Finding out a member of your family has a permanent life-changing condition can be confusing and sometimes overwhelming. If it's someone you're living with, this is likely to affect your life as well. Léa has been posting about her personal experience living with celiac. In this post, I discuss the sibling's perspective.

Everyone who knows us knows that Léa, Carina and I are very close. We spend 80% of our leisure outings together, have the same friends, sleep in the same room. People have dubbed us the Saad Sisters, PLC, and Camille's daughters for short. Inevitably, we were on this journey with Léa from the beginning.

It's hard to explain how to react to your sister's personality taking a 360, and not being able to help her. For a long time, we couldn't figure out the cause of her depression and pain. Someone who is very lively, sarcastic and funny had become pretty much bound to her bed, couldn't eat, didn't want to go out. When she finally got diagnosed, it was bittersweet. It was both a relief, we finally know where this is coming from, but also a thousand questions came up. What the heck is gluten? What do you mean it's not only in wheat? How severe is this? It's also in shampoo??? Are the symptoms reversible?

When we took in that this is going to be a condition that is going to affect all of our lifestyles, we started to research the smallest things. Here's a small compilation of a few tips and tricks on how to deal with a friend who is celiac, or has any other food allergy.

1. Cross-contamination is an issue, whether the person is anaphylactic or not.
Celiac is a silent disease, meaning the symptoms are vague, and often not visible. The most obvious thing to do is to look at labels and avoid food with gluten. But it doesn't end there. We share a kitchen and a fridge. This can be challenging when the family does not decide to go gluten-free in terms of cross-contamination. The easiest thing to do is to buy separate kitchenware. No sharing toasters or microwave ovens. Not everybody has a massive kitchen, we sure don't. You can dedicate specific pans for gluten-free use only, or place aluminum foil on the baking sheet/pan to avoid cross-contamination. Yes, it's that serious. Gluten can seep into kitchenware apparently, and washing them might not always work. We got tupperwares and labelled them "gluten-free" using them only for gluten-free foods that we can share.

For spreads, like the homemade hommos and labneh, we store them in two separate containers. This makes sandwich-making easier. This is because once the spoon or knife touches a gluten source, it contaminates the spread making it unsafe for a celiac to consume. I often cut up all my gluten free ingredients before moving onto the gluten ones. If I do take out bread before cutting my slice of cheese, or whatever, I just make sure to wash my hands before touching the cheese. It becomes second nature.

2. Check the Allergen Menu before going out
Going out to eat can be hard. We research menus before heading out. A lot of times, the waitresses and restaurant staff do not take the time to memorize the ingredients and preparation of the food they serve. This is especially in the cases where the food arrives prepackaged to the restaurant (ex. dressings, pre-cut fries, etc.). In some cases, it's the preparation in the restaurant. For instance, frying fries in the same oil as onion rings or breaded fried chicken is a source cross-contamination, and is also harmful to a person with celiac disease. It might be tough to decide on a place, but Googling and asking questions is important and helpful. It may be annoying for a busy waitress, but it's their job to answer your questions.

3. Be supportive, but not pitiful
It's hard for me to go out and have my sister not be able to eat or drink. However, it's important to not pity the person. Being supportive is important, but pitying can cause the person to be uncomfortable and sometimes feel as if they are a burden. Instead of going out, perhaps organize some fun barbecues and dinner parties. This way, they can feel included and do not have to feel anxiety or worry. Looking up 100% gluten-free restaurants, or restaurants with a dedicated gluten-free kitchen, is also a great idea. Our favorites are The Dirty Bird, in Kensington Market, and Olive and Chili, in Ottawa.

4. The symptoms can be confusing 
The vague and lingering symptoms can change the way the individual thinks in their daily life. A couple of months after cutting out gluten, Léa would complain that her stomach was hurting. I asked her if maybe she's hungry, and her response was "I'm not sure. I've had stomach pains for so long, I can't remember what hunger feels like." This is true with many aspects of her life. A lot of the symptoms are so vague and overlap with daily bodily cues that it's sometimes hard to identify whether it's a flare-up or just a "normal" feeling, unrelated to celiac.
In our experience, I think it's safe to say that if the individual has several symptoms showing up, for instance a migraine, a stomach ache and mood swings lasting several days, they have likely been glutened. Unfortunately, there isn't much we can do other than wait it out and be more aware about our daily habits, where and what we've been eating.

5. Educate yourself
Educating yourself about the condition not only shows them you care but also helps you navigate your life in a way that includes them. If people ask questions, you can answer and help bring awareness to whatever the disease is. Many dietary restrictions can seem as a fad or "pretentious". A lot of people cut out gluten because it makes them sick and they don't have the option too. However, they are perceived as obnoxious and demanding, when this is often not the case at all.

I once worked in a restaurant where a kitchen member told me that it's not their problem that the customer has an allergy. I not only took offense to that but also learned that some people do not care and are ignorant about allergies. Perhaps they are taking their health for granted, but I'd rather not get someone sick and keep their experience pleasant, whatever the occasion.

I hope these few tips helped you learn more about the effects of celiac from a social stand point. If you have any tips/trick for us, please let us know!!

- Patty :)