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

  • 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. Anne G
      - Anne G posted a topic in Related Issues & Disorders
      0

      celiac disease and braces

      Hello, My 17 yr old daughter was diagnosed with celiac disease 2 yrs ago. She does not have gum disease and no history of cavities. Her dentist is recommending braces for her lower teeth but I read it may worsen gum recession or possibly increase cavity risk which I know are already issues for patients with celiac. Has anyone here had braces and...
    2. trents
      - trents replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    3. HAUS
      - HAUS posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free...
    4. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

      Years ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came...
    5. Rejoicephd
      - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

      Wow what a helpful article!! I am just seeing this now but I hosted a small group of family for Thanksgiving at my house this year and I did some of these things- got a butterball gluten-free turkey, got gluten-free stuffing, had a few gluten-free sides, and a gluten-free nothing-Bundt-cake. I had other non gluten-free things there too for others, and I also...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,434
    • Most Online (within 30 mins)
      7,748
    Malia Ana
    Newest Member
    Malia Ana
    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

    • Anne G
      celiac disease and braces

      By Anne G · Posted

      Hello, My 17 yr old daughter was diagnosed with celiac disease 2 yrs ago. She does not have gum disease and no history of cavities. Her dentist is recommending braces for her lower teeth but I read it may worsen gum recession or possibly increase cavity risk which I know are already issues for patients with celiac. Has anyone here had braces and did it cause any problems or issues with gum recession?  Her dentist seemed oblivious that celiac patients are at higher risk of gum disease /cavities. Her bottom teeth are crooked but are pretty hidden even when she smiles. Thank you!!
    • trents
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By trents · Posted

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    • HAUS
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By HAUS · Posted

      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
×
×
  • 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.