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Family testing and positivity

Koi
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Koi Rookie
Koi
Posted

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?

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Scott Adams Grand Master
Scott Adams
Posted

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 Enthusiast
LCAnacortes
Posted

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 Apprentice
NanceK
Posted
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. 

  • 2 weeks later...
JD-New to Celiac Explorer
JD-New to Celiac
Posted

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 Grand Master
Scott Adams
Posted

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.

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    • cristiana
      UK Member Looking For Help - Recent Test

      By cristiana · Posted

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    • trents
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      No. That is, unless the dietician themself has a gluten disorder or is managing a close family member who does and therefore is immersed in it daily so as to be up on the nuances of eating gluten free. Otherwise, they just give you very general information which you can get online.  
    • trents
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      By trents · Posted

      Yes, a very cryptic and uninformative lab result report indeed! But it does seem like this is typical for the UK. It's almost like the "professionals" in that healthcare system don't want you to try and figure anything out for yourself.
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