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

Frustrated!

RoseNNJ

By RoseNNJ
in Doctors

Recommended Posts

RoseNNJ Apprentice
RoseNNJ
Posted
:angry: I called my Doctor last week to ask about the Levsin. He told me previously to go off it. I had D again and wanted to know if I could take it again. Never got a call back. Called again on Friday. I was a mess. I ended up with a huge cold sore, an earache and migraine, along with the D. I asked the receptionist to pleave have him call me. I received a call back fro her stating this "if you need medication call the GI". I was like what??? I don't need medication, I have a question about the Levsin. Then she says, who presribed it? I wanted to reach in the phone and choke her! Okay we will get back to you. Well surprise, they never did!
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

Oh Rose--how awful :angry: . I know that feeling of wanting to reach thru the phone and strangle someone! Are you feeling any better today?

RoseNNJ Apprentice
RoseNNJ
Posted
  • Author

I am better today. Thank you for asking :) Eating gluten again is kicking my butt.

Guest Robbin
Guest Robbin
Posted

Rose, I hope you are better, too :) Do you get cold sores from getting gluten?

RoseNNJ Apprentice
RoseNNJ
Posted
  • Author

I have been getting them since I was a kid. They got so bad my last Dr. gave me a perscription for Denavir. If this one would call me back I could get a refill. They normaly come when I am run down and stressed. Which is alot LOL

jenvan Collaborator
jenvan
Posted

Rose-

Are you doing a gluten challenge right now?

RoseNNJ Apprentice
RoseNNJ
Posted
  • Author

I was told to eat Gluten this week. I have the Biopsy on Friday. :(

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

Celiac.com Sponsor (A8-M):


Guest Robbin
Guest Robbin
Posted

Take care, Rose and we'll be thinking of you Friday. :)

Guest nini
Guest nini
Posted

Rose, why oh why are they making you eat gluten and making you do a biopsy? How long were you gluten-free before? Any length of time is going to completely screw up any chance of a positive biopsy result. I don't know what you are expecting to find...

The GI Celiac Specialist that spoke at our last support group meeting said that when someone has been gluten-free for any length of time and comes to her and says they feel better off gluten, SHE NEVER EVER makes them go back to eating gluten for the sake of any tests.

Please oh please reconsider this. If gluten makes you feel bad and you feel better off of gluten, then please stop eating gluten and forego anymore testing. It's crazy. The biopsy is no longer the gold standard... there are many Dr.s that are still clinging to this outdated methodology, the biopsy can ONLY confirm damage IF it finds it IF they take enough samples, IF they lab knows what they are looking for IF they consider any of the early stages of the disease or if they only look for total villous atrophy. I have read so much information and talked to experts about this, the biopsy is on it's way out. A positive dietary response is THE MOST VALID DIAGNOSTIC TOOL...

I just hate to see anyone suffer more than they need to. Please reconsider.

RoseNNJ Apprentice
RoseNNJ
Posted
  • Author

I was Gluten free for about 3 weeks. Went back to Gluten for a week today. Tomorrow is the Biopsy. I am done after this! My regular dr has not even returned any of my phone calls! I will update this weekend. Thank you all so much! Hugs

  • 2 weeks later...
Jnkmnky Collaborator
Jnkmnky
Posted

For cold sores try taking lysine. It's a suppliment. It really helps. It's not a chemical pharmeceutical.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,013
    • Most Online (within 30 mins)
      7,748
    Dragon1
    Newest Member
    Dragon1
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Celiac getting dentures

      By trents · Posted

      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
    • JoJo0611
      Chances of being coeliac

      By JoJo0611 · Posted

      Thank you all. 
    • Martha Mitchell
      Celiac getting dentures

      By Martha Mitchell · Posted

      Scott I also have different symptoms than most people. It affects me bad. Stomach ache, headache, nauseous, heart racing, whole body shaking, can't walk then my throat starts to close. It attacks my nervous system. The only thing that saves me is a 1/2 of Xanax...it calms down my nervous system 
    • Martha Mitchell
      Celiac getting dentures

      By Martha Mitchell · Posted

      Scott Adams. I was dealing with a DR that didn't care about me being celiac. I repeatedly told him that I was celiac and is everything gluten-free. He put an acrylic lens from j&j. I called the company to ask about gluten and was told yes that the acrylic they use has gluten....then they back tracked immediately and stopped talking to me. The Dr didn't care that I was having issues. It took me 6 months and a lot of sickness to get it removed.... which can only happen within 6 months. The Dr that took it out said that it was fused and that's why I lost vision. If they would have removed it right away everything would be fine. He put in a silicone one that was gluten-free and I've had no issues at all in the other eye. Do not do acrylic!
    • Scott Adams
      Celiac getting dentures

      By Scott Adams · Posted

      Welcome @Martha Mitchell, I too would like to know more about your prior lenses, and especially about the potential of gluten in lenses. In theory this should not harm most celiacs, as the autoimmune reaction normally begins in the gut, however, in those who are super sensitive or have dermatitis herpetiformis it may be a potential issue. 
×
×
  • 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.