Conscious Choice: Living with Celiac Disease

October 2001

Living with Celiac Disease

by Amy Grabowski

Everyone has a day that sticks in their memory as if it were yesterday. While not as historic as the Kennedy assassination or the Challenger explosion, or the recent attacks, mine happened May 6, 1995. Eric (age six) and Alison (two) and I had just returned from grocery shopping. The kids had been so helpful and we even made it through the whole trip without an accident, Alison’s "poo-poo problem." As I made lunch, the phone rang. It was Alison’s newest pediatric gastroenterologist with the results of her intestinal biopsy.

"I don’t know how to tell you this," the doctor said.

"Oh no!" My mind screamed, "My baby’s dying!"

Unpleasant Symptoms

Alison’s "poo-poo problem" started one month after her first birthday. When it continued, up to four times a day, we thought she had the flu. But this was not like any flu Alison had ever experienced. At first her bowel movements looked like coffee grounds. Gradually they changed to a strange pale color, with a frothy texture and an unbelievable stench!

Because Alison was a happy child and had a good appetite, neither my husband Greg nor I were very concerned. When it didn’t clear up after a couple weeks, we visited our pediatrician. He diagnosed "Toddler’s Diarrhea," maybe caused by teething. Reassured that it was nothing serious, we waited for a new tooth. Two new teeth later, the diarrhea continued.

Months later, the pediatrician showed more concern. It could be a stubborn bacteria, an intestinal parasite, or a food allergy or intolerance. He referred us to a pediatric gastroenterologist (PG) at a reputable hospital in Chicago. I made an appointment, expecting a prescription to quickly make it all better. How wrong I was!

In the PG’s waiting room were some very ill children. I chatted with one woman whose eleven-month-old son had just had his colostomy reversed. I kept thinking, "My daughter doesn’t belong here — it’s just a little diarrhea."

The PG suggested some blood work, a hydrogen breath test, and an endoscopic intestinal biopsy. The thought of having my baby put to sleep to insert a tube down her throat to biopsy her intestines was too much for me to bear! We compromised on blood tests and the painless breath analysis. (Since humans don’t normally have hydrogen in their breath, a positive test result would indicate the presence of bacteria or parasites.)

At the next appointment, they repeatedly sampled her breath through a plastic tube near her nostril. Then her blood was drawn for a number of tests. We nervously waited more than a week for the results. Because of an "early peak of hydrogen" in her breath, the PG was sure it was a parasite. She was also anemic and lactose intolerant. He prescribed a regimen of anti-parasitic medicine, a lactic acid supplement, and an iron supplement.

Alison swallowed the foul-tasting medicines like a real trooper. When she developed hives from it, the PG prescribed a different medicine. But, the day before we were to leave on vacation, she developed hives again; I had the PG paged. He told us to discontinue the medication, "Enjoy your vacation, and call me when you get back."

We tried a succession of anti-parasitics and antibiotics. As the months dragged on, Alison endured test after test for various serious diseases: leukemia, cystic fibrosis, ulcerative colitis. After each procedure we started our vigil waiting for the results. Each time the answer was negative, and we’d breathe a sigh of relief.

Alison, now twenty-seven months old, was going downhill fast. She had not grown in six months, and was losing weight. I enriched her diet by switching to a whole wheat bread and sprinkled wheat germ on everything she ate. She was listless, and often irritable. Her skin was pale, yellow, and covered in bruises. She had dark rings under her eyes. Her stomach was bloated, and her arms and legs were stick thin.

Greg and I were getting tired of changing three or four dirty diapers a day. We wanted an answer, and we wanted it now. Tearfully, I laid it on the line with the PG. He arrogantly said, "I treat sick children here! Except for the inconvenience of changing dirty diapers, there probably isn’t anything really wrong with her. If you would just relax, your daughter wouldn’t have to be sick like this." As a mother, I knew something was wrong with my daughter, and it wasn’t because I was nervous! We stormed out, determined to find an answer.

The only other PG on our insurance plan was an hour’s drive away. Pediatric gastroenterologist number two’s rapid, heavily-accented English was hard to understand, but she seemed to know what she was doing. She recommended a blood test to see if Alison’s body was absorbing the nutrients from the food she ate. Normal is an absorption rate that measures from twenty to forty. Alison’s was only twelve. Alison had a malabsorption problem, and there was only one way to find out why: an intestinal biopsy.

At the hospital, Alison screamed while they inserted the IV in her tiny vein. I felt like a traitor: she didn’t understand what was going on. They gave her an injection to make her "fall asleep." But when I left the room, I heard Alison crying "Nooooo! Stop it!"

They let me hold Alison while she slept off the anesthesia. I was warned, "They always wake up crying. But the drugs have an amnesiac effect. She won’t remember anything." We went home and waited for the results. A week later that fateful phone call changed our lives.

"I don’t know how to tell you this," PG number two said.

"Oh no!" I thought. "My baby’s dying!"

"I usually draw a picture. How can I describe it over the phone?" The problem was her non-native English, not the dire nature of my daughter’s health. "Her intestines are completely flat. She has no villi." The villi are tiny finger-like projections in the intestines that absorb vitamins, nutrients and water. Without villi, my daughter was slowly starving to death. "She has Celiac Disease."

"What do I do?" I asked.

"Just don’t feed her wheat." If only it was that simple!

Cause and Effects

Celiac Disease is an inherited condition, also known as Celiac Sprue, or Gluten Intolerance. Those of European ancestry are more prone than other groups. Because its symptoms can vary, it often goes undiagnosed in Americans; statistics show that 1 in 2,500 have the disease, but some research indicates the frequency may be as high as 1 in 154.

In order to "get" Celiac Disease three things must be present: genetic potential, gluten in the diet, and a "trigger": intestinal infection, surgery, pregnancy, allergic reactions, even psychological stress. Celiacs lack certain enzymes to digest gluten (a protein found in wheat, rye, barley, and oats), which destroys the vulnerable villi. Without villi, the undigested food ferments within the intestines causing painful bloating, distention, diarrhea, constipation, and vomiting. Left untreated, Celiac Disease causes anemia, vitamin deficiencies, bone pain, muscle wasting, and fatigue; it can be life threatening. Celiacs must strictly avoid gluten the rest of their lives.

Some sources of gluten are easy to detect: breads, pastas, cookies, crackers, cakes, breaded foods, etc. But gluten is often hidden in the most innocent of foods. Hydrolyzed vegetable protein (found in broth, soup, and bouillon); caramel coloring (in candy, cola, and snack food); malt, malt flavor, and malt syrup (made from barley); and most marinades, gravies, and cream sauces are out of the question. Some companies dust their products with wheat flour to keep them from sticking, and they are not required to report it on the label.

Envelopes and stamps contain gluten. Many prescription and over-the-counter drugs contain gluten. Some Celiacs are so sensitive they react to gluten in make-up and shampoo. Celiac children also have to be careful when using paste, glue, and play-clay.

I called several Celiac societies, looking for reassurance that our lives would return to normal. But instead I learned Celiacs had a higher chance of getting diabetes, osteoporosis, fertility problems, lupus, dermatitis herpetiformis (an itchy skin rash), intestinal cancer, or non-Hodgkins lymphoma.

While grateful that Alison’s illness required no daily shots or painful treatments, I hated what was happening. I wanted someone to tell me when I would feel in control again. I felt abandoned by doctors who couldn’t tell me what to feed my child. It irritated me when the pediatrician told of his research on Celiac Disease in Ireland. If he was so familiar with this condition, why had it taken more than a year to get a diagnosis? I was frustrated that manufacturers were not required to list ingredient sources on their labels. I was outraged when a dietician badly advised that "a little malt syrup can’t really be that bad for her"!

I felt guilty enjoying delicious foods that were poison to my daughter. I kicked myself that we didn’t agree to the endoscopy at the first visit. I wanted to take back every grain of wheat germ I had made her eat.

I felt like I was in a trance. If anyone asked me how I was doing, the whole story would gush out. A week after the diagnosis, I attended a professional conference. Colleagues’ eyes glazed over as I babbled endlessly about my daughter’s new diet.

But the gluten-free diet worked! After only a few weeks, Alison, now two-and-a-half, had "normal" bowel movements. Finally able to potty train, she caught on quickly. She gained weight, became cheerful and playful again. When she was three, we carefully chose a preschool that could flexibly deal with her gluten-free diet.

Coping, Improving

Gradually, slowly, life did return to a normal pattern. I found gluten-free recipes that we all enjoy. I bought a breadmaker to make delicious gluten-free breads, using combinations of rice, potato, and tapioca flours.

On weekends we bake bread, muffins, pizza, and cookies. I order foods through gluten-free Web sites. A special "gluten-free cabinet" allows Alison to help herself. We bought two cutting boards, two colanders. One slot in the toaster was designated gluten-free. Alison brought her own gluten-free cupcakes and pizzas to birthday parties. She packed a gluten-free snack for outings and a gluten-free lunch for school. On vacation, we secured a kitchen so we could cook her foods.

Visits to restaurants require many questions about how foods are prepared. We bring our own salad dressings, soy sauces, breads, and rolls. At fast food restaurants, she orders "Just the meat and cheese, no bun please." We joke that if the server doesn’t ask, "No what!?", the order will be wrong. One time Alison was served just the bun with ketchup on it!

Friends and family have been wonderful. They listened when we were discouraged, and cheered as Alison recovered. They served gluten-free lunches at playgroup. They even ordered gluten-free ice cream cakes for their own children’s birthday parties. Relatives have made gluten-free pierogi, kolacky, and even ravioli for Alison.

We respected the serious nature of this medical condition, but we were determined that Alison would grow up normally, and not a "poster child." We told her she could do everything any other child could do, she just couldn’t eat certain foods.

In a way, Alison is lucky. She was so young when diagnosed that she doesn’t remember what wheat bread tastes like. Older children often have trouble accepting the radical change in their diet. Also, her symptoms are milder than many. She never needed hospitalization or to be tube-fed. Some Celiacs cannot tolerate rice, soy, or potatoes. Many cannot digest yeast, eggs, or milk. Some are so sensitive that one bite of wheat causes uncontrollable vomiting. Many Celiacs also suffer from diabetes or have life-threatening food allergies. Alison does not.

Still, Alison has put up with more disappointments than most eight-year-olds. Television commercials remind her of foods she can’t eat. Often, she watches as her friends eat treats. We can’t predict when a well-meaning person will bring pizza to an event. She can’t understand why a company would start adding pasta to her favorite soup.

In first grade Alison began to complain that she didn’t want to eat "different." When I talked to her class about Celiac Disease, one boy asked how she felt when others were eating foods she couldn’t have. "I feel left out and bad inside." She needed to meet other Celiac children, so I started "The Gluten Free Gang." Another woman volunteered as co-leader. Her daughter Pam and Alison became fast friends. Pam, three years older than Alison, is a role model for milestones Alison has yet to pass.

Six years later, Alison is growing like a weed. She knows what she can eat and what she must avoid. She has a sunny personality and makes friends easily. Dealing with the frustrations of this disease has made her extremely resilient and able to roll with the punches.

As she gets older, Alison will have to assume more responsibility for her own eating. She will be confronted with sleepovers and summer camps. I wonder how she will cope during those difficult teen years when most kids do not want to be "different." How will she deal with impromptu trips for pizza with friends? Will she rebel and go off her special diet? We pray she will eat mindfully and make healthy choices, so being gluten-free will not be a struggle. But we are happy to see how she has managed herself so far.

In addition to co-leading The Gluten Free Gang, Amy Grabowski is a psychotherapist and the director of The Awakening Center’s Eating Disorder Treatment Program in Chicago.

Resources

Here are several resources for people with Celiac Disease. Groups geared mainly for Celiac adults often don’t meet the different needs of Celiac children and their parents. The Gluten Free Gang meets several times a year, providing activities and gluten-free snacks for the kids, while the parents share recipes, resources, support, and coping strategies.

The Gluten Free Gang, Celiac Sprue Association/Greater Chicago, P.O. Box 93, Arlington Heights, IL 60006; 847-255-4156

Celiac Sprue Association/USA, P.O. Box 31700, Omaha, NE 68131-0700; 402-558-0600

Gluten Intolerance Group, 15110 10th Ave. SW, Suite 1, Seattle, WA 98166-1820; 206-325-6980; gig@accessone.com

Celiac Disease Foundation, 13251 Ventura Blvd., Suite 3, Studio City, CA 91604-1838; 818-990-2354; cdf@celiac.org

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