Question for Celiac

Celiac disease is not always necessarily inherited. My husband was the first in his family to have been diagnosed. But then it was not so widely known about years ago either, so someone could have had it and not been diagnosed. Weren't you being tested for it? Or am I confusing you with someone else who posted they were having tests on the 23rd. That was yesterday so I hope we learn the results. MK

I'm was the first in my family to be diagnosed.  Thus far, none of  my children have been confirmed to have it.  However, in the 12 years since my diagnosis, I've had several cousins who've been diagnosed.

It could still be hereditary (as in in your gene pool) without you or your husband actually having it.

I was the first in my family that was officially dx'd. My maternal grandmother died of small bowel lymphoma, which my GI said was almost certainly undx'd Celiac Disease.

My mother has a positive anti-tissue Transglutaminase test but negative EGD. She is on the gf diet.

honestwoman50,

I am the first in my family but my family (my mother's side) has a history of chrons, lupus, gerd, heartburn, RA, lymphoma, colon and liver cancer. I can't help but wonder if they all stem from mis/undiagnosed Celiac disease. My mother has chrons and has recovered from lymphoma and refuses to be tested for Celiac for fear her diet restrictions will only get worse. I have brothers and sisters who seem to have symptoms associated with Celiac disease and even though I have tested positive their doctors do not feel a need to test them, go figure. My daughter was recently diagnosed as gluten intolerant and has been told to go on a GF diet, but her doctor (she is active duty USAF) has also refused to test her for Celiac disease stating she doesn't fit the profile. From what I have read online, you have a 10% chance if a direct family member (mother,father, sister or brother) has celiac disease and a 20%chance if an indirect (aunt,uncle etc) has celiac disease.

You can be tested for the celiac genes DQ2 and DQ8 -- you can carry these genes without having Celiac Disease, but you can not have Celiac without one of these genes.

Many things can trigger celiac -- virus, surgery, etc. Also there are celiacs that don't have severe symptoms for years, once diagnosed it connects the dots of many mild concerns in previous years.