for Marilyn--celiac testing

[Guest guest]

Hi Marilyn.......I was interested in your posting re/celiac testing and the absolute need to consume gluten prior to testing.

I will not bore you with the long story however I was diagnosed with celiac disease 18 years ago. After 7 years I had a return of similar symptoms despite a very strict diet regimen. I was sent to a celiac researcher in NYC who questioned the validity of the diagnosis.

I refused to return to eating gluten to reconfirm the diagnosis and he told me this would not be necessary---he said if I was indeed a celiac he would still find traces of damage that would confirm the diagnosis--regardless of the time interval I had been GF because of my age. I was early 50s at the time. I truly didn't believe him but since there was a question of a cancer causing my symptoms, I agreed.

He came to see me directly after finishing the EGD and showed me pictures of the inside of the small intestines. Even before the biopsies were read, he felt the original diagnosis was correct. A few weeks later the biopsies verified the results he had observed and he agreed the diagnosis was correctly celiac disease.

I agree that many physicians insist on a patient ingesting gluten for a certain period before biopsy, but obviously this is not always necessary if there have been enough years of damage prior to instituting a GF diet. I have been told by a pediatric specialist in celiac disease that children revert to a normal/healed state very quickly after diagnosis and diet change but this is not so with older adults/or not always so. I have had additional EGD's since and the reports always say the slides are consistent with pre-existing celiac damage. Apparantly in many of us there will always be changes in crypt length, texture of the intestinal lining, and certain cells that are diagnostic.

You might wish to investigate having the procedure without a gluten challenge to see if you have permanent "damage" ---not that it would change the way you currently eat but it might explain certain other questions with your health now.

Just my experience.....hope it might help.

Gen

[Guest guest]

Hi Gen,

I was just thinking about this last night..

So does one have to eat gluten as well before getting a biopsy to show

Celiac's? I thought it was different with biopsies. Is the likilhood

of showing Celiac's higher with ingesting gluten/wheat?

Thanks!

Jodi

SCD 14 months

Crohn's/Colitis

[Guest guest]

yes -I had to put my sons back on gluten for the biopies to be

accurate - once gluten is removed villi start healing themselves

eileen

>

> Hi Gen,

>

> I was just thinking about this last night..

> So does one have to eat gluten as well before getting a biopsy to show

> Celiac's? I thought it was different with biopsies. Is the likilhood

> of showing Celiac's higher with ingesting gluten/wheat?

>

> Thanks!

> Jodi

> SCD 14 months

> Crohn's/Colitis

>