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Confusion With Diagnosis

celiac diagnosis confused gluten-free

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#1 KChipley

 
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Posted 26 April 2013 - 05:59 PM

I am so confused and need help!! I had a biopsy done on March 4, 2013. Immediately after the procedure, the Doctor came in the room and mentioned that he thought it could be Celiac Disease but wasn't positive yet. He took some blood and sent me home. On March 13, 2013, I received a phone call from the Gastroenterologist office confirming that I do have Celiacs. The nurse told me that I would need to begin a gluten-free diet immediately and she mailed me some more information on Celiac Disease and eating gluten-free. I stopped eating gluten that day and even went as far as purchasing gluten-free makeup/shampoo/lipstick etc. I went in for a follow-up appointment with my Doctor last week and shortly after walking in the room he said, "From your biopsy results I think you MAY have Celiacs. Do you know what that is?" I WANTED to say, "Yes, I know what that is because your office told me I had Celiacs so all I've done for the past month is read about it!!" But I just said that I did know what it was, and I mentioned that they had called and confirmed that I had it. He said that IF I do have Celiacs, it's only a "tiny bit" because it only partially showed on my biopsy and he wants to run blood work (he didn't mention the blood he took in the hospital) to "confirm" whether I have celiacs or not. He told me to go back to eating gluten for one week and then I will have the blood work done that will confirm this possible diagnosis.

 

Here's my issue. Everything I am reading online says that blood work is done FIRST, and that the only certain diagnosis is biopsy. Is this true? I've also read that if you're following a strict gluten-free diet, it takes way longer than one week eating gluten for anything to show up in a test result confirming Celiacs. I am really frustrated with this Doctor and his office. Why did they call and say I definitely had it and to go gluten free immediately if my test results were inconclusive? 

 

I started eating gluten again the day of my appointment, 4 days ago, and I feel so sick. All of my symptoms that had gone away since going gluten-free are back. I'm going back  to eating gluten-free and I'm going to call the Dr. office on Monday to see if I can get some better clarification.

 

Any advice/thoughts would be greatly appreciated!!! I am so lost. 


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#2 mushroom

 
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Posted 26 April 2013 - 06:38 PM

Yes,  it does seem as if in your case things have been done a little bass ackwards.  Positive blood, confirming biopsy is the normal procedure.  Perhaps your doctor forgot you had not had the blood tests done, and the blood taken at the hospital was to test for nutrient deficiencies.

 

Nonetheless, celiac is like pregnancy in that you can't be a "little bit" celiac; either you are or you aren't.  You need to get a copy of the pathologist's report on the biopsy and see what he had to say.  It could be that you had inflammation and suspicious lymphocytes, but not actually any involvement of the villi, which is the normally accepted positive sign of celiac, the other two being potential precursors.  If he took several biopsy samples and it only showed on one of them, this is not unexpected because the disstribution is often patchy and is a reason that sometimes people who actually do have celiac will show up as biopsy negative.

 

Do get a copy of the pathology report and let us know what it says.  And by the way, welcome to the board!


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#3 Deaminated Marcus

 
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Posted 26 April 2013 - 06:57 PM

Yes get a copy of the pathologist's report.

I always ask for copies and found stuff on them that a specialist wasn't telling me that was important,

and even mistakes on other reports.

 

Also get on the horn (the phone) to find out what blood tests were done and where are the results.

Sometimes the labs can forget to send them and  your busy doctor forgot about them. :wacko:

The lab might say they can't tell you, so say: "that's fine but can you send a copy to my PCP?"

Then get a copy from your PCP.


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#4 KChipley

 
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Posted 27 April 2013 - 08:14 AM

Thanks for the replies!! I'm definitely going to start calling on Monday morning to see if I can get a little more information. I will get copies of the forms and see what I can figure out. I have been so frustrated with him, I kind of want to try to get a different doctor!


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