I Have Celiac, My Kids Have Dq2/dq8, Would You Take Them Gluten Free?

[celiacindiana]

Hi! Last year, I was diagnosed with celiac disease (and microscopic colitis) after a very high TTG antibody and colonscopy and endoscopy. My middle son (3) was also tested and had high antibodies (TTG=91) but endoscopy was negative for celiac (although we did find out he had lactose intolerance...which of course goes hand-in-hand with celiac!). Pediatric GI said let's test him again in 6 months. I really couldn't believe this was the advice I was getting but went with it. In 6 months when we retested, we did the gene test this time. He has the DQ2 and DQ8 which are the major celiac genes. He has been gluten free for almost 2 months now. My youngest son (1 year) had the gene test this month and came back with the DQ2 and DQ8.

What would you do? The doctor did not order the antibody test this time for him, only the gene test so I don't know if his antibodies were high. Would you go ahead and take him gluten free since his brother and myself are already gluten free? I really don't see the need to feed him gluten filled foods like poptarts, donuts from the bakery, and regular pizza to have to possibly take it all away one day. I love to bake so I make a lot of "like" gluten-filled foods but they are not the same but he will never know the difference! The only thing that complicates it is that they both go to daycare so it is an ordeal to coordinate what they will eat and it gets expensive and time consuming! Advice???

[Cara in Boston]

A positive TTG test would be enough for me to put my child on a gluten-free diet. There is something going on and waiting for damage to start before treating it just doesn't make sense to me. Adding your family history and there is even more reason not to wait around.

I have celiac disease and one of my two sons has it. I'm worried that I may never know if my older son has it since we eat mostly gluten-free at home anyway. So far he has tested negative and has no symptoms but he will get a blood test at least every two years or earlier if he shows any symptoms.

If anything comes back postive for him, I won't need further testing. We will all just be gluten-free.

If you are wrong, they can always try a gluten challenge when they are older.

Cara

[ravenwoodglass]

Children have an even higher rate of false negatives on blood and biopsy than adults do. Your son had a very high positive test. On the endo his damage may be patchy and an area that is affected that they didn't read on the scope.

Personally I would take that child gluten free. It certainly isn't going to hurt the other child to be gluten free at this stage. It would be up to you whether to let him have gluten outside your house. Not all that have the genes get the disease but IMHO it is better to be safe than sorry.

[domesticactivist]

Better safe than sorry! It will also simplify things in the kitchen for all the kids to go gluten-free.

[MsCurious]

This is just my opinion, and I'm no medical doctor, but knowing what I have learned about genetics, and the evolution of different populations, and how they have adapted to their environments over tens of thousands of years, I know that people with those two genetic markers come from ancestors who were not exposed to wheat as a food, and do not have the physical capability to digest it. Wheat is water insoluable, and while some populations have been consuming wheat for tens of thousands of years, and have develped a tolerance to it, other populations have only recently (in the big evolutionary picture) been introduced to wheat, and do not have the capability to tolerate it. People with HLA-DQ2 and DQ8 have a difficult time with this, and do better with meats, as their ancestors were hunters and gatherers, not agrarian (farming) cultures who handle wheat better.

Given the fact that your kids have those genetics, if it were me, I'd start them on a gluten free diet for life, and it sounds like they are so small that they will just accept that as their "normal" and it won't be a difficult thing for them, compared to having to "give up" things later. I don't think wheat (aside from the fiber factor) is a very wise thing for anybody to ingest, because of all the genetic modifications that have been done to create "super gluten"... that makes bread more elastic, and binds foods nicely. That's a great advancement for the processed foods industries, but its a very BAD thing for the human digestive system.

Your kids may never develop issues with wheat, or they may suffer needlessly, but there's no law that says you have to feed them wheat, barley and rye. There are lots of alternatives out there, as I am finding. Good luck to you!