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I Sure Can Pick 'em !
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4 posts in this topic

I'll try and keep this short :) I will start by saying I am totally symptom-free from celiac disease since going gluten-free seven months ago! One of the very lucky ones, and I know it. I saw my first GI after I had been gluten-free for six weeks. He was certain I had celiac disease. He didn't see a point in doing a biopsy since I was off gluten already and was not up for a challenge. After a few months, I wanted to see a doctor who was a little more experienced with celiac disease (he only had a few celiac disease patients) to do a biopsy to be sure my gut was clean, so I found a guy who claimed to be an "expert". Well, this doctor (very handsome, charming guy) said, "I will prove whether or not you have celiac disease!" Then he said that while my daughter has celiac disease, I don't because I was constipated, and celiacs are NEVER constipated, they only have diarrhea. (Check page seven of the NIH consensus. It clearly lists constipation as a symptom) Then he ran a celiac disease panel on me--AFTER I was gluten-free for SEVEN MONTHS. (Check page four of consensus--tests MUST be done while patient is eating gluten.) He said the blood tests would show whether or not I had celiac disease! HUH? Then he spoke the magic words: IBS! Do you not LOVE this story?! I told him that I know of celiacs with constipation. I told him the tests would come back negative because I was gluten-free. I told him no gluten=no symptoms. I should have told him he was a horse's hiney. But of course he's an EXPERT, you see. So I am bringing a copy of the 21-page NIH consensus to him next week (after he gets back from vacation (experts need their rest) and I am going to tell him to study it. And that I am the expert! :)

Dana, Gloriously gluten-free

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I'm sorry...but what a dork!

I wouldn't go back to that doctor. Especially after the "IBS" thing! :P

Deanna

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Oh my gosh...I'm sorry you have had to go through so much trying to get a diagnosis. You're absolutely right about constipation being a celiac disease symptom...reflux and constipation were my primary symptoms before diagnosis, never diarrhea. Out of fairness to doctors, I do have to say that it must be nearly impossible to keep up with the latest information about every single possible disease/affliction. However, I also think it's inexcusable for a doctor to ignore a patient who is trying to give him information on a disease that he obviously doesn't know much about. I hope he reads that NIH consensus statement thoroughly and starts taking your Celiac suspicions more seriously!

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The only reason I'm going back to him is to give him the NIH Consensus; he's NOT my doctor anymore! I thought it would be irresponsible for me not to give him the information he so desperately needs. What he does with it is up to him.

Dana, Gloriously gluten-free

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