My 16 month old DS is gluten intolerant!

[beingmommy]

I am shocked. I was sure he was fine. His weight gain had slowed in the last few months but I thought it was because he not that into solids and had started walking and got four molars.

BUT his doc had a blood test run and he has two of the three antibodies for celiac.

I am disappointed. And embarrassed that I was so sure he was fine. I thought our doc was over reacting but I should be so glad that she wanted to investigate. She asked us to go gluten free just in case and I did thinking it would only be for a short time. We've been 100% gluten free for 11 days now.

So, other than having to assume my momma instincts suck, where do we go from here? Will he have to be gluten free forever? Can it ever be outgrown? Any tips for raising a gluten free toddler (i.e. yesterday he grabbed a wheat cracker from another baby and I snatched it out of his hand without thinking - he looked so hurt )?

[kjbrown92]

Well if he's got actual celiac (which they'll do a biopsy to confirm, but I think you're supposed to stay on gluten until then), it's not something you outgrow.
There are lots of gluten-free websites. There's a gluten free forum. www.allergygrocer.com is a good place, as well as Bob's Red Mill, and even amazon.com does specialty foods (with free shipping sometimes). There are recipes in the sticky at the top of the page. We're gluten free here and it's not THAT difficult. Yes, you'll have to make changes. No, it's not the end of the world. Red Robin and Outback Steakhouse have gluten free menus. And now, more than ever, people are marking things/packaging things that say gluten free, so it's not as hard as it used to be. There's rice pasta, quinoa pasta, and corn pasta (my personal favorite). There's tapioca starch or sweet potato flour (or cornstarch) to thicken gravy.

[Ruthla]

I think it will get easier in time. Your baby will soon adjust to the idea that there are foods that aren't safe for him and he'll learn to ask you for permission before eating ANYTHING. Having a complete gluten-free house (or as much as possible) will make life easier as well, so you don't have to worry about him accidentally getting glutened at home by eating the crumbs somebody else dropped under the kitchen table, helping himself to something innapropriate from the pantry, etc.

The hardest part is in the beginning when you're first making the changes, then you think everything's figured out, then you hit another rough spot when you crave something you can no longer have (there are a bunch of ups and downs in this journey) and then you accept and adapt to the restrictions. It's probably harder for you than for him.

[beingmommy]

Thanks for the info!

Originally Posted by kjbrown92

Well if he's got actual celiac (which they'll do a biopsy to confirm, but I think you're supposed to stay on gluten until then), it's not something you outgrow.

Our doc is a naturopath and she recommended against doing the biopsy since it is very invasive. Her read on the test results is that at worst he has celiac and at best he has a gluten sensitivity. So, either way we'd be going gluten free (me too since I am BFing). I think this makes sense. He's been through a lot already and I really don't want him to have to have such an invasive procedure. We can always do a gluten challenge when he's older.

It's definitely going to be harder for me. I do not do well on restrictive diets. But at least this is for him and that makes it easier for me to stick to it. I also stocked the house with tons of fun gluten-free stuff for me (cookies and chips) so I at least have something "bad" to munch on when I feel deprived.

I've had (what I thought) was IBS my whole adult life. Hmmmm, makes me wonder if I'll see improvement in me too.

[chaoticzenmom]

What antibodies? I wonder if my naturapath should have run those tests. We did the IGg testing and it showed a high allergy to all of the wheat family, so she told us that she thinks he's got celiacs. We're trying to do the gf diet, but it's going poorly. My son has a heart condition which we're hoping will be fixed if he's on a gf diet.

Do you remember the name of the antibody test? I might want to ask her for it. We won't do the tissue sample either, but the antibodies would be good to know.

[kjbrown92]

My friend's kids went through the biopsy. The only thing I can see that it's good for is that if you're diagnosed celiac then you can take the cost of gluten-free food off as part of your medical bill deduction for the IRS. You'll see that it gets expensive.

You never know, the IBS could be cleared up. I went off soy with my kids, and my IBS symptoms went away. Then I went off dairy and gluten with them, and my back pain went away. Go figure.

[beingmommy]

That is interesting about the medical deduction. It's something to think about for later. I think I just want him to be left alone for a while. He's a highly sensitive little guy and only 16 months old so he does not understand what is going on. He cries non stop at every doctor visit because he associates it with yuckiness.

I do not know what the antibody test is called. She just said that there are three antibodies to check for that show that your body is mounting a defense against the gluten. He had two of the three antibodies. The third antibody indicates gut damage but since he is so young she said he may not show a lot of gut damage yet. He has been on probiotics since he was very small and I wonder if that helped protect his gut.

[kjbrown92]

The other thing they test for is the gene. The gene for celiac is carried with the one for type 1 diabetes (which is why my friend's 2 kids were even tested for celiac -- both were asymptomatic but both showed damage during the biopsy, they test all the diabetics at their Children's Hospital for celiac).

[SuzymomofLaura]

Just wanted to send good vibes your way :
I guess we're practically in the same boat, my DD is now almost 17 months old, and the two of us have gone GF since her first birthday. ITA on the invasive testing, we won't do that one in a hurry either! If you like to cook and bake going GF isn't that hard; at home, that is. Being super alert around other children will become a second nature soon enough too, although I resent that part of my role, not being laid back any longer the most, I think.
AND: don't worry about the slow weight gain, you'll see he will make up for that real fast once his gut isn't compromised by gluten anymore!

Oh, I forgot, you asked for tips. What we do is bring a box with safe foods and special treats with us wherever we go, so she can have something she likes when the not gf children have something to eat. And do look for hidden gluten in playdoh, glue, finger paint and such, they tend to chew on the yuckiest thing at this age :