Friday, June 14, 2013

Does Our Son Have Celiac?

We don't know yet. But I really, really, really hope not.

It's not a death sentence if he does, of course. With my own severe gluten intolerance, I have a very normal life, and very few health problems now that I'm on an 100% gluten free diet.

Yet I want to spare him all of the ins and outs of gluten free living. Asking ingredients. Bringing his own cupcake to the birthday party. Never feeling free to share crackers with his classmates.

There are many opinions out there on how to approach gluten with your children if you as a parent have Celiac disease or another form of gluten intolerance.

Living Without has a great article, written by a mother of two, on when she chose to introduce gluten to her children. (She waited until they were well into their 2's).

The online medical journal PLOS One suggests that introducing gluten late in infancy (after 12 months) can make it less likely those infants will end up with Celiac.

Swedish study found that infants introduced to gluten at the age of 4 months had a lower incidence of Celiac disease than those who tried it for the first time at 6 months. The connections were a bit spotty, and there are obviously other problems with this idea as well (one being that the AAP now recommends exclusive breastfeeding with no other supplemental foods until an infant is 6 months old).

The New York Times also reported that this Swedish study seemed to rely upon longer periods of breastfeeding while introducing gluten, which could signal that babies tolerated gluten better when they also ingested breast milk to help break down the proteins in gluten.

So... essentially it's all clear as mud, right? Introduce too early and you could doom your child to a life of bringing his own Ziploc of "special pretzels" to his college parties one day. Introduce it too late, and your little girl could have to order a gluten free wedding cake one day. In short, there is no conclusive evidence either way. No one knows.

So what are we planning to do with our little man?

Well, I agree wholeheartedly with Christine Boyd, author of the Living Without piece. She said that she and her husband agreed that they should do "what feels right." While this is not my approach to most of my life (Christianity certainly can't be described as an "If it feels good, do it!" type of faith tradition...), with our son and his food, this is what we've done.

My husband and I discuss, pray, and move forward. While we want our little guy to be healthy in his body, we also want him to grow up in a household that isn't fear-based. Celiac disease can be treated, food is not an enemy, and mealtime is fun!

That said, our basic approach has been fivefold:

1. To breastfeed as long as possible, both for the inherent health benefits for our son and for the possibility of helping his gut develop all that it needs to be protected against Celiac disease. He is now 8 1/2 months old and still breastfeeds (or takes pumped milk in a bottle) 8-10 times per day, including 2-3 times each night.

2. To continue to maintain a gluten free household, for my protection as well as his. He sticks his cute little fingers in my mouth regularly (not to mention all over everything else in our house), and if I had to worry each time I'm afraid he'd grow up thinking I was afraid of him. For now, keeping him gluten free means that I can be free with him.

3. To introduce fruits, vegetables, and simple proteins first. His first foods were all whole, natural foods, and organic ones, too, when possible. We rely primarily on fruits and vegetables, especially nutrient-rich ones like avocado, sweet potato, greens, blueberries, bananas, apples, and green beans.

We've introduced proteins like egg yolk, chicken, chickpeas, and black beans in stages as well, though we waited an additional month for these.

(Sometimes we make it out to visit our CSA farm, which our son loves. Unless it's raining. Then he does NOT love.)

4. To introduce gluten free grains slowly, including rice, corn, millet, sorghum and gluten free oats. He had a brief rash reaction to the oats, but has tolerated the others well. He is touch and go on rice cereal, depending on his mood.

5. To wait on the gluten... for now. At some point in the coming months we'll have a choice. While we'll always eat gluten free here in our house (I get so sick for so long, the risk just isn't worth it!), at some point when he starts toddling around he'll grab a cookie at a church potluck or snag a goldfish cracker from a little friend on the playground. Heck, he tries to eat carpet fibers and cat hair now, so I know it won't be long until our first test.

When this happens, we will watch and wait. If he has a clear reaction, we'll know and we'll begin taking the necessary precautions in public. If he doesn't have a clear reaction, we will seek to have him tested for Celiac disease when he is nears age two and begins attending toddler classes at our local preschool.

Best-case scenario, he didn't inherit my reactions to gluten. Worst-case, he has Celiac disease and begins exhibiting symptoms early. I didn't begin having serious reactions to gluten until I was 25, so there's also the chance that he will be able to be a "normal" eater throughout childhood.

Still, we will have him tested in his early toddler years, since Celiac's symptoms can so often be masked or even invisible.

(Sorry, little guy. I hope you inherited Daddy's intestines!)

What do you plan to do with your little ones and gluten?


  1. Hi Courtney,
    I love reading your blog and keeping up with your adventures in (lack of) gluten. While I myself have no issues, I have many friends who do, and I appreciate reading about the cautions of cross-contamination and how to safely prepare food for them.
    All that being said, Charlie often complains of a tummy ache. she doesn't sleep well, she randomly throws up (with no trigger we can identify, and to the point her daycare doesn't even send her home anymore because they know she's not really sick). She won't wear jeans or pants with 'buttons' because i think she doesn't like anything pushing on her tummy. At our most recent pediatrician visit, he suggested it could be a gluten issue. I'm terrified to have the test done--we are a gluten house! :) Of course, if we can make her tummy hurts go away, we will do everything we can. But, I'm terrified of having the test done!!

    Good luck with little Lincoln! Hopefully he can snag those goldfish crackers whenever he wants :)

  2. Amy - Poor little Charlie! Let me know if you ever want to talk more. It's amazing the difference eliminating gluten made for me. I went from sick ALL the time (there were days when I literally could not leave the house), and not fitting in any of my pants (hadn't gained weight, just hurty, bloated tummy!) to feeling 100% well. It was amazing.

    Don't be afraid of the test. Many doctors now just do the blood test and then a gluten elimination test. While the intestinal biopsy is necessary for 100% certainty that it's Celiac, in my opinion (and increasingly the opinion of many doctors) if the blood test is positive and eliminating gluten makes her feel better, that's all the proof you need. Whether it's Celiac or just severe gluten intolerance, the treatment's the same.

    I'm available to talk any time! Cooking gf is easier than it first seems. Prayers for you and for Charlie!

  3. Thanks, Courtney! To be clear, I'm not afraid of the test itself--just the results!
    We are monitoring her over the summer and will decide what to do come fall, when we are back in CO. It could also be a sensitivity to dairy/lactose. Definitely not an allergy (yet) to the lactose, but we have noticed its better if we limit her milk consumption--which could just be coincidence! I will definitely keep you updated, and certainly will be pestering you for recipes if it turns out it is in fact gluten! :)


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