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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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    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
    • What a gross title–it bothers me and I wrote it! It wasn't my idea originally. The research paper the data came from was entitled, "Experimental hookworm infection and gluten microchallenge promote tolerance in celiac disease" published recently in the Journal of Allergy and Clinical Immunology. View the full article
    • katesyl.........this is an older topic so the OP most likely won't answer.  I can, however, offer a piece of advice for you. Just going gluten free will probably not drive your inflammation markers down into normal.  It does depend on how high they were to begin with but with all autoimmune diseases, there will be inflammation going on forever.  Get used to wonky blood work because most of us will have that issue. I have 4 autoimmune diseases in total and, although I have driven certain inflammatory markers way down, my recent sed rate number was elevated.  The normal is supposed to be 30 and under in a woman my age but mine is 50.  With 4 AI diseases, I doubt it will ever be normal and I don't let it bother me. I am not willing to take major meds at all and use more natural anti-inflammatory supplements.  You can do whatever you feel comfortable with in regards to treatment but don't expect normal numbers with Celiac Disease. Inflammation will improve but normal?  Most people never get there completely.
    • My daughter's PCP did not go against anything, she offered to do the biopsy - I was the one opposed to it. My DD, who was 10 at the time had just spent 3 weeks in the hospital, very sick with a ruptured appendix, then had 2 surgeries a few months after. I didn't see the need to put her through anything else with her numbers so high and all the classic symptoms. Apparently, in some other countries, if your numbers are all high, they forego biopsy. Anyway, I was really asking about myself and whether I should push for add'l testing. I am still new this this and trying to get up-to-date and wasn't sure if my PCP should conduct other blood tests before I go completely gluten-free. I have been somewhat gluten-free, but not entirely. I have no problem going gluten-free, but want to make sure that I am doing it for the right reasons. I wasn't sure if the Gliadin Abs IgA was sufficient to point to Celiac and possibly doing a biopsy for me. Or if additional blood test would make more sense.   Thanks!!
    • I would like to know if you have found out the source of your inflammation yet. I'm gluten free three years but my inflammation test was high.
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