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Just Back From Doctor's


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15 replies to this topic

#1 julie5914

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Posted 17 June 2005 - 10:48 AM

So I thought from what they said on the phone that I would be coming in today to just see the nurse practicioner and schedule an endoscopy. That wasn't at all how it went. She was awesome. She looked at the blood tests and after consulting with the doctor decided endoscopy was not necessary and to start the gluten-free diet immediately. She said to follow it religiously and come back in a month to check the blood levels to see if they have gone down.

She also sent me to the lab to have blood drawn to see if my anemia has returned and to see if I have h.pylori again (didn't know there was a blood test for this). She also wants me to have a upper GI Xray done Monday to check for an ulcer. She was really great.

Then I had to come straight to an office lunch at a restaurant knowing I should be gluten free right away, and it hit how hard this was going to be. I saw bread and cake everywhere. I was so hungry and of course they brought out bread for everyone to munch on, and I had to tell everyone why I wasn't eating bread. I felt so singled out. I ordered a salmon salad not knowing how to ask the server a bunch of questions, and it came with the salmon on a piece of bread and the salad to the side. Argh!

Anyway, I will learn. I am so glad I have you guys for help. It is good to finally have a diagnosis.
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Blood work positive
Dx with IBS 5 years ago
Dx with Celiac and gluten-free since 6/17/05

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#2 LaurieAnn13

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Posted 17 June 2005 - 10:59 AM

Well having a diagnosis must be a huge relief!!! But yes, learning how to deal with that diagnosis is a whole other story!! It does get easier though, I promise!

I personally found that reading books really helped me, one of my favorites is called: Against the Grain, it is a great book written from a personal perspective that made me feel not so alone - although I did not have this great website to consult!

Good luck to you...

Laurie
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Positive blood test results
gluten-free since September 2001
Denver, Colorado

#3 celiac3270

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Posted 19 June 2005 - 08:00 PM

No biopsy...then your doctor is going against the celiac experts and the findings of the NIH in their Celiac consensus, which recommends a endo. for a celiac diagnosis.

Congratulations all the same...in a very twisted way :wacko:
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#4 tarnalberry

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Posted 19 June 2005 - 08:03 PM

congrats on the speedy diagnosis. I'm sorry lunch right afterwards was such a pain - it'll get easier with time, but eating out is never _quite_ the same.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#5 stef_the_kicking_cuty

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Posted 19 June 2005 - 08:07 PM

Your doctor isn't the only one. Mine did the same thing. After my bloodlevels were elevated, he asked ME, if I feel comfortable with a biopsy. I said no and he was alright with that. He told me to start the glutenfree diet right away and come back in a month. That's really cool! Congrats to your diagnosis and I hope you will feel some improvement soon ;)
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August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)
gluten-free since 07/21/2004
Shermans Dale, PA

#6 celiac3270

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Posted 19 June 2005 - 08:48 PM

I personally found that reading books really helped me, one of my favorites is called: Against the Grain, it is a great book written from a personal perspective that made me feel not so alone - although I did not have this great website to consult!

Against the Grain has many errors factually and Jax doesn't take cross-contamination seriously. But if you really want that book, you might as well get the updated version, the Gluten Free Bible. I do not recommend this book to anyone, though. I would recommend Wheat Free Worry Free by Danna Korn.
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#7 Guest_nini_*

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Posted 20 June 2005 - 03:10 AM

I read several articles geared toward the medical community recently that all said the same thing, That the endoscopy biopsy is no longer the gold standard for celiac diagnosis. That a positive blood test result is more than sufficient to dx celiac and put a patient on a gluten free diet. Positive dietary response is your other prime indicator.

Yes the dx is life changing, but ultimately for the better!
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#8 marycubs

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Posted 20 June 2005 - 09:15 AM

Hi -

I agree with Coultier - I found Danna Korn's book Wheat Free Worry Free very helpful !

Mary
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#9 PreOptMegs

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Posted 20 June 2005 - 01:06 PM

Dangerous Grains was very informative as well!
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I LOVE JESUS!

#10 julie5914

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Posted 29 June 2005 - 11:50 AM

Thanks guys. I am angry at my primary physician right now. Back in March, he was investigating my anemia. I had asked him about Celiac and he was the one who mentioned something about a colonoscopy and people only getting Celiac if they had been to 3rd world countries.

He apparently started investigating leukemia and lymphoma instead as the source of my anemia and ordered tests costing over $1500. I showed him the bill at a follow up appt today, and he was surprised to see the cost and thought it was a mistake on the part of the lab. I called the lab and they said he had ordered 21 different units (markers) for this blood test at $50 a pop! He must not have known how exp this was. Luckily I have good insurance and I only have to pay $62 of this, but what a waste of health care money.

He said my red blood cells were up, and I was like, well I am on a gluten free diet now. He then admitted that that was probably what had caused it in the first place. Crazy man. So, I am getting a copy of my medical records tomorrow. If my insurance has spent all this money, I am gonna get a copy of these results. Heck, for $1500 I suppose I should frame them!
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Blood work positive
Dx with IBS 5 years ago
Dx with Celiac and gluten-free since 6/17/05

#11 jenvan

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Posted 29 June 2005 - 12:04 PM

Unbelieveable Julie! I know there's been a lot of wasted test $ on me too b/c of things drs ordered...
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#12 frenchiemama

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Posted 03 July 2005 - 10:13 AM

Hey, you're on The Nest aren't you? I remember your post about this the other day. No idea that you were a celiac too.
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Carolyn


"When the going gets weird, the weird turn pro. "
- Hunter S. Thompson

#13 celiac3270

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Posted 03 July 2005 - 10:48 AM

Hey, you're on The Nest aren't you? I remember your post about this the other day. No idea that you were a celiac too.

What's the Nest? Can you provide a link? :huh:
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#14 frenchiemama

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Posted 03 July 2005 - 11:32 AM

I really doubt you'd be interested! It's a message board for newlyweds, 99.99% are women. www.thenest.com
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Carolyn


"When the going gets weird, the weird turn pro. "
- Hunter S. Thompson

#15 julie5914

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Posted 03 July 2005 - 01:20 PM

Yup, I am a nestie. That's funny - I had been thinking about posting about Celiac there after I was diagnosed but figured probably no one on there had ever heard of it :)
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Blood work positive
Dx with IBS 5 years ago
Dx with Celiac and gluten-free since 6/17/05


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