Food is a constant presence in our lives, and when one of the most frequently used ingredients can make you very sick, food-related events can be stressful. There are many misconceptions about celiac disease and most come from a lack of understanding of the nature of the disease and the social impacts of food restrictions. Here are five things everyone should know about celiac disease:
1. Celiac disease is real, and it isn’t just digestive upset.
In the simplest terms, celiac disease is a disorder that causes malabsorption by damaging the intestines. The effects go beyond digestive upset and the damage can last for weeks. For me, symptoms last 7-14 days depending on how much gluten I ate. During this time, I am unable to absorb food properly which means rapid, unhealthy weight loss, vitamin deficiencies, exhaustion, and brain fog.
Additionally, because it is an autoimmune disease (your body is attacking itself), many of us also get flu-like symptoms like fevers, aches and pains, and stomach upset. We are very careful because one small mistake can lead to rapid decrease in our overall health.
2. A very small trace of gluten is enough to trigger a full-blown celiac “attack”.
Celiac disease works like a light switch. When the switch is off, we feel fine. However, one small trace of gluten flips that switch and the whole autoimmune cascade begins (the flu-like symptoms).
In several celiac aware countries, federal regulations require gluten-free labeled foods to test negative for the gluten protein at 5ppm or less. This means 5 parts per million (ppm), or less than 5 tiny granules of wheat flour in 999,995 granules of gluten-free flour is enough to flip the celiac switch in the wrong direction.
I currently live in the USA, and the regulation is 20ppm; however, medical studies indicate that even this amount can be harmful. We need to be very careful, and this is why avoiding cross contamination (refusing to prepare our food with cookware used for gluten items) is so important.
3. Gluten can be in anything.
This means “naturally gluten-free foods” like rice, beans, broth, etc. can be dangerous too. But how can this be true?
Since the celiac “on switch” is so sensitive, gluten-free foods processed on the same lines or with the same equipment as wheat products can still gluten us. Spices often have an additional ingredient to prevent caking and this is sometimes wheat, and there is wheat in soy sauce. I’ve found gluten in food coloring, chicken broth, hard ciders, and natural flavors. Non-food items such as powdered gloves, makeup, lotions, and even nail polish can have gluten too!
We may seem like paranoid people, but this is justified. All of us have glutened ourselves unintentionally with seemingly safe things. Which brings me to the next point:
4. It took many of us months on the gluten-free diet before we finally got it right, and we certainly don’t expect you to get it on the first try!
I have wonderful friends and family who love to host, and making me feel included is important to them. I love them dearly, so when they try to cook something for me and it is still not celiac-safe, I feel terrible and worry about hurting their feelings.
This puts me in a sticky situation: my options are to eat the unsafe food anyway and get glutened or to make you upset by refusing your extra effort on my account. This is one of the worst social situations for a celiac to experience because one choice sacrifices our health and we fear the other will hurt our friendship.
But friends, there is an easy solution to this! Please talk to your gluten-free friend. All of our sensitivities are a little different, and we want to work with you to avoid this social faux pas. My personal favorite is a dinner party where I bring my own food. Sounds unconventional, but I feel great, I can focus on the event, and I get to spend time with you! Isn’t that what it’s all about?
I also enjoy cooking with friends so I can help make sure the food is safe. Celiacs are used to cooking frequently so most of us will not shy away from cooking with you ❤
5. Disinfecting cookware does not “kill” gluten.
I appreciate your efforts a lot, but gluten is not alive; therefore it cannot be killed. It is a protein (large molecule like from chemistry class) and it becomes sticky when wet. So, when you disinfect your dishes, the water helps the gluten stick to the dishes. Yikes!
Best practices for making a dish safe for a celiac? Talk with your friend to see what makes them feel safe. For me, placing a piece of foil over the plate is an excellent solution. I can also bring my own cookware (and maybe even my own food 😉).
A note of thanks:
To whomever you are reading this, thank you for thinking of your gluten-free friends! Whether you are celiac and thinking of yourself (yes, you can be your own friend) or you love or care for a gluten-free person, this is the first step to showing them how much you care and impressing them with your gluten-free knowledge. People with dietary restrictions are a grateful bunch, and we appreciate you!