I am only 25 years old, but I am blessed to have already found three
exceptional role models who I admire and respect more than I ever could
have imagined. All three of them are women who experienced devastating
pregnancy complications because they spent so many years with
undiagnosed celiac disease.
Alice Bast
I met NFCA Executive Director Alice Bast
in July 2004 during the National Institutes of Health Celiac Disease
Consensus Conference. I was working as a news reporter for the Palm Beach Post
newspaper and writing an article on celiac. In my editor's mind, this
was a very slow news day. Little did I know, that it would turn out to
be one of the most important news days of my entire life.
As Alice was explaining the basics of the disease to me, she
mentioned that migraine headaches are a symptom of celiac. When she
said this, I think I dropped my notebook and pen on the floor. I was in
shock. I had suffered debilitating migraines my entire life and had
tried every headache medication available, all to no avail. I
immediately got tested and sure enough, I had celiac.
The week after I received my positive blood test, I called Alice to
thank her and learn more about the disease. Alice told me her personal
story of being diagnosed with celiac, a story that to this day still
brings tears to my eyes to think about.
Alice first experienced symptoms of celiac disease after returning
from a trip to Mexico and deciding with her husband to have a second
child. The first six months of the pregnancy were uneventful. She felt
healthy and her unborn baby was quite a little kicker! But suddenly, at
the end of the second trimester, Alice was struck with severely
debilitating diarrhea. Several times she visited her obstetrician,
complaining that she had not had a formed stool in over a month. He
told her not to worry.
Two weeks before her due date, the diarrhea had gotten out of
control and Alice continued to say that the baby was not moving
correctly. Again, the doctor said that the baby was in a small space
without much room to maneuver and that Alice shouldn't worry so much.
Two days later, Alice told her husband that the baby was dead, that
all movement had ceased. He put his head on her tummy and as Alice
says, "the panic in his eyes confirmed my fears." They drove to the
hospital where Alice delivered a full-term stillbirth child. Alice and
Will named the baby Emily.
It took Alice several more years and a near second stillbirth baby before she was diagnosed with celiac disease.
CNN Newsroom Anchor Heidi Collins
Heidi
Collins and I first met in person in November 2006 at the International
Celiac Disease Symposium in New York City. We immediately bonded over
gluten-free food and the desire to help all Americans with celiac
disease get accurately diagnosed. And…of course, the need to improve
gluten-free food options!
Heidi's passion for helping people with celiac disease comes from
more than a decade of suffering debilitating symptoms and, like Alice,
losing a child.
Heidi's constant health issues grew nearly intolerable when she
moved to CNN's New York office. She continued visiting doctors until
finally after 15 years of one health problem after another, her general
practitioner diagnosed her with celiac disease. With one simple blood
test, Heidi had found a diagnosis that would allow her to work toward a
cure for her chronic medical conditions and an answer as to why her
pregnancy had failed.
Connie Maltin, my mom
My mom and dad
are the two most amazing people in the world. They are the most
supportive, kind and generous people I know, making them the perfect
candidates for parenthood. My parents were married in February of 1973
after my mom convinced my dad that she made the best cookies in
America….little did my mom know that those delicious cookies would
cause her and my dad some of the greatest devastation
imaginable….miscarriage.
Because of my mom's celiac, it took nine years to successfully have
a child, ME, and it was still a close call. I was born two months early
and weighed only about three pounds.
To help other families prevent the devastation that Alice, Heidi and
my mom experienced, here is some basic information on infertility and
reproductive health that explains the link to celiac disease.
Celiac Disease and Infertility Link:
Over the last 10 years, several studies have examined the link between
celiac disease and infertility and found that women suffering from
unexplained infertility may have clinically silent celiac disease.
- One study conducted by physicians at Thomas Jefferson University
Hospital in Philadelphia found that the rate of recurrent spontaneous
abortion (RSAB) and infertility in celiac disease patients is at least
four times higher than the general population. They suggested that
patients who experience unexplained infertility or RSAB should be
screened for celiac.
- Another study from the Department of Medicine at Tampere University
Hospital and Medical School at the University of Tampere Finland found
that the rate of celiac disease among women reporting infertility was
4.1%. Although the exact reason for the increased risk remains unknown,
the researchers suggested that female celiac patients who are not
adhering to a gluten-free diet have a shortened reproductive period and
early menopause. Males with celiac disease have shown gonadal
dysfunction, which could also contribute to fertility complications.
- The link between celiac disease and infertility is currently being
evaluated by researchers at Molinette Hospital in Turin Italy. Early
reports from their research suggest that the prevalence of celiac
disease among women with unexplained infertility is 2.5% to 3.5% higher
than the control population. They suggest that celiac disease
represents a risk for abortion, low birth weight babies and
short-breast feeding periods, all of which can be corrected with a
gluten-free diet.
What is infertility?
Infertility is defined as the biological inability of a woman or man to
contribute to conception. Many experts define infertility as not being
able to get pregnant after at least one year of trying. Women who are
able to get pregnant but then have repeat miscarriages are also said to
be infertile. According to the National Center for Health Statistics,
roughly 12% of women in the United States—up to 7.3 million—had
difficulty getting pregnant or carrying a baby to term in 2002.
Although it is commonly believed that infertility is heavily related
to female factors, only about one-third of cases of infertility
actually stem from the woman. About one-third of cases originate with
the male partner and the remaining cases are a combination of unknown
factors or a mix of male and female complications.
Infertility in Women:
Most women who suffer from infertility have a problem with ovulation,
meaning there is a complication with the eggs being released to be
fertilized. Other causes of infertility include:
- Ovulation issues
- Problems with the uterus lining
- Uterine fibroids
- Blocked fallopian tubes because of endometriosis, ectopic pregnancy, or pelvic inflammatory disease.
Factors that increase a woman's risk of infertility:
- Age
- Diet
- Athletic activity
- Stress
- Overweight or underweight
- Smoking
- Alcohol consumption
- Sexually transmitted diseases (STDs)
- Health problems that cause hormonal changes
- Celiac disease
Infertility in Men:
Infertility in men is generally caused by producing too few or no
sperm. The problem may also be the sperm's ability to travel to the
female's egg and fertilize it. This is typically caused by abnormal
sperm shape that prevents it from traveling in the correct form.
Factors that increase a man's risk of infertility:
- Alcohol consumption
- Drugs
- Toxins in the environment such as lead and pesticides
- Smoking
- Chemotherapy and radiation treatment for cancer
- Celiac disease
Tests for Infertility:
- Hysterosalpingography:
Physicians use x-rays to check for physical problems of the uterus and
fallopian tubes. They inject a special dye through the vagina into the
uterus, which shows up on the x-ray. This will allow the physician to
determine if the dye moves normally through the uterus into the
fallopian tubes. With these x-rays, doctors can find blockages that may
be causing infertility.
- Laparoscopy: During this
surgery doctors use a tool called a laparoscope to see inside the
abdomen. The doctor makes a small cut in the lower abdomen and inserts
the laparoscope. Using the laparoscope, doctors check the ovaries,
fallopian tubes, and uterus for disease and physical problems. Doctors
can usually find scarring and endometriosis by laparoscopy.
Treating Infertility:
There are several ways to treat infertility includin
- Medicine
(clomiphene, Human menopausal gonadotropic, follicle-stimulating
hormones, gonadotropic releasing hormones, metformin, and
bromocriptine).
- Surgery
- Artificial insemination or assisted reproductive technology.
- Often times treatments are combined.
References:
- National Women's Health Information Center (NWHIC)
- American College of Obstetricians and Gynecologists (ACOG) Resource Center
- American Society for Reproductive Medicine
- Resolve: The National Infertility Association
