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The doctor's office is supposed to be calling this afternoon. There's a big knot in my stomach as I type. I'll try to answer your questions as best I can. The big bummer thing about Celiac is it seems there is such a gray area. The total blood panel is: AGA Igg AGA IgA Total IgA serum tTG EMA The two most specific to Celiac...

I totally feel for you. We have had a similar experience. I would do the diet for 6 months and then re-do the bloodwork. If the tTG drops, you will know it's Celiac. Genetic testing would also help. DQ2 and DQ8 are the recognized Celiac genes.

tTG and EMA are anti-self. The others show antibodies to gluten.

Sorry, for all the errors in the previous post. I was in a hurry. Hope you can read through all the mess-ups. :)

Wow. What a great thread and they are giving you a lot of great information. Your doctor seems very good and thorough. Compared to a lot, he seems as if he's looking for the subtle details which is good. Most doctors wouldn't have even thought to look for Celiac in and asymptomatic patient. I would give him that much. ABSOLUTELY DO NOT START A GLUTEN...

I'm not saying that you don't have Celiac, but I am saying that you are 100% right that you were NOT properly diagnosed. I can't believe the ignorance in the medical community, and this was a GI specialist! That's crazy and I would be so angry. The two most specific tests to Celiac are the tTG and the EMA with the EMA having almost a 100% accuracy rate...

I highly suggest the biopsy. It's not invasive at all and it's best to confirm what's going on inside. Also, I would highly recommend Celiac Disease, A Hidden Epidemic, by Dr. Peter Green. It's the best book out there. Read it and educate yourself as you are your childs number one advocate. I would not start the diet until you find out what blood test...

Sorry, I think there was a misunderstanding. Ann sent me a PM to explain some things to me. Basically, she explained that they can sometimes see folds or scalloping of the duodenum, but the pathologist looks for the microscopic damage done to the villi. Good luck.

I'm so confused. I was under the impression that they could see abnormalities/scalloping in the folds and mosaic type patterns in the duodenum, but I thought our doctor told us they need to take samples to look at the villi because the damage could be microscopic. If they can diagnose based on what they see, why do they take biopsies at all? Does everyone...

I'm so glad that you found a good doctor. It helps so much when the physician is well educated. Good luck with everything.

I CANNOT STRESS ENOUGH HOW IMPORTANT IT IS TO FOLLOW UP WITH AN ENDOSCOPY IF THAT'S WHAT YOUR DOCTOR RECOMMENDS. OUR SON'S TTG WAS SLIGHTLY ELEVATED. IT SHOWS THAT THE SMALL INTESTINE IS DAMAGED, BUT YOU NEED TO FIND OUT WHAT THE CAUSE OF THE DAMAGE WAS. TTG IS NOT 100% SPECIFIC TO CELIAC. I FELT AS A PARENT, I OWED IT TO MY SON TO FIND HIM A PROPER DIAGNOSIS...

A POSITIVE BLOOD TEST IS MOST ABSOLUTELY NOT AN OFFICIAL DIAGNOSIS. I'M SORRY, BUT THERE ARE MANY OTHER CONDITIONS THAT CAN ELEVATE AN IGA TEST. THE MOST SPECIFIC FOR CELIAC ARE EMA AND TTG. YOU MOST CERTAINLY SHOULD SEE THE PEDS GI AND I ABSOLUTELY WOULD NOT START A gluten-free DIET UNTIL THEY HAVE FURTHER EVALUATED YOUR DAUGHTER. GOOD LUCK. I'M SORRY...

I agree about the EMA. It's way more specific, but not as sensitive. That is why they use the tTG to screen and then follow up w/ the EMA and biopsy.

Forgot to ask, it's really important to find out which blood test was positive. I would only trust the EMA to be 100% Celiac.

I feel so bad for you. I urge you to get a better, more competent doctor. If you had all that damage inside, they need to find a root cause and get you better! That doctor is definitely out of it if he thought he was telling you about your villi from the scope. It's scary. We go to the University of Chicago and see a world known GI. It's amazing when...