Describe your life prior to diagnosis.
At the age of 35, I began having stomach issues. It seemed like “nervous stomach,” as I was in the midst of a huge life change: moving from Florida to Boston for grad school, not knowing anyone. For the next 27 years I dealt with a sensitive gut, otherwise I was pretty healthy and active. I asked doctors what could cause this, but I only got the umbrella term of IBS as diagnosis. I had a few standard tests and a sigmoidoscopy, and all were normal. Nobody suspected more. I coped by eating mostly bland, but healthy foods. Some choices were good, some terrible, like bread!
How did you find out that you had celiac disease? Did you suspect it beforehand?
I did think there was something wrong with my GI system, but was fairly resigned to the fact that it was “just me” and my body being finicky, since nothing definitive could be found out up to the point of the celiac blood test. I accepted the IBS theory. I finally had a tTg at age 62, along with an endoscopy. My primary care practitioner (PCP) ordered the test, after all those years! I knew nothing about any of these tests, or about celiac disease. This was 2013.
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?
My PCP ordered a tTg. When she saw my results were “off the charts” she referred me to the gastroenterologist (a new one for me) who did the endoscopy. I was lucky to be in the Beth Israel system in Boston, so once diagnosed I had the good fortune to be in good hands at their Celiac Center.
It was 27 years of symptoms before the correct diagnosis. My main challenge was managing stomach issues by myself, using just a few OTC products, mostly Pepto-Bismol at first, then Metamucil. The Metamucil masked my symptoms so I used it quite successfully for the 10 years prior to my celiac diagnosis. There were a few times it didn’t work though and I had some fairly dramatic episodes with bad cramps, that were quite uncomfortable. This often happened while traveling and not being totally in control of my dietary options, and of course, not knowing I had celiac disease. I also had a couple of extreme bouts with hives and attributed that to my allergies, but it was later thought to be a symptom of the untreated celiac disease.
Do you believe anything could have sped up your diagnosis?
More empathy/concern and belief from my docs as to how badly I was feeling and more testing could have sped up the process. In hindsight I wish I had been more of an advocate for myself. Since I thought the problem was just me, I didn’t vocalize about my issue as much as I could have.
Describe your experience living with celiac disease.
I am very thankful for my diagnosis and the advances made in the years since then in the food and medical world. My health and life became so much better as soon as I went gluten-free, but if there was a cure it would make life so much simpler! It is second nature to shop, cook, and eat gluten-free at home, but traveling and eating at restaurants and in the homes of friends and family is still a challenge. As much as I send links and explanations of the disease to help educate, the details are complicated and hardly ever fully understood. For every restaurant we go to I have to Google and call the staff to check on gluten-free availabilities as well as to make sure they take care in the kitchen to prevent cross-contact. It is time-consuming to vet every place I dine at. I still get “glutened” occasionally and often can’t figure out where from.
What would a cure mean for you?
So much more freedom. The elimination of food anxiety and extra planning. More choices, and able to eat some of my old favorite foods again (Chinese, which just isn’t the same with GF versions!) Mostly, a cure would mean enjoying meals with friends and family without making a fuss. And not worrying that I am damaging my body.
Is there anything else you’d like to add to your story?
Gratitude for all the medical people who are working so hard to figure this all out, and for the advances made thus far. It changed my life to have the diagnosis, and to find out I wasn’t just an anomaly! I encourage anyone to seek out as many doctors, diagnoses, and tests as possible until a specific, scientific and reasonable conclusion is found, for any medical mystery you might be having. I have learned the importance of advocating for myself. And now I want to advocate for others with celiac disease as well.
