During an ultrasound the doctor told my husband and me that our son was too small for his gestational age. I’ll never forget his words: “Your baby isn’t growing; the placenta looks old.” He sent me home on strict bedrest. But being a couch potato didn’t last long. Within a week my blood pressure and weight spiked and my feet and hands bloated like water balloons. A visit to my OB confirmed what I’d already self-diagnosed from reading What to Expect When You’re Expecting. I had toxemia and needed to go to the hospital immediately.
The minutes, hours, weeks and months that followed were like riding on a frightening rollercoaster without breaks. Uncontrollable vomiting (all over the staff!), dizziness, and a pounding headache. A noisy ambulance ride to a second hospital with a better neonatal intensive care unit. My husband’s ashen face and shaking hands when a doctor we had never met before said matter-of-factly, “If the baby isn’t delivered now, both your wife and son will die.”
Daniel arrived three months early weighing one pound 11 ounces (a baby his age should weigh over two pounds). He could literally fit in the palm of my hand. I’ll never forget the overwhelming feelings of guilt and failure when I first saw my son. His chicken-size body was covered in a web of wires and a respirator breathed for him. I fled the NICU.
Throughout my pregnancy I’d done everything right: no alcohol, daily prenatal vitamins, exercised and ate right. So why did this happen?
Twenty-two years later, it breaks my heart to learn something as simple as eating wheat could have caused our son’s early delivery as well as my other pregnancy complications. (Prior to Daniel, I’d had a late miscarriage followed by rare life-threatening bleeding during a D&C. Our second son, Steven, arrived after complications and bedrest. Pregnancy and my autoimmune system are incompatible, to say the least.)
I wasn’t diagnosed with celiac disease until long after my childbearing years. Funny, what first popped into my head when I learned gluten wasn’t my friend was how I reacted to wheat during pregnancy–I craved starch and carbs and ate lots of spaghetti, lasagna, and bread! Mealtimes often ended with stomach pains, diarrhea, heartburn, and indigestion, which the nurse practitioner said were “common symptoms of pregnancy.”
I now know these are signs of celiac disease, too. In fact, they were probably my first symptoms. Experts say that CD symptoms often first appear during pregnancy. Too bad I didn’t have a doctor who knew that.
While some studies have found little or no connection between CD and pregnancy problems, recent data supports a link. An ongoing large study by Thomas Jefferson University in Philadelphia, still to be published in a peer-reviewed journal, indicates women with celiac disease report a higher likelihood than other women of having difficulty with conception and pregnancy, including a greater chance of preterm birth. Surveying 1,022 women, they found:
* 43 percent of women with CD reported miscarriages prior to CD diagnosis compared to 37 percent without celiac disease, and
* 23 percent of CD women gave birth prematurely compared to 14 percent of non-CD women.
A 2010 Danish study found that mothers with untreated celiac disease gave birth to smaller babies and delivered early compared with women who didn’t have CD. On the positive side, after mothers were treated for CD with a gluten-free diet, they had healthy deliveries.
Of course, these women needed to be diagnosed with CD first.
I can’t help but wonder how things might have turned out differently for my children if I’d know about my disease. While Daniel is a healthy college senior now, his childhood was plagued with respiratory illnesses, surgery, hospitalizations, and developmental therapy. (Ironically, it’s our full-term child Steven, now a college student, who has celiac disease.)
And what about the baby we lost? Could something as simple as eliminating gluten from my diet have saved him or her?
Soon after Daniel and Steven’s births I wrote and published two books, Your Premature Baby and Child and The Pregnancy Bed Rest Book. During substantial research and interviews, I never came across untreated celiac disease being a risk factor for infertility, low birthweight and preterm birth. This needs to change! Obstetricians must recognize the symptoms of celiac disease and listen to their patients–not just brush aside a woman’s complaints as pregnancy related! Books, websites and other literature should inform pregnant women of the risk of untreated celiac disease during pregnancy (keep in mind, 1 in 133 people have CD!).
I can’t do anything about the outcomes of my pregnancies, but I might be able to make a difference in the life of another young woman and her family. You can too. Please won’t you join me in getting the word out about celiac disease and pregnancy?
The National Foundation for Celiac Awareness, “Pregnancy and Celiac Disease,” by Amy Burkhard, MD, RD
Celiac Disease Awareness Campaign, “Women with Celiac Disease More Likely to Have Trouble Conceiving, Pre-Term Births”
Living Without, “Why Can’t We Have a Baby? Unexplained Infertility and Celiac Disease” by Christine Boyd