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Just Back From Doctor's

julie5914

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julie5914 Contributor
julie5914
Posted

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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LaurieAnn13 Newbie
LaurieAnn13
Posted

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

celiac3270 Collaborator
celiac3270
Posted

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:

tarnalberry Community Regular
tarnalberry
Posted

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.

stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted

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 ;)

celiac3270 Collaborator
celiac3270
Posted
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.

Guest nini
Guest nini
Posted

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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marycubs Rookie
marycubs
Posted

Hi -

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

Mary

PreOptMegs Explorer
PreOptMegs
Posted

Dangerous Grains was very informative as well!

  • 2 weeks later...
julie5914 Contributor
julie5914
Posted
  • Author

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!

jenvan Collaborator
jenvan
Posted

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

frenchiemama Collaborator
frenchiemama
Posted

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.

celiac3270 Collaborator
celiac3270
Posted
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:

frenchiemama Collaborator
frenchiemama
Posted

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

julie5914 Contributor
julie5914
Posted
  • Author

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 :)

frenchiemama Collaborator
frenchiemama
Posted

Actually there are a couple, when I first found out I had it I posted and asked. I put a bunch of celiac info and links in my bio and just the other day someone paged me because she thought she had it and needed some help finding gluten-free products. Small world, huh?

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