I’m Gluten Free!

May is Celiac Awareness Month and for the last 12 years I’ve had to navigate an auto-immune disease that hasn’t always been taken seriously. It’s strange, no one bats an eye when someone says they’re lactose intolerant but say you’re gluten intolerant or have Celiac’s and everyone loses their mind. We have celebrity trends to thank for that! When the term “gluten free” first hit mainstream media, it was praised by celebrities as a quick way towards a successful weight loss journey (mostly because you’re no longer eating bread in every meal throughout the day. This comes from a girl whose go-to breakfast were morning buns from Napa Valley Coffee Roasting Co. every day and burritos for lunch). The reality of living with Celiac disease however is far from the glamorous lifestyle as it was originally presented by celebrities.

Celiac Problem #1: Is it even that bad? It’s not like it could kill you or something

Please, tell me more about how a little laxative wouldn’t bother you! But you’re right, maybe it won’t kill me instantly, however a moment on the lips will really just result in a lifetime on the toilet. In reality, it’s that bad. Have you heard of “villous atrophy?” Probably not unless you’ve also dealt with intestinal issues. Imaging your intestinal lining has little seaweed like things growing from it. These are your villi—this is what helps you absorb all the nutrients in your food. For someone like myself, gluten is the lightsaber that upon immediate contact will burn those babies down until there’s nothing left, eventually creating sunburn-like sores on your intestine that are excruciatingly painful and can eventually result in intestinal cancer…so yes, it can kill me.

Celiac Problem #2: When people tell you that you’re lucky that you have Celiac because you must be eating a lot healthier.

I would hope that we would all want to establish healthy meal consumptions throughout the day, and don’t think we should wait until we develop an auto-immune disease that can cause you intestinal cancer, weight loss fluctuation, intestinal pain and bloating, and more. Yes, those who suffer from Celiac disease eat healthier but it’s often at a higher price…literally.

Celiac Problem #3: “We might have to take out a second mortgage if we keep buying gluten free bread!”

Maintaining a strict gluten-free diet comes with a high price tag—reflected in your health and wellbeing, as well as your grocery expenses! They say time is money, and I’ve spent a lot of time in aisles reading the back labels of every box, package, and canned goods. Knowing I needed to avoid gluten meant I even had to re-evaluate the tuna cans I was purchasing (Did you know soy is used in almost everything because it acts as a preservative?)! Goodbye Starkist $1 tuna, hello $4 Wild Planet. Couple that with the reality that gluten free bread costs twice as much as normal wheat bread, yet is half the size—please, tell me again why I’m so lucky to have Celiac’s? While I’ve become accustomed over the years reading the back labels of everything, I will never be accustomed to the feeling my bank account and I get every time I leave the grocery store and realizing how bad packaged food is for us with all of these crazy preservatives.

Celiac Problem #4: Lead, Uranium and Cocaine are also gluten free. Watch out for health buzzwords.

All too often products read and label themselves as gluten free, however my intestinal tract will tell you there are plenty of liars in the world. Don’t be fooled by the little “gf” symbol you read on the dinner menu at your favorite restaurant or on the front of a box. I used to joke and say the “gf” stood for my initials and that’s how I knew what was safe and meant for me, but then quickly learned that’s not the case—ever heard of cross-contamination or FDA regulations? “Gluten free food” is technically allowed to have 20ppm of gluten according to the FDA…so technically we should call this gluten-somewhat-free. Whenever I dine out, despite seeing the “gf” symbol, I also have to ask what feels like 50,000 questions before ordering—do you use soy oil or olive oil for cooking; are your fries fried in a common fryer that touches other products containing wheat, rye, or barley; is your burger prepared on a separate grill that doesn’t touch the buns? Cross contamination is a big deal and the real deal. In addition to not eating wheat, rye, barley, and oats, soy can often be subject to (LOTS of) gluten cross-contamination—mostly as a result of how it’s grown. Farmers commonly grow soybeans in rotation with wheat crops which results in farmers using the same fields to grow soy and wheat, along with the same combines to harvest them, the same storage facilities to keep them, and the same trucks to transport them to market. A 2010 study by celiac dietitian Tricia Thompson found that soy was one of the most cross-contaminated grains. In fact, one sample of soy flour contained a whopping 2,925 parts per million of gluten (remember the FDA allows food to be considered gluten-free as long as it’s less than 20ppm). So while some might view my unique nutritional needs as a constant hassle, over the years I’ve learned it’s important for everything to be calculated and to not feel guilty for advocating for my health (shall we revisit “intestinal cancer”?).

So how can you help?

1. If hosting a party, have options available that your celiac friends can eat. Do your due diligence and read the back labels of products and check to make sure they’re free of wheat, rye, barley, oats, and soy. If you’re personally doing the cooking, be mindful of cross contamination.
2. If dining out, choose a restaurant ahead of time that you know will have gluten free/celiac friendly option (salads can be delicious, but we don’t want this to be our default meal every time)!
3. Avoid saying things like: “I wish I couldn’t eat anything so I could lose weight easily too” or “you’re so lucky.” My weight has always fluctuated as a result of living with Celiac’s Disease, and there are plenty of moments where it’s made me self-conscious throughout the years. When I’ve had a super bad contamination episode, I’ve had to go on a liquid diet for 3 – 5 days due to stomach sensitivity and I instantly shed up to 10 lbs (only to gain it back later). This creates an emotional, mental, and physical toll, of which also impacts the severe anemia many of us must navigate. These compounding stressors are nothing to glamorize.
4. If you’re an employer, understand that “mental fogginess” is real. Exposure to gluten completely shuts down our body and we become exhausted. Our ability to focus, feel motivated, or problem solve is clouded and it’s emotionally challenging to navigate when others around don’t provide the support and resources one needs. Try to be understanding and know this isn’t something someone is making up to get out of their 4th back-to-back meeting.