Celiac is a permanent lifestyle change. A change that is difficult, expensive and involves more than just avoiding bread. For someone with Celiac, indulging in gluten containing food is never okay. Ever. Below, I touch on things every Celiac wants their friends, family and co-workers to know.
So What Exactly Is Celiac?
Celiac isn't an allergy, intolerance or preference. It's an autoimmune digestive disorder which causes damage to the small intestine when gluten is ingested. Contrary to most people's understanding, this is not a new disease. In fact, Celiac was first discovered by the Greek physician, Aretaeus of Cappadocia who lived in the first century A.D. He wrote about "The Coeliac Affection" and named it koliakos which is derived from the Greek word koelia, meaning abdomen.
Celiac is a serious autoimmune condition where the body ultimately views gluten as the enemy. Thus creating a hostile reaction to it. Following a strict gluten-free diet isn't glamorous and it requires extra work to ensure that it's also healthy.
Common Overlooked Dangers
Taking precautions to prevent cross contamination (both home and away) is a necessary effort. Though it may seem exuberant, it's important to ensure some kitchen items are deemed Celiac only. Examples such include:
toaster
cutting board
colander
condiments
It's also important to be mindful of food courts, break rooms and other eating areas away from home. The tables may not always be sanitised before you sit down and can harbour crumbs from previous diners.
Reading food labels can be tricky. Take your time and learn the various terms for gluten and become versed in proper label reading. The Canadian Celiac Association provides a great resource for label reading.
Myths, Lies, And Misunderstandings
Celiac is a life long condition as currently there is NO CURE. That means adhering to a 100% gluten-free diet is essential. Contrary to what some companies may try to slyly sway you into believing, no pill or ritual out there will allow you to safely ingest gluten. Period.
Though it seems to still be happening, starting a gluten-free diet before proper testing is a monster no-no. Why? Because if you are in fact Celiac, your body will begin to heal on a gluten-free diet which will result in a false negative test result.
Simply following a gluten-free diet blindly is never a good idea. Many of the foods are high in fat and sugar, as well as low in essential nutrients such as iron, fibre and vitamin B. Believe it or not, this can actually cause weight gain. It's a process to eat healthy on a gluten-free diet as we have to work harder to ensure that the healthy food makes its way into our routine. This involves a lot of planning and straying from the convenience of pre-packaged foods. Especially if away from home.
Don't Get Caught Up In Myths
- Deep frying doesn't destroy gluten
- Ancient Grains like Spelt aren't safe- they're in the wheat family
- Celiac is in not a result of GMO's
- Crumbs are a big deal. Even a little bit is harmful to a Celiac
- Lack of physical reaction is not an indication of safety. Even without a noticeable reaction, gluten consumption is harmful.
- Celiacs don't need to avoid all grains. Unless you have another condition, wheat gluten is the only thing you need avoid.
The Complexity Of It All
Celiac has been associated with over 300 different symptoms. Crazy right?! Not everyone has the same telltale signs. Some people are what is known as "Silent Celiac", meaning they show no noticeable symptoms (also known as asymptomatic) of the disease. This is why proper testing is very important. Self-diagnosing and assuming you're Celiac can be a dangerous road to follow. By not taking the proper steps for diagnosis, you are potentially putting yourself at risk. You know all those symptoms linked to Celiac? They can be signs of other conditions as well. Thus making diagnosis tricky and solidifying the need for accuracy. What if you aren't actually Celiac, but have a health issue only masked by the gluten-free diet? You won't get the treatment you need and you will wonder why you're still sick or what's been "glutening" you. You're also less likely to adhere to the gluten-free lifestyle without having been correctly tested.
The Genetic Link
Celiac is genetically inherited, but not everyone with the gene will develop the disease. Providing genetic markers are present, there is a 1 in 10 risk of a first-degree (parent, child, sibling) relative developing Celiac disease.
Complications
Unlike wheat products, most gluten-free items are not fortified.This results in vitamin deficiency for many with Celiac. It's important to ensure you are getting sufficient iron, calcium, Vitamin D, B6, B12, zinc and folate.
Untreated, Celiac can lead to a whole slew of other autoimmune disorders, including MS, Diabetes, Osteoporosis, neurological conditions, pancreatic problems and gastrointestinal cancers.
Etiquette And Support
A positive support network is crucial to for everyone with Celiac. Whether it's an encouraging shoulder to lean on or an ear to rant to, simply being a bright presence makes our journey a little easier.
Though others may mean well by asking questions, there are some things that really should be avoided. Some questions and comments we field tend to be less than empathetic and kind of inconsiderate.
Let's talk etiquette and what falls under the please don't even category
"That must suck"
"Don't be dramatic"
"I feel sorry for you"
"Just a little won't hurt"
"I'd die if I couldn't eat gluten"
"If you take xyz you can eat gluten again"
"My friend's Naturopath say xyz will cure Celiac"
"I'd never be able to give up my favourite foods"
It's also important to understand that we may not always feel comfortable eating away from home. Even if it's something a friend or a family member has gone to the effort of making gluten-free. Not everyone understands the detailed prep involved in ensuring gluten-free food stays gluten-free. For people who are not immersed in the Celiac lifestyle, it can be easy to overlook areas of cross contamination. We mean no offence when we politely decline. Trust us. We really want to be able to trust you and eat the food you have so graciously prepared. But, we have also all had that one experience where we've reacted to food made by others. So when we say "no thank you" please just let it be and don't pressure us or become irritated.
Love ,
your friendly neighbourhood Celiac