I’ve mentioned it before, but it bears repeating, since now I’ve had emphatic confirmation from my gastroenterologist concerning my diagnosis: I have celiac disease. This is a brand spankin’ new way of life for me; I’m turning 30 in May, and in about a month or two, it will have been a year since my doctors discovered the litany of gastrointestinal issues I was harboring, including celiac disease. Luckily, I and the rest of my immediate family had a prep course in gluten-free practices while living with my gluten-intolerant sister-in-law, but now that it’s all official and everything, I wanted to put together a small reference guide for how to deal with this transition. There are a million of these kinds of blog posts out there on The Googles, and I’m not a definitive resource by any means, but while this personal blog is not about to become my gluten-free diet journal, I do want to compile my own resources and research in case it helps someone else out. Keeping in mind that we are learning new things all the time about pretty much everything, here’s the obligatory warning that this is current research as of February 2022.

First things first: celiac disease is an autoimmune disease, not an allergy (allergies don’t typically result in tissue damage like autoimmune diseases do; if an allergy is a body’s overreaction to a stimulus in an attempt to expel it, an autoimmune disease is a body launching a nuke on itself to destroy the stimulus); presence of gluten in the body of a person with celiac disease causes the body to begin attacking the lower intestine and results in poorer digestive function. If it goes untreated, it can result in a host of other autoimmune diseases and complications, not least of which is greater risk for GI cancer (for me personally, it’s going to be an eternal chicken and egg question: did my gallbladder issue trigger my celiac disease, or did my celiac disease trigger my gallbladder issue? We may never know, but the two are likely interrelated). Celiac disease is genetic, and people with a direct relative (parent, child, sibling) with it have a greater risk of developing it (some numbers say 1 in 10 chance; small, but when the numbers of people who have celiac disease in the US are roughly 1 in 100, you can see the concern). Since a lot of gut diseases have overlapping symptoms and can present differently in different people, it can be hard to detect, but in general, celiac disease can be found with a specific type of bloodwork panel checking for a specific antibody’s level in the blood, and a biopsy of the stomach and lower intestine to check for damage. Some links for reading: What Is Celiac Disease from celiac.org, Celiac disease from medlineplus.gov.

Second: gluten is a protein, and proteins are sticky buggers. It can’t really be cooked or heated off; soap and hot water is best for removing gluten from most surfaces. Some surfaces, however, harbor gluten because of their makeup or condition, such as the porous surfaces of wood and cast iron, or scratches and grooves in cutting boards and muffin tins, and in those cases it’s best to avoid preparing gluten-free food on them to minimize cross-contact. Lots of appliances have cross-contact risk, such as toasters and air fryers. Even something like handling a normal sandwich and then reaching into a bag of chips can cause gluten cross-contact, so washing hands thoroughly before touching gluten-free food is important. Even hand towels and sponges or scrubbers can harbor gluten in the fibers. Often for people with celiac disease, they have to entirely restock their kitchens, and keeping dishes and groceries separate is important for keeping someone with celiac disease healthy. But in general, so long as dishes are washed thoroughly and counters are wiped often, cross-contact in a home kitchen can be easily avoided. Some links for reading: Cross-Contact from beyondceliac.org, Appliances: Risks of Cross-Contact from gluten.org, 7 Tips for Avoiding Gluten Cross-Contact at Home from gluten.org.

Third: gluten is pervasive. Wheat is a staple crop for a reason, but gluten also appears in barley, rye, and a whole list of other things I’d never heard of before. Which means that gluten is used in a lot of products most people without celiac disease or gluten intolerance would never have thought to check before. Bread and pasta are the big obvious offenders, but gluten can also show up in things like ice cream, soup, chips, dips, sauces, and candy (seasonal Reese’s Cups shapes, by far the most bizarre example of this in my opinion, is subject to gluten cross-contact due to the machinery that the candies are made on, as opposed to normal Reese’s Cups and Reese’s Pieces, which are safe). It’s become more and more common for companies to label their products as gluten-free if they are safe, or to include wheat as an allergen warning on the label, but there are still plenty of things that I have to check on Google to make sure they’re safe for me to eat (there is a Gluten-Free Scanner app that, if you scan the bar code of a product, will often be able to tell you if the product is gluten-free, may contain gluten, or contains gluten based on the database the app has available, but that database is not comprehensive). Sometimes a product that might not contain gluten in and of itself could still be subject to cross-contact because of the machinery the products are processed and packaged on and therefore are unable to be labeled as gluten-free or celiac-safe (such as most seeds and nuts, or the aforementioned seasonal Reese’s Cups, or Doritos). Sensitivity to gluten varies (apparently some people can get gluten attacks from airborne flour particles), but if you’ve ever spent the better part of a year on the toilet, sometimes you just don’t want to take the risk. Link for reading: Sources of Gluten from celiac.org.

There are, of course, a million other little things to adjusting to living with a major dietary restriction that I don’t have the time or inclination to cover in detail—things like the price of gluten-free alternatives (expensive), the ins and outs of a gluten attack (terrible), the emotional toll of this kind of major life change (roller coaster), the necessity to communicate my needs to complete strangers at restaurants as well as informing family and friends (horrific). There will most definitely be posts about gluten-free cooking and baking in the future, because it’s been a challenge in both the positive and negative senses to adjust favored family recipes to accommodate my new reality. And to discover new recipes! (We don’t talk about my new arepas obsession.) But for family and friends and random strangers stumbling here, voila. The results of a year of stress-googling and talking to doctors and various loved ones. If you’ll excuse me, a new Pokémon game was announced for later this year and I have to go scream about it.