Testing First-Degree Relatives

[cyclinglady]

Did you all see this article on first-degree relatives?  Mayo found that 44% of first-degree relative had celiac disease even if asymptomatic.  That is stunning! 

https://www.news-medical.net/news/20190822/Mayo-Clinic-Study-Calls-For-Screening-Of-Family-Members-Of-Celiac-Disease-Patients.aspx

How many family members have you been able to convince to get tested?  For me, only three have done it so far and they were negative.    

[kareng]

Yes.  scary stuff!

[RMJ]

Only 1 of 3 has been tested and he was negative.  Father wouldn’t be willing to give up bread anyway (plus he is 95 with no symptoms). The brother who is an MD hasn’t done it.

[kareng]

My 2 boys have both been tested twice and negative.

 But my sister and brother won’t unless there is an issue .  But my brother told me that they looked into Celiac when his wife was having issues and found that the only way to test for Celiac was an autopsy after you died.  ?. 

My niece has had at least one of her kids  tested a couple of times.  He was having some issues and it may have been FODMAPs because a lower FODMAP diet for a while got him back on track.  

[cyclinglady]

RMJ, an MD and he has not been tested!  Wow!  Maybe you should share this article.  I get an elderly person not wanting to be tested.  

Some of my siblings have refused.  The idea of giving up bread seems horrible to them.  My kid has been tested twice.    Full panel because of the easy I test (only DGP IgA positive).  I had her retested because she was heading off to college.  

I did find that most screenings involve just the TTG.  So, some of those relatives might have actually been positive.  I hope they will  retest some day.  

My niece was tested several times, but it turns out that she has Crohn’s.  She knows that she might develop celiac disease some day.  

[RMJ]

My MD brother goes very strictly by official guidelines published by recognized medical organizations.  The American College of Gastroenterology says that in asymptomatic first degree relatives testing should be “considered.”  They “recommend” in first degree relatives with possible symptoms.  (I personally think that being very skinny and eating a lot could be a symptom).

My gastroenterologist says I have to have a colonoscopy every five years because my other brother had a certain type of polyp.  MD brother only does it every 10 years because the guidelines say 5 years IF first degree relative had that type of polyp before age 60.  Other brother’s polyp was found a few months after he turned 60. I’m sure it was there before he turned 60!

I don’t try to change either brother’s mind.

[Beverage]

I finally got my sister to get tested, it took a few years to get her to ask for it when she goes in for her annual blood tests.  She has diverticulitis, hiatal hernia, food gets stuck all the time (been to emergency several times for it), unknown causes of diarrhea (just something she ate but doesn't know what, "something spicy" "certain spices" "other people's food" yada yada).... and the doctor resisted and said "BUT YOU DON"T HAVE ANY SYMPTOMS".  ARGH!!!  Anyway, got the test done and the doc didn't do the full panel, that was a low positive, doc says not celiac's.  So that was negative and now I can't get her to do it again.  So frustrating.  She's one of those people that avoids confrontation at all costs, so I guess it's amazing she insisted on the test the one time.