Celiac disease, the life-changing diagnosis we received only ten days before my daughter’s 9th birthday. Now we learn, one day at a time.
“May you always serve cake in the face of great change.”
My social media sentiments to my daughter on her recent birthday, ten days after a surprise, life-changing diagnosis.
I will start by saying I know how lucky we are. Not only did we catch this early, but in terms of lifelong diseases, celiac disease is not the worst diagnosis she could have received. We can do this, we just have to make sure she doesn’t eat any gluten. As we process this part of the diagnosis and begin to picture her new life – our family’s new life – the world suddenly begins to shrink. It feels so much smaller than it did before that phone call. The grocery store has fewer items to take home, there are fewer restaurants that are safe to eat in, even visiting the houses of friends and family holds risk.
To truly empathize, you need to understand celiac disease. When you have celiac disease, removing gluten from her diet is not a choice, it is a requirement. Every crumb matters. Whether or not her stomach cramps, her head hurts, or she feels healthy and fit, the real impact of celiac disease is what it does to her insides.
What is Celiac Disease?
Celiac disease is an autoimmune disorder. Which means the immune system mistakes any gluten coming into the system as a virus and attacks it. This attack damages the small intestines making it hard to absorb nutrients, which over time leads to malnutrition. While the body is slowly becoming deficient in essential vitamins and minerals it can also start collecting other autoimmune disorders, such as Crohn’s disease or colitis. Eventually she may be diagnosed with osteoporosis, and cancer risks become marginally higher. This can all be mitigated by removing gluten from her diet.
What are the Symptoms of Celiac Disease?
We’ve been investigating my daughter’s health for a few years now. She’s a vibrant young girl, who has daily tummy aches that seem to flare up around school or leaving the house. For years we’ve suspected anxiety was causing the tummy aches. It was only recently that she was able to tell us that the pain started after meals. We went to the doctor a few times with this issue which led to testing for parasites and a few other things. Eventually we reached out to school councillors hoping there would be some discovery there, with no progress. Oddly enough, it was the onset of some weird toe pain that took us to the doctor one more time. We thought while we were there discussing her toe, we’d also revisit her old list of symptoms.
Because it was early 2021 and her symptoms included tummy aches, headaches, and her toe, we got an appointment the next day in the covid screening area with a locum (a visiting doctor, pretty common here in the North). Dressed in full pandemic doctor gear (a step down from the white jumpsuits with paper helmets you seen in sci-fi movies), a covid diagnosis was quickly brushed aside. This gave us some room to start discussing her history properly.
We talked about blood tests from the previous year, we talked about the symptoms disappearing during lockdown and school closures, only to learn that they hadn’t, she just wasn’t complaining anymore. We talked about taking gluten and dairy out of her diet at separate times with no definitive results. Eventually, stumped, he gave us a blood requisition for a few different tests to rule out various possibilities. Celiac disease was one of them. As we were about to leave, he showed us her growth chart and noted her recent drop from her own growth scale. While it was small, he was concerned.
The blood tests needed to be completed at the hospital. Which, during a pandemic required three levels of screening before we were able to make it to the waiting room, masked and in good spirits. The technicians were lovely and patient while my daughter worked up the courage to allow them to fill their vials… but eventually it was done. We went home and all was forgotten. I wasn’t really concerned. I was sure that all results would be negative.
So, on the night I was driving my son to his kickboxing class and my phone rang, I was not expecting to hear that we had a positive diagnosis for celiac disease. There are so many clichés to describe this feeling: like a blow to the gut, the wind being taken from my sails – that sort of thing – and they’d be right. But more accurately, I was taken from the road I thought I was travelling and placed – rather suddenly – on another one; an unfamiliar one. Shocked, disoriented, and with my hands still on the wheel with only darkness to guide our way… how do I proceed?
What Can We Do About It?
I love my family doctor. She’s the kind of woman that will tell you to eat more salmon, rather than prescribe you a cream for a skin rash. She’ll talk to you about gut health or call you after hours to make sure you have the information you need to move forward. This moment in our life was no different. She was the first beacon of light on this new journey guiding us in the right direction. She followed up with the pediatrician to see if our daughter would need a scope to investigate damage to her intestines and confirm her diagnoses. Patiently, she sat with me on the phone while I digested the news, answering my questions, and pointing me to websites that would help me figure out what to feed my daughter for breakfast the next morning and what to put in her lunch for school.
While I was pretty confident, after those initial moments, that I would be able to navigate the gluten free diet, my biggest concern was cross-contamination and in time that would be overtaken by advocating for my daughter. I started with basic Google searches to understand the disease better and how to handle these first steps. I made an appointment with our local library to browse the stacks, reached out to anyone I knew who had celiac disease (two, but I would eventually come to know another three in this process). I found a podcast (The Celiac Project) that I listened to while I cleaned our kitchen from top to bottom. Starting with the lights over the counter and I eventually had a friend join me to take apart all the cupboards and scour for crumbs and debris. I took a week off work to do this.
I learned. I learned, and learned, and learned. What is more, I still consider us in stage one of this process. Partly because – almost two months later – we still haven’t met with the paediatrician and a specialist appointment is still a week away.
If I was to summarize what I’ve learned in these first two months, it might look like this:
1. Every Crumb Matters
This is a quote from The Celiac Project Podcast. The smallest bit of wheat, barley, malt – some oats – and more, can make a celiac sufferer sick. If my gluten bread were to touch my daughter’s gluten free bread, that could be enough to wreak havoc on her system.
To decrease the risk of this happening, we’ve made some changes in our house. She has her own toaster, cutting board, and strainer. Because wood is porous we also have some labeled wooden spoons, for gluten free (GF) cooking.
We’ve removed most of the gluten products from our house, especially flour (which floats away and sticks to everything). Bread or crackers live on shelves below the GF products to prevent crumbs falling into foods she might eat.
She also has her own butter dish, and jam and peanut butter jars only see clean spoons dipped in rather than crumby knives. There is also a new gluten prep area in our kitchen. If you want to eat gluten bread, you prepare it there and nowhere else. All surfaces are wiped down afterwards.
2. Read the Label
Labelling laws in Canada are pretty clear. Since wheat is listed as an allergy, it needs to be plainly listed on all labels – it can’t be hidden. So that means, if a company is using yeast derived from wheat it needs to be labeled as yeast (wheat). It’s the “may contain” part that’s tricky. That is optional. But it’s important, since cross-contamination is a big deal for us now.
There are all kinds of websites and apps to help you figure out which companies are safe. It’s needed because gluten can show up in some weird spots. Most recently we’ve found it in ice cream. See… reading labels is important!
Not everyone knows how to support someone with celiac disease. Some have heard of it and for others it’s totally new. Those who have heard of it will know that gluten is the issue, but they may not be aware of how to manage the cross-contamination or what to look for when reading labels. This makes it hard to go to a friend’s home for dinner or to go out to restaurants.
My daughter was invited to the movies this week and after a confusing internet search asking about movie theatre popcorn, I reached out to our local cinema and asked to see the labels on their popcorn and butter. They quickly obliged and my instinct was confirmed, she IS able to eat that brand of movie theatre popcorn!
She’s attended birthday parties with her own cupcake in hand, and I’ve prepared a stash of brownies in the freezer at school for her to have when treats are brought into the classroom she can’t eat.
The most common misconception of celiac disease is that it’s a disease you can grow out of. Once you have it, you have it for life. There are over 300 symptoms of celiac disease, making it hard to diagnose and to understand some people’s physical reaction to ingesting gluten. Not everyone reacts the same way.
Just because it’s GF doesn’t mean it’s healthy. In fact, GF flours don’t have as much fibre as gluten flours do. Which means a GF diet needs some fruits and vegetables to help it along, especially if you’re in the early days. These first few days are often filled with ‘What can I eat?’ and experimenting with various GF labeled foods on the store shelves. Another thing to note, is that these often contain more sugar to make them taste better. So, against popular belief, eating too many processed gluten free foods will often lead to weight gain.
5. People Are Kind
We’ve had so many people reach out to walk us through their celiac journey. They’ve shared recipes, insight, knowledge, and pics of their favourite GF brands. We wouldn’t be this far along in the process if it hadn’t of been for them. Thank you!
Armed with firsthand knowledge, we wait. It can take months, if not years for the intestines to heal. That means the tummy aches will continue whether or not she’s eaten gluten, until it’s healed. Once she feels healthy again, that’s when we’ll really know how her body will actually react if she’s ingested gluten. From what we understand from our research, this can be a vast range of possibilities. We look forward to meeting with the specialist to clear this up and to confirm everything we’ve learned. We hope to eventually meet with a dietician as well to give us further guidance on how to proceed with feeding our child.
In the meantime we continue to stock our freezer with emergency treats and meals for those moments when she’s invited somewhere and its safer for us to prepare her meals. We teach her what her new life looks like, and how to share her needs with her friends and family. And in a pinch to just say no. She’ll need to learn how to use her big girl voice and to stand firm. Things every little girl should learn anyway.
*Photo credits: Little girl eating cake from Pexels. The rest are my own.