Frustrated!

[RoseNNJ]

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!

[jerseyangel]

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

[RoseNNJ]

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

[Guest Robbin]

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

[RoseNNJ]

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]

Rose-

Are you doing a gluten challenge right now?

[RoseNNJ]

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

[Guest Robbin]

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

[Guest nini]

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 there are many Dr.s that are still clinging to this outdated methodology, the biopsy can ONLY confirm damage IF it finds it IF they take enough samples, IF they lab knows what they are looking for IF they consider any of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]

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

[Jnkmnky]

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