Should my family be tested?

jenh · Joined: 11 Aug 2005 Posts: 25 Location: Massachusetts

Hi everyone,
I was recently diagnosed with celiac disease and I was wondering how important it is for my family to be tested. My GI doctor told me that unless my family members present symptoms, there is no need. Hmmmm...Not so sure about that. Have your family members been tested?
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Jen

Judy · Joined: 01 Aug 2005 Posts: 235 Location: Massachusetts

No, neither of my daughters have been tested. Although they both have IBS, but none of their symptoms are related to gluten intolerance. The IBS meds have helped both of them. I thought maybe they should be tested, but both are feeling fine now that the IBS is under control and both eat gluten without symptom. I guess I wouldn't test unless they presented with some sort of symptom - unless there is some sort of silent celiac disease.
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Judy

jenh · Joined: 11 Aug 2005 Posts: 25 Location: Massachusetts

Hi Judy,

I guess I'm only wondering about it because my sister has IBS and still has symptoms after years of her diagnosis. She gets stomach pain and constipation. My mom had several unexplained miscarriages and had hypothyrodism. I just wonder if everything is somehow connected. Hmmm...
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Jen

aklap · Joined: 02 Oct 2004 Posts: 8136 Location: WI, USA

Hi Jen & Judy,

Yes they should be tested - even though they have no symptoms!

CD is genetic so it's very possible they have it as well. What they think happens is that you carry the gene for it. You are susceptible to contracting CD - that does not mean you have it. There is some type of trigger that sets your body off: illness, surgery, infection, stress. At that point - when gluten is consumed - BAM! The numbers are 1 in 22 if you have a child or 1st degree relative with CD.

One other thing to remember...if they are tested now and show negative...this does not clear them for life. They would need followup testing. But considering they all have gluten related symptoms (miscarriages, thyroid, "IBS", constipation, etc) they REALLY should be tested. Again...even if they are sero-negative...with symptoms like those...a GF trial would be in order!

Going by symptoms alone is not always best...some Celiacs are ASYMPTOMATIC - they have no symptoms what so ever - or very few. I have a friend that has a family history of CD (mother, brother, maybe a sister or two with it). Me and his wife bugged him to get tested - he never would because I felt nothing. Finally he did test...yup...he has CD!
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

Judy · Joined: 01 Aug 2005 Posts: 235 Location: Massachusetts

Interesting to know there are celiacs without the basic symptoms. Thanks, Al.
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Judy

jenh · Joined: 11 Aug 2005 Posts: 25 Location: Massachusetts

Hey Al,
Thanks for the advice! I think it would be a good idea for my family to be tested. I mentioned it before and they weren't thrilled with the idea. I think they're afraid they may have CD too Laughing

. I have been reading up on CD and it seems like there may be other, more serious illnesses which people can get if they go undiagnosed.
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Jen

aklap · Joined: 02 Oct 2004 Posts: 8136 Location: WI, USA

ccwright · Joined: 03 May 2005 Posts: 44

Jen,

Sorry for such a late reply, but I have been out of town a lot this month and am just now catching up with the latest posts.

PLEASE, PLEASE get your children tested. I was diagnosed this past May (thankfully) and I got all 3 of my children tested in June. Two of them tested negative and one positive, my 17 year old son. The numbers on his blood tests were even higher than mine. He never had any outward symptoms, but in my opinion he was a ticking bomb. Who knows what damage was being done internally. I immediately put him on the gf diet and I pray every single day that he will never be symptomatic. He is in for a real tough time of it for the next few years as he has to be on this resticted diet as a senior in high school and then in college, but what is the alternative? It is simply not an option to just "wait and see if he ever gets sick". By then there could be irreversable damage. Please don't think I'm preaching to you. I just wanted to share my experience and hopefully it will help you make a well-informed decision.
Take care and let me know if I can help you at all.
Your friend in PA.,
Chris
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Chris