Describe your life prior to diagnosis.
My first contact with the condition was as a first-year medical student. I remember thinking, “Oh my God, this must be horrible!” Little did I know I would belong to this group of patients.
I had all kinds of aches during my teen years, but all the labs were negative, so it was assumed I was looking for attention. By the time I was in my residency program, I had abdominal pain, diarrhea, migraines, joint pains, etc., and I thought this must be autoimmune. Tests were run, and these showed chronic inflammation: High complement, high SED rates, and positive ANA tests. I saw a prominent gastroenterologist and asked whether this could be celiac disease. He said, “No, that is a Caucasian disease. You do not fit the profile, as you are Hispanic.”
It took 20 years for a final diagnosis. I ended with undifferentiated collagen disease, which has been in remission since I went on the gluten-free diet. Celiac disease was fueling my collagen disease. Also, I had suffered from chronic moderate to severe eczema all my life, which has not recurred since I went gluten-free (GF). The worst is that people do not understand the complexity of the condition. My brother and one of my grandkids have been diagnosed as well.
Because my husband worked in the food industry, we were often invited to new restaurants and the like. It was a hassle. Years ago, restaurants were uninformed about celiac disease. I also have a collection of machines in my kitchen: ice cream, yogurt, and bread makers, you name it. There wasn’t a variety of GF foods available in Puerto Rico until they opened a small market catering to different kinds of medically-required foods. This was a Godsend.
How did you find out that you had celiac disease? Did you suspect it beforehand?
I suspected celiac disease and informed my doctors, but not even the gastroenterologist (4) thought I had celiac disease until, finally, I underwent an endoscopy. Totally flat villi in the duodenum.
If you were diagnosed, who made the diagnosis?
A woman gastroenterologist in Puerto Rico. Yes, I think that the fact that I am a woman made physicians think it was just drama, hormones, or anxiety.
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?
About 20 years. I developed a B12 allergy from the shots of the vitamin, as well as nerve damage from the B12 deficiency.
Do you believe anything could have sped up your diagnosis? If so, please explain:
The application of race and gender. They kept telling me I could not have the condition because I am Hispanic. Racism? Maybe. I mean, I was a textbook case!
Describe your experience living with celiac disease:
At present, I am very strict with regard to my diet. Recently, I began to feel sick again, which sent me into detective mode. Result? Paper plates now have this wheat layer! It is everywhere!
What would a cure mean for you?
Being able to eat at more restaurants with my friends, as well as attend family affairs. Not having to inspect everything before I put it in my mouth. Going to weddings and not having to say, “No, thank you!”
Is there anything else you’d like to add to your story?
As a pediatrician and a celiac, I understand how difficult it can be to navigate this world. When I diagnose a patient, I will meet with the child (as per age) and parents in a nearby supermarket and go through the aisles, explaining how to read labels, identifying wheat variants, what can be suspected, etc.