Hi and welcome to the Parent’s Corner. Since this issue is coined “new beginnings”, I’ll chat today on being pregnant and raising a child while living with celiac disease. In case you are not familiar, Celiac Canada defines Celiac disease (CD) as a common disorder that is estimated to affect about one percent of the population. It is a condition in which the absorptive surface of the small intestine is damaged by a substance called gluten. Gluten is a group of proteins present in wheat, rye and barley and their cross bred grains. The damage to the intestine can lead to a variety of symptoms and result in an inability of the body to absorb nutrients such as protein, fat, carbohydrates, vitamins and minerals, which are necessary for good health.
Let me give you a bit of backstory on myself, I’m Ashley and I’ve been living with Celiac Disease for half my life now. I was diagnosed back in 2005. The period of time leading up to my diagnosis was actually quite a confusing time for me.
I was about 18 at the time and went through a period of unexplained weight loss despite not making changes to my diet or exercise routine. I also felt tired during class, despite getting proper amount of sleep. I felt nauseated after eating and couldn’t find a solution to the breakouts/rashes I would get on my neck. Time and time again my physician, who was quite uneducated on Celiac Disease at the time, kept telling me I had Irritable Bowel Syndrome (IBS) but I didn’t quite buy that diagnosis. After falling ill on a vacation with my family I finally was able to convince my doctor to send me to an allergist. It was there that he started running a bunch of tests on me, including the Celiac Panel, and the rest is history. Living gluten free has definitely come a long way since then.
I had my first child Ariana, now three, at the beginning of the pandemic. Let me take you back to pregnancy. Naturally, I was concerned about my ability to conceive. Women with controlled celiac disease have roughly the same chance of getting pregnant as other women in their age bracket. Regarding accidental gluten exposure while pregnant, there is no hard evidence to link to an adverse outcome like miscarriage or stillbirth. The real risk would be getting glutened and dehydrated as that is a risk to the fetus. However, pregnant women with undiagnosed/untreated celiac are at higher risk for miscarriage, infertility, intrauterine growth restriction and low-birthweight babies.
Aside from following a strict gluten-free diet, it is important to be taking a gluten-free prenatal vitamin to help prevent neural tube defects. Gluten-free foods are less likely to be fortified or enriched with folate, so it’s important to ensure that your prenatal vitamin contains it. A gluten-free diet may also be lacking in key nutrients such as calcium, iron and magnesium. Your health practitioner will help provide guidance on supplements and nutrition advice unique to your personal health situation.
After birth, you might be wondering if your child also has celiac disease. My “three-nager” Ariana on the other hand has been tested for celiac twice now via bloodwork and has thankfully been negative both times. There is a chance that your child can inherit celiac disease from you, but this is not something that can be screened during pregnancy. The risk that celiac disease will develop is between 4-16% of children born to someone who has been diagnosed (mother or father). I don’t know what the future holds for Ariana, but in the meantime, I will continue to monitor her and have conversations with her paediatrician on an annual basis. I’d like to think that if I were to pass on my celiac gene to my child, that I would be the best advocate there is. In the meantime, take full advantage of free screening blood work in Ontario.
You may not be aware, but to be accurately screened for celiac disease, you need to be eating gluten. Generally, in the absence of symptoms that means, children aren’t screened until they are toddlers. The current advice states that you should feed gluten when you first introduce solids to children.
The guidelines say that at-risk infants should eat less than 5 grams of gluten-containing food on average per day beginning when food is introduced to a baby at 4-to-6 months and continuing until the age of 2. That equals less than an ounce of pasta or one slice of bread, Stefano Guandalini, M.D. When Ariana was a baby, I started with oat cereal and eventually moved on to bread, crackers and pasta.
You might be thinking, well your child can eat gluten, but you can’t. What does your household situation look like? I personally grew up in a shared household and know that it is possible to do safely, with a few extra precautions. For my personal situation, Ariana mainly eats gluten outside of the house with her father (we are not together) and at daycare. However, if she does consume it with me, I just ensure to wash my hands after handling it. Do I have a bit of anxiety over the never-ending messes that children make? Yes, these feelings are normal, but soap and water does the trick.
Some general tips I would recommend is having a separate toaster, separate pots if you’re cooking different types of pasta, and having labelled condiment jars so that there’s no confusion or accidental glutenings.
Unfortunately, it’s not just food we need to be concerned with. Did you know that play dough also contains gluten? In this case, you may wish to opt to make your own or else Kinetic Sand is a great option that is naturally gluten free. Always do your due diligence and read labels.
If your child is celiac, know that they are not alone and it is not the end of the world. Celiac Canada has a lot of great resources for parents, teachers and heading off to camp. I would suggest working with your child to show them all the safe foods that are naturally gluten free, “Focussing on what you can have, not what you can’t”. Being gluten free doesn’t mean your child needs to miss out on special events either, just have a safe treat ready for those situations. Might I also recommend the book “Violet and the Crumbs” to add to your child’s library? It is a great starting point for conversations on allergies and dietary restrictions. It will help empower your child in communicating and advocating for themselves.
Parent's Corner is written by Ashley Gismondi
Ashley runs a Gluten Free Mamas Group on Facebook, which is a supportive community geared towards millennial-ish women living with celiac disease or other gluten related disorders who are currently pregnant, are moms, or are trying to conceive. The group is small, but growing, and is filled with women that are curious about the best pre-natal vitamins to take, easy gluten free freezer meals, what to pack in their hospital bag, safe snacks for kids at school and more. She truly believes motherhood takes a village, which is why she created this space. Find it by searching "The Gluten Free Mamas".
If you’re interested in connecting with Ashley or have any questions, please email her at celiacandthe6ix@gmail.com or connect with her on Instagram: @celiacandthe6ix
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