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Alice's Story

 
11/17/2008

Alice's Story


I am a woman, a mother, a wife, a sister, a friend, a business person, and a celiac. A celiac? How did that uncommon word become so much a part of my life? My story is typical of the diagnosis of celiac disease.

I am the mother of two wonderful girls, Elizabeth Sarah, almost 16, and Beatrice Linnea, who just turned ten. Sometimes, people ask why I planned my children so far apart. As tears flood my eyes, I explain.

In 1988, my husband Will and I traveled to Mexico where I apparently ate or drank something that left me violently ill. Upon my return, several months passed before my physician was able to diagnose and treat some sort of parasite. But even after strong antibiotics and other medicines, my symptoms would not clear up. I still suffered from diarrhea, fatigue, bloating, and a general feeling of malaise; general discomfort. Being the active type, I’ve always been, I still managed to pursue my daily routine which included working full time and chasing after my two-year-old-Elizabeth.

When I began to feel better, my husband and I decided it was time to expand our family. The first six months of the pregnancy were uneventful. I felt healthy and my unborn child was quite a little kicker. Suddenly, at the end of my second trimester, I was struck with severe debilitating diarrhea. Several times, I saw my obstetrician, complaining that I had not eliminated a formed stool in over a month. He told me not to worry, that I looked very well and the baby was growing normally.

Two weeks prior to my due date, I told my doctor that the baby’s movement didn’t seem right. He asked me what I meant and I said the baby wasn’t moving in a fluid manner but was “jerky”. He looked at me, perhaps patronizingly, and said that, of course, the baby had grown so large that he or she had no space to move and that I was just imagining problems when there were none. But this was my second pregnancy and it was so different from my first.

A couple days later, I called the physician and again complained that the diarrhea was “out of control” and my baby was hardy moving. He again stressed that the baby did not have much room to maneuver and that I shouldn’t worry so much.

Two days later, I told my husband Will that our baby was dead, that all movement had ceased. He put his head on my tummy and I could see the panic in his eyes. We drove to the hospital where I proceeded to deliver a full term still birth. We named her Emily. She was well formed and beautiful. Could this tragedy have been avoided? My doctor told me it was just “one of those unexplained still births.” I wanted an answer, not just a pat on the shoulder. Other doctors also insisted that my next pregnancy would be uneventful, that the still birth was just a “fluke” of nature.

After several years and several early miscarriages, I became pregnant and carried another child without complications until the sixth month. I again complained of diarrhea and a sense that the baby wasn’t growing properly. This time, my physician, a high risk obstetrical gynecologist listened.

He put me on bed rest and monitored my weekly progress. My hunch had been right. My placenta was not functioning correctly; my doctor used the term “intrauterine growth retardation”. All I could do was lie in bed, trying not to move and hoping that my placenta would be able to feed this fetus for the next three months.

At 33 ½ weeks, I called my doctor and said that I hardly felt any movement. Again, he listened. My family raced me to the hospital where I quickly delivered a premature infant by caesarian section. Linnea was born, three pounds, feisty and screaming at the top of her little lungs. She was alive! She fit into the palm of my hand but she had survived.

Why had this baby been “growth retarded” like the stillborn? My placenta was flown to California to be examined. All the studies were inconclusive, indicating some sort of virus. This time, my physician advised me not to have any more children.

My tiny daughter spent several weeks in the neonatal unit and finally arrived home a healthy but miniature four pounds. As she gained weight and thrived, I lost weight and felt terrible. My diarrhea was almost constant and I was often publicly embarrassed by these “runs”. I visited doctor after doctor. I became not only physically exhausted but emotionally and mentally wiped out. The general professional consensus was that I needed to see a psychiatrist. My sister-in-law asked my husband if I was anorexic. My dentist mentioned that my teeth and gums were suddenly in poor condition. I had seen 22 physicians and was sick of their saying “you look fine”.

One day, while talking to my friend, Joanna, a veterinarian, she suggested that maybe I had some sort of food allergy.

Soon thereafter, a new gastroenterologist, my 23rd physician, called to say he thought I had a “rare” autoimmune disease called celiac sprue. He scheduled an endoscope and confirmed the diagnosis. Finally! I did not have cancer. I wasn’t dying. I wasn’t crazy. I was elated. I could control my symptoms by eating a gluten free diet. And I was not alone. I joined the Greater Philadelphia Celiac Sprue Support Group and Phyllis Brogden became my mentor.

Unfortunately, my saga continued. I was quite disciplined and followed the gluten free diet rigorously, but I still felt unwell. I was tired, my hair was dry, and my palms had turned a strange yellow. An endocrinologist diagnosed hypothyroidism. I learned that undiagnosed and untreated celiac disease can lead to other autoimmune diseases. If not recognized, the disease can manifest itself with severe complication like reduced bone density, neurological disorders, malignancies such as adenocarcinoma, non Hodgkinss lymphoma, and others, and a host of autoimmune disorders such a insulin dependent diabetes, thyroid disease, Sjogren’s syndrome, Addison’s disease, autoimmune liver disease and cardiomyopathy. It is usually these other disorders that get the attention and the underlying celiac disease that has been present for years is overlooked.

I asked my endocrinologist if he thought that I had had an autoimmune response to my own placenta. He offered to do a literature search. He came up empty handed but said his “gut” told him that celiac disease was related to my difficulty in carrying a baby to term. Most of the other specialists had said that the still birth was unrelated to my malady but I now had a physician who agreed there might be a link.

I now felt encouraged to explore further. In August of 2000, I attended the 9th International Symposium on Celiac Disease in Baltimore, Maryland. The very first lecture solved my mystery. Not only is there a problem with fertility, repeated spontaneous abortions (yes, my miscarriages) and amenorrhea in untreated celiac disease patients, but CD causes “Intrauterine Growth Retardation” in babies born to untreated mothers. This can be corrected by a gluten free diet. A gluten free diet prevents fetal growth retardation! “Why didn’t any of my physicians know this?” All I needed to do was stop eating gluten! I did not have atypical symptoms; I was symptomatic. How could this be?

Other women should not have to suffer the way I suffered, or lose babies the way I lost mine. I mailed information to hundreds of OB/GYNS, describing celiac disease and associated problems with reproductions. Yet, no one seemed to read the material. Anyway, they didn’t respond.

I tell my friends, family, and anyone that will listen that approximately1/133 people have celiac disease but as many as 60% of CD victims have the atypical or asymptomatic form and are unaware of the devastation this disease can wreak. So many rarer illnesses are so much better known to the public and to physicians. There is a real need to raise awareness concerning CD which in turn will educate physicians.

Dr. Richard Deckelbaum, director of the Institute for Human Nutrition refers to CD as “THE GREAT MASQUERADER”. Although Celiac disease is one of the most common inherited diseases, many patients live with the symptoms and complications for over a decade before they are diagnosed. Diagnosed correctly, I mean, because so many false diagnoses are given to the “great masquerader”. If you look at the numbers, Celiac disease is more common than Aids in North America.

I feel so strongly about my identity as a celiac because it is almost always overlooked by physicians. I want to increase knowledge and funding for CD. I have applied for an NIH grant called, “Novel Educational Aids for Celiac Disease” and if funded, I will be working with renowned collaborators to further this goal. Common sense tells us that identifying the disease early will save patients and health care a significant amount of time and resources (not to mention suffering). Dr. Jay Hoofnagle, Director of the Division of Digestive Diseases and Nutrition at the NIDDK noted that one of the important issues regarding new information on Celiac disease was delivering the message to physicians. To this end, I plan to raise awareness and funding for celiac disease that will advance research, education and screening. I would like to make a difference. Increased awareness of the disease will lead to earlier detection, a reduction in complication, a significant decrease in medical costs, pain, suffering, miscarriages, malignancies, other autoimmune diseases and still births. Celiac disease is so treatable yet so under diagnosed!

Does this story sound similar to your or a family members? You might have celiac disease, find out now, take our celiac disease symptoms checklist.

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