How Worried Should I Be About My Son?

[ljgs]

My 13-year-old daughter was diagnosed with celiac two months ago. My husband, 10-year-old son and I immediately got blood tests which revealed that none of us were manufacturing gluten antibodies. All three of us feel fine after eating gluten, and although my son is short, he has been growing regularly since birth. For the past few years he has been at 25 percent on the height curve for his age. Today we learned that all three of us carry the celiac genes, so the doctor recommended that we all get our blood tested every two years or so for life.

Is this enough? Are there any other tests which might reveal that my son has celiac other than a blood test? He exhibits absolutely no symptoms, but I know that male siblings of celiac patients are at tremendous risk of celiac themselves. Thanks!

[cassP]

dont add worry to your life- "worry" never helps any of us.. i know- "worry" has added so much pain to my life.

anyways- its absolutely a good idea to have routine testing for you, your husband, and son.

remember that only 1 in 6 celiacs show any gut symptoms.

make sure when you're getting tested, you're eating enough gluten (@ 4 slices a day... 6 weeks to 2 or 3 months). and make sure your doc is doing a complete panel. (Ttg Iga & Igg, Antigliadin Iga & Igg, Endomysial Antibodies, and Total Iga serum)

dont stress i read 1st degree relatives have a 1 in 29 risk. while it is very common for a 1st degree relative to have it... it doesnt have to be either, but DO keep up with testing.

[kitgordon]

I don't know a lot about testing, but have you considered just going gluten free as a family? Sounds like you are all at risk for developing celiac down the road, and that would head it off. And perhaps your son might have a growth spurt - it might be worth a try, anyway. Good luck!

[Skylark]

I don't know a lot about testing, but have you considered just going gluten free as a family? Sounds like you are all at risk for developing celiac down the road, and that would head it off. And perhaps your son might have a growth spurt - it might be worth a try, anyway. Good luck!

This is a good idea, at least around the house. It will make things easier on your DD. Current thinking is that people who are genetically prone to celiac are less likely to get it if they eat less gluten.

[cassP]

Current thinking is that people who are genetically prone to celiac are less likely to get it if they eat less gluten.

i agree

[T.H.]

I don't know a lot about testing, but have you considered just going gluten free as a family?

This is what we did, with our son who also tested negative when his older sister was positive. He's on the small side, too. I have noticed a change in him after dropping gluten - oddly enough, more emotional and mood improvements than anything else (and his reaction to dairy changed). We found it so much of a challenge to keep cross-contamination from happening in the house that it was easier that way, and I had heard the same theory, that keeping him gluten free might make celiac disease less likely to trigger for him.

I'm considering giving him a gluten challenge, now that we've been doing this a year. Both my daughter's and my reactions have grown more noticeable to gluten, which seems to be pretty common. So I'm thinking that if my son is a false negative, he's likely to have a more noticeable reaction than he had in the past, you know?

It maybe be wishful thinking on my part, but it might help deal with one issue that we've fun into, which is that since he had a negative test, he's 'not a celiac' so he's much more likely than his sister to cheat on the diet if he could get away with it. I'd like to make sure and know if that's going to hurt him or not, you know? But invasive tests at his age, if he's not showing major symptoms, made me uncomfortable.

I'd say, aside from the periodic testing to keep him safe? I'd just look for any changes in your son's physical, emotional, or mental health as a warning side to start paying attention. Aside from the normal gut/weight loss stuff, the ones that my family had (we have 4 celiacs) were getting injured more and more often (not getting nutrients to keep the body healthy), weight gain and feeling hungry all the time (lasting months, so not a growth spurt), getting sick more often and healing more slowly, difficulty sleeping or sleeping too much, depression or mood issues or temper/anger/sadness control issues. My daughter's big symptom is huge crying jags for a few days in a row (she's 12). There's a list of something like, hmmm, 250 symptoms for celiacs? Might be worth hunting that down so you can stay informed, yes?

:-)