Jocelyn's Story with her son Kyle
It took 11 years, 11 doctors and enormous perseverance before Jocelyn finally discovered the cause of the vast and varied medical problems she was having celiac disease.
It all started when she was 19 years old while attending college. Feeling weak and tired constantly, Jocelyn consulted a doctor who told her that she had an iron deficiency and, possibly, mononucleosis. As this explanation seemed logical to Jocelyn and her family, she thought that the doctor had found the reason for her feeling the way no normal and healthy 19-year-old should feel.
As anticipated, Jocelyn continued with college at Rutgers focusing her attention on college life and her studies. But her battle with illness continued. Throughout her college career, Jocelyn suffered with unexplained anemia and fatigue. But, who isn’t tired in college?
As time passed, the anemia and fatigue were just a part of life for Jocelyn. Then more symptoms presented. At the age of 25, Jocelyn suddenly became lactose intolerant. This was the defining moment of the celiac disease for her. From this point on, diarrhea, gas, bloating, anemia, and fatigue were a constant part of her world. She consulted a doctor who told her to stop eating all dairy products. Complying with this advice, Jocelyn felt better- a little better. Significantly, she was not referred to a gastroenterologist.
Still, nothing helped.
At the age of 26, Jocelyn was taken to the hospital suffering from dehydration. As part of the diagnostic routine, the hospital staff performed a colonoscopy, upper GI series, and lower GI series, and looked at everything. However, they did not do an endoscopy that might have produced the solution to these problems. Like many others, Jocelyn was diagnosed with Irritable Bowel Syndrome. Again, Jocelyn and her family thought that they had found the answer.
And, again, Jocelyn’s medical problems persisted. Over the next five years, she saw seven more doctors, many of them specialists. Included were a colon specialist who told her that her problem looked to be colitis and a hematologist who was baffled!
In spite of all of this illness, Jocelyn led an active life.
In time, Jocelyn married and became pregnant. For the first three months of her pregnancy, she felt good. In fact, she had no problems with her own digestive system. She was slightly anemic but was told not to worry. Her son Kyle was born by emergency C-section at 36 weeks into the pregnancy. He weighed about 5 pounds.
Kyle had reflux from Day One. He vomited all of the time. Nonetheless, he was growing. Kyle was small and in the fifth percentile. This did not alarm Jocelyn as she is so small and she had no other valid comparison to use for her son. Around Kyle’s first birthday, a routine pediatric exam revealed that the circumference of his head had not changed from 9 months to 12 months. While Jocelyn was concerned, the pediatrician was not alarmed.
Jocelyn was now pregnant with their second child. From the beginning of this pregnancy, Jocelyn did not feel well. She was anemic and felt fatigued. She went to a hematologist who told her to take 2000 mg of iron daily thinking she had an iron deficiency. Following this advice brought no improvement.
Sadly, Jocelyn went into pre-term labor. The placenta had malfunctioned based on iron deficiency. This child, Damien, was due on March 2 but arrived very early on January 20 via emergency C-section because of placenta abruption. Damien weighed four pounds.
Three more years passed and Jocelyn felt worse and worse. Because she had two small children just one year apart, she thought much of her fatigue had to do with her daily routine as a mother. As an energetic and active person, she kept up with all of her activities managing the household while her husband worked long hours. At one point, Jocelyn lost ten pounds in one month. Again, she suffered from bloating, gas and diarrhea.
Soon, Jocelyn found that she could not go out some days. She needed to be able to find a public rest room at any moment and she had two small children in tow.
In the meantime, Kyle seemed to be doing well, yet eating enormous amounts of food. She told her husband that Kyle should weigh 500 pounds with all of the food I am giving him. At 18 months, Kyle was diagnosed as being lactose intolerant with bouts of diarrhea that would last for three weeks at a time. The doctor was not terribly alarmed and put him on Maalox.
As time passed, Jocelyn got worse even thinking she was close to death. She went back to her original gastroenterologist who performed additional blood tests. It took two days to get the results. The diagnosis was that she had a rare disease called celiac sprue. Within a week, Jocelyn had a biopsy. When looking at the results, the doctor compared her small intestine to a linoleum floor.
Jocelyn was now 30 years old. It had been 11 long years since she first sought medical advice for her problem.
Immediately, Jocelyn called the pediatrician to have Kyle tested. Although the pediatrician was reluctant to perform the test, Jocelyn insisted. The test came back positive for celiac disease. Finally, the doctor recommended a gluten-fee diet. A trip to Children’s Hospital of Philadelphia and a visit with Dr. Ritu Verma confirmed the diagnosis: celiac disease.
Although keeping a gluten-free diet is difficult for small children, it is working for Kyle. He does feel different, especially when he has to eat special foods at birthday pizza parties and must take food from home to school instead of eating the cafeteria food with the other children. This social aspect of celiac disease becomes more and more apparent as most special occasions at school are celebrated with food including pretzels, potato chips, cookies, cake and donuts. Kyle will be attending a private school in the fall where the class size is small and it will be easier to manage this special diet.
Since that time, Jocelyn’s son Damien has had gene testing to be certain that he does not have celiac disease. He does not. She is a member of the Greater Philadelphia Celiac Sprue Support Group and is working to expand the Cel-Kids Network with the Celiac Sprue Association.
As a result of her experiences, Jocelyn is a firm believer in the need for educating healthcare professionals about celiac disease, regardless of their length of experience or specialization. She believes that there is an urgent need for a celiac disease awareness campaign for all healthcare professionals to improve the speed and accuracy of diagnosis. She is eager for the development of truly effective continuing education programs in celiac disease that are required for doctors to maintain their credentials.
Jocelyn wanted to tell her story, and Kyle’s, to have an impact on physicians. Doctors need to have good examples of real cases of celiac disease. This is a big need.
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.