Would You Test Other Family Members?

[rnjenren]

After a strong response to being off gluten I wasn't going to do the gene testing that my doc recommended. I just didn't see the point in paying for information I already knew. However, I have been having trouble with not cheating for a variety of idiotic lazy reasons and thought if I knew for sure it was genetic, I would be more likely to stick to the necessary changes.

Results are in and though I don't have the main 2 celiac genes, I tested positive for 2 that predispose to gluten sensitivity. According to the test report, this means that each of my parents has at least 1 gene for sensitivity and each of my 3 children will have been given 1 of these genes by me. My parents have symptoms that would point to lifelong problems with gluten, no doubt. I believe my husband does too, but he doesn't think so. My daughters don't exhibit any real issues, but my son (age 8) struggles mightily with hyperactivity issues and often exhibits dark eyes circles despite sleeping very well. He is thin as a rail despite eating 24/7.

Money is an issues right now so that must be considered. If this was your situation would you test... hubby to see if he would have passed on a celiac or gluten sensitivity gene to all 3... son because he is most likely symptomatic... or all 3 kids just to know for sure. Or would you just make everyone go gluten-free which would most likely cause an all-out mutiny, but is probably needed just because I gave all the kids a gene for sensitivity. HELP!!!

Jen

[HS7474]

That's tough! If I were you (and I understand the money situation) I would probably test the son, since he looks like he may actually have the disease. Then I would save up and when you're more financially secure I'd test everyone else.

I wouldn't even attempt the gluten-free household- if it's anything like my family there would be cheating galore, to go along with all of the animosity. My boyfriend tried for a few weeks and just couldn't do it. I can't blame them when they don't have the symptoms to encourage them, like we do.

Good luck!

[ravenwoodglass]

I would have them all get celiac panels done if you have insurance. It is advised that when one family member gets diagnosed all should be tested. As far as the gene testing goes that does not tell you if someone has the disease or even if they are at risk for developing it as most places only test for 2 of the associated genes. Some places will also test for what they call the gluten sensitive genes but people can develop full blown celiac without the presently known genes.

[Marlie]

I would have them all get celiac panels done if you have insurance. It is advised that when one family member gets diagnosed all should be tested. As far as the gene testing goes that does not tell you if someone has the disease or even if they are at risk for developing it as most places only test for 2 of the associated genes. Some places will also test for what they call the gluten sensitive genes but people can develop full blown celiac without the presently known genes.

Personally I would skip the gene testing as it is very expensive and does not provide you with a diagnosis anyway. I would first do a full Celiac Blood Panel on any family member exhibiting signs of Celiac. Then later as financial issues allow, test the other family members.

[momof4gf]

I feel like I am in a similar situation but it started with my son vs. myself. After a visit with a naturopath I put him on a gluten free diet for neurological issues (poor coordination, weakness, daily headaches, fatigue, brain fog...) He responded beautifully and was doing things within a month that he was never able to do before! In search of more definitive answers I put him on a gluten challenge for 8 weeks which resulted in a return of all his symptoms. He then tested negative for celiac via bloodwork and biopsy and also tested negative for DQ2 and DQ8 - very frustrating! Although he tested negative I knew he had to go back on a gluten free diet based on the challenge. After the testing he even asked to go back on the gluten free diet because he was feeling so lousy and wasn't able to keep up with his peers again. He has now been back on a gluten free diet since Jan. 2nd and continues to improve. Because I saw some symptoms in my other kids, though different from my son's and less severe, I chose to make my whole house gluten free and it has been really OK. My children are 13,11,8,and 6. It's my 11-year-old that is definitely gluten intolerant and I get few complaints from the others. And lo and behold, I have seen changes in them all from less tantrums, irritability and general crankiness to fewer complaints of not feeling well ("my whole body just doesn't feel good" was a common complaint from both my 8 and 6-year-old). My 6-year-old always had very large, very foul-smelling stools which are no longer nearly as odorous. I will say that running a gluten free house does require alot more meal planning but the food is delicious! I do have to cook alot more from scratch but an internet search will provide you with tons of quick and easy meals. My biggest challenge was bread. I finally found a bread recipe and make 2 loaves on Sunday to last us the week and they like it even better than the whole wheat bread I used to give them. We all eat a ton more fruits and vegetables now and my youngest who wouldn't touch a fruit or vegetable before asks for carrots/dip and apples daily! He used to be a carb addict - all he wanted was crackers, bread and butter, granola bars... I would encourage you to try if you think all your kids could benefit and I think it's easier when everyone is gluten free because then there is nothing in the house to tempt them. I wish you luck whatever you decide. I know how frustrating it is to not have any definitive answers but I think you need to go with your gut - it won't mislead you.

[laurelfla]

I agree with Marlie--do a blood test on your son, since he is showing symptoms of something. I am so glad that my sister got tested after I had been diagnosed--her biospy showed more damage to the small intestine than I had, and she got a whole new life by going gluten-free!