Celiac basics for patients & those that love us

So what IS celiac disease?

This is a question I answer all too frequently. Usually someone will interject that it is a food allergy. No, it isn’t. I’m not allergic in the same way that someone is allergic to bees or peanuts.  Celiac disease is considered to be an autoimmune disorder. Our small intestine normally has villi, small fingerlike projections that stick inward helping our body absorb what we eat. In celiac disease, our body begins to attack these villi, destroying them. Without these projections, we cannot absorb nutrients well. Untreated, celiac disease can lead to osteoporosis, infertility, and even cancer.  The tricky thing with celiac disease is that not everyone’s symptoms are the same. Yes, of course, there are the most common symptoms of abdominal cramping and diarrhea, but that does not mean every celiac patient has those symptoms!

Now you may have heard of gluten insensitivity and wheat allergies. They are not the same. However, celiac disease(CD), non-celiac gluten sensitivity (NCGS) and wheat allergies all fall under the same umbrella term of “gluten intolerance.” The end result is the same- avoid gluten because it is doing some form of damage, however, the mechanism of damage is different for each. You may wonder “what difference does it make?” Well, ultimately it doesn’t when you are considering treatment- the gluten free diet is ideal for all three. However, the genetics of celiac disease and the associated illnesses apply to CELIAC DISEASE. This makes a huge difference when we are looking at long term prognosis and symptoms as well as what it means for our families due to genetics.

If you’re reading this blog, you either 1) have celiac disease, 2) love someone with celiac disease, 3) love the gluten free diet, or 4) are learning about celiac disease for other random purposes.  This post is directed to those who love us. If you have celiac disease- you get it. You know what happens. If you don’t have celiac disease, you have to work really hard to understand and learn “the rules.”  Trust me, my fiancé took a while to figure out what it would be like to date someone with celiac disease and 3 years later, he’s still learning. It can be daunting, but it’s doable! I’m going to try to keep this pretty straightforward so consider it your celiac disease 101. Eventually you’ll move up to the next course!

What happens if you eat gluten?

Well, like I said, everyone is different. It can range from abdominal bloating and pain, chronic diarrhea, nausea/vomiting, constipation, fatigue, etc. (here’s a list!)  Most commonly, your loved one will end up with abdominal cramps and diarrhea. It’s not pleasant. It can last a few hours, or a few days. Plus, its embarassing. I don’t want to tell anyone that I have diarrhea constantly- and they don’t want to hear about it either. Some people end up with rashes including dermatitis herpetiformis, psoriasis, eczema, and even with oral ulcers. This makes for very unhappy people!

What is the hardest part of the gluten free diet?

Oddly enough, at this point, I don’t think the diet is too hard. For ME, when I’m in control. See? There’s the catch.  I feel safe in my bubble, but we can’t all live in a bubble now can we? Now for me to give that control over to someone at a restaurant or, even more worse- at their own house, is pretty daunting. I’m usually confident that if the chef/waitress understand “gluten free” that they will be able to figure out what I can/cannot eat, especially if they are able to come up with substitutions without hesitating. My friends? Well, they are well meaning, but more often than not, unreliable. My close friends and family will usually run over the list of ingredients with me, but I feel bad sometimes asking people to securitize their labels.  This is usually when I’m just getting to know someone or I’m a guest of someone I’ve never really met.  That being said, I usually get over it pretty quickly though because I’m not willing to suffer for their benefit. (Okay unless it was my niece that tried really hard to share her birthday cake with me by removing all of the cake and giving me just frosting- full of cake crumbs. Yeah, I ate a bite. But she’s beyond adorable and how could I tell a 6 year old she didn’t do it right?)

Cross contamination is a real concern. I love my friends and family but sometimes they don’t get it either so don’t feel too bad. Gluten can hide in lots of places, you can’t just wipe off a pan used for gluten containing food and cook something gluten free. Same with the barbeque grill. In my house, we line everything with foil or parchment paper. This saves a ton of time worrying and aggravation when I realize something isn’t right just a little too late. I used to have a completely gluten free household, but since my fiancé moved in, cross contamination has become an issue.

Other than food, what else contains gluten?

Makeup, lotion, lipstick, shampoo, soaps, you name it. The list is long, and it’s hidden in a lot of different things. You don’t have to master it all. I usually recommend picking a few different things in each category.  Here’s a list of a few gluten free lotions. Are there more? Absolutely! But please don’t overwhelm yourself. I recommend my patient’s and families find a few go to items in each category. Once you’re comfortable, feel free to add to your own list, but remember to check ingredients with the companies because they can change without warning. Going gluten free isn’t just about sticking to a diet. It’s a lifestyle.

What can other’s do to keep celiacs safe?

It’s simple. Avoid cross contamination. Don’t eat off my plate with your fork if you’re eating gluten containing pasta. Can we share? Sure! Get a second set of silverware just for that when you’re out to eat! Don’t mess up my refrigerator. Seriously.  My fiancé would occasionally leave uncovered fried chicken on the top shelf and crumbs would tumble down onto other things. So ours is labeled carefully and he has specific places he can place food in there. Also, everything is labeled.  We buy condiments in 2’s. One is his, one is gluten free.  For example, we have two identical butter containers, one is his and one is mine. Mine is labeled and on a separate shelf. Anyone that is gluten free can use mine, otherwise, they have to use his.  I don’t want to worry about crumbs!

If you’re still worried or have questions- just ask! Trust me, I would rather have someone ask too many questions about what I can/cannot have than just assume something and put me at risk.  If you’re trying to learn about celiac disease because someone you love has it, there are plenty of resources out there! If you’re having trouble finding answers- shoot me a message and, hopefully, I can point you in the right direction!

Hope this helps get you started!

xoxo