gluten-free Trial For My 11yo Was A Bust

[ruthla]

I decided to give my 11yo a shot at a gluten-free diet to see if it would help her with behavioral issues. She's been on Feingold for years but it's never helped 100%, so I thought maybe this would help. I know that my own FMS gets worse when I have gluten, but I haven't had any lab tests done on myself at this point. Considering that I react to contact with gluten, I figured celiac disease is very likely and therefore my kids could have inherited that from me.

After a week of being strictly gluten-free, I didn't see any obvious changes in her behavior. Nor did I see any major setbacks when I did a gluten challenge on Saturday.

So, if gluten affects her behavior, the changes are very subtle and there's just no way for me to tell on my own if this is something she needs to do or not. I'd hate to keep her on an overly restricted diet if it's not needed- and I'd hate to keep her gluten-free just long enough to screw up the lab tests that could be conclusive if she does indeed have a problem processing gluten.

I do plan to keep the house mostly gluten-free for my own health and sanity, but I'm not going to restrict what any of them eat away from home (except when I pack it and therefore will end up touching it.) I do still have my gluteny toaster oven and have instructed my 13yo on how to be super dooper careful when preparing and cleaning up from gluten-containing snacks for herself.

What kinds of lab tests should I ask the pediatrician about? Should I have all 3 kids tested? None of them are really due for checkups until the summer, and only my middle child shows signs of possible celiac disease- short stature (but that could just be because her dad and I are short) and behavioral issues.

[Crishelle]

If possible, I would really try to keep her on a gluten diet for now and then have your pediatrician refer you to a pediatric GI Doc to have the appropriate tests run. Here's why....We (my daughter and I) went on gluten-free diet because of a roommate who neither her nor her kids could have gluten. It was easier for her kids. I saw MAJOR improvements on myself and my daughter....So we stayed on it. I had major problems with the school system when she started school and I cannot get a GI doc to treat us as Celiac or Gluten Intolerant w/o a positive test result. It is very frustrating....I wouldn't even consider putting us back on gluten for the test; however, because my symptoms included maniac depressive episodes, constant migraines, and seizures! I would be afraid of permanently hurting my daughter....So, anyway, try to get the DR. to check it out first!

[Cinnamon]

I don't know. If you didn't see any good from the diet, and no regression from the challenge, I wouldn't worry about it for now. I would think you'd see something if gluten were a problem. I have 4 kids, and the youngest 2 definitely have gluten problems. I could see even on day 2 of the diet that I was on the right track. But I put one of my older sons who has some mild asthma and occasional rashes on a 2 week gluten-free diet and then challenged him with a big sub sandwich. Nothing happened. Nothing changed going gluten-free, and nothing changed after the gluten challenge. So I'm leaving it alone for now. It's a hard diet to stay on for a kid, and if it's not necessary, why do it.

You could always do the Enterolab testing by mail order to ease your mind, though I don't know if insurance covers it.

[confusedks]

Just FYI, a week is probably not long enough. I have been gluten-free since May of last year and I never noticed a correlation between my moods until I got glutened yesterday. I get really fatigued, anxious and depressed. My point is that it may take a little while longer for you to notice anything.

[Darn210]

Just FYI, a week is probably not long enough. I have been gluten-free since May of last year and I never noticed a correlation between my moods until I got glutened yesterday. I get really fatigued, anxious and depressed. My point is that it may take a little while longer for you to notice anything.

I agree with Kassandra. I don't think one week is long enough. Some/many may see a difference but not all. My daughter has been gluten free since April. Two weeks ago was the first time I knew she had been glutened and I saw a reaction. But I have to tell you, I can't believe that I would have gone that long without messing up somewhere.

Also, we are winding up a gluten-free trial on my son. He is small for his age. Discussing this with the pedGI, we agreed to a 6 month challenge. We were looking for a growth spurt. The doc thought if it was going to happen, it would probably start in the 2nd month since kids heal so fast. No additional growth has been observed. He was also glutened at the same time my daughter was and had no reaction, but I am sticking it out for the full 6 months.