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Should My Whole Family Get Tested?

Waldz1

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Waldz1 Newbie
Waldz1
Posted

Hello. I just got diagnosed with Celiacs this week. I'm 28 and the oldest of 6 kids. No one in my family had even heard of this disease before now, and apparently it's genetic. We've had our share of indigestion and gas, I suppose, but no one besides me showed any real symptoms. Should they all be getting tested?

Josiah

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cruelshoes Enthusiast
cruelshoes
Posted

Hi, Josiah. Yes, all your first degree relatives should be tested (parents, siblings, children). Their chance of having celiac disease is approximately 1 in 22. General population has a chance of 1 in 133. I had my children tested after I was diagnosed. My daughter was negative, but my son was positive. He had no obvious symptoms other than a slowdown in his growth. He had no GI symptoms other than occasional "D". Absence of symptoms is not necessarily a good indicator of having the disease.

I haven't been able to convince my parents or sister to get tested yet. I hate that I am not the boss of them! :(

happygirl Collaborator
happygirl
Posted

Yes. All Celiac experts recommend that all first degree relatives, regardless of symptoms, are tested via bloodwork.

Something to keep in mind....just because they test negative now doesn't mean they are "free" of Celiac for life. If symptoms arise later, it is worth it to be tested again.

Here is some info you might find helpful, from a very well respected source. Open Original Shared Link

"Q: Why do my family members need to be screened for celiac disease?

When the diagnosis is established in one family member, their first- degree relatives (parents, siblings and children) should have blood tests for celiac disease. This is because at least 10% of family members will have the disease, even if they are asymptomatic. Screening is also recommended for second-degree relatives (grandparents, grandchildren, aunts, uncles and cousins) as they are also at an increased risk for celiac disease. Family members who already have an autoimmune disease are at a greatly increased risk to have celiac disease (25%).

The reasons to diagnose family members prior to the development of symptoms include the prevention autoimmune diseases and malignancy."

nikky Contributor
nikky
Posted

yes you should get everyone in you imediate family screened and it would be a good idea to get less imediate family checked as well (cousins, aunties uncles)

experts say that if one person has coeliac every one in ten people in that family will also have it.

and as for not having many symptoms i was asymptomatic until about a month before i was diagnosed the only sign that i had coeliac was anemia

  • 3 weeks later...
gabby Enthusiast
gabby
Posted

Here's another great reason for your family members to get tested now: it will provide some baseline test results, which can be used as a reference point in the future. So if in a few years, new health problems crop up, or current mild symptoms become more problematic, doctors can do new tests, and then compare them with the old 'baseline' tests and see if things are better, worse or the same.

Hope that helps!

Chris28806 Newbie
Chris28806
Posted

When I was diagnosed within a few months after my mom also tested positive. Shortly after, her sister and daughter tested positive. Neither of which showed signs of celiac. The sooner the better.

  • 2 weeks later...
mismalw/cealiac Newbie
mismalw/cealiac
Posted
Hello. I just got diagnosed with Celiacs this week. I'm 28 and the oldest of 6 kids. No one in my family had even heard of this disease before now, and apparently it's genetic. We've had our share of indigestion and gas, I suppose, but no one besides me showed any real symptoms. Should they all be getting tested?

Josiah

YES! Get your family tested! It is very important. When i got cealiav disease we got my family tested and my sister had it. we were both a symptomatic but we so felt better after we started the diet. it doesn't hurt to get tested.

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Rikki Tikki Explorer
Rikki Tikki
Posted

YES YES YES! My brothers and mother were tested after I was diagnosed, they didn't have symptoms but had all the damage that comes with it, villi were gone, bones were affected, so have them tested

  • 1 month later...
ThatlldoGyp Rookie
ThatlldoGyp
Posted

Yes, you should have all first degree relatives tested and they should continue to be re-tested should they have any symptoms, ever.

Also, if anyone else comes up positive, then make sure they contact all members of that side of the family that may be at risk. Thanks for being so careful!

And when you have kids one day, treat them as though they are gluten intolerant, breast feed as long as possible, and then test when reccomended by your GI. My GI said my kid had to test his kids one day since he is a carrier.

CarlaW Newbie
CarlaW
Posted

I agree with everyone on testing, but if your family is resistant to testing right now (perhaps for financial or denial reasons) and they have symptoms, I would challenge them to eat gluten free with you for 3-6 months and see how their health changes. I would also encourage them to keep a diet calendar and write down food intake and symptoms every day. As you and your family will see, reading labels and checking out restaurant gluten free menus are a must to truly be successful in this project. Even if they are not celiacs, doing this diet will help them understand you better. My non-celiac family members did and they appreciate what I go through alot more than they did before.

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