In the fall of 2011, my then-5-year-old daughter began to complain daily of stomachaches. When she was dismissed from her kindergarten class every day, all her friends ran outside to enjoy the playground. Instead of joining them, she told me she was too tired, so I would take her back home, where she would lie on the couch, watch TV, and eat, which caused her to become overweight.
When she used the bathroom, it would take her more time than usual, so I checked up on her and discovered that she had diarrhea. For a couple of weeks, I made her eat foods known to prevent diarrhea, but her condition persisted. Perplexed by her illness, I took her to our pediatrician for an examination.
I told the pediatrician that my daughter has a half-sister with celiac disease. It’s a condition in which gluten — a protein found in wheat, rye, barley, and some other grains — leads to damage to the lining of the small intestine, which results in the body’s inability to properly absorb nutrients from food. Since celiac disease is a genetic disorder, the doctor thought my daughter could have celiac disease, too, and gave me the name of a pediatric gastroenterologist who could examine her further.
When we finally met with the pediatric gastroenterologist, we listed my daughter’s symptoms and also let him know that my daughter’s half-sibling suffers from celiac disease. The gastroenterologist showed us that my daughter’s stomach was slightly distended, another trait of those who suffer from the disease.
The doctor ordered blood work, the initial step in determining if a patient has celiac disease.
Celiac disease is not a food allergy. It is classified as an autoimmune disease, meaning that the immune system attacks one’s own body. After assuring my daughter that drawing blood was like getting a pin prick, we went to a local medical lab to have her blood drawn. The test was to determine if she had high levels of three celiac antibodies: tissue transglutaminase, endomysial, and antigliadin.
After a week, the gastroenterologist called to say that he had received my daughter’s blood test results and that she had high levels of all three antibodies. For him to make a definitive diagnosis for celiac disease, he would have to perform an endoscopy on her, which would involve placing a narrow flexible tube into her body to obtain a biopsy of her small intestine.
The doctor gave our daughter anesthesia before performing the endoscopy. After obtaining and examining tissue from her small intestine, he told us that our daughter definitely had celiac disease, and would have to be put on a gluten-free diet.
My husband and I explained to our 5 year old that she couldn’t eat anything that had bread in it. We shopped a lot in organic food stores and purchased gluten-free versions of food, which was much more expensive than foods containing gluten.
When I did my grocery shopping at the regular supermarkets, I learned to read the labels if the product didn’t say “gluten-free” on it. If the label listed wheat, gluten, flour, barley, or rye, we couldn’t buy it for our daughter. In our kitchen, I was constantly cleaning the countertops, dishes, and toaster oven, so no residual food with gluten in it would contaminate my daughter’s meals.
As soon as I put her on the gluten-free diet, I saw a change in her physical condition. She stopped suffering from diarrhea and no longer complained of stomach pain. She had much more energy and began frolicking in the park after school with her friends.
After six months, we visited the gastroenterologist’s office. Based upon my daughter’s most recent blood test results, the level of the celiac antibodies had been reduced by half. She had also lost weight now that she had the energy to exercise, and the doctor showed us that her stomach distension was gone.
When we returned to the gastroenterologist’s office after another six months, he ordered more blood work and said the antibodies had finally fallen to normal levels. The doctor also introduced me to his new associate, who he had hired to help him with his growing practice.
The new gastroenterologist, Dr. Nicole Jordan, insisted that my daughter’s blood now be drawn to check the levels of vitamin B12 and the minerals copper and iron. She said celiac patients should have their vitamin and mineral levels checked annually to ensure their body is properly absorbing nutrients from their food.
With regard to my daughter’s condition, Dr. Jordan told me, “It sounds like your daughter probably had classic celiac disease symptoms with the usual presentations of diarrhea, maybe not eating, belly pain, stomach distension, gassiness, not growing very well … and vomiting.”
According to Dr. Jordan, only a certain amount of patients with celiac disease show these classic symptoms.
“Unfortunately, there are a third of patients who have celiac disease who show atypical presentations, which tend to be outside of the gastrointestinal tract,” she expounded. “These patients get symptoms like the skin rash dermatitis herpetiformis, a tooth defect called dental enamel hypoplasia, issues with their bones like osteoporosis and osteopenia, delayed puberty, and problems with height development.”
Furthermore, Dr. Jordan said that around 20 to 25 percent of patients have no clinical symptoms at all or have very mild symptoms. With regard to the growing number of patients being diagnosed with celiac disease, Dr. Jordan said that since doctors now know that celiac patients can show no symptoms, more people walking into a gastroenterologist’s office complaining of stomach pain are automatically getting screened for celiac disease.
When I asked Dr. Jordan about the genetic factor for the condition, she said, “We say over 99 percent of celiac patients carry the genetic markers, HLA-DQ2 and the HLA-DQ8. There are about three to five percent of people with those genetic markers, however, that may never develop celiac disease.”
The consequences of not following a gluten-free diet for a patient with celiac disease could be perilous, because the patient is not allowing her body to absorb essential vitamins and minerals in order for it to grow and function properly. Some of the conditions associated with celiac disease include anemia (iron deficiency), infertility and complications with pregnancy, eczema, depression, epilepsy, diabetes, thyroid disease, lupus, fibromyalgia, cirrhosis, and hepatitis. In addition, various medical studies suggest there may be a small increase in some types of cancer if you have celiac disease, such as lymphoma and cancers of the pancreas, liver, and bile ducts.
“We’ve seen that long-term mortality can be affected by those who don’t follow a gluten-free diet when they’ve been diagnosed with the disease,” Dr. Jordan warned.
It’s been two years now since we found out about our daughter having celiac disease, and she has come to accept that she cannot eat certain foods. Although she does get frustrated at birthday parties when cakes and cupcakes full of flour are served, I usually try to buy or bake a gluten-free alternative for her. Overall, we try to stay positive, especially since she now has so much more energy to run around the playground with her friends and to learn how to play different sports.
If you are a parent of a child with celiac disease and are interested in joining a support group in the Queens area, you can contact Dr. Nicole Jordan at her office at (718) 592–7797. For more information about celiac disease, visit the website for the Celiac Disease Foundation at www.celiac.org.
Allison Plitt is a freelance writer who lives in Queens with her husband and young daughter. She is a frequent contributor to New York Parenting.
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