Rachel

Describe your life prior to diagnosis.

When I was 15, I started getting chronic migraines and neck pain after a concussion & whiplash injury from basketball. I was in constant pain for most of high school and missed many classes. We tried so many different doctors — chiropractic, physical therapy, acupuncture, neurologist, family practice, etc. I finally ended up at Minneapolis Children’s pain clinic, where they helped me recover from my chronic pain. Prior to that, I was diagnosed by my family practice doctor with Anaplasmosis (a tick-borne illness) which likely also exacerbated the pain.

Right before my 17th birthday, I thought I had a case of the stomach flu. I had recovered, and we had my mom’s family over for a bridal shower. Within an hour of eating cake I was in the bathroom, feeling horribly sick. My dad had been diagnosed with celiac disease when I was young, so I knew then and there I had it.

How did you find out that you had celiac disease? Did you suspect it beforehand?

Even with my father’s diagnosis, getting the doctor to believe me was a struggle. They said many people had had the stomach flu recently, recovered, and got sick again. We had to push for them to do the blood test, which they said they would do, but didn’t think celiac was the case.

Immediately the blood test came back as a slight positive for celiac disease, and they recommended I see a gastroenterologist. I saw a pediatric gastroenterologist after I turned 17, and was sent to Minneapolis Children’s for an upper endoscopy and biopsy. I had been eating gluten prior to the endoscopy to ensure accurate results. Before even getting the biopsy results back, the doctor mentioned how scarred my intestines were and recommended I begin a strict gluten-free diet. 

How long did it take for you to get diagnosed since your first symptoms and what (if any) challenges did you face along the way?

If we count the chronic pain I was unable to recover from as the beginning onset of symptoms, it took over two years. We tried so many different doctors and specialists, even at one point getting a painful spinal tap.

If we look at when I started having digestive issues, which is my main symptom when I’m glutened now, it took around 6 months for the official diagnosis. Even with a family member with celiac, we weren’t believed.

Describe your experience living with celiac disease.

I feel isolated at times. Some people do not understand celiac is more than just “gluten-free food” on a menu— we cannot handle any cross-contamination. I’ve had friends say I’m too much and drop me because they don’t want to deal with it. I have servers who don’t believe me or take it seriously and I never feel comfortable eating at other people’s houses unless they’re family who I know understand the seriousness of celiac disease and take precautions.

Many times when there’s catered food, I end up bringing my own food, or get stuck eating veggies for dinner. It becomes so isolating when so many celebrations involve food.

I have some lovely friends who will go out of their way to ensure I can eat. When I traveled to New York in 2023, they would walk the extra 15 minutes out of our way with me so I could eat safely. They never once complained and I thank them for that.

What would a cure mean for you?

It would mean going out and not worrying every second about what is gluten-free. Not worrying if the cooks or servers even know what gluten or cross-contamination is. I could go to restaurants with friends or celebrate milestones at work without feeling like a burden.