Gene Tests In

[Annie/NM]

I have a 4 year old that has been gluten-free for 6 months and now after positive bloodwork/biopsy I have been gluten-free for 3 months. My 6 year old tested negative for the genes but my 2 year old has the DQ2 like I do. Is there any sort of protocol for how often to do the antibody screening on him? I am relieved that I don't need to worry about my oldest but the 2 year old is somewhat symptomatic but his bloodwork was negative 6 months ago.

[FeedIndy]

I had heard once that you should screen 1st degree relatives of a celiac (sibs, parents, children) every 2-3 years. OTOH, you might find that a gluten free household is easier than half and half. It is especially difficult on a child of that age to be left out of certain things that your 6-year-old can have. Also, they don't yet understand what is and isn't gluten free so it is all too easy to have accidents.

I had some issues with this with my kids. The youngest was finding things the older 2 were dropping and staying very ill-she is only 1 so food on the floor is fair game. When we decided to put all 3 kids on the gluten free diet, we discovered things we didn't realize were symptoms had disappeared. Now all 3 girls are purposefully gluten free, but it was hard for my 4-year-old before I got rid of everything. She can't read and it just doesn't occur to her to ask yet so she was just grabbing whatever she wanted.

[Nantzie]

They say that testing on young kids isn't very reliable. I would say it's personal choice whether you want to put him gluten-free. I'm not sure how often you should retest. If it were me, I'd say once a year? I'm not sure though.

I put my 4yo gluten-free six months ago because she was having stomach aches and anxiety attacks (just afraid of EVERYTHING). She had a huge improvement and even as young as she is, still doesn't want anything to do with gluten.

We put my then 2yo (3 now) gluten-free not long after that mostly because we decided to do a gluten-free household. Complete personality change. Knowing my symptoms and how he seemed to feel, I think he might have been having headaches as well. (?)

If either of my kids had had only vague improvement I wouldn't have them be gluten-free. But I'm glad I did it because their improvement was so dramatic.

I think it's not something to be entered into lightly at an age where they can't speak for themselves and tell you what does or doesn't hurt or bother them. But if the improvement is there, it's completely worth it.

Nancy

[Nic]

I have two sons and my oldest has Celiac and my youngest doesn't have the Celiac gene at all so I don't see any reason for him to be completely gluten free. My oldest was diagnosed at 4 years old and from that point on he understood that his body is confused and thinks that gluten is a poison. He knows what kinds of food gluten is in and therefore never even touches food he knows contain gluten. If he is unsure he asks if he can have it. I may just be lucky that at six he is so good about it but I feel that he really does have a firm understanding. We all eat gluten free for dinner but I do my best to by substitutes for the foods he can't eat that my younger son can. For example, the little one was eating Stouffers mac and cheese the other day so my oldest was eating the Glutino mac and cheese. He knows which is his and not to touch his brothers.

Nicole

[Annie/NM]

My 4 year old is great like that. He tells people at school and church or parties. I can't have that, it isn't gluten-free. I think I mostly just hate starting the 2 year old on the diet unless he truly has it. It wouldn't be hard to be gluten-free at home it is at other's people houses that I'm worried about. I guess I will try the one to 2 years unless he seems symptomatic. The doctors don't even know what to do! Thanks for you input.

[Ursa Major]

Annie, if the two-year-old has the genes, and is somewhat symptomatic, it is likely that he has celiac disease. Why wait until his villi are destroyed before you put him on the gluten-free diet? The blood work will only be positive if there is extensive damage already, and even then is VERY unreliable in a child that young.

It would make sense to try him on the gluten-free diet. You may realize that he does have lots of symptoms, which you didn't realize were symptoms.

Also, if you put him on the diet for a while and then challenge him with gluten, you should get a pretty obvious reaction if he has celiac disease.

[chrissy]

one of our kids does not have celiac, but does have the DQ2 gene. our ped gi has told us to havae him tested yearly, or sooner if he develops symptoms, or if we just happen to be running blood work for some other reason.