Dominic – 33 weeks
Every child dreams of what they will be when they “grow up.” My dream was to be a Mommy. I babysat, worked as a professional nanny, and even studied Early Childhood Education. Then the time was right…I was 26 years old, happily married, and seemed to be in perfect health when I learned I was expecting in 2009. My husband and I were thrilled and felt blessed that it happened so easily.
Six weeks into the pregnancy I started having severe morning sickness (technical name is hyperemesis gravidarum,) and I was told it was a sign that my HcG levels were high which was a good sign that everything was healthy. I was given IV fluids and followed the advice of well meaning friends and doctors who told me to eat saltines and dry toast. Aside from the continued morning sickness the pregnancy went on like normal and I entered the second trimester. I thought I was ‘in the clear’ and no longer at risk for miscarriage so we shared our happy news with our friends and family.
Eighteen weeks into our pregnancy, our nightmare began with the loss of our baby girl. We were told it was bad luck and our doctors said to try again. I wish I could say our first loss was an isolated incident but unfortunately our nightmare continued as we had two additional second trimester losses–another daughter at 19wks and a son at 16wks gestation. Our babies’ hearts were stopping and the doctors couldn’t figure out why. We consulted with some of the best perinatologists, genetic counselors, and maternal fetal specialists in both New York and Connecticut. We had numerous testing (recurrent loss work ups, genetic testing, an autopsy on the babies, etc.) to try to determine why this was happening, but everything came out “normal.” After the third loss we decided to have my placentas studied by a placental specialist who found inclusions on them. There wasn’t much information about what the inclusions were but they indicated that something wasn’t right. My husband and I were losing hope and my heart was broken. How could I go on after experiencing this much loss and still not have a definitive answer as to what was wrong?
We found a great support group for families that had experienced late term pregnancy loss and it was the group leader that suggested I get tested for Celiac Disease. She also has the disease and knew that it could cause infertility and recurrent miscarriage. I looked up the symptoms on the internet and thought I couldn’t possibly have the disease as I didn’t have any of the typical gastrointestinal symptoms. However, at her urging I asked my doctor to test me. A few days later I received our first lead. My antibody levels that were triggered by Celiac were extremely elevated. My OB immediately referred me to a gastroenterologist for further evaluation. The gastroenterologist performed an endoscopy that showed severe damage to my intestines confirming Celiac Disease. While nobody ever wants to hear something is wrong with them, I was happy that finally something abnormal had been found. Maybe this was our answer! I contacted the Celiac Disease Center at Columbia University with my story and quickly got an appointment with Dr. Peter Green, who is a specialist in the field. He listened to me share our story, while carefully reviewing my documented medical history and the results of my placental studies. He silently began printing out several medical journals indicating the link between Celiac and recurrent miscarriage. In many of the studies, they observed the same inclusions on the placentas of women with untreated Celiac Disease. In my case, it seemed the antibodies triggered by the Celiac Disease were binding to my placenta and disrupting the function, so that the babies were not getting everything they needed to continue to survive. Based on some findings on my teeth he is fairly sure I have had the disease since before the age of six. In addition to the intestinal damage, and recurrent pregnancy loss, the severe morning sickness also appeared to be a possible symptom I experienced related to the disease. Now that we finally had our answer, the next question was-how do we ‘fix it?’
Dr. Green recommended that I bring my antibody levels down to the negative range before attempting another pregnancy. The only way to do this was to keep to a strict gluten free diet. I was very diligent and avoided eating out as I was so fearful of accidentally ingesting gluten. It took almost a year but the levels were finally in the negative range. We were excited to try for another pregnancy and were cautiously optimistic when we received the news that we were indeed expecting. This pregnancy was very different as I only experienced slight morning sickness that disappeared as I entered the second trimester. Physically I felt great and deep down I knew this time would be different. As we sailed through the second trimester we became more confident and on January 5, 2013 we brought our beautiful and healthy baby boy, Dominic, into this world!!! He arrived seven weeks early due to placenta previa (which was not related to the Celiac Disease,) and he is now an active toddler and thriving!
We feel so blessed to finally have our baby, but are also saddened that it took the loss of three babies to figure out what was wrong. If it wasn’t for the wonderful leader of our support group, it is unlikely that we would have found out what was causing our losses, and we eventually we would have moved on to another path of building our family.
Studies show that 1 in 250 people have Celiac Disease. If you or someone you know is struggling to get pregnant or maintain a pregnancy I urge you to ask your doctor to test you for Celiac Disease. For those who test positive, a simple diet change may be the answer to making your dreams of a family a reality.