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Miss Diagnosed Celiac!

Ian_H

Ian_H

Location
Charleston,
Hey so I was diagnosed with celiac back in 2009 and began my annoying gluten free diet as far as treatment for it. Slowly I began easting small amounts of gluten and never had a problem. I now eat normal amounts of gluten and still have no problems. So I switched GI docs back in 2013 due to butting heads with my old GI :) I just had a colonoscopy and upper endoscopy on the 19th of January and we tested for celiac via biopsy. No celiac at all!! Not sure if I should be mad at my old GI or just happy I dont have it, which i am :ycool:

So my question is can you test positive for celiac and later down the line become not affected by it and become negative for celiac? or do you think i was just misdiagnosed in the first place?
 
Clash

Clash

I'm going to tag mehita and my little penguin because they know the ins and outs of false neg and pos with celiac testing, I believe.

But I'm glad you aren't positive for it!
 
Mehita

Mehita

Do you recall what tests were run for your initial diagnosis? Celiac panels AND biopsy? I think positive blood work can have a fairly high false positive rate and that's why the gold standard is scopes with biopsy.

That being said, I have also heard of adults sort of "outgrowing" Celiac after decades on a GF diet. Nothing medically or scientifically proven, just personal stories.

My son's GI initially questioned his Celiac dx (done by different GI) because he said Crohn's can cause blunted villi also. Unfortunately, he vomits at the smallest bit of gluten, so it was easy to convince him he does truly have Celiac, but I found the villi comment interesting.
 
Ian_H

Ian_H

Location
Charleston,
I dont remember how I was initially diagnosed unfortuntely. I really did not like my 1st GI. After my first colonoscopy i came back in for a follow up a few days later and when he walked in he said "it look like you have crohn's and celiac". I had no idea what either were at the time and he gave me a script and walked out. But my current GI diagnosed me as negative via biopsy for celiac. The old doctor got the Crohn's diagnoses right at least!
 
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