Describe your life prior to diagnosis.
I suffered from hypoglycemia and anemia the first 34 years of my life. I started having hemiplegic migraines at age 17. I would gain and lose weight without pattern, fall into a near coma after every meal, and would often lose words, memory, and time. By the time I was diagnosed I was in danger of losing my job or going out on medical leave.
How did you find out that you had celiac disease? Did you suspect it beforehand?
I went on a fad diet that eliminated gluten*, and felt so much better that I asked to get tested. I never would have suspected my neurological symptoms were related to gluten otherwise.
*It is not recommend to go gluten-free before being tested for celiac disease. You must be eating gluten to get tested for celiac disease. Learn more.
If you were diagnosed, who made the diagnosis?
My doctor made the diagnosis with blood work. Later on I had an endoscopy, but it was inconclusive. I’ve never had gastrointestinal symptoms. This was the early 2000s. At the time, gluten intolerance was not a thing.
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?
34 years…17 of which I really suffered. The hemiplegic migraines interfered with my pregnancies, my job, my ability to care for my children. My husband had to change jobs in order to be able to pick up the slack.
Do you believe anything could have sped up your diagnosis? If so, please explain:
I don’t know. So much more is understood about celiac disease and gluten sensitivity now. I’m not even sure I would be diagnosed with celiac disease today.
Describe your experience living with celiac disease:
It’s much easier now. So many more options are available. But I never struggled with giving up gluten. My life changed so dramatically for the better, it was easy to let gluten go.
What would a cure mean for you?
I struggle with many other food sensitivities, and my diet is very limited. I think a cure for celiac disease would lead to a better understanding of food sensitivities in general, and maybe I could expand my diet.
Is there anything else you’d like to add to your story?
Even with all the advances, I don’t think the neurological symptoms of gluten sensitivity get a lot of attention. My diagnosis is still celiac disease because that is what my health providers understand. But I’ve never had a neurologist believe me, or anything about my experience.
