11 Things I Wish People Knew About Celiac Disease

You’ve heard all this stuff about gluten-free diets…then you found out about celiac disease (CD)…thank god you don't have it! But, chances are someone you care about does.

As a celiac, it can be hard to voice your needs for fear of seeming “high maintenance” or “picky.” Which, in turn, makes it difficult for other people to really understand what living with the disease looks like!

First of all, you’ve made your way to this article which means you care enough to learn about the life of a celiac. Good for you! You’re going to make someone feel really accepted and understood! Now, how do you even begin to support someone with this disease? Here are some things I’ve discovered as a patient and Certified CD Patient Advocate we’d like you to know:

1). Gluten-free is not always “trendy”

Ugh, I have to take a deep breath before diving into this one. Gluten-free has gotten a bad rap because lots of people use the diet to lose weight or seem cool. What most people don’t realize is for some of us it is a medical necessity. Judging someone with CD for eating gluten-free is pretty insensitive.

2). One little microscopic piece of gluten is detrimental

Eating gluten-free can seem like a no-brainer, right? Don’t eat bread, stay away from pasta, no more cookies, and you're good! Unfortunately, that is not reality. Gluten hides in just about everything (including the glue on envelope seals!!) and it’s not easy to detect. Cross-contact can instantly ruin a good day. Eating anywhere besides your house is anxiety-inducing for a celiac. The smallest microscopic particle of gluten can leave a celiac seriously ill for weeks/months at a time. The extent to which you have to be cautious is wild.

Long story short, if a celiac is ordering food at a restaurant and checks with the waiter 10 times that the food is gluten-free, don't judge.

3). Just DON’T say “One bite won’t hurt you”

See, that’s where you're wrong…end of story.

4). It is a “chronic” illness for a reason

It has been my experience that CD exists on a spectrum. Every single case is different! You may know someone who can simply avoid gluten and be healthy, that’s great! But, on the other side of the spectrum, some patients are religiously gluten-free and still experience a lot of symptoms…it’s just the way it is.

As a chronic illness, CD isn't going away and there is currently no cure. So instead of using sentences like “it will be ok” or “don’t worry, you’ll get better” are less effective than something like “how can I help you in this moment?”

5). Brain fog is very real

Brain fog, a common symptom (but symptoms vary in everyone) for celiac disease, causes the person to easily forget things, have a hard time speaking, and really just lack mental clarity. If you suspect this going on in your celiac amico, it’s time to muster as much patience as you possibly can…because they can’t help it.

6). You could be making us sick

Ok, so we’ve established that cross-contact is the devil. But did you know you could be the source of gluten exposure for a CD friend? Examples:

You’re on a date with a celiac and you forget so you get the pasta. Then you think “hey, I really want to kiss this person!” Nope stop. You need to brush your teeth 7.2 million times before that happens.

If you live with someone with CD, I hate to break it to you but you really need to go gluten-free too. For some celiacs, it is sufficient to just designate an area of the kitchen for gluten-free shenanigans. For some other people (like myself) if you even looked at gluten this week you better go through a TSA pat-down before stepping foot in the house. Just have a conversation and see what would make that person comfortable.

7). Gluten-free food isn't appalling

I can see how talking about your disgusting gluten-free cookie that one time could be a way of showing empathy, but it is just straight up not true. At least in my house!:) Gluten-free (and paleo and whatever else) food can be really delicious! Not all of it though…I have had my fair share of horrible gluten-free bread.

If you really want to show your support, ask about your CD friend’s favorite restaurants or dishes! Have dinner with them! Eating with CD can be super isolating.

8). We know what you’re talking about

Unless someone was diagnosed as a very little kid (which totally happens), a lot of us have had a lifetime of eating gluten. I spent 16 years eating like a “normal” person. So spare us the details of your delicious piece of french bread…we know.

9). Know the stats

Here are some things you probably didn't know:

CD affects every organ of the body.

It is an autoimmune disease just like lupus, rheumatoid arthritis, or Chron's.

It affects roughly less than 1% of the population.

A life-long 100% gluten-free diet is the only treatment.

83% of celiacs are misdiagnosed and it takes an average of 8 years to get a proper diagnosis.

10). Don’t be afraid to ask us questions

Without being over the top with your inquiries, this shows that you’re interested in understanding our life! Ask away! Most of us are more than happy to answer, but also respect someone’s boundaries if they aren’t so open.

11). Staring has never been cool

Celiac disease, for the most part, is an invisible disease…you may never know someone has it! But it also can have some serious physical manifestations. When I was first getting sick I lost a dangerous amount of weight so I really looked sick, and I hated when people would make a deal about it. Some celiacs may have medical devices like feeding tubes, so don't stare at those either.

I personally wear a medical alert bracelet and one time I went out social dancing, and as I was taking the embrace with someone they pointed it out and kept asking me about it. Not in a sweet curious way, but a “why are you sick and different” way. It just isn't cool.

Phew, glad we got that out of the way! I hope you now have even more skills to be a loving friend, parent, sibling, significant other, etc! With a lot of gluten-free patience:)