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Just Back From Doctor's
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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.

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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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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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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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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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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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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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Hi -

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

Mary

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Dangerous Grains was very informative as well!

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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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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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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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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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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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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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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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    • I already did. Thats how i found the place. Its amazing to actually go to a restraunt again.
    • This is EXACTLY what happens to me. It has twice now and both times was after both glutening episodes but once it was the day after and the other time it was a week and a half. So I'm still not sure if it's related or strange bug bites...

      Did they stop happening when she stopped being glutened? Did you decide they were definitely related? I'm really confused by this and would love to know whether to insecticide my house or....
    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
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