Content warning for miscarriage and baby loss
Describe your life prior to diagnosis.
I was pretty unaware I had any problems prior to my miscarriages. Before, I had constipation, bloating, lactose intolerance—horrible gas that could clear a room—iron deficiencies, and vitamin D deficiencies. Shortly after I was married at 34 years old, I became pregnant. I miscarried at 11 weeks. I became pregnant again a couple months later and miscarried at nine weeks. My OB ran labs for recurrent pregnancy loss, but everything came up negative.
I’m a physician assistant in family practice. My brother was diagnosed with celiac disease six months earlier, and I read on UpToDate that celiac has been linked to recurrent miscarriages. I started a gluten-free diet and my bloating, gas, and constipation went away. A couple months after starting this diet, I became pregnant again.
Unfortunately, I had pretty serious pregnancy complications. I had bleeding at 16 weeks, and after my son was born, I found out that complications were due to a chronic placenta abruption from massive perivillous fibrin deposition. My son was born early at 30 weeks, small for gestational age, and ultimately passed from respiratory failure at day six of life. About a year later I became pregnant again. My daughter was perfectly healthy and born on her due date. There were no pregnancy complications.
How did you find out that you had celiac disease? Did you suspect it beforehand?
Before my daughters first birthday, I accidentally ate some gluten pasta and felt lightheaded, nauseated, and eventually vomited several times. After this episode, I decided to try to get the official diagnosis. I had labs done, which were negative for the celiac markers, but positive for one of the genes.
We decided to pursue endoscopy with a biopsy. A biopsy of my small intestine was consistent with celiac disease. I did not really suspect celiac disease, but my husband asked me to try a gluten-free diet after the two miscarriages, and I relented, since my brother was recently diagnosed.
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?
I had my symptoms of constipation and anemia since childhood. Lactose intolerance was more apparent in high school. My symptoms were nonspecific, and unfortunately missed until I became more own advocate after my miscarriages.
Do you believe anything could have sped up your diagnosis?
It would have been nice if I was screened after my miscarriages by my OB, and if I had some guidance to how long to be on a gluten-free diet before becoming pregnant again. There was a point when my PCP could have screened me when I didn’t respond well to oral iron supplementation—that was a few years before getting pregnant. I believe the medical community is more aware of celiac disease now than even 10 years ago.
Describe your experience living with celiac disease.
It’s actually been great in some aspects. I don’t have horrible gas anymore, and can eat ice cream again. Challenges are at social gatherings that involve food, or being careful where I eat out. Thankfully, I was never one for fast food. I should add: my husband has been very supportive, and has pretty much adopted a gluten-free diet too.
What would a cure mean for you?
I’m okay with how things are. The only thing I miss is baklava, but I’ve figured out how to make gluten-free cinnamon rolls and other baked goods. There’s a lot of great cookbooks and food bloggers focused on gluten-free baking that are fabulous.
Is there anything else you’d like to add to your story?
I’m on my fifth pregnancy, 26 weeks, and everything is going as smooth as my fourth one. Thank God!
