Any Chance An Edoscopy And Colonoscopy 3 Yrs Ago Was Wrong?

[lilgreen]

I had an endoscopy and colonscopy 3 years ago and told all was fine. My problems persist and my son just got diagnosed with Celiac. My grandmother has it, as does her sister and so did her mother. My doctor decided to get a blood test for me even though the endoscopy showed I did not have celiac disease.

As I wait for the blood test results I am wondering... Is there any possibility that those tests 3 years ago were wrong?

Thanks!

Beth

[Guest j_mommy]

Yes there is that chance.

They may not have taken enough samples to catch an area where there was damage.

Also others have reported that one lab said no celiac and another said yes...if the lab doesn't have alot of experience with celiac that can happen.

Another possibility is that you amy not have had enough damage then but amy now!!!

Good Luck!

[Fiddle-Faddle]

Oh, yes, indeedy!

Think of it this way: you have something like 22 feet of intestine. If you are lucky, they biopsy 6 samples, each about 1/4 inch. That's a total of an inch and a half out of 22 feet, so they've actually tested 1.5 inches out of a possible 264 inches (12 inches in a foot, 22 feet of intestine). 1.5 out of 264 is .005 %.

With me so far? Good. Now, take into account that damage is often patchy, and not visible to the naked eye. A biopsy tests .005% if you are lucky. They didn't bother to test the other 99.5% of your intestines (and you wouldn't want them to biopsy all 22 feet anyway-- boy, would that be painful!).

I'd say the odds of their hitting an affected area are pretty low unless ALL your villi are totally destroyed, which is like finding cancer at stage 4, or waiting to diagnose a peanut allergy until the patient has already gone into anaphylactic shock.

I'm glad you have a doctor sensible enough to look for celiac via bloodwork in your case, and I also wonder if you would consider trying the gluten-free diet to see if it resolves your persistent problems?

The diet seems incredibly daunting at first, but it's really so much easier than I thought, and there are so many really good recipes out there for bread, cakes, cookies, pancakes, all the good things, it's really quite manageable.

[gfpaperdoll]

with a family history & symptoms there is no way that you do not have celiac, in my opinion...

Dietary trial is the ultimate answer. If you eat gluten free & you feel better, then that is all the diagnosis that you really need.

[aikiducky]

You don't develop celiac overnight. It can be that three years ago you were already having symptoms but not yet enough damage in your intestine to have a positive biopsy. With your family history I think at the very least you should be tested periodically because chances are at some point you will start to test positive.

Pauliina

[lilgreen]

Thank you all so much for your insights. I should hear Monday.

Cheers,

Beth

[happygirl]

"Pitfalls in the biopsy diagnosis of celiac disease

These include: 1. Inadequate number of biopsy pieces. The disease is patchy, this combined with the fact that all biopsy pieces may not be oriented sufficiently to assess the crypt to villous ratio means that at least 4 to 6 biopsy pieces need to be taken. Biopsy of the descending duodenum is sufficient. 2. Over-interpretation of villous atrophy because of poor orientation of the biopsies. If the pieces are not sufficiently oriented to assess the presence of, or degree of villous atrophy deeper cuts of the tissue block need to be ordered. 3. If the biopsy interpretation does not match either the clinical impression or serologic results the biopsy should be re-interpreted by a pathologist expert in the interpretation of gastrointestinal pathology."

And, make sure your dr. ran the full celiac blood panel:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level

(Both taken from www.celiacdiseasecenter.columbia.edu)