Describe your life prior to diagnosis:
It was a bit of a double-edged sword; my symptoms are largely silent or so intermittent that I never connected them. Last year at the age of 34 I was diagnosed. Knowing what I know now, I can say with confidence that my celiac disease has been active since a young age, but celiac disease can have many faces, and it’s not obvious without knowledge about the disease and its many manifestations.
How did you come to know (or suspect) that you have celiac disease?
One of my only recurring symptoms was dermatitis herpetiformis (DH). The problem was it was usually isolated with no other issues. My whole life I always thought it was just from injuries or skinning my knees so frequently in sports.
But in recent years, as my body started to age a bit, I started noticing my rash was always accompanied by inflammation in my joints, bloating in the gut, and general fatigue and malaise. I started researching those symptoms together and learned about DH and its association with gluten.
If you were diagnosed, who made the diagnosis?
At my annual physical I mentioned my suspicions about DH and a possible gluten sensitivity. I wanted to see if I had food sensitivities. I showed my doctor some pictures of my most recent flare-up and he agreed it was worth looking at. He ordered a blood test that came back with off-the-chart numbers. That led to referrals to gastroenterology (GI) and dermatology. The GI ordered more tests, which were high enough to confirm celiac disease, but she also wanted to see the internal damage, so we scheduled an upper endoscopy and biopsy. Those revealed a Marsh score of 3c (read more about the Marsh scale, which is used to interpret biopsy results), or near total villous atrophy from decades of damage.
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?
From the time I pieced it all together, it only took about four months to get through all my referrals and into surgery for confirmation. But looking back to when symptoms started, it took at least 20–25 years. My symptoms were never severe or consistent enough to think anything besides, “oh it’s just an occasional stomach bug,” or “growing kids are tired and sleep a lot,” “lots of boys have ADHD,” “of course his knees hurt, he pushes himself hard in sports,” “kids get rashes, he plays around poison ivy all the time.”
Do you believe anything could have sped up your diagnosis? If so, please explain:
Maybe more knowledge around the frequency of the disease and what it can look like. But, ultimately, it probably wouldn’t have had an effect. My symptoms were there the whole time, it’s just that they were random and pretty mild.
Describe your experience with living with celiac disease:
It’s been a long year of learning and second-guessing myself. I went from being a foodie and beer-snob to having anxiety about everything. Potlucks, holiday meals, eating out…they all stress me out. And the troubling part is that my celiac disease is largely silent. I don’t get a sudden reaction from gluten intake. It builds until I have a noticeable flare-up. So I never know when or where I’ve been glutened.
My only confirmation that things are improving are my annual blood tests. My most recent results were almost undetectable, but still technically positive.
I feel guilt for having it “pretty easy” compared to others who have violent symptoms and have been hospitalized, but I also hate the stress of not knowing if I’m doing well on the GF diet. My symptoms aren’t noticeable, but the damage is the same.
Is there anything else you’d like to add to your story?
Overall I’ve had it very easy. My symptoms are mild, and my healthcare professionals listened to me and took it seriously. I know that’s not everyone’s story and I’m grateful to have been diagnosed prior to any serious or long-term complications.
