Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Just Back From Doctor's
0

16 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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 ;)

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

Hi -

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

Mary

0

Share this post


Link to post
Share on other sites

Dangerous Grains was very informative as well!

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
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:

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,090
    • Total Posts
      920,307
  • Topics

  • Posts

    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
    • Along those lines, many Americans are now pursuing gluten-free eating. Gluten ... Diagnosis of celiac disease typically requires a history and physical ... View the full article
    • No!  Once you fill the tub, if you sit in it for 3 minutes or you stay for 10... It doesn't change the amount or cost of the water.  That's only relevant if you have 3 kids to cycle thru that same water.  Is your hub bathing in the same water after you? Lol  And even if you add some more hot and stay longer....well...it's much cheaper than perscription meds, vodka or a substance that is legal in a few states.     Of course this only pertains to those of use with running water.... If you make your hub haul water from the creek or well and heat it over a fire....
    • Whether it is bona fide dermatitis herpetiformis, or severe eczema or hives or what have you, we all want to know how to stop the incessant itching.  Through all my research, the solution comes down to one thing: a good long soak in the tub-- with baking soda or Epsom salts or some kind of herbal tea, followed by a rub down in thick expensive lotion.  I don't know about you, but I was brought up to "get in, get done get out."  A long soak in the bath was a frivolous luxury, and a waste of time and hot water.  So now I'm having this awful breakout from forgetting to read a label and got wheated.  And every night I've been soaking in a baking soda bath to relieve the itching and aid my recovery.  And it's been hard! (But it's been very helpful too)  It has been hard to reconcile this "frivolous luxury and waste of time" as medically necessary!  Fortunately I've had no judging, and only support from my husband, who has had a similar upbringing.  Does anyone else struggle with this?
    • His son, Eli, had been misdiagnosed with celiac disease, so the family tried some gluten-free foods. After adding quinoa (KEEN-wah) to their diet, ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,117
    • Most Online
      1,763

    Newest Member
    cdliac3855
    Joined