Valerie is a community member from Pearland, Texas. She is a Celiac Disease fighter and Nima advocate, even helping us at our expos! Recently, she sat down and shared her entire Celiac Disease story with us. You can follow more of her gluten-free experiences on Instagram, @wheatlessandhappy.
What’s your food identity, and how do you maintain it?
I was diagnosed with Celiac Disease in December of 2014. I am extremely careful with the food and drink I consume. I read product labels very carefully and I read articles about what’s going on in the gluten-free, celiac community from research to new product launches and hidden sources of gluten. Education and knowledge are two things that help keep me safe. I use my Nima to test foods I’m unsure of and I try to minimize how often I eat out. We cook a lot at home and I love trying new recipes.
Tell us a little about your gluten-free journey. What was it like when you started eating gluten-free? What challenges did you face?
After years of unexplained and undiagnosed illness combined with extreme weight loss after the birth of my second child, I was diagnosed with Celiac Disease. Going gluten-free was a complete lifestyle change for me and my family. I had a three-year-old and an 8-month-old baby on top of a full-time job that required some travel. I didn’t know what gluten was to begin with, or how to even approach eating gluten free, and I wasn’t given a lot of resources from my doctor. She gave me a WebMD print out on celiac disease and said you need to eat strictly gluten-free from here on out. What does that even mean??
I remember the first time I went to the grocery store with my husband and we found the gluten-free aisle. It was overwhelming and completely heartbreaking. What was I going to eat? This small piece of the aisle was all I had to choose from? I sat in the aisle and just cried. It was at that moment that I realized I had to take control and do my own research – I couldn’t rely on someone to educate me. I was responsible for educating myself to effectively make this lifestyle change and begin healing my body. And with that I dove into the gluten-free lifestyle headfirst and never looked back. I researched foods and read articles that helped me learn to read nutrition labels and product packaging. I purged the food and spices in my house and I attended gluten-free expos. I ultimately changed the way I cooked and thought about food. I had to.
From that first moment of crying in the middle of a grocery store aisle, my journey hasn’t been without its bumps and setbacks. I was glutened a few times and reacted so badly that I ended up in urgent care from severe dehydration. It was very hard not to feel like I was missing out on so much of life since our culture revolves around food; and I love food. I felt isolated and like an inconvenience. My whole family had to change because of me. Holidays and celebrations would all be different. Food brought about terrible anxiety and restaurants gave me panic attacks because I was so afraid of getting sick. My reactions are violent, uncomfortable and leave me sick for days. Social situations were extremely hard, and I hated how excluded I felt. Those things and those feelings didn’t change quickly. To be honest, it took years to gain confidence and a better understanding; and it took me discovering what exactly a Nima Sensor was.
Over time, though, I have learned how to navigate the gluten-free life. I know how to quickly asses a product label; I know keywords to look for; I know the right questions to ask at restaurants; and I have no shame in bringing my own food to parties and social functions to ensure I not only have a safe meal but get to participate. I have become an advocate for the celiac community and try to spread awareness and educate others about how to be gluten-free. While I still have some down days, I try to look at this disease with a positive frame of mind. Being a celiac certainly isn’t easy by any means but I found that education, knowledge and advocacy is the best way for me to live with this disease. I work to find and bring happiness to my life through healthy living and celebrating the little moments; and, of course, enjoying all the new, amazing gluten-free foods that hit the market every day.
One of my more recent challenges was when my four-year-old son was diagnosed with celiac disease last year. I know that because of the research I’ve done and my knowledge about celiac disease that I was able to get him diagnosed quickly and spared him years of damage. It still took visits to more than five doctors for me to finally get a diagnosis for him, but it was because I asked questions, recognized symptoms and pushed for the testing to be done. Months later at one of his follow up appointments, his antibodies were already lower and his doctor said it’s because we caught it early. Now, my son calls us the gluten free twins and he’s extremely happy and well-versed, even at five, in the gluten-free lifestyle. Again, education, knowledge and advocacy are some of my best tools, and I’m able to pass those on to my son.
What was your food life like before you had your Nima?
After I was diagnosed, I struggled with food and I got sick often. I had a lot of trust issues and anxiety centered around food. Gluten is hidden in so many things and cross-contamination can literally be anywhere. I found it be difficult adhering to a strict gluten-free diet and still engaging in social situations and traveling. No matter how careful I was and no matter how much I tried to educate others, I was still getting sick. I had to greatly reduce going out to eat and trusting things offered to me that promised to be gluten-free.
What’s your food life like now that you have Nima?
I lived gluten-free for about a year before I got my Nima. My grandmother heard about the Nima and the new technology that would soon hit the market not long after my diagnosis. Considering what I had gone through, I was ecstatic at the opportunity to own one and signed up on the pre-order list.
Nima has changed my life. I know that sounds cliché, but it gave me a sense of security and greatly reduced the amount of anxiety I had towards food. That has been the biggest change for me – I can enjoy food again. I no longer had to rely on someone’s word that the food was gluten-free. I could test it on the spot and avoid the agonizing symptoms that come along with either being cross-contaminated or glutened. Nima eliminated the guessing game and gluten roulette, if you will.
My Nima has truly given me freedom in food and I am so incredibly thankful that this technology exists. I always keep it with me so if I’m ever unsure I can test it to know if the food is safe to eat. It’s also become quite the conversation starter! Several restaurants have been interested in the technology and how their food measures up. People love to see it in action and erupt in cheers when that quaint little smile shows up on the screen. It also serves as an education tool which is incredibly helpful as far as knowledge and advocacy are concerned.
With my Nima, I don’t have to worry and I’m able to live life without the fear of food making me sick.
What do you test with Nima? Has there been anything that surprised you wasn’t safe (according to Nima)?
I test anything I can! When I try a new restaurant, I will test everything I order. Occasionally, I will test packaged items that I’m unsure about or that don’t have clear labeling. My Nima gets the most use at restaurants, though, since that’s where I’m at the most risk for cross-contamination and being glutened.
There have been times when I test food at a restaurant I’ve safely eaten before but want to retest and it comes back with gluten found. These instances are just a result of large kitchens and varying kitchen staff. I think it’s good to periodically retest items to keep me safe and help restaurants re-evaluate their kitchen protocols, should they be willing. I don’t want to become too comfortable or complacent with eating out and trusting that my food is always going to be truly gluten-free just because I’ve safely eaten it before.
I think one of the biggest surprises I find with a gluten found result has been on fish. I have ordered fish numerous times and it has tested positive for gluten. I haven’t quite figured out how it’s happening but I’m now extremely wary of ordering fish out at restaurants now. Recently, I ordered fish tacos and my first plate gave me a gluten found result. They recooked my food and the second test was gluten-free and I had zero reaction. It just goes to show how helpful Nima really is when dining out and how important careful preparation is.
What do your friends, family, and/or doctors think about Nima?
My friends and family have been extremely supportive and interested in Nima from the beginning. Everyone rallies around me and waits for the results, and, if positive, erupts in cheers and high fives for my gluten-free meal. It’s nice how everyone supports it and celebrates with me when I get that beloved smiley face. When it comes back with a gluten found result, everyone puts their heads together and tries to figure out what happened. I’ve even had people talk to waitstaff before I have a chance about the gluten found result because they are so confident in Nima. I also have a friend that can tell you all about the Nima, the technology and what it does even though she’s never used one. People will also ask me to test foods just so they can see it work! My Nima has quite the fan club.
When using Nima at restaurants, what has been your experience? Do you have a favorite Nima related story?
Typically, it’s a very positive experience at restaurants. It’s hit or miss on whether it’s really gluten-free or not but I’m just thankful I have my Nima to test the food. Of course, there are restaurants that aren’t very kind or supportive of me using my Nima to test their food; but I find more often than not that they are interested in the technology and want to make sure I have a nice meal to eat.
I think one of my favorite experiences was at a local chain steakhouse. I ordered a steak and steamed vegetables for dinner. My steak came back with a gluten found reading so they removed the seasoning, recooked and brought it to me. It got another gluten-found result. We tested the seasoning to rule it out and it was actually gluten-free so the cross-contamination was happening on the grill. The kitchen manager stopped what she was doing, pulled up a chair at the table and walked through everything with me. She waited on each Nima result and then worked to problem solve until we got a safe meal for me to eat. I now know to have my food grilled in foil at that restaurant to avoid the cross-contamination on the grill. Certainly, not everyone has the interest or time to do that, and nor do I expect it, but it was such a nice experience and I’m grateful for her dedication to customers and her patience.
Bonus fun questions:
If you can only eat one food for the rest of your life, what would it be?
Sandwiches. I really, really love a good sandwich.
If you can only use one spice or condiment what would it be?
If you can only choose one restaurant for the rest of your life where would it be?
That’s a really hard one. I think it would have to be 5 Points Local in San Antonio. They are a completely gluten-free restaurant and have the best food and the most delicious pastries.