Last updated on December 27th, 2021 at 10:44 pm

May is Celiac Awareness Month. A few years back, I wouldn’t have even noticed. But both of my future daughter-in-laws, Riley and Kelsey, were diagnosed with celiac disease and it’s amazing what I’ve learned over the last few years. I’ve watched both of them handle their diagnosis with grace, without complaining. But there have been adjustments, not just for them, but for our entire family. From not knowing that cream of chicken soup has gluten (oops), to learning how to tweak recipes to make them gluten-free, we’re sharing how we’re working through through celiac disease. (Don’t miss the recipe at the end!)

A little interjection here – I have one more daughter in law, Coree, who is just as amazing. However, she is not gluten free so I did not ask her to contribute to this story. She is a Nurse Practitioner who lives in Denver with my stepson Matt and grandson, Colin.

About Riley and Kelsey

Riley is an OB/GYN practicing in metro Detroit. In her free time, she enjoys traveling, cooking, riding her Peloton, and reading.

Kelsey is a PhD candidate at the University of Michigan studying Pharmacology. With her work, she aids to the design and development of safer opioid therapeutics. The overall goal of her research is to provide an alternative treatment for pain management, in an effort to combat the current opioid epidemic. When she is not doing research, Kelsey serves as an advocate for mental health and community education through leadership in various student organizations. 

About Celiac Disease

To get things started, I asked Riley to put her doctor hat on and explain what celiac disease is. She did want me to mention that she is is an OB/GYN and not a gastrointestinal or celiac specialist. Here’s how she explains it:

Celiac disease is an immune-mediated inflammatory disorder of the small bowel that occurs in susceptible individuals after exposure to gluten. Gluten is a protein found in wheat, rye, and barley. When the lining of the small bowel is damaged, you are unable to absorb nutrients. Classic symptoms of this include diarrhea, gas/bloating, weight loss, and signs of vitamin and mineral deficiencies due to lack of absorption. Symptoms can also occur outside of the gastrointestinal system. This includes rash, weakening of the bones, and neuropathy (numbness/tingling in the extremities). Untreated celiac disease can have effects on the menstrual cycle and fertility. Those with celiac disease have an increased risk of lymphoma and GI cancer. Globally it affects 1% of people, but many people go undiagnosed. There is no cure, but it can be managed by eating a strict gluten free diet. 

I also asked Riley and Kelsey to share with us their experience, in the hopes that it can bring awareness to celiac disease and also help anyone else who is just newly diagnosed. Here’s what they had to say:

What symptoms did you experience that made you decide to be tested for celiac disease?  How long did you have them?

Riley: My symptoms started gradually during my second year of residency training. I had a constant stomach ache, headaches, and felt exhausted. I assumed all my symptoms were due to the stress of medical education. Because doctors are the worst patients, it was probably about 6 months of symptoms before my partner Scott pointed out how miserable I seemed and that I should see my primary care physician for help. He reasonably argued that it wasn’t normal to know exactly where the closest bathroom was at all times.  

Kelsey: I consistently struggled with bloating and stomach issues. I was anxious going for long car rides, eating out at restaurants, and couldn’t figure out why I always felt fatigued and nauseous. I had to know where every restroom was wherever I went. These symptoms continued for so long that I thought it was normal and that everyone had the same issues. Only after talking about it and getting a food sensitivity test was I aware that feeling like garbage after eating every meal was an issue (lol). 

How did you feel emotionally when you were diagnosed? 

Riley: I went through many stages with my diagnosis. First, I was surprised and had some denial. I was not quite ready to jump into the diet as I learned my diagnosis on a Wednesday and had plans that Saturday.  It wasn’t until the Sunday after indulging on everything that I thought I would miss and feeling truly miserable that I gave in and started researching what I needed to change. I felt a lot of initial frustration with this change. Scott can tell you that he found me the next day cleaning out our fridge and pantry yelling about how gluten was in everything. Once I learned to embrace the diet, I started feeling drastically better. Today I feel relieved that I found an answer to my symptoms and that there is a reliable treatment. 

Kelsey: Personally, I was relieved to have finally figured out the source of my struggles. I was more focused on all of the things I could do now without being stressed over my stomach rather than what I couldn’t eat.

How have you adapted in the time since being diagnosed, both emotionally and in your food preparation/choices?

Riley: I’m more thoughtful about my grocery shopping and food choices. The joke is that every day is a picnic for a celiac because you have to take food everywhere. As someone who was an adventurous “foodie” prior to my diagnosis, I’ve had to adjust to suddenly becoming the pickiest eater at the table. I have to remind myself that it’s necessary for my health.

Kelsey: It wasn’t really a difficult transition for me. I made a few mistakes here and there with what I ate in the beginning. Gluten is used as a preservative/thickener in SO much — soy sauce for example. Emotionally, I was just so thankful to be free of the anxiety surrounding my stomach when I am out in public places.  

How difficult is it to find gluten-free alternatives in the supermarket or quality gluten-free foods in restaurants?

Riley: Fortunately, gluten free options are everywhere these days. After some trial and error, we have found great grocery store options for bread, pasta, and baked goods. Restaurants are a little trickier. Not every server or restaurant understands the risks of cross-contamination in a kitchen or prep area. For example, someone with celiac shouldn’t eat food cooked in a fryer that also cooked something with gluten. We have some local restaurants that we love that do a great job at preventing this, and when traveling I trust the Find Me Gluten Free App. 

Kelsey: Like anything, it depends on where you go. I have shopped GF at Kroger, Target, Trader Joes, Whole Foods, Aldi, and Meijer, and can easily find all of my normal groceries. Although I can find all of my normal foods, I do really miss baking with normal flour. There are definitely really great alternatives and work-arounds (xanthan gum for the win), but sometimes it really is more effort than it is worth.

Can you share a favorite gluten-free recipe or any pre-packaged gluten-free foods that you love?

Riley: For pre-packed foods I recommend Banza pasta, Bob’s Red Mill oatmeal and Canyon Bakehouse Everything Bagels. It’s hard to narrow down recipes as I enjoy cooking, but I have found many good recipes from Danielle Walker’s cook book Eat What You Love as well as Teri Turner’s No Crumbs Left.  (Please note: as an Amazon associate, I earn from qualifying purchases)

Kelsey: I have two loves in life- Mexican and Indian food. Luckily, both of these are reallllllly easy to make gluten free because rice and corn tortillas are naturally GF. I can eat curry or tacos all day any day, and the spicier the better! Some of my favorite Indian dishes to make are paneer makhni, chana pindi, lamb vindaloo, and chicken hyderabadi. Also, gluten free bakeries are popping up all over that sell fresh and packaged sweets. Some other favorites I’ve found are Udi’s Three Cheese Ravioli, Birch Benders Gluten Free Pancake & Waffle Mix, and Amy’s Gluten Free Bean and Cheese Frozen Burrito.

What advice would you give others just starting on their gluten-free/celiac journey?

Riley: A general piece of advice I would like to give everyone, but especially women, is to not ignore any symptoms. You are an expert in your own body. I regret not seeking out care earlier for myself and I see it frequently in my practice for a variety of concerns. In regards to someone starting a gluten-free journey, my advice is to set a start date and don’t be discouraged. It took a couple weeks before I noticed any changes. If you live with someone who still eats gluten, consider getting some separate “safe” kitchen items. Because Scott does eat gluten, we have separate cutting boards, strainers, pots/pans, and toasters. 

Kelsey: Figure out alternatives for your favorite foods that can satisfy your cravings. Whether that be making your own version, or finding something that has a similar flavor, texture, etc. This will help keep you from getting down about not eating the entire basket of dinner rolls when you’re out to eat. Maybe more on a practical note, really get into the practice of reading labels and looking up information. If it’s unclear if something contains gluten or not, it’s better not to risk it and go for something you’re sure of. 

The Mother-In-Law Perspective: How Can I Help?

 When I first learned that I needed to be more familiar with celiac disease and gluten-free meals, I must admit I was a little nervous. I didn’t mind having to change things up. What made me nervous was making a mistake that would make Riley and Kelsey ill. As I eluded to above, one of the first brunches I hosted, I made my usual potato casserole. All the ingredients seemed gluten-free to me – potatoes, cheese, sour cream and cream of chicken soup. But, as Kelsey mentioned, gluten is used as a thickener and that includes cream of chicken soup. Luckily, they knew to ask. While they may have been a little hungry, at least they didn’t get sick!

So, I’ve learned to read labels and do Google searches when I’m not sure about something. Of course, there’s always the quick text that says “Can you eat this?” Some things I’ve learned are fascinating to me. Like the fact that everyday Reese’s peanut butter cups are gluten-free, but the specialty Reese’s, like the Easter eggs and Christmas trees are not. But I am up for the challenge to figure it all out!

One of our new favorite family recipes is the trifle below. I got the recipe from my friend, Traci, whose daughter is gluten-free. This is one of those recipes that the only thing you have to swap out is regular brownies for gluten-free brownies, it’s that easy!

Have you had experiences helping a family member with celiac disease? Let us know in the comments below. If you want more information on celiac disease, you can learn more at beyondceliac.com.

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