Family testing and positivity

[Koi]

Our teen was diagnosed with Celiac last week. I know the whole family should get tested now. I am curious....for those who tested after a family member was diagnosed, how many others were diagnosed as well?

[Scott Adams]

We published a Mayo Clinic a few months back that indicated that up to 44% of first degree relatives could also have celiac disease. I've seen different lower ranges on other studies though.

[LCAnacortes]

My first cousin, her sister and her daughter have been diagnosed. Two via tests and the other via genetic testing.  Their mom and my mom may have had it but we're not sure. I am now gluten free after having horrible problems and I strongly suspect celiac but my sister just tested negative.  I'm checking to see if she only has a total test versus the panel. My brother passed from bladder cancer so I wonder....

[NanceK]

5 hours ago, Koi said:

Our teen was diagnosed with Celiac last week. I know the whole family should get tested now. I am curious....for those who tested after a family member was diagnosed, how many others were diagnosed as well?

I was diagnosed at age 62 after a DEXA with severe osteoporosis, and small fiber neuropathy. No GI symptoms. I had no idea they could be the cause of celiac disease. My biopsy revealed my small intestine was graded as moderate celiac. My son tested negative (labs and endoscopy at age 28) as did my brother. He doesn’t think his adult kids need to be tested (I disagree). I’d like my son to have the gene test at some point. And I’m not aware of any other relatives of mine having Celiac disease. 

[JD-New to Celiac]

It is interesting that no one in my family that I am aware of has celiac. With that said on one side of the family there is a long history of various (and severe) autoimmune diseases. My sister was severely disabled from RA and died at a young age as a result. My uncle died at a young age from Addisons and on and on. There were so many. I would imagine there must be some connection to a long family history of autoimmune in our genetic makeup and the likelihood of other family members with celiac. I understand if you have celiac you are likely to have other autoimmune diseases. I just wonder now if those in my family with other diseases could have had celiac but were never diagnosed.

[Scott Adams]

It seems very likely that this was the case, you probably have current and past family members who have, or had it, but were never tested and diagnosed.