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Confusion With Diagnosis

KChipley

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KChipley Newbie
KChipley
Posted

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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mushroom Proficient
mushroom
Posted

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!

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

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.

KChipley Newbie
KChipley
Posted
  • Author

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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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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