any other jewelry I was wearing. So it didn’t make any sense to me that it would only be from my necklaces. Anyway, it abated on it’s own. Only to come back with a vengeance months later - and I had not worn any necklaces at all. And the rash involved more area. I was put on Prednisone (oral steroid) taper and it worked well, and the itch and eventually the rash went away. Another trip to a different dermatologist at that time, prior to starting the Prednisone, told me to change all of my hygiene products like soap and shampoo, and to slather on Vaseline. None of which worked, hence the Prednisone. Needless to say, the itch and subsequent rash returned - and now spread everywhere, not just the hollows on both sides of my neck. It’s there, on my upper chest and left breast, both upper arms front and back, and elbows, my entire back, down both of my hips and buttocks and the front of my right thigh. Now the back of that right thigh is starting to itch as well. Also my lower right forearm and middle knuckle on my left hand since going gluten free. I’m just itching everywhere all the time. It keeps me awake, or wakes me up when I do fall asleep. I’m trying my best not to scratch, but it’s nearly impossible! I’ve been using a dry washcloth to rub instead of scratching. And I have used cool wet washcloths which help, but only lasts for a few minutes before starting up again. I’m pretty much at my wit’s end. Just waiting for something to indicate what’s really going on so I can do SOMETHING to stop it! 
    • Itsabit
      SkinSafe

      By Itsabit · Posted

      Reply to Russ H, Thank you for your input. As a nurse for 46 years I was aware of much of this. However, as a new member to dermatitis herpetiformis, I have been reading and researching everything I can about it in order to educate and help myself. I was hoping that the oral Dapsone would help to alleviate the itching. I knew the rash would take longer to abate. Instead of relief from the Dapsone, I had adverse reactions so had to stop it. After 2 months on it, if hadn’t helped with the itching at all, and I understand it usually helps in the first few days if it’s going to. My itch and rash actually got worse on the Dapsone and with going gluten free - which lead me to question whether I was getting glutined from other products I am using. It’s like a huge puzzle trying to put all these pieces together to somehow make it fit and make sense. Right now, myself and my doctor are perplexed. 
×
×
  • Create New...