I Was Just Diagnosed With Celiac Disease, Now What?

I see this question a lot on various messaging boards and gluten free Facebook groups. I vividly remember the lost feeling when I was diagnosed and went gluten free. No one sat me down to explain what it meant. For a year I didn’t eat certain foods because I mistakenly thought they were gluten. Just because it has “gluten” in the name doesn’t mean it contains gluten. For example, MSG and glutinous rice. Here is a guide for you on what to know, at least to get you started!

What is gluten? Simply put, gluten is a protein found in wheat, rye, triticale, oats, malt barley. It acts as a binding agent and allows those glutenous foods to keep their shape. You can read more about it here.

What is Celiac Disease? This is Important to know because being gluten free due to celiac disease is different than being gluten free due to an intolerance or allergy. Celiac disease is a autoimmune disease where our small intestines can’t break down the gluten, which can lead to different long term health issues. The Celiac Disease Foundation is an excellent resource for more information.

How do I shop? You can find gluten in a variety of foods. The best thing you can do is read up on it to make sure you understand how to find gluten in your foods. Here is an article that helps. My biggest tip? Read every single label you buy. NEVER assume something is gluten free, things will surprise you. Things still surprise me to this day. After some time you will get in the practice of this.

Do I need to buy food labeled gluten free? This is a great question! It is honestly personal preference. Some celiacs like myself will buy foods that aren’t labeled gluten free but contain no gluten ingredients. Others avoid things that aren’t labeled. I recommend to the newly diagnosed to try to stick to labeled food only because It’s so easy to misread a label early on until you are more comfortable with reading labels. However, it’s a personal choice! What are the pros and cons?

Pros: I can honestly say my level of enjoyment has greatly increased by eating food not labeled gluten free. Many places don’t want to pay for the gluten free labeling process. Eating these foods adds a greater variety of foods and takes off some of the pressure. Me personally? I’m less anxious.

Cons: While wheat needs to be put on the label according to the FDA laws, other forms of gluten like malt are not required to be labeled. For example, any cornstarch with wheat must have a wheat label on it. You will usually see: “corn starch (wheat)” or something along those lines. For “hidden gluten” they won’t let you know if the ingredient is derived from another form of gluten. There is a risk associated with eating non-labeled food. If that risk doesn’t sit right with you, maybe it’s not for you.

How do I handle messing up? I think the hardest part for many when a mess-up occurs is the fear of becoming sick again, like you were before getting your diagnosis and health in order. Fact check that fear. Mistakes happen. I sometimes buy non-gluten items on accident and I’ve been glutened at restaurants or people’s houses. You may feel sick but you will feel better. It’s not going to be like before because you are more knowledgable and prepared. That being said, if you make a mistake, own up to it and learn from it for next time. I have accepted that mistakes and accidents will happen, the more I accept that the less emotionally impactful it is when it happens. I also continue to learn and grow on this journey!

How do I eat out? With lots of research and lots of questions. If I’m going somewhere to eat I usually do a google search to see if there are any gluten free reviews or menu items showing up. I take a look at their menu and search the restaurant on Find Me Gluten Free. It’s always best to call ahead of time so you can to ask about gluten free options for celiac disease. One important question to ask is, what is your fryer situation? Celiacs need to avoid cross contamination, this means we can’t use shared cooking surfaces or fryers used with glutenous items. While many servers and restaurants are more knowledgable now, many still don’t know what gluten is so don’t be afraid to advocate for yourself. I’ve even had servers tell me something is not gluten free because of X ingredient that normally is. When I question it they get clarification and what do you know… it is gluten free! Here is my post with dining out tips. As you age in your gluten free experience, you will be able to look at a menu and fairly accurately guess what may or may not be safe to eat. Always follow the guess up with questions.

What groceries should I buy? Before the health nuts jump down my throat, you can eat all the fruits, veggies and meats you want. They are naturally gluten free unless seasoned! But I know many are upset about missing out on their junk foods or indulgent sweets and snacks. There are a lot of options out there. Check out the gluten free frozen section and get a few items to try. I like to keep gluten free french fries and pizza in my freezer as those can be hard to order out. My Instagram page has many gluten free items on my page and story highlights you can check out.

Here are some gluten free staples to have in your kitchen:

Flour: Pick a good gluten free cup for cup flour alternative. I use Cup4Cup which, as the name says, you can basically use cup for cup to replace glutenous flours. They contain Xanthum Gum which is the gluten free binding replacement that gives breads it’s shape. If you use a flour without this you will likely need to add Xanthum Gum into it. The Cup4Cup website has some great recipes to check out. Almond flour is also popularly used and I used it often before finding Cup4Cup.

Pasta: There are plenty of gluten free pastas out there. Stock up on some gluten free Mac-N-Cheese, spaghetti or penne. Banza and Barilla have great options but test them out for yourself. Much of shopping is finding out what you like. I have a whole story highlight dedicated to pasta on my Insatgram.

Crackers: Gluten free crackers are great to have in your pantry, especially if you like to host. There are many great brands out there. Here I blog about 5 of my favorites and here is a video with other gluten free cracker options.

Bread: This may be one of the things you miss the most. Gluten free bread sure has come a long way too. Trader Joe’s has some great gluten free bread options including bagels, hamburger buns, tortillas and english muffins. Other grocery stores should have options as well. Most bread is found in the freezer section though some may have them with other breads. Canyon Bakehouse has great bread and I like mission gluten free tortillas. Schar has a baguette that I love. Aldi’s has great options too!

I keep saying it so I’ll say it again on it’s own. Try different brands see what you like!

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