Kari is a community member from the Minnetonka, Minnesota. After a long and difficult journey, she has found her way back to enjoying different foods and eating out again with Nima. Follow her journey @sidetrack.celiac and her gluten-sniffing dog, @glutensniffingturtle. Below is her story about managing Celiac Disease with Nima.
What’s your food identity, and how do you maintain it?
I was diagnosed with Celiac Disease 5 years ago when I was 45. I was diagnosed with SIBO in July 2018 so I avoid sugar and dairy, as well as gluten. I work with a functional nutritionist, and have regular GI Maps done to determine what bad bacteria I have in my gut. She helps me with the SCD diet, and recommends supplements to take. My bloating and heartburn have gotten significantly better since I started working with her.
Tell us a little about your gluten-free journey. What was it like when you started eating gluten-free? What challenges did you face?
I was living and working in Denver, and I woke up one day and couldn’t see out of my left eye. I needed to have eye surgery so I had routine blood work, which came back showing I had iron deficiency anemia. I subsequently had an endoscopy and colonoscopy. A nurse called me the following week and told me that I have Celiac Disease. My GI doctor never called me- he had his nurse do it, which was extremely disappointing. She said she would mail me a packet of information, but didn’t. I did research and read books on Celiac Disease. I found a dietician who had a 4-hour class on eating gluten free, so I went to that to learn more. I had to go to the oncology center to have iron infusions every week for a year to get my ferritin levels up. At the time, I was in a relationship with someone who refused to have a gluten-free house, so I did the best I could with ‘separate’ everything. My gut started to heal, but then I was diagnosed with adrenal gland failure and degenerative disc disease. My joints were painful and swollen all the time. My functional medicine doctor said that if I didn’t decrease the stress in my life and start doing some self-care, I wouldn’t get better and I would be endangering my life. So, I ended my relationship, moved back home to Minnesota and took a good long look at how to begin healing. Then I developed a 6cm nodule on my thyroid and had a partial thyroidectomy. Through it all, I focused on eating gluten free and preparing food that can heal my body. I avoid processed foods and eat primarily whole foods. It has been difficult to come to terms with the fact that I can’t eat like a normal person. Some people in my life haven’t been that understanding, but most have been amazing. My sister has been a tremendous help- I could not have done any of this without her. My friends will only go to restaurants that I pick so they know my chances of getting sick are diminished. They accept the fact that I may be eating a meat stick for dinner and don’t make me feel bad for it.
What was your food life like before you had your Nima?
I was a total foodie. I went out to restaurants at least 3 times a week. I never ate junk food, but if I was traveling or at a concert, I would get a burger or nachos and a beer. I LOVED Blue Moon beer.
What’s your food life like now that you have Nima?
The Nima has been a life changer for me. I test everything when I go out to eat, and I test a lot of things at home, too. I have a friend who has Celiac Disease and once we went out and used 12 capsules total! I feel completely confident eating food when Nima gives a smiley face. I have said many times “I have never gotten sick on a smile!”. My Nima gives me piece of mind and lets me be more in control of this disease.
What do you test with Nima? Has there been anything that surprised you wasn’t safe (according to Nima)?
I test when I go to non-dedicated restaurants. I have learned to bring 4 capsules, just in case I decide to reorder. Most of the time, I don’t re-order, though, because I get too anxious. I love seafood, and I have learned the hard way to tell the kitchen to leave off the sauce. Sauces are trouble. So, I will test the meat, veggie and any spices. At home, I test anything that isn’t certified gluten free.
What do your friends, family, and/or doctors think about Nima?
No one has ever told me it’s stupid or I shouldn’t use it (I think they know better!). Whenever I use it, whoever is with me always wants to watch it for me. And then when there’s a smile there is a lot of clapping. When it says ‘Gluten Found’, everyone is pretty disappointed for me. People who haven’t seen it, like servers, always ask me how much the capsules are, but the expense doesn’t bother me. Once I ate a bite of gluten cupcake by accident and I went straight to the ER because I knew I would be in for a very sick night if I didn’t. If I would have tested the cupcake, it would have saved me a $2000 ER visit, so I easily justify the expense of using my Nima.
When using Nima at restaurants, what has been your experience? Do you have a favorite Nima related story?
Most of my experiences have been positive. When I arrive, I always ask for the manager. I explain that I have Celiac Disease and a Nima Gluten Sensor. I show them (and the server) my Nima and the capsule. I tell them that if it comes back with ‘gluten found’, I will send it back. I had two bad experiences at the same restaurant. My sister planned my 50th birthday party at a restaurant that is known for being very Celiac-friendly and has a separate GF menu and seems to take things seriously. My friend who has Celiac Disease was at my party, and we tested everything we ordered. Most of it came back ‘gluten found’, and when we talked to the manager he said “Maybe you shouldn’t eat here”. We shared a twice-baked potato that night because it’s the only thing that came back with a ‘smiley face’. The two of us tried again after speaking with one of the owners of the restaurant, who gave us gift cards to come back. That is when we used 12 capsules, and 11 things came back ‘gluten found’. Everything we tested was off the GF menu- and the manager swore there was no way anything could be cross-contaminated. I definitely trust my Nima more than restaurant managers and kitchen staff. Even if I have to use 12 capsules.
If you can only eat one food for the rest of your life, what would it be?
If you can only use one spice or condiment what would it be?
I can’t live without sour cream and horseradish!
If you can only choose one restaurant for the rest of your life where would it be?
That’s a tough one. I’d pick Colita in Minneapolis and Root Down in Denver.