Telling Family/encouraging Them To Get Tested

[ftmomma]

I was just diagnosed after about 10 months of severe symptoms and testing. (I'm actually learning that less than a year is actually considered "quick" since so many people go undiagnosed for so long).

I had negative blood work but positive biopsy and positive DQ2. Since there are gentic links, my GI dr thinks family should be encouraged to be tested as well.

I am the oldest of 4 children and both parents are still alive. We are Irish on both sides. I think my siblings and parents will want to get tested. What about my first cousins? Should I notify them now or wait until my parents get their results? Then have my parents tell their siblings?

Our families are spread across different states but thru facebook/email it would be easy to send them an email and just let them know that it might be a possibility if they are having any similiar symptoms that I've had. Heck, I might even find out that someone has already been diagnosed....but just never informed extended family.

What do you think? How did you tell family? What kind of links did you include about celiac disease and it being a genetic condition. Would like to pass along info without being too overwhelming.

Thanks for any info

[Skylark]

I don't know how technical you want to get, but your first degree relatives (parents, children, and siblings) should absolutely be tested. The risk of celiac in first degree relatives is quite high. I've seen anything from 1 in 20 to 1 in 5. I wouldn't worry about explaining DQ2, as celiac involves other as yet unidentified genes as well.

Maybe an article like this?

Open Original Shared Link

[kareng]

University of Chicago Celiac Center has fact sheets that are easy to read. They have one about testing relatives.

When I told my parents, I joked and said "Well, we don't know anyone else with stomach issues, do we?" My mom , who constantly cancels things due to diarhea, said "no, we don't". "I don't have any stomach issues." I'm not going to fight with them at their age. My kids don't have any symptoms but are getting tested at their annual physicals. I figure that all I can do is put the info out there that it is genetic but they are all grown-ups and I'm not going to fight about it.

[ftmomma]

Thanks for the replies - and the good link.

I just told my mom. She is thrilled I finally have an answer...but she just confessed to me she let her medical insurance lapse! ahhhhh!! So getting tested won't be as easy for her as I thought. She thinks she probably has celiac disease as well (she has a bunch of GI issues over the years) She is willing to learn more and give up gluten without being tested.

Do you ever feel a "responsibility" to notify other family members? I think yes just because it might help lead them to helping them heal quicker and/or avoid complications of celiac disease. My mom thinks her sibllings (all in their 70's) probably wouldn't want or need to know anyway - they aren't very close. But what about their children/grandchildren?

This is all so new to me...so much to think about and process.

[sb2178]

I sent a mass e-mail to parents, grandparents, aunts, and uncles. (Figuring cousins would be mostly caught as minors belonging to their parents.) I didn't include a lot of info, just a summary of what I can and cannot eat, a short list of potential symptoms, and the recommendation that due to the genetic links, symptommatic and first degree relatives be tested. I did not include links, figuring that might be information overload. In retrospect, that might have been helpful.

One grandmother and an uncle will likely be tested. I'm working on my father. We'll see if I can make that happen...