Jump to content

  • 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):

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

  • 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. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Mimiof2's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      9

      EDG 3 years ago fine, now it shows focal villous blunting,

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"
    2. Scott Adams
      0

      Woman Refuses to Share Gluten-Free Cake—And Sparks a Bigger Conversation

    3. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      361

      Terrible Neurological Symptoms

      My dad had an Abdominal Aortic Aneurysm. Fortunately, it was discovered during an exam. The doctor could feel my dad's heart beating in his stomach/abdomen. The aneurysm burst when the doctor first touched it in surgery. Since he was already hooked up to the bypass machine, my dad survived ten more years. Close call! Triple A's can press on the...
    4. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to HectorConvector's topic in Related Issues & Disorders
      361

      Terrible Neurological Symptoms

      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and...
    5. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      361

      Terrible Neurological Symptoms

      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,072
    • Most Online (within 30 mins)
      10,442
    Liley
    Newest Member
    Liley
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
    • Aretaeus Cappadocia
      Terrible Neurological Symptoms

      By Aretaeus Cappadocia · Posted

      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and it's something else entirely. @Scott Adams's mention of shingles is interesting. It seems possible but unlikely to me, but who knows. However, I am writing here to reinforce the idea of getting the shingles vaccine. Ask anyone who has ever had shingles and they will bend your ear telling you how bad it is. I watched my wife go through it and it scared the bejeebers out of me. Even if you had the chicken pox vaccine, you really want to get the shingles vaccine.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes and goes randomly as before again.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      I had MRI scan a few years ago showing everything normal, and now it's no longer triggering the nerve pain when I bow my head today - it only seemed to happen yesterday, and that was the only time it happened! Just seemed weird as no movement has caused my usual nerve pain before. It's normally just random.
×
×
  • Create New...