Living with Celiac Disease: Why My Gluten-Free Lifestyle is Not a Personal Preference

As I have mentioned on the blog before, I have Celiac Disease. I found out that I had Celiac about 13 years ago and since then I have had to make some major lifestyle changes. I get so many questions about what it means to have Celiac, what I can and cannot eat, and how I survive. Today I’m going to set some of that straight and give you some information.

First of all, what is Celiac Disease? Celiac is a genetic, hereditary autoimmune disorder that causes the body to react negatively when gluten has been ingested. Celiac causes inflammation in the small intestine, weakens the lining, and can cause a lot of other medical issues. Celiac can also prohibit nutrient absorption and can cause the body to be malnourished. According to the Celiac Disease Foundation, “two and one-half million Americans are undiagnosed and are at risk for long-term health complications.” Gluten is a protein that can be found in products containing wheat, barley, and rye and should be avoided at all cost if you have Celiac Disease.

What are the symptoms of Celiac Disease? The typical symptoms are bloating, intestinal and digestive issues, joint pain, body aches, nausea, anemia, delayed growth, malnutrition, fatigue, rashes, and weight loss. I had just about all of those symptoms anytime that I ate anything (that apparently had gluten). If you’re going through this, I’ve been there and I know exactly how you feel! For a lot of people there may only be symptoms when gluten is consumed internally but I also had and have bad reactions when gluten is absorbed externally (i.e. in skin care products, shampoo, makeup, etc.). There is a whole other blog post I could write about my journey with cystic acne, let me know if you would want to read that and I will definitely write about it. Even today, if I ingest the smallest amount of gluten, within about 10 minutes, I have full-body aches, joint pain, a pounding headache, lethargy, my stomach becomes hard, I’m nauseas, have stomach cramps, etc., and those symptoms last for about a day. Thankfully this doesn’t happen often because I know how to avoid gluten, but when it happens I’m down for the count and mainly just have to sleep it off.

So how did this all begin with me? A little bit of back story about me is that I used to be very small compared to other girls my age. My mom has told me that, as a baby, I had a hard time with certain foods and had various intolerances. Until about 11 or 12 years old, I was still small, was still having issues, and just didn’t feel well the majority of the time. I couldn’t really pinpoint why I didn’t feel well, but I just didn’t. I had to have an appendectomy (appendix had to come out) around 11 or 12 and I’m not sure if that had anything to do with Celiac, but I kind of believe it did. I have heard that, if you have the gene that predisposes you to have Celiac, your condition may not become active until you have a health crisis. I truly believe that is correct because, as a 12-year-old, I remember thinking “I will never be the same again. I will never have my energy again. I’ll never be able to run again” because I felt so much worse after I recovered from my surgery. I felt so weak, lethargic, had constant stomach issues, and even vomited a couple of times. Because that was a long time ago, there wasn’t an official way to be tested for Celiac Disease and so I was tested for a range of other things, including diabetes, but nothing ever came back with an answer of what was wrong. I have another family member who was diagnosed a few years before me and so we knew enough about Celiac to wonder if that’s what I had. I kept on with regular life for a couple of years after that point.

How was I diagnosed? Because Celiac is genetic, I, unfortunately, finally found out what I had after my mom went through a pretty bad health scare. My family was in Chicago on vacation and my mom collapsed on the platform of the train station. Talk about terrifying. But, come to find out, the hospital she was transferred to happened to be the only hospital in the county that was doing research on Celiac Disease at that time! I know that was a completely God-ordained moment! All of the appropriate tests were run on her and a positive diagnosis came back that she had Celiac Disease and severe anemia, which is another symptom of Celiac. Because I had already been through so many tests, we decided not to have them run on me again but made the immediate lifestyle change. If you suspect that you might have Celiac Disease, the Foundation has some great information about the blood testing and things you should ask your primary care physician—link here. (Is my medical social worker voice coming through yet? Haha!)

I get asked questions all the time about why I eat gluten-free and while I’m fine with educating people about Celiac, there are definitely some stigmas attached when people hear the words “gluten-free.” I’ve heard, “oh, you just want to be healthy,” or “do you just not like bread,” or “oh you’re doing that fad diet,” etc, and those statements kind of annoy me because it’s not a personal preference, it’s a lifestyle change you have to make for your health. I try to be sensitive to others when talking about food allergies, intolerances, Celiac, etc., because I know the feelings you go through when you can’t eat something. And no, if you have Celiac, you can’t eat white bread as a replacement for wheat bread (what do people think white bread is made out of? Sheetrock?).

Sources of Gluten and What Not to Eat

So if you are needing to switch to a gluten-free diet and lifestyle because if Celiac, here are my tips and encouragement for you. It’s so much easier to make the diet switch than it was 13 years ago–almost every grocery store has a gluten-free section with tons of products. Gluten-free products are also so much more affordable than they used to be, and most of them taste good too! Even though the transition period might be a little rough, it won’t always be that way once you get the hang of knowing what to eat and what not to eat. Get familiar with reading labels and look up something if you don’t know what an ingredient is. If you’re eating out, don’t be afraid to ask questions if you have concerns about a certain dish. You know how eating something that’s potentially not gluten-free will effect your body and you have the right to take care of it. There are also SO many restaurants now that have gluten-free menus and educated staff, which are other things that weren’t around 13 years ago. If you’re cooking from home and you get into a rut of what to eat, you can always rely on Pinterest to have a plethora of gluten-free recipes and meal plans. And, also, know that you are not alone!

Because I travel so much, I learned early on to always take plenty of gluten-free snacks, like granola bars, in case there wasn’t anything else I could eat. I really like taking instant soup mixes on flights because you just have to add hot water. I also learned that if you go to ice cream shops that mix flavors and toppings on the counter, like Coldstone, you will probably get sick because of the cross-contamination. They don’t clean the surfaces as well as you need them to if you have Celiac. Something I like to eat a lot is Barilla gluten-free pastas because they have spaghetti, elbow pasta, rotini pasta, fettuccine, and penne pasta. I order a lot of things in bulk off of Amazon, using the “Subscribe and Save” option. I also like to eat things that are naturally gluten-free, like corn tortillas, baked potatoes, and rice. Eating naturally gluten-free foods also help to keep down costs. One of my favorite places to eat that has gluten-free food is Do Rite Donuts in Chicago. –Anna M.

The best advice I’ve been given is that you can still eat the chocolate and drink the coffee! My advice for someone needing to have a gluten-free lifestyle is to not think about all of the things you can’t eat. Think of all of the delicious things that you CAN eat! My favorite thing to eat that is gluten-free is cheese! My favorite places to eat out are Coffee House on Cherry Street in Tulsa and Andolini’s Pizza in Tulsa (they have amazing pizza!). I buy my gluten-free products at Aldi–Aldi all the way! –Alicia R.

The most helpful advice I have received for dealing with Celiac Disease is that if something looks questionable, like it might not be gluten-free, it never hurts to ask. It’s better to be safe than sorry. My advice for those who might be newly gluten-free is that when eating out, be smart but not annoying. Ask lots of questions and be kind about it. Don’t make people hate you cause you’re gluten-free… they might make you pay for it in some way or another. My favorite local places to eat that have gluten-free options are Old School Bagel in Tulsa and PF Changs. My favorite things to eat on the regular that are gluten-free are fruits and veggies. The stores I shop at that have the most gluten-free product options are Aldi, Wal-Mart, and Target (especially if you have the Cartwheel app). –Abigail W.

The most helpful advice I’ve received about Celiac Disease is that you can make anything you want in a gluten-free version. For others who might have to switch to a gluten-free lifestyle, look online for a list of gluten-free foods you can eat right now. That really helped me in the beginning! My favorite thing to make gluten-free is pizza, and it can also be found at a lot of restaurants now. My favorite places to eat out are Pei Wei, PF Changs, Chicago Pizza, Do Rite Donuts in Chicago, Cozy Kitchen in Dallas, and Company Cafe in Dallas. The places I shop the most for gluten-free products are Trader Joes, Sam’s Club, and Aldi (they have a lot of affordable options). –Lori W.

Gluten Free Food You Can Eat Right Now

I was diagnosed with Celiac Disease when I was 10 and I have been eating gluten-free for 17 years in December. It was definitely not the cool thing to do until about 8 years ago. If you are a newly-diagnosed Celiac, my advice would be that it’s ok to grieve the foods you will no longer be able to eat. Ya, it’s just food, but food has a lot of meaning in today’s world. Give yourself time to grieve the foods you loved. On the other hand, it’s just food. You’ll be glad when everyone else in your office is complaining about eating too many of your coworker’s baked goods. Also, just because something is “gluten-free” does not mean it is healthy. Gluten-free packaged foods are traditionally made from white rice flour and tapioca flour, which do not have any more nutritional value than white flour. Gluten-free packaged foods usually have more sugar and fat. Don’t just read the label to see if it’s gluten-free, read the label to see if it’s nutritional as well. My favorite thing to eat that is gluten-free is pizza, cupcakes, and cake. My favorite place to eat that serves gluten-free food is Risotteria Melotti in NYC. I ate there when I was 12 and it was the first dedicated gluten-free restaurant that I went to. I also celebrated my 21st birthday there with my then-boyfriend now-husband. It gave me a lot of hope that one day more restaurants would be completely gluten-free and 15 years later they are still going strong. As far as stores, Sprouts is a good place for affordable gluten-free things. Trader Joe’s doesn’t have a huge selection, but they do have a few things that are gluten-free and very affordable. I have also found great gluten-free items at Wal-Mart. Betty Crocker makes great gluten-free mixes. –Grace D.

The best advice I’ve received about needing a gluten-free lifestyle is to know your body. Since I eliminated gluten from my diet, anytime I consume it, my body lets me know. Symptoms may vary per person. But for me, within an hour, my stomach becomes rock hard. I also get a migraine. The next day, if I over consume, my body feels achy like it has the flu. So learn your body and know your symptoms and side effects. Also, don’t listen to the nay sayers! There will always be skeptics but we have to do what is best for our health. Just don’t throw a pity party anytime someone eats a full gluten brownie in front of you! My advice for someone else is that it helps to know what ingredients are actually gluten, even if they aren’t labeled “gluten.” My favorite place to eat that has gluten-free options is Red Robin, yumm! My favorite gluten-free products are also Glutino pretzels and “Oreos.” The place I shop the most is Wal-Mart–most super centers have a gluten-free section with TONS of options. –Ashley W.

Celiac Disease Foundation 

If you have questions about Celiac Disease, let me know and I would be happy to answer them. I hope this has been an informative post and if you think that you might have Celiac Disease, make an appointment to see your doctor! Living the gluten-free life can be done and is worth it because it helps you live your best life!

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